Reflexive Person-centeredness
A multi-methods study of perspectives of the dementia- friendly hospital
PhD Thesis Annemarie Toubøl
2021 Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark Department of Geriatric Medicine, Odense University Hospital, Svendborg Health Sciences Research Center, UCL University College Geriatric Research Unit, Department of Geriatric Medicine, Odense University Hospital
PHD THESIS Reflexive Person-centeredness. A multi-methods study of perspectives of the dementia-friendly hospital. Annemarie Toubøl, PhD student, MScN
OFFICIAL OPPONENTS Lotte Evron, Associate professor, PhD, University College Copenhagen, Nursing and Health Care, Department of Public Health, Faculty of Health, Aarhus University Lisbeth Porskrog Christiansen, Professor, PhD, Department of Health and Caring Science, Faculty of Health and Occupational Studies, University of Gävle, Sweden Jette Thuesen (Chairman), Senior Researcher, Post Doc., PhD, Department of Clinical Research/REPHA Danish Knowledge Centre for Rehabilitation and Palliative Care, Faculty of Health Sciences, University of Southern Denmark, Odense University Hospital
SUPERVISORS Lene Moestrup, PhD, Health Sciences Research Center, UCL University College Jesper Ryg, Professor, PhD, Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Geriatric Research Unit, Department of Geriatric Medicine, Odense University Hospital Katja Thomsen, PhD, Geriatric Research Unit, Department of Geriatric Medicine, Odense University Hospital Dorthe Susanne Nielsen (Main supervisor), Professor, PhD, Department of Clinical Research, Faculty of Health Sciences, University of Southern Denmark, Geriatric Research Unit, Department of Geriatric Medicine/Migrant Health Clinic, Odense University Hospital
Correspondence: Annemarie Toubøl, [email protected], Phone +45 26812984
ACKNOWLEDGEMENT
This thesis is a result of joyful, hard, challenging, serious, and exiting work during the last three years. In these few years, I have learned a lot about research, cooperation, and myself. My learning outcome has only been possible because of support and help from many people whom it will not be possible to thank individually. First, thanks to all the participants who showed me confidence and shared their perspectives with me. I am forever grateful. Without you, my study would not have been possible Thanks to the former Head of Research at Health Sciences Research Center, UCL University College, Poul Bruun who believed in me and paved the way for this study. Thanks to my supervisors Dorthe S. Nielsen, Katja Thomsen, Jesper Ryg, and Lene Moestrup: Your knowledge, research expertise, and clinical expertise served as trustworthy guidance throughout the study. I owe an extended gratitude to Dorthe S. Nielsen: I am forever grateful for your support, for private and professional talks face-to-face, face-time, stand-up-paddle-time, or phone calls. It has meant a lot to me. Thanks to the Department of Geriatric Medicine, Odense University Hospital, Svendborg: Søren Jakobsen, Janeke Espensen, Mette Foldager, Søren Gam, and Marie Løvberg. I couldn´t have dreamed of a better clinical affiliation. Thanks to Dennis Lund Hansen. Your excellent statistical support saved me. Thanks to my employers at UCL University College: Britta Bang Larsen and Birgitte Roldsgaard Hansen. Your support, encouragement, and interest has meant a lot to me. Thanks to my colleagues and PhD fellows at UCL University College. Thanks for encouragement, discussions, and pep-talks when I needed it the most. Thanks to fellow PhD students at SDU. A special thanks to Laila Twisttmann Herborg Bay, thanks for joining me at courses and travels, I have enjoyed our private and professional talks. Finally, yet importantly, I owe a great thank for the interest and support I have gained from family and friends. To my brother Søren, thank you for your curious and theoretical questions and discussions. To my nearest and dearest family: Thank you for your love. To Jesper, your support, patience, and encouragement have meant more than you know. To Malthe, Sille, and Karl, I have been looking forward to paying more attention to all of you. Thank you for accepting and respecting my work down stairs.
Annemarie Toubøl, January 2021
ORIGINAL PAPERS Paper 1 Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., Nielsen, D.S. (2020). “Even Though I Have Dementia, I Prefer That They Are Personable”: A Qualitative Focused Ethnography Study in a Danish General Hospital Setting. Global qualitative Nursing Research, SAGE, https://doi.org/10.1177/2333393619899388
Paper 2 Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., Nielsen, D.S. (2020). Stakeholder perspectives of the dementia-friendly hospital: A qualitative descriptive focus-group study. Dementia, SAGE, https://doi.org/10.1177/1471301220947848
Paper 3 Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., Hansen, D. L., Foldager, M., Jakobsen, S., Nielsen, D.S. (20XX). The impact of an education intervention on the approach of hospital staff to patients with dementia in a Danish general hospital setting. An explanatory sequential mixed methods study. Nordic Journal of Nursing Research, SAGE, in review, submitted 07.01.2021
FINANCIAL DISCLOSURE This PhD study has been funded by: Health Sciences Research Center, UCL University College Department of Geriatric Medicine, Odense University Hospital, Svendborg
KEY DEFINITIONS AND ABBREVIATIONS Patient with dementia: The term ‘patient with dementia’ refers in this thesis to inpatients or outpatients diagnosed with dementia and being in hospital. The reason for hospitalization can be caused by either the dementia diagnosis or other conditions of chronical, acute, or sub-acute character. General hospital staff: The term ‘general hospital staff’ or ‘hospital staff’ refers in this thesis to all employees at a general hospital and includes all staffing groups, professions, and occupations.
OUH: Odense University Hospital PBL: Problem Based Learning DeFHEAQ: Dementia-Friendly Hospital Education Assessment Questionnaire IQR: Inter Quartile Range T0, T1, T2: Pre-intervention, one-month post-intervention, five-month post-intervention
LIST OF TABLES Table 1: Block search strategy Table 2: Inclusion and exclusion criteria Table 3: Overview of the study Table 4: Participant characteristics Sub-study 1 Table 5: Participant characteristics Sub-study 2 Table 6: Participant characteristics, quantitative part Sub-study 3 Table 7: Participant characteristics, qualitative part Sub-study 3 Table 8: Example of code generation in Sub-study 2
LIST OF FIGURES Figure 1: Flowchart of development and validation of DeFHEAQ Figure 2: Early thematic map Sub-study 2
Table of Contents 1.0 Introduction ...... 3 2.0 Background ...... 4 2.1 Dementia ...... 4 2.2 Political strategies and guidelines ...... 4 2.3 Hospitalizations of people with dementia ...... 5 2.4 The term dementia-friendly and its application to hospital ...... 7 2.5 Literature search ...... 8 2.6 Review of literature ...... 9 2.6.1 Patients’ perspectives of hospitalization ...... 9 2.6.2 Dementia-friendly hospitals...... 12 2.6.3 Dementia education in hospital settings ...... 15 Summary of background knowledge and review of literature ...... 18 3.0 Aim and research questions ...... 18 4.0 Setting ...... 19 5.0 Scientific framework ...... 21 5.1 Ontological and epistemological assumptions ...... 21 5.2 Methodology ...... 22 5.3 Overview of the study and sub-studies...... 23 5.4 Methods ...... 25 5.4.1 Qualitative methods ...... 25 5.4.1.1 Focused ethnography (Sub-study 1) ...... 25 5.4.1.1.1 Observation tool (Sub-study 1) ...... 26 5.4.1.1.2 Recruitment and participants (Sub-study 1) ...... 27 5.4.1.2 Focus groups (Sub-study 2) ...... 28 5.4.1.2.1 Interview guide (Sub-study 2) ...... 29 5.4.1.2.2 Recruitment and participants (Sub-study 2) ...... 29 5.4.2 Mixed methods (Sub-study 3) ...... 31 5.4.2.1 Explanatory sequential design ...... 31 5.4.2.2 Questionnaire (Sub-study 3, quantitative) ...... 32 5.4.2.2.1 Recruitment and participants (Sub-study 3, quantitative) ...... 36 5.4.2.3 Semi-structured interviews (Sub-study 3, qualitative) ...... 36
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5.4.2.3.1 Interview guide (Sub-study 3, qualitative) ...... 37 5.4.2.3.2 Recruitment and participants (Sub-study 3, qualitative) ...... 37 5.4.3 Analytical approaches in the three sub-studies ...... 39 5.4.3.1 Abductive reasoning in Sub-study 1 ...... 39 5.4.3.2 Thematic analysis in Sub-study 2 and qualitative phase in Sub-study 3 ...... 41 5.4.3.3 Descriptive and non-parametric statistics in quantitative phase in Sub-study 3 ...... 47 5.5 Ethical considerations...... 48 6.0 Results ...... 51 6.1 Results from Sub-study 1 (Paper 1) ...... 51 6.2 Results from Sub-study 2 (Paper 2) ...... 52 6.3 Results from Sub-study 3 (Paper 3) ...... 53 7.0 Discussion ...... 54 7.1 Awareness of how to sustain personhood ...... 57 7.2 Awareness of relations ...... 62 7.3 Awareness of the guiding discourse ...... 65 7.4 Methodological considerations...... 69 7.4.1 Methodological considerations regarding choice of methods ...... 69 7.4.2 Methodological considerations regarding recruitment and participants ...... 71 7.4.3 Methodological considerations regarding data collection ...... 73 7.4.4 Methodological considerations regarding analysis and results ...... 76 7.4.5 Methodological considerations regarding mixed methods integration ...... 80 7.4.6 Methodological considerations regarding generalizability and transferability ...... 81 8.0 Conclusion ...... 82 9.0 Implications ...... 84 9.1 Implications for practice ...... 84 9.2 Implications for future research ...... 86 10.0 English summary...... 89 11.0 Danish summary ...... 92 12.0 References ...... 96 Appendices Papers
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1.0 Introduction
This thesis elaborates on knowledge about the dementia-friendly hospital and represents the perspectives of people with dementia, selected stakeholders, and general hospital staff.
Since Odense University Hospital (OUH) constituted the setting and foundation for the PhD study, the overall assumption behind this PhD study derives from the core values of OUH, which states
‘patient first’ as a premise for patients during hospitalization. The idea for the PhD study originates from the Department of Geriatric Medicine, OUH, Svendborg. In 2017 Svendborg Hospital, OUH was designated to be a test hospital with the aim of becoming a dementia-friendly hospital. This designation is related to The National Dementia Action Plan 2025 published by the Danish
Government in 2016 (Ministry of Health, 2017). The central values in the national action plan are described as improving and assuring that people with dementia live a safe and dignified life no matter the context and health issues and that people with dementia are met with a holistic and individual approach. Among the several initiatives described to improve the lives of people with dementia, two specific initiatives are related to Svendborg Hospital’s ambition of being dementia- friendly: attempting to develop dementia-friendly hospitals (Initiative 18) and the development of practice-oriented competencies in the area of dementia (Initiative 22) (Ministry of Health, 2017).
The PhD study was closely connected to the implementation of a large-scale dementia-friendly education intervention at Svendborg Hospital based on the above-mentioned initiatives. This connection facilitated an exchange of knowledge of mutual benefit to the PhD study and to clinical practice. Further, the linkage to the above-mentioned political and organizational objectives and values constituted the overall frame, context, and planning of the PhD study.
Three empirical studies set the basis for the PhD study presented in this thesis.
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2.0 Background
2.1 Dementia Dementia is an umbrella term for diseases that influence cognitive functioning, with Alzheimer´s being the most prevalent and includes Vascular Dementia and Lewy Body Dementia just to mention a few of many dementia diagnoses. The symptoms of dementia are associated with cognitive impairment to an extent that complicates independency in everyday life (Alzheimer’s Association,
2019). Worldwide, the number of people living with dementia is estimated to be 50 million (C.
Patterson, 2018). In Denmark as well, the number of people diagnosed with dementia aged 65 years and above is increasing and totaled about 36,000 in 2015 (Taudorf et al., 2019). However, the total number of people living with dementia in Denmark is currently estimated to be 89,000 (Nationalt
Videncenter for Demens, n.d.).
2.2 Political strategies and guidelines Strategies for meeting the needs of people with dementia are widespread internationally
(Department of Health, 2016; Ministry of Health and Care, 2016; C. Scerri, 2015; The Scottish
Government, 2017). These strategies, concentration on improving life conditions of people with dementia, are also acknowledged in the NICE guidelines, which recommend increased focus on the care and treatment of people with dementia (National Institute for Health and Excellence, 2018).
The increasing focus on dementia and within dementia-friendly hospitals in policy guidelines is visible, for example, in the Dementia Friendly Hospital Charter in UK, which describes initiatives to be implemented in all hospital settings (Dementia Action Alliance, DAA, n.d.). In Denmark, the
National dementia action plan serves as guidance for the development of dementia-friendly hospitals (Ministry of Health, 2017) and describes a wide range of initiatives to be implemented to create a more dementia-friendly society.
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2.3 Hospitalizations of people with dementia The 2020 Lancet Commission report showed that people with dementia have a higher admission rate to hospitals than people without dementia (Livingston et al., 2020). Similarly, people with dementia are more often admitted to hospitals than people without dementia in Denmark
(Sundhedsdatastyrelsen, n.d.). Due to the comorbidities often associated with dementia (Bunn et al.,
2017) and the decline in cognitive abilities, among many other difficulties, hospital stays for people with dementia often result in an increased vulnerability during admission and a deterioration of health status (Nationalt Videnscenter for Demens, 2020; Prince & Karagiannidou, 2016).
Additionally, unintentional events such as falls, pressure ulcers, and weight loss are described as being common for patients with dementia during hospitalization because of misinterpreted behavior. This is described as ‘cascade iatrogenesis’ and results in a decline in physical and psychological functioning following hospital admissions (Butcher, 2018).
The hospitalization of people with dementia has gained increased interest in research in the last few decades. This research indicates that the care of patients with dementia is suboptimal and that this is often carried out with a heavy emphasis on routines and medical tasks (Digby et al., 2017; Innes et al., 2016; Jurgens et al., 2012). A literature review by Dewing and Dijk reports that hospitalization has multi-facetted, mostly negative consequences for people with dementia (Dewing & Dijk, 2016).
The review states that the current status is discouraging, with findings pointing to a task-focused hospital system and a culture of care that emphasizes routine over person. Moreover, it is evident that hospitalization of people with dementia raises far-reaching challenges for patients with dementia, their relatives, and hospital staff because of opposing discourses, which leave patients and relatives on the sidelines and hospital staff with a need for knowledge and skills (Dewing &
Dijk, 2016). These findings are supported in newly conducted reviews investigating multiple perspectives of hospitalization of people with dementia (Beardon et al., 2018; Burgstaller et al.,
2018; Gwernan‐Jones et al., 2020; Reilly & Houghton, 2019; A. Turner et al., 2017), which
5 summarize that hospital admission of people with dementia is an issue of concern for patients, relatives, and hospital staff. Regarding the perspectives of patients with dementia, a qualitative meta-synthesis found that despite a growing focus on dementia and improvement of care and treatment in hospital settings, patients’ perceptions of being in hospitals include being treated in a task-orientated way in a busy and stressful setting. Additionally, the results point to a lack of a person centered, individualized approach and the feeling of being disrupted from normal routines followed by an increased dependency on others (Reilly & Houghton, 2019). From the perspective of relatives, a systematic review reports that relatives often find hospital care unsatisfying with a lack of dignity for patients with dementia and insufficient in handling the basic needs of these patients (Beardon et al., 2018). This is supported in a qualitative meta-synthesis aimed at synthesizing relatives’ experiences of having a relative with dementia admitted to hospital. The findings of this synthesis describe relatives’ experiences in terms of positive and negative cycles, with a predominance of negative cycles that entail failed expectations and a task-orientated approach with minimal focus on building a trusting relationship with the patient with dementia
(Burgstaller et al., 2018). The experience of hospital staff caring for patients with dementia in general hospitals is synthesized in a qualitative meta-synthesis. This synthesis shows that hospital staff lack skills and knowledge in dementia care and that they find it challenging to deliver person- centered care due to the organizational structure in the hospital setting, resulting in negative attitudes towards patients with dementia (A. Turner et al., 2017). Additionally, results from a systematic review and evidence synthesis broaden the insights from Turner et al. (2017) by including studies from a broad range of settings representing staffing groups from many professions
(Gwernan‐Jones et al., 2020). The study of Gwernan-Jones et al. (2020) indicates a need for institutional changes if person-centered care is going to be prioritized along with medical care. They argue that even though hospital staff rate person-centered care as the best way to care for patients
6 with dementia, these staff experience conflicts in care because of combatting discourses about care in the hospital context.
2.4 The term dementia-friendly and its application to hospital
The term ‘dementia-friendly’ aligns with the term ‘age-friendly’ and describes initiatives in society
(World Health Organization, n.d.). However, the addition of the word ‘hospital’ to the term creates a more narrow focus than the broad term of age (N. Turner & Cannon, 2018). The term dementia- friendly is most often used when initiatives and interventions aiming to improve awareness of dementia and include people with dementia in elements surrounding their lives are described. In health care settings, the focus on dementia-friendliness is equivalent to care and treatment that meets the needs of patients with dementia (Lin & Lewis, 2015). However, the use of the term dementia-friendly to involve only persons with dementia has been challenged because it may exclude considerations about how to include the person with dementia and meet the needs of the unique person and how to view persons with dementia as true contributors (Lin & Lewis, 2015).
Nevertheless, the term dementia-friendly represents a shift in the understanding of dementia and the approach to people with dementia going from a biomedical and deficit-centered narrative to a more inclusive and person-centered approach (Hebert & Scales, 2017; Lin & Lewis, 2015). This shift is recognized in the arguments for developing dementia-friendly hospitals, which describes the complex needs of patients with dementia, the increased vulnerability caused by the cognitive impairment, and a deterioration of health status following hospital admissions (Nationalt
Videnscenter for Demens, 2020; Prince & Karagiannidou, 2016). The term ‘dementia-friendly hospital’ has evolved over the last few decades since it was first mentioned in literature in the 1990s
(Silverstein & Maslow, 2005). However, the term is still not well defined, and research about the definition and operationalization of the term is suggested if dementia-friendly initiatives are going to succeed (Hebert & Scales, 2017).
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Despite the growing interest in dementia-friendly hospitals worldwide, a shared pathway of dementia-friendliness in hospitals is lacking (Reilly & Houghton, 2019) . Consequently, it seems that hospitalized patients with dementia could benefit from future research that includes diverse perspectives. Such research might serve as a foundation for the creation of dementia-friendly hospitals and provide a more detailed description of the term dementia-friendly hospital. An important contribution would be based on the perspectives of patients with dementia as the inclusion of their perspectives is necessary to shaping the directions of dementia-friendliness in hospitals (Digby & Bloomer, 2014; Prato et al., 2018; Rivett, 2017; Røsvik & Rokstad, 2020; A.
Scerri et al., 2018). Another significant element to address is that of educational initiatives as this approach seems to respond to the needs of patients with dementia, their relatives, and hospital staff
(Annear, 2020; Marx et al., 2014; Røsvik & Rokstad, 2020; Schneider et al., 2019).
2.5 Literature search A literature search was conducted to gain a deeper understanding of the existing knowledge and to identify gaps that need further attention in enlightening dementia-friendly hospitals. The search strategies were aimed at locating knowledge about ‘the perspective of patients with dementia of hospitalization,’ and ‘dementia-friendly hospitals,’ and ‘educational interventions about dementia in hospital settings.’
Literature was searched and identified continuously from October 2017 to December 2020. A block search strategy was developed (Table 1). Free-text keywords (All Fields and TX) and thesaurus
(MeSH Terms and Subject Heading (MH)) combined with the Boolean operators AND/OR were used in the databases CINAHL and PubMed. During the development of the search strategy, a research librarian assisted. An extended illustration of keywords and the combination of blocks is
8 shown in Appendix 1. To broaden results of the searches ‘citation pearl growing’ was used to identify more related and relevant literature (Heneghan, R. N. Pearce‐Smith. et al., 2013).
Table 1: Block search strategy
Blocks Search 1 Search 2 Search 3 Boolean operator OR Boolean operator Boolean operator Boolean operator within Blocks AND to combine AND to combine AND to combine Blocks Blocks Blocks 1. Dementia X X 2. Hospital X X X 3. Dementia-friendly X 4. Initiative X 5. Patient experience X 6. Education X
Limits:
Literature published within the last 10 years to get an overview of the contemporary knowledge base. The literature search results were screened with the inclusion and exclusion criteria shown in
Table 2.
Table 2: Inclusion and exclusion criteria
Inclusion criteria Exclusion criteria - English language - Nursing homes, residential care, long- - Dementia term care, primary care, community, - Hospital setting general practitioner, hospice - Patient perspective (Search no. 1) - Dementia friendly (Search no. 2) - Education (Search no. 3)
2.6 Review of literature
2.6.1 Patients’ perspectives of hospitalization An interesting finding that emerged when searching for literature concerning hospitalization experiences of people with dementia was that this perspective is mostly explored from the perspective of relatives or health care professionals, also acknowledge in the meta synthesis by
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Reilly and Houghton (2019). This is not surprising, since a general opinion about people with dementia is that they are not being able to contribute because of their cognitive impairment (Lepore et al., 2017). With the aim of describing the experiences of patients with dementia in as much detail as possible, the following review of literature includes studies representing the patients’ perspective as well as studies representing this perspective as perceived by patients and others.
When reporting the experiences of hospitalizations in patients with dementia, studies mostly report negative feelings. This is not surprising as findings from a recent meta synthesis about the perspective of older patients in hospitals by Bridges et al. (2020) found that patients with dementia are more likely to have negative experiences of hospitalizations because of increased vulnerability.
The negative feelings dominate the findings of studies that are mentioned below, which report themes related to a medical model being used as the philosophy of care, and drawing a clear picture of a discrepancy between the care that is highly valued by patients with dementia (Digby &
Bloomer, 2014) and the way these patients are met in hospitals. In the study of Digby et al. (2012), patients with dementia are interviewed about their experiences of the transfer from an acute to a sub-acute hospital in Australia, which revealed that patients experienced a feeling a loss of control and of being excluded from decisions about care. Consistent in the patients’ experiences was a lack of a desired person-centeredness and feelings of being addressed with a sense of being patronized by staff as a patient. The findings of a multimethod study from Malta by Innes et al. (2016) showed that although staff think that they take a person-centered approach to care, this is often incongruent with the experiences of patients with dementia, who feel a lack of dignity in care. Additionally, findings from an integrative review by Digby et al. (2017) report that patients with dementia feel stigmatized because of their dementia diagnosis and an overall focus on medical conditions and physical needs. Reporting the results from an ethnographic study with a qualitative approach in
Australia, Digby et al. (2018a) introduced the term ‘liminality’ to describe how patients with
10 dementia experience being in the hospital. The liminal experience includes feelings of being ignored, feeling unsettled, being excluded from care decisions, and lacking supportive relationships with the staff, resulting in feeling overlooked as a person and treated in a merely task-orientated way. Similarly, a qualitative case study in the UK by Prato et al. (2018) found that patients’ negative experiences were related to being ignored in a kind but functional manner. An ethnographic study by Jensen et al. (2018) explores the perspectives of patients with dementia in a
Danish hospital setting. The results resonate with this tendency, reporting that patients with dementia strive to be involved, but that the unfamiliar environment and the difficulties of understanding what is going on lead to the patients’ feelings being overlooked as the ‘system world’ represented by the hospital places little attention on the inclusion of the patients’ life world. In another qualitative study, Petry et al. (2019) examined the experiences of patients with cognitive impairment and their relatives in acute hospital settings in Switzerland. Although the results from the study represents the experiences of patients and relatives, the perspectives of both groups seem to be congruent and indicate an experienced inconsistency between care delivery and care needs.
Finally, findings from a meta synthesis of Reilly and Houghton (2019) summarizing the experiences of patients with dementia of being in hospital from studies (beyond the studies referred to above) confirm that patients’ experiences depict an overall medical model as the philosophy of care, resulting in task-driven and paternalistic approaches that neither acknowledge the person nor value the patient’s autonomy.
However, some of the above-reviewed studies also revealed that the experiences and views from patients with dementia sometimes lead to positive feelings regarding hospital stays and the associated care and treatment. These positive feelings were described as feeling more relaxed and safe when staff take the time to create a relationship (Digby et al., 2017). Experiences of being involved and empowered through the staffs’ communicative skills resulted in feelings of being
11 recognized as a person (Prato et al., 2018) and feeling valued as a person when included in routine ward work (Reilly & Houghton, 2019). Furthermore, one study reported that patients with dementia experienced moments of person-centeredness in care situations, though rare, and this experience was perceived as positive (Petry et al., 2019).
As the above-reviewed studies reveal, negative feelings seem to characterize most of the experiences of patients with dementia during hospital stays. However, it is difficult to determine the circumstances leading to positive experiences, which leaves a gap in the existing knowledge. Thus, it seems that the encounters between patients with dementia and staff in hospital settings need more attention as suggested in research (Allwood et al., 2017; Prato et al., 2018). A future focus on such encounters from the patients’ perspective will create an enhanced understanding of the mechanisms leading to either negative or positive feelings. Further, a contribution to the existing knowledge base of dementia-friendly hospitals, based on perspectives of patients with dementia is essential. The above-reviewed studies are limited in that they mostly refer to care and therapeutic staff when reporting the perspectives of patients with dementia. Therefore, to broaden the lens and create authentic knowledge, there is need to explore the encounters between patients with dementia and a variety of hospital staff (Featherstone et al., 2019).
2.6.2 Dementia-friendly hospitals Dementia-friendly hospitals have been the subject of increased interest in research within the last 10 years, with a dominant focus on person-centered care as the underlying principle. Most dementia- friendly hospital initiatives concern environmental subjects or educational activities (Hebert &
Scales, 2017). However, different approaches to dementia-friendly initiatives and programs in hospital settings are described in the literature. This literature contributes to the existing knowledge base concerning such initiatives.
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Applying a realist methodology, Handley et al. have made a substantial contribution to the current knowledge about dementia-friendly initiatives and the associated improvements to dementia care in acute care settings (Handley et al., 2015, 2017, 2019). A program theory with explanations of important factors leading to support hospital staff to provide dementia-friendly care was tested in two different hospital contexts in the UK. A key finding was that a dementia-friendly approach to patients with dementia was determined by how dementia care was valued as skilled core work.
Moreover, the empirical test showed that improving dementia care is complex and requires a consistent priority at the clinical and organizational level, and future attention to the alignment of dementia-friendly initiatives to organizational priorities is recommended (Handley et al., 2019).
This recommendation is supported in a meta synthesis of Brooke and Ojo (2017), who found that to enhance dementia-friendly care requires the creation of a common framework for hospital staff through a diversity of dementia-friendly initiatives at the organizational and the clinical level.
Additionally, the work of Parke & Hunter (2017) suggests that to reduce harm to patients with dementia in emergency departments and to improve safety for these patients, a dementia-friendly framework must be the foundation. This framework should include a diversity of initiatives and focus on communication with the involved parties in order to ease emergency department visits.
Continuing the work of Parke & Hunter (2017), Parke et al. (2019) conducted a qualitative study to addresses the improvements required to create a dementia-friendly emergency department. The results of this study, which evaluated the relatives’ perceptions of the usefulness of a ‘hospital readiness communication tool’ (filled out by patients with dementia and their caregivers), point to the tool as a possible mediator to enhanced person-centered care and to interrupt the ‘negative cycles’ as found by Burgstaller et al. (2018). However, concerns about the true patient perspective are raised and also questioned is the tool as a ‘one size fits all’ solution in creating dementia- friendly departments (Parke et al., 2019).
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Additionally, researchers have been investigating the design of dementia-friendly hospitals with regard to environmental issues, the results and recommendations of which point in the same direction as mentioned above. An Irish multi-method study by Xidous et al. (2019) examines the impact of the hospital environment on older people and people with dementia and recommends that perspectives of persons with dementia and important stakeholders be included in designing dementia-friendly hospitals. The findings leading to this recommendation show that hospital settings are stressful and that they are complex to navigate for persons with dementia, which leads to increased disorientation. Similarly, a scoping review of Parke (2017) aiming to systematically map knowledge and evidence about dementia-friendly acute care design reveals sparse knowledge about specific dementia friendly design features. However, subjects such as wayfinding, physical environment, signage, colors, and lightening are found to be important features to consider in dementia-friendly acute care design. Also suggested is the need to evaluate the patients’ perspectives of how dementia-friendly design features impact patients with dementia. This is supported by results from a UK study by Brooke & Semlyen (2019) who suggest that patients’ perspectives of the impact of dementia friendly ward environment could extend the knowledge about the effect of dementia-friendly ward environments. They found that such environments served as a mediator to a calmer atmosphere as well as improvements in patient-staff interactions, and an enhanced possibility to deliver person centered care were also seen. However, some resistance to the changed environment was detected in the staffs’ opinions, and it was therefore suggested that a focus on organizational management change strategies could reduce this resistance.
This suggestion is similarly echoed in the findings of a small-scale mixed methods study in the UK by Eastham & Cox (2017) that aimed to explore how design features of dementia-friendly wards, such as contrast coloring, signage, wayfinding, and self-care activities, impact the care to patients with dementia. Findings pointed toward the challenges of fully integrating dementia-friendly ward
14 principles when these are not always congruent with the priorities of the acute hospital environment.
A few studies explicitly mentioned the creation of dementia-friendly hospitals through educational initiatives (Galvin et al., 2010; Hobday et al., 2017; Palmer et al., 2014). These studies were found in the search for knowledge concerning education initiatives about dementia in hospitals as well and are included in section 2.6.3.
This review of dementia-friendly hospital literature reveals that the evidence base is sparse, but that initiatives are widespread, indicating that some successful implementations have occurred.
Recommendations include the need for future research aimed at coming closer to a definition of the term dementia-friendly hospital (Hebert & Scales, 2017), and this future attention must include the contribution of the patients’ perspectives among relevant stakeholders (Heward et al., 2017; Pascale et al., 2020; Prato et al., 2018; Xidous et al., 2019). Likewise, the reviewed literature suggest that attention be paid to how dementia-friendly as a concept is applicable to hospital settings.
2.6.3 Dementia education in hospital settings
The results from literature search revealed that a number of studies have examined educational initiatives with a focus on dementia in hospital settings. Most studies justify the focus on dementia education with arguments related to concerns about patients with dementia in hospitals (see section
2.3) and the increased focus on dementia in dementia action plans and guidelines nationally and internationally (see section 2.2). Further, studies included to describe the patients perspective suggest that education in dementia care in hospital settings could improve the patients’ experiences of being treated with dignity and feeling respectfully included (Digby et al., 2017, 2018a; Innes et al., 2016; Jensen et al., 2018).
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Most of the reviewed studies report results showing that dementia education and training in hospitals have some effect on how patients with dementia are approached, the ability to understand dementia symptoms, and the delivery of person-centered dementia care, which is also acknowledged in systematic reviews and a narrative synthesis (Gkioka et al., 2020; Karrer et al.,
2020; A. Scerri et al., 2017). In the review of studies, similar findings seem to recur regarding an increased effect of educational initiatives on staffs’ knowledge about dementia, confidence and attitude towards patients with dementia assessed within a short time frame using pretests and posttests (Garrod et al., 2019; Hobday et al., 2017; Jack-Waugh et al., 2018; Karrer et al., 2020;
Moehead et al., 2020; Murray et al., 2019; A. Scerri et al., 2017; Schneider et al., 2020). Thus, researchers have not taken into account factors such as the sustainable effect of dementia education and how learning outcomes are translated in to practice at the organizational level, as these factors are often unanswered and remain unknown (Gkioka et al., 2020). However, a mixed methods study by Hung et al. (2019) conducted in a Canadian hospital setting reports that a specific Gentle
Persuasive Approaches education program targeted at frontline staff led to a more person-centered approach. Nevertheless, recommendations are made regarding an increased focus on factors that enable an understanding of how learning outcomes can be translated into practice in a system- thinking hospital setting are also supported in a meta synthesis, suggesting a need for more knowledge about how education can create a common framework in hospital settings (Brooke &
Ojo, 2017). As the above studies reveal, more knowledge is needed about the sustainable effects of dementia education and within this, the factors that contribute to this process, which must go beyond a measured effect on selected parameters such as knowledge scores.
Even with an increased interest in dementia education among researchers, the reviewed literature shows that a majority of studies include mainly care staff. However, the studies of Hung et al. and
Schneider et al. include the majority of the workforce with a focus on frontline staff (Hung et al.,
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2019; Schneider et al., 2020), and the studies of Garrod et al. and Murray et al. include the entire workforce (Garrod et al., 2019; Murray et al., 2019). The inclusion of a large part of the workforce seems to be an important point to consider as the inclusive approach is shown to foster a more person-centered approach to patients with dementia because of more fruitful discussions among staff about how to deliver the best dementia care (Hung et al., 2019). Several studies repeat the recommendations to include the entire workforce in future studies examining the effect of education concerning dementia (Garrod et al., 2019; Karrer et al., 2020; A. Scerri et al., 2017; Schneider et al.,
2020; Surr & Gates, 2017). Additionally, studies with a narrow focus on specific staffing groups such as radiographers (Carnall & Chianese, 2018) and domestic staff (Ashton & Manthorpe, 2019) argue that ancillary staffing groups and staff from para-clinical departments should be included in education in dementia. This inclusion is needed because of a lack of knowledge and skills among those groups and serves as a main argument since patients with dementia meet and interact with a wide range of professions in different departments during their course of treatment in hospitals
(Ashton & Manthorpe, 2019; Carnall & Chianese, 2018; Karrer et al., 2020; Teodorczuk et al.,
2014).
A few studies have addressed the important elements with regard to the implementation and dissemination of dementia education initiatives in hospitals. In a critical synthesis of evidence, Surr and Gates (2017) report that elements that were important to staff receiving training included introduction to practical tools transferable to the clinical setting, content relevant for hospital staff, classroom teaching with the opportunity to discuss dementia-related challenges with colleagues, and education activities with a minimum duration of one day. These features are supported in a case study from the UK (Surr et al., 2018), which also stresses the importance of focusing on how to disseminate learning outcomes to ancillary staffing groups in order to frame person-centered dementia care throughout the hospital.
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The above review of literature reveals the need to examine the effect of dementia educational training programs and interventions in hospital settings more comprehensively. Even though dementia education initiatives in hospital settings appear to have a promising effect, knowledge about the sustainable effect and impact on practice with regard to dementia-friendliness is sparse.
Consequently, the approaches to such examinations call for a broader than that of the most frequently used before and after assessments. Further, the comprehensive examination of dementia education in hospitals needs to include an interdisciplinary focus, which would yield promising effects in contrast to the education of staff in parallel groups (Brody & Galvin, 2013).
Summary of background knowledge and review of literature The review of literature and background knowledge indicates that despite the increased number of patients with dementia in hospitals and the political requirements for improving hospital stays for patients with dementia and developing dementia-friendly hospitals, knowledge until now is sparse concerning the constitutive elements in improving dementia-friendliness in hospitals. Therefore, the
PhD study that forms this thesis includes: the perspectives of patients with dementia and focuses on encounters with hospital staff; the perspectives of stakeholders regarding the term dementia-friendly hospital; an examination of the impact of a dementia education intervention targeted at general hospital staff.
3.0 Aim and research questions
The overall aim of the PhD study was to generate knowledge about dementia-friendliness in hospitals from the perspectives of patients with dementia and important stakeholders and to generate knowledge about how a dementia education intervention targeted at general hospital staff, impacts dementia-friendliness in hospital settings. The aim involves the following research questions:
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1. How can we understand and conceptualize the encounter between patients with dementia
and a variety of hospital staff in a general hospital setting?
2. How do different stakeholder groups describe their perspectives of the dementia-friendly
hospital?
3. How can qualitative interview data that explore general hospital staffs’ experiences of the
impact of a dementia education intervention explain the self-reported knowledge, attitude,
and competence scores from a quantitative measure?
a. What is the impact of a dementia education intervention on general hospital staffs’
knowledge, attitude and competence?
b. How do general hospital staff experience the impact of dementia education
intervention?
4.0 Setting The hospital setting in Svendborg that framed the study is a small public hospital that is a part of
Odense University Hospital (OUH). The hospital in Svendborg was designated to be the center for the diagnostic evaluation of dementia for all patients referred to OUH for diagnostic purposes. The hospital has approximately 1600 employees and consists of medical and surgical departments, including an acute emergency department. Para-clinical departments such as radiology, clinical chemistry, and service and facility departments are also part of the hospital. The employees represent a great variety of professions. As Svendborg Hospital was designated to be a dementia- friendly hospital, a local project team was set to implement a variety of interventions from initiatives 18 and 22 in the national dementia action plan (Ministry of Health, 2017). Specifically, the initiative 18, which concerns the development of basic competencies among staff (Ministry of
Health, 2017), has influenced the PhD study as this is the central focus of Sub-study 3. The education intervention is described in detail below.
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The local dementia education intervention consisted of three educational levels:
Six dementia experts from the Department of Geriatric Medicine represent level 1 and are characterized by having conducted extra-curricular education concerning dementia. This expert group planned and conducted the education day at level 3 and assisted the project team.
A total of 31 dementia specialists representing all departments at the hospital constitutes level 2 together with all clinical staff at the Department of Geriatric Medicine. These specialists are characterized by having conducted a five-day dementia education intervention facilitated by a national research center and are responsible for facilitating knowledge translation in their clinical settings through Problem Based Learning (PBL) (Neville, 2009).
The educational level 3 is the basic level and is targeted at all employees at the hospital who are nor either specialists or experts. This educational level 3 was implemented over a 26-month period with the attendance of 1215 employees. The level 3 education is a local interdisciplinary one-day education intervention consisting of short presentations about a variety of subjects concerning dementia and group discussions. This level is described in more detail in Paper 3.
A common mandatory element of all levels of education was an e-learning course about patients with dementia in hospitals and the dementia-friendly hospital, which served as a preparation for the education interventions. Additionally, the translation of knowledge into practice and the development of competencies post-education was facilitated by PBL sessions in the local departments, with the dementia specialist as moderator and staff from different professions as participants.
In addition to the above-mentioned educational initiative, the ambition of being a dementia-friendly hospital also included guidance from Initiative 22 (Ministry of Health, 2017). This guidance involved interventions concerning environmental improvement such as better signage, homelike
20 areas in the wards, and more dementia-friendly wall decorations. Initiatives concerning activities for patients with dementia were also implemented such as tool kits with special blankets, various snacks, and an activity involving music. Other initiatives were implemented regarding improvement of medical records and the easy access for all relevant staff to specific information concerning patients with dementia.
5.0 Scientific framework
The overall scientific framework and the methodology and methods used in this study will be presented in this section.
5.1 Ontological and epistemological assumptions
The essential focus of this PhD study was to draw on perspectives from patients with dementia, stakeholders, and hospital staff regarding dementia-friendliness in hospitals. This focus derives from real-world issues concerning patients with dementia in hospital settings; and given these origins, the research questions raised and the design of the research process to be planned were thus determined (Mesel, 2013). As guidance throughout the study, pragmatism framed the philosophical position of the research processes, as characteristic of this position is to address and contribute to the answering of real-world issues (Bacon, 2012). The early thoughts of the philosophy of pragmatism origins from Charles S. Peirce’s work in the late 19th century followed by important contributions from, e.g., William James and John Dewey, who are mentioned among others as the early founders of the philosophy of pragmatism (Brinkmann et al., 2014). Ontologically, the assumptions of pragmatism are that there is no singular reality and that subject-object dualism is rejected (Bacon, 2012; Creswell & Plano Clark, 2018). Key elements in the ideas of pragmatism are associated with experience and cognitive activities with regard to the constitution of the world and human life processes (Hammersley, 1990). Moreover, while representing a central focus on truth
21 and reality as deriving from experiences in the real world, pragmatism holds an empirical perspective on science (Brinkmann et al., 2014; McCaslin, 2008). Epistemologically, pragmatism acknowledges both subjective and objective knowledge. Thus, the assumptions about how to obtain knowledge do not rely on specific methods, but instead the principle of “what works” serves as guidance in choosing the methods that can address the research question and solve the real-world problem (Bacon, 2012; Creswell & Plano Clark, 2018). As an empirical science pragmatism is described as an empirical puzzle in contrast to theoretical problem solving (Brinkmann et al.,
2014).Thus, pragmatism relies on practical reasoning and views knowledge as a socially active construct in and on practice/reality as opposed to knowledge as representing one true reality (Baert,
2013; Kaushik & Walsh, 2019).
5.2 Methodology
Methodologically, pragmatism adheres to the inquiry of a real-world problem through the use of a continuum of methods determined by research questions, as quantitative and qualitative approaches are seen as compatible (McCaslin, 2008). In addition, the lack of methodological consistency in pragmatism serves as a flexible principle, since achieving a complete understanding of a practical problem often demands a multi-method approach to inquiry from multiple perspectives (Hothersall,
2019). With regard to the research questions phrased in this PhD study, different inquiry approaches are requested in order to further extend the possibility of understanding perspectives of dementia- friendliness in hospitals. Therefore, the study comprises two qualitatively-driven studies (Sub-study
1 and 2) and one mixed methods study (Sub-study 3). Endeavoring to capture real-world problems, research build on pragmatism begins by identifying real-world problems, entering this real world to understand the problems in a context, developing knowledge in that context, and empirically testing knowledge or a hypothesis by revisiting practice or including theory (Brinkmann et al., 2014;
Duram, 2010). In keeping with the principles described above, this PhD study strove to manage the
22 puzzlement of empirically searching for knowledge by including the following principles adhering to pragmatism:
Identifying real-world problems
Applying various methods in order to enhance knowledge of the complex real world problem
Searching for knowledge representing truth and reality as defined by multiple perspectives of
human experience
Using practical reasoning and testing
The three sub-studies were conducted sequentially as three separate studies ‘using different methods
‘in order to ‘enhance knowledge of dementia friendliness in hospitals as the complex real-world problem’. All three sub-studies also ‘searched for knowledge representing truth and reality as defined’ by the participants. However, as all sub-studies related to the same real-world problem, the results from the first study identified and generated knowledge from the perspectives of patients with dementia, and this identification informed elements in the second and third studies. Further, the results from this second study traced back to the results of the first study as a sort of ‘practical reasoning and testing’ and contributed to discussions in the third study.
The following sections contain a description of the methods used in the three sub-studies, the analytical approaches, and the ethical considerations and reflect how the principles of pragmatism informed the study.
5.3 Overview of the study and sub-studies
With regard to the emphasis of research questions within the adherence to the philosophical assumptions of pragmatism and the alignment to the contextual core values of OUH stating ‘the patient first,’ the development of knowledge in the study was planned to include the perspectives of persons with dementia as an initial basis. An overview of the study is shown in Table 3. In section
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5.4 the methods of each study are elaborated, followed by a description of analytical approaches and, finally, ethical considerations in general and specific considerations in each study are described.
Table 3 Overview of the study
Study 1 Study 2 Study 3 Time for May 2018–November November 2018–January August 2018–June 2020 data 2018 2019 collection Aims To explore, from the To explore and describe To investigate the patient’s perspective, stakeholders’ impact of a dementia the characteristics of perspectives of a education intervention the encounter between dementia-friendly by examining the self- patients with dementia hospital. reported outcomes of and hospital staff in a general hospital staff variety of general and explaining these hospital settings. outcomes by exploring the staff’s experiences. Research How can we How do different How can qualitative questions understand and stakeholder groups interview data conceptualize the describe their exploring general encounter between perspectives of the hospital staffs’ patients with dementia dementia-friendly experience of the and a variety of hospital? impact of a dementia hospital staff in a education intervention general hospital help explain the self- setting? reported knowledge, attitude, and competence scores from a quantitative measure? Method Focused ethnography Focus groups Explanatory sequential mixed methods design Empirical 10 participants 4 focus groups 849 participants material 17 participants (quantitative) 16 participants (qualitative) Analytical Abductive analysis Descriptive thematic Descriptive statistics approach analysis Non-parametric statistics Thematic analysis Paper 1 2 3
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5.4 Methods
5.4.1 Qualitative methods A qualitatively driven approach (Mason, 2018) was taken in Sub-study 1 and 2 in order to address the empirically phrased research question 1 and 2 and the research question related to the qualitative part of Sub-study 3. Relying on pragmatic thinking, this qualitative way of conducting research allowed the contextual matters of the real world to influence the research process. With the objective of conducting qualitative work as big Q (Kidder & Fine, 1987) this fluid and flexible line gave the explorative characteristics high priority (Mason, 2018); however, the overall guidance by the research questions was sustained.
5.4.1.1 Focused ethnography (Sub-study 1)
In line with the pragmatic principles, we went to the real world to gain knowledge about the reality of the encounter between patients with dementia and a variety of hospital staff as experienced from the patient’s perspective. Focused ethnography observations using the observer-as-participant role
(Higginbottom et al., 2013) were applied in order to address and answer research question 1 (see section 3.0) as an ethnographic approach is considered the best way to capture the patient perspective (Pols, 2005). Focused ethnography relies on the principles of more conventional ethnographic approaches aiming to observe events that people are unable to describe because of the complexity of interactions, actors, feelings, and activities (Kawulich, 2005; Knoblauch, 2005). The ethnographic approach was useful for patients with dementia as these patients often express their experiences both verbally and emotionally and their feelings are directly reflected in their body language. Further, the ethnographic approach provides respect to the memory loss and limited vocabulary that are common in dementia (Goldberg & Harwood, 2013). In addition, specific features such as background knowledge, problem-focused short-time visits in specific contexts, and time intensity, which are characteristic of the focused approach (Higginbottom et al., 2013;
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Knoblauch, 2005), seemed to be suitable as the observer had extended knowledge of the field due to previous experience as an experienced nurse and for patients with dementia with regard to their increased vulnerability. Further, the complex hospital system and the fact that the course for treatment of patients in hospitals often consists of disintegrated parts served as arguments to conduct focused ethnography (Kawulich, 2005; Knoblauch, 2005). In addition to the observations, informal conversations were conducted with the patients with dementia during observations if they were able to have such conversations with regard to their physical and cognitive status.
5.4.1.1.1 Observation tool (Sub-study 1)
An observation tool inspired by Spradley (1980) was used to assure that the characteristics of the encounters were captured as close to the real world as possible and that the empirical data were collected with the same focus no matter the context or involved participants (Appendix 2).
Participant characteristics such as sex, age, and civil status were noted if these data were available.
The observation tool consisted of nine dimensions: space, actor, activity, object, act, event, time, goal, and feeling. These dimensions, which according to Spradley, define social situations
(Spradley, 1980), were used in guiding the observations in order to understand and begin the conceptualization of the encounters between patients with dementia. Furthermore, the tool ensured that the observer (the author of this thesis) was able to pay close attention, to the encounters as this attention according to Atkinson (2015) can create a deeper understanding of the interactions in situations in contrast to a furnished focus on what is done and said. However, despite the systematic approach through the use of an observation tool, the principle of empirically testing according to pragmatism guided a changed awareness during the progress of the observations (Hammersley &
Atkinson, 2007). The first observation sessions revealed that the patient’s perspective of the encounters was especially visible in the field notes made in the rows labeled for descriptions of goals and feelings. Thus, the data collection was dynamic and adhered to the observed world but
26 was still consistently guided by the research question. Aligning with the pragmatic principle of capturing the reality as experienced by the patients with dementia, the observation tool also had a column for the observer’s immediate reflections during observations in order to separate reality and preliminary interpretations as recommended by Higginbottom et al. (2013). This assured that the in- depth written field notes made during observations and informal conversations served as important elements in the reconstruction of situations with a careful distinction made between native terms and analytical notes (Hammersley & Atkinson, 2007).
5.4.1.1.2 Recruitment and participants (Sub-study 1)
Participants were purposively recruited from different hospital departments with the help off gatekeepers. The observer and gatekeepers met regularly when the observer visited departments during morning and afternoon times in the data collection period, in order to discuss potential participants and whether these potential participants could be included. If the participants could be included, the observer visited the participant in the ward or called the participant by phone and introduced herself and the aim of the observations. The only inclusion criterion was that the patients had a dementia diagnosis with no distinction as to type or stage. Exclusion criteria were participants being in life-threatening situations or having severe critical illness. Participant characteristics are shown in Table 4 below.
Table 4 Participant characteristics Sub-study 1
Participant characteristics n=10 Gender - Male 5 - Female 5 Mean age 86 Dementia diagnosis - Alzheimer’s 8 - Vascular dementia 1 - Lewy Body dementia 1
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The observations had a duration from 1 hour to 5 hours and 30 minutes and took place in surgical, medical, and emergency department wards and in outpatient clinics and the department of radiology. Because the observer followed the course of treatment of each patient, observations were made in corridors and elevators as well. The participating hospital staff included a wide range of professions and were informed both verbally and in writing about the purpose of the study and the observations (Appendix 8).
5.4.1.2 Focus groups (Sub-study 2)
The results from the focused ethnography study gave a nuanced insight into how the encounter between patients with dementia and hospital staff can be understood. By adhering to the principles of pragmatism, these analytical interferences served as a basis for exploring dementia-friendliness in hospitals empirically from important stakeholders’ perspectives (Duram, 2010) through the use of focus groups (Halkier, 2016). The empirical data from focus groups are considered to be especially useful as the group discussions can facilitate putting silent knowledge can be put into words (Halkier, 2016), which was intended since dementia-friendliness in hospitals as a term needs exploration. Thus, the empirical search for knowledge provided in-depth descriptions as an answer to research question 2 (see section 3.0). All focus group interviews were conducted with the author of this thesis as the primary moderator. However, a co-moderator was present at all interviews, and in the interviews of persons with dementia and the relatives, the gatekeeper from the local community center also participated. The structure of the focus group interviews was the same for all interviews and comprised: an introduction with repetition of the aim and how ethical issues are handled during and after interviews, an introduction to the structure of the interview, and a short presentation of participants. A moderate to high level of involvement from moderator(s) characterized the interviews. All interviews ended in a debriefing session, which gave the
28 participants the opportunity to talk about how they experienced the participation and to ask additional questions about the study that arose during the interviews (Halkier, 2016).
5.4.1.2.1 Interview guide (Sub-study 2)
As recommended, a structured interview guide (Appendix 3, example of interview guide from interview with persons with dementia) was applied as the focus was on the exploration of a term
(Halkier, 2016; Neergaard et al., 2009). This meant that interview questions were both searching for descriptions about dementia-friendly hospitals leading to more narrow guided discussions about preferable elements and broad evaluations concerning, e.g., useable tools and environmental matters. The interview guide was based on existing knowledge, including results from Sub-study 1 about patients with dementia in hospitals and knowledge about dementia-friendly hospital as a term.
This guidance relied on the principle of empirically testing in all interviews and was supplemented by another principle of empirical testing, as topics discussed in one interview were explored and elaborated in the next interviews allowing for comparison of differences and similarities. However, the overall guidance was determined by the research question to ensure focus and correspondence between data from the interviews. Additionally, the interview guide consisted of questions about participant characteristics such as age, sex, diagnosis, relationship to a person with dementia, membership background, and profession with differentiation depending on group participants.
5.4.1.2.2 Recruitment and participants (Sub-study 2)
Through a purposive sampling strategy, the participants were recruited from different settings and represented multiple perspectives of the same complex real-world problem (Hothersall, 2019). The sampling strategy was further supplemented by the principle of having segmented homogeneity
(Halkier, 2016), meaning that all participants shared a commonality with regard to dementia. The relatives and persons with dementia were recruited from a local community center with the help of a
29 gatekeeper, who established contact with the groups and invited them to participate. These interviews took place at the local community center. The representatives from the Danish
Alzheimer’s Association were recruited with the help and guidance of the organization and were contacted by phone by the first moderator (author of this thesis), who provided information about the interviews and asked for participation. This interview took place at the first moderator’s workplace. The advanced dementia specialists from Svendborg Hospital were recruited by the first moderator (the author of this thesis) via email, as email had previously been used to convey information about the study and was thereby regarded as an appropriate way of contacting them.
This interview was conducted at the Hospital. All participants received a written description of the aim of the interview (Appendix 8) prior to the interview and were informed verbally on the interview day for briefing purposes. Participant characteristics are shown in Table 5.
Table 5 Participant characteristics, Sub-study 2
Persons with Relatives n=5 Representatives Hospital
Stakeholder group dementia n=5 from the staff/dementia
Alzheimer’s specialists
Association from hospital
n=3 n=4
Gender: Male 5 2 1 Female 3 3 3 Dementia diagnoses Alzheimer’s disease 3 Lewy Body dementia 1 Vascular dementia 1 Relation to person with dementia Spouse 4 Child 1 Membership background Relative 1 2
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Professional Profession Nurse 1 Physiotherapist 1 Domestic worker 1 Manager 1
5.4.2 Mixed methods (Sub-study 3)
In Sub-study 3 a mixed methods approach (Creswell & Plano Clark, 2018) was taken. The application of various methods facilitated the search for real-world-oriented knowledge about dementia-friendliness and thus strengthened how research question 3 (see section 3.0) could be answered. Mixed methods are defined by the use and integration of quantitative and qualitative approaches to research in order create a broad and extended understanding of a complex real world problem (Creswell & Plano Clark, 2018). By adhering to the pragmatic principle of viewing objective and subjective data as being complementary, the mixed methods approach assured that the impact of the dementia education intervention was evaluated through the integration of numbers and experiences, providing a nuanced and comprehensive depth in findings and with no reduction in either quantifiable measures or subjectivity (Shannon-Baker, 2016).
5.4.2.1 Explanatory sequential design
An explanatory sequential approach was applied. The sequential design guided the study process and the specific integration features in Sub-study 3. This meant that the results from the quantitative data collection and analysis were connected to the qualitative data collection. Subsequently, the qualitative results were connected to the quantitative results in order to deliver an enhanced understanding and explanation of these results (Creswell & Plano Clark, 2018; Ivankova et al.,
2006). Figure 1 in Paper 3 illustrates a procedural diagram of the sequential design and shows
31 integration as the central feature of mixed methods research (Fetters et al., 2013) and how this is managed at the methods, interpretation and reporting level in Sub-study 3. Moreover, the integrating procedures play a defining role in mixed methods research concerning specific attention to answering questions about: Why integrate? What is going to be integrated? When to integrate?
How to integrate? (Plano Clark, 2019). In addition, Figure 2 in Paper 3 illustrates a joint display showing the new insights obtained from the integrated inferences, which go beyond the separate findings from the quantitative and qualitative phases. The following sections elaborate on the quantitative and qualitative phases regarding data collection, recruitment, and participants in the mixed methods study.
5.4.2.2 Questionnaire (Sub-study 3, quantitative)
A repeated measure approach was used to address research question 3a ‘What is the impact of a dementia education intervention on general hospital staffs’ knowledge, attitudes, and competence?’, consisting of a three-time distribution: pre-intervention (T0) approximately two weeks before the participation at the one-day education; one-month post-intervention (T1); and five months post- intervention (T2). The questionnaire: Dementia Friendly Hospital Education Assessment
Questionnaire (DeFHEAQ) (see Appendix 4 for a full version of the questionnaire) used in the quantitative part of Sub-study 3 was developed and validated prior to sub-study 3. The development and validation stages are described in the next paragraph. DeFHEAQ consist of an introductory section including consent to participate, demographic questions, questions regarding knowledge about dementia prior to the education, and questions regarding adherence to the implemented dementia education at the hospital. This introductory section is followed by the main section of the questionnaire, which contain three sections concerning knowledge about dementia, attitude toward patients with dementia, and competence with regard to care and treatment of patients with dementia.
The areas of interest in these three sections built on a hypothesis that there is an association between
32 competence and attitude towards patients with dementia and that the degree of knowledge about dementia might be a predictor of competence and positive attitudes (Mullan & Sullivan, 2016;
Schepers et al., 2012). Knowledge items were assessed on a dichotomous scale; however, three items were assessed on a multiple-choice scale. Correct answers were assigned 1 point and incorrect answers, 0 with a possible score of 0-27. An ordinal 5-point Likert scale was used to assess attitude items formulated as the degree of agreement in the statement proposed going ‘from strongly’ agree to ‘strongly disagree,’ with possible scores of 11-55 where a high score indicated positive outcome.
Likewise, competence items were assessed using a 5-point Likert scale going from self-reported competence as ‘very bad’ to ‘very good’ with possible scores of 11-55, where high scores indicated increase in competences. The questionnaires were administrated electronically and the answers were directly imported to a REDCap database provided by Odense Patient data Explorative
Network. Introductory information about the study was included at all distribution times.
Questionnaire development and validation The author of this thesis, supervisors, and a project manager from Svendborg Hospital reviewed existing questionnaires used to examine the effect of education interventions regarding dementia in order to find a questionnaire that could meet the requirements of our study and cover the content of the local dementia education initiative. Most questionnaires tended to include primarily biomedical items and lacked focus on care and the person-centered approach (Spector et al., 2012), which has been described as having an overall influence on dementia-friendly initiatives (Hebert & Scales,
2017). Therefore, we developed and validated the questionnaire (DeFHEAQ), which targeted the hospital setting and the interdisciplinary focus in the education intervention, also acknowledged by
Scerri et al. (2017) and Spector et al.(2012). The development and validation procedures were conducted between October 2017 and June 2018; existing scales together with input from dementia experts inspired the initial development of items. The further validation and development processes
33 included experts and hospital staff and were aimed at informing item selection and/or reduction.
Validity and reliability were determined through consultation of dementia experts and pilot and field testing with the inclusion of hospital staff similar to the target population of the study
(Cornelius LJ., 2006; Rattray & Jones, 2007; Terwee et al., 2007). In addition, cognitive interviews were conducted during the final field test (Drennan, 2003). In the final field test, Intra-Class-
Correlation was calculated to assess test-retest results, and the results indicated low to substantial reliability with a knowledge items coefficient of 0.75, attitude items coefficient of 0.35, and competence coefficient of 0.68. Internal consistency reliability was calculated using Cronbach’s alpha coefficient, showing coefficients of 0.63 for attitude items, 0.92 for competence items, and
0.76 for knowledge items, which are regarded as moderate to acceptable results. This created evidence for inter-correlational components of the scale (Cornelius LJ., 2006; Rattray & Jones,
2007). Additionally, floor and ceiling effects were examined (Davidson & Keating, 2002; Terwee et al., 2007)) and showed a tendency toward ceiling effects regarding knowledge items. Based on the above-mentioned examinations, revisions were made. See Figure 1 for an overview of the development and validation process.
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Figure 1 Flowchart of development and validation of DeFHEAQ
Literature review and discussions with dementia experts First draft of questionnaire Drafting of questions 42 items 6 demographic items, 16 knowledge items, 8 attitude items, 12 competence items Face validity
Dementia experts (n=3) Dementia care staff (n=2) Rewording, reduction and selection of additional items First revised questionnaire 45 items 15 demographic items, 8 knowledge items, 10 attitude items, 12 competence Content validity items First pilot test (n=16) including feedback comments Rewording and selection of additional items Second revised questionnaire 51 items 16 demographic items, 16 knowledge items, 7 attitude items, 12 competence Second pilot test (n=32) including items test-retest (n=11) Interview and comments (n=5) Rewording, revision of format,
and selection of additional items Third revised questionnaire 54 items 16 demographic items, 16 knowledge items, 10 attitude items, 12 competence Field test (n=190) including test- items retest (n=59) Cognitive interviews (n=5) Reduction, selection, and rewording of items and addition
of intro and closing items Final questionnaire DeFHEAQ 58 items 3 intro items including consent, 13 demographic items, 16 knowledge items, 11 attitude items, 11 competence items, and 4 closing items
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5.4.2.2.1 Recruitment and participants (Sub-study 3, quantitative)
A purposive total population sampling strategy was applied, as the whole group of hospital staff that attended the one-day education course was included. A total of 1107 participants were invited by email. In the recruitment process, a close collaboration with project assistants from the dementia- friendly project team helped assure that the participants received an email prior to their participation in the education. This email contained detailed information about the repeated questionnaire assessment and a link to the pre- intervention questionnaire. Participant characteristics are shown in
Table 6 below and outlined in more detail in Table 3 of Paper 3.
Table 6 Participant characteristics, quantitative part Sub-study 3
T0 T1 T2 All participants n=849 n= 618 n=468 Gender Female 710 (83.6%) 525 (85.0%) 391 (83.5%) Male 139 (16.4%) 93 (15.0%) 77 (16.5%) Age at inclusion, median years 48.0 49.0 50.0 Profession group* Authorized 622 (73.3%) 448 (72.5%) 331 (70.7%) Non-authorized 227 (26.7%) 170 (27.5%) 136 (29.1%) * Profession groups were separated into two groups inspired and justified by the Law of Authorization
5.4.2.3 Semi-structured interviews (Sub-study 3, qualitative) Semi-structured interviews were conducted guided by research question 3b ‘How do general hospital staff experience the impact of a dementia education intervention?’ which aimed to explore experiences of the measured impact of the education intervention. According to Kvale and
Brinkmann (2015) semi-structured interviews are recommendable when the intention is to develop knowledge about the experiences as perceived by interview participants. Moreover, the semi- structured approach aligns with the mixed methods design in Sub-study 3 as predictors determined the structure concerning topics and at the same time allowed for exploration of the participants’
36 experiences. Guided by the descriptions of Kvale and Brinkmann, all interviews followed the same structure: briefing, interview, and debriefing (2015).
One interview was conducted at the hospital and the remaining ones were conducted as telephone interviews due to restricted access to the hospital for external personal during the Covid-19 pandemic. All participants received information about the study verbally and in writing.
5.4.2.3.1 Interview guide (Sub-study 3, qualitative)
In order to connect the quantitative results to the qualitative phase, the interview guide was developed on the basis of quantitative results (Creswell & Plano Clark, 2018). With the quantitative results used as predictors, the interview guide was framed by questions regarding the increase in knowledge, attitude, and competence scores. However, the aim was to explore the hospital staffs’ experiences of the measured effect, which required a nuanced and diverse approach to different question types as recommended by Kvale and Brinkmann (2015). The semi-structured interview guide is visible in Appendix 5. Additionally, information about characteristics such as gender, age, and profession were included in the interview guide.
5.4.2.3.2 Recruitment and participants (Sub-study 3, qualitative)
As the overall results from the quantitative results showed a significant increase in knowledge, attitude, and competence scores, the sampling strategy was purposive, searching for maximum variation (Creswell & Plano Clark, 2018) among employees who had attended the one-day education intervention at Svendborg Hospital and completed the repeated questionnaire. However, elements of convenience sampling were included. The participants in the interviews were recruited with the help of dementia specialists and leaders in the departments at Svendborg Hospital. These gatekeepers received an email with information about the interviews regarding the target group and timeframe of the interviews and the period in which the interviews were to be conducted. This
37 resulted in email or phone contact with potential participants during which appointments about interview date and time were set. In some cases, the interviewer (the author of this thesis) visited the departments to make appointments with participants. Inclusion criteria were that the participants had participated in the one-day education intervention and had completed the three questionnaires described above. A total of 16 participants agreed to participate and represented a broad range of professions (see Table 7 for participant characteristics). This sample included a deviation from the inclusion criteria because the current situation at the hospital during the recruitment process was influenced by the Covid-19 pandemic involving a workload. Therefore, two of the participants were dementia specialists (see the description of the different educational levels in section 4.0 Setting).
Table 7 Participant characteristics, qualitative part Sub-study 3
Participant characteristics N=16 Gender Male 7 Female 9 Median age = 49 years Profession Authorized 11 - Medical doctor 2 - Nurse 4 - Health care assistant 1 - Physiotherapist 1 - Occupational therapist 1 - Biomedical laboratory scientist 1 - Radiographer 1
Non-authorized 5 - Secretary 1 - Porter 1 - Receptionist 1 - Domestic Worker 1 - Architectural technology and construction manager 1
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5.4.3 Analytical approaches in the three sub-studies
5.4.3.1 Abductive reasoning in Sub-study 1 The analytical approach to the empirical material consisting of transcribed field notes was abductive and inspired by the work of Tavory and Timmermans (2014). The abductive way of scientific reasoning draws on the pragmatic principles of Peirce, who stated that theorizing is an ongoing process in research and that discovery (induction) and justification (deduction) should be seen as complementary in the process of reasoning in order to make sense of data (Tavory & Timmermans,
2014). With regard to the overall epistemological stance in this study, the three analytical phases described below justify that an empirical puzzle can result in new insights in order to understand and conceptualize the encounter between patients with dementia and hospital staff (research question 1). Abductive analysis, however, is rather absent in literature (Lipscomb, 2012) nevertheless it should not be overlooked in qualitative research as it can give insightful knowledge about meaningful patterns that in the nature of situations lies beneath the surface (Eriksson &
Lindström, 1997; Råholm, 2010). Together with the reliance on the pragmatic principles, this serves as a strong argument to rely on abductive reasoning, as the review of literature in section 2.6.1 suggested a need for an in-depth focus on the silent and unknown patterns in the encounters of interest in Sub-study 1.
The analysis was a back-and-forth process between phases as this iterative way of analyzing strengthened the opportunity to make the complex encounters between patients with dementia understandable. An initial step before turning to the three phases was characterized by coding, memo writing and searching for patterns in the transcribed field notes to get familiarized with the empirical material derived from the observations in order to capture details and coherency (Tavory
& Timmermans, 2014). This initial step safeguarded that the analysis was respectfully based on the empirical world (Brinkmann et al., 2014; Duram, 2010).
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Turning to the first phase, the transcribed field notes, perceived as a of protected version of the empirical material from pre-existing ideas and theoretical concepts (Tavory & Timmermans, 2014), is a subject of the process of defamiliarization. A key aspect of this phase is the discovery of surprising and challenging findings; the preparedness to be unprepared (Timmermans & Tavory,
2012), which leaves defamiliarized surprise as a necessary step to abductive reasoning (Tavory &
Timmermans, 2014). The field notes were scrutinized as were the initial codes when searching for situational breakdowns, changed atmosphere, or surprising or unusual reactions in the linear situations. The question: “What is this a case of?” was asked, and this phase ended with the suggestion of what the surprising findings could be a case of? Sensitizing notions from theoretical insight informed the analytical process (Atkinson, 2015; Tavory & Timmermans, 2014;
Timmermans & Tavory, 2012).
To suggest possible ways of theoretically understanding and conceptualizing the encounters, the analysis moved forward into the second phase by running through the empirical material again and asking: “Could this be a case of a clinical plot?” as described by Cheryl Mattingly in her theory of
Therapeutic Emplotment and Healing Dramas (Mattingly, 1998). Balancing the discovery and justification so far, the analysis showed that the encounter between patients with dementia and hospital staff seemed to be based on a constant negotiation of significant moments. To test this analytical result, an empirical test was made in the third phase as the transcripts and field notes were revisited to assure that the suggested findings were substantiated and varied across the empirical material. Examining variance across empirical cases assured that insights obtained from the analysis were not obtained by incidence or the use of irrelevant theories (Tavory &
Timmermans, 2014). However, the ongoing intellectual conversation between the empirical data
40 and theoretical generalization did not fully conceptualize the encounter between patients with dementia and hospital staff as it mostly captured the negotiation between patients with dementia and hospital staff. Therefore, another theoretical concept was suggested (going to back to the second phase again) when asking a similar question to the empirical material: “Is this a case of recognition?” as described by Ricœur (2005). This addition was put into play as it was suggested that it could capture a deeper layer in the encounters. To test for variance, the encounters described in the field notes were revisited again (third phase) to justify the discovery of a deeper level in the encounter and thereby a more comprehensive understanding of the reality experienced by the patients with dementia. In the recurring revisiting phases the concept of omnipresent ambiguous kindness kept showing up as a significant element in the encounters. The two empirically tested sensitizing notions did not capture this concept, which left it as an additional layer of how the encounters could be understood and conceptualized. The analytical process is illustrated in Figure 1 of Paper 1.
5.4.3.2 Thematic analysis in Sub-study 2 and qualitative phase in Sub-study 3
The empirical material from the focus group interviews in Sub-study 2 and the semi-structured interviews in the qualitative phase in Sub-study 3 were approached analytically with inspiration from the six phased descriptions of reflexive thematic analysis by Braun and Clark (Braun et al.,
2019). This qualitative analytical process is described as a nonlinear, recursive but systematic process aiming to identify patterns or themes from the empirical material in a reflexive and thoughtful way of engagement (Braun & Clarke, 2019). Braun and Clarke emphasize that within flexibility as a central point, thematic analysis does not rely on a specific theoretical framing although transparency and justification of choices are required (Braun & Clarke, 2019). The reflexive thematic analysis (Braun et al., 2019; Braun & Clarke, 2019) builds on the earlier described thematic analysis (Braun & Clarke, 2006) and adds a specific awareness of relying the
41 process of coding data to the assumptions that inform the study and attention to the construction of themes (Braun et al., 2019).
The reflexive thematic analysis served as a flexible approach to the analytical processes in Sub- study 2 and 3 framed by the assumptions of pragmatism. Six phases guide the analysis as described by Braun and Clark and colleagues (Braun et al., 2019; Braun & Clarke, 2006). These phases are described below and examples from the analytical process in Sub-study 2 are used to illustrate this process, and additional references to the analytical process in the qualitative phase in Sub-study 3 are added with regard to justification of choices and transparency.
The first phase of ‘familiarization with the data’ was characterized by getting to know the generated data and going into the analysis by noting the first impressions of the participants’ stories. In this phase the audio-recorded focus group interviews from Sub-study 2 were played while the transcripts were read to increase familiarization and to facilitate a connection with data as these had been transcribed by an external research assistant. With the research question as guide, notes were made in the margin of the transcribed versions of data and were assisted by notes about surprising elements in the data, since the researcher plays an active role in the analytical process that should not be confused with a predetermined framework of analysis as guidance (Braun et al., 2019;
Mason, 2018). In Sub-study 2, this first reading and note taking gave the impression that the participants valued personable quality rather than practical issues. This discovery was valuable when entering the next phase of ‘generating codes’ in which the inductive approach sharpened the systematic way of identifying meaning across the data from data (Braun et al., 2019). Likewise, in
Sub-study 3 the generation of codes was guided by the results from the quantitative phase in the mixed methods study to assure a rigorous integration process from one phase to another (Creswell
& Plano Clark, 2018) and an effort to balance the explorative aspects and guidance from these
42 results was made. When codes were being generated, several post-it labels were used and served as a guidance to the forthcoming phases. During this code-writing procedure, the pragmatic principle of representing and respecting the empirical world and research question 2, with a focus on descriptions guided an awareness of capturing meaning at the semantic end of the continuum of either semantic or latent meanings. This was done to avoid early abstracted meanings moving too far beyond data, given that qualitative descriptions are intended to stay close to the surface of data
(Sandelowski, 2000) which served as an additional guidance for the code generation in Sub-study 2.
Code generation is exemplified in Table 8.
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Table 8 Example of code generating in Sub-study 2
Excerpts from the transcribed interviews codes (Representative from the Danish Alzheimer To make the diagnosis visual to everyone can association): “If the dementia diagnosis is lead to stigmatization. visual to everyone who meets the person, I am afraid that it could be quit stigmatizing and that There is a risk that patients with dementia are most people or staff would think that this treated all the same. person has dementia and I don’t expect him to respond or I don’t have to include him. And Knowing the diagnosis could enhance talking about dementia-friendly hospitals, I reflections of how to approach the person with think that to be friendly is not to stigmatize. dementia. Otherwise it could facilitate that staff would reflect on how to approach this person and Knowledge about the person can be crucial. maybe try to get a little knowledge about this person and maybe do some extraordinary things to protect this person. Maybe there is Protecting the person with dementia. something important to be aware of concerning how this person is used to do things. Maybe To be personable could minimize challenged this would help the person with dementia to behavior. cooperate more appropriately instead of maybe refuse help.” (Person with dementia): “I think that it is nice, The need for protecting privacy that a little privacy is provided. I don’t like to be totally exposed, but I can get nervous if I The need for company feel alone and I don’t see anyone. I don’t like to be hidden away behind a curtain so to speak, Avoid humiliation if I forget where I am, I might do some poorly considered things.”
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Moving on to the phase of ‘constructing themes,’ the use of the codes from the previous phase in this construction an awareness of theme development was guided by the ability of the constructed themes to tell a story that could partly answer the research question. Special attention was paid in this phase to avoid data reduction by summarizing different opinions on a topic discussed in the interviews, which is a well-known pitfall when the interview guide is structured (Braun et al.,
2019). This attention was relevant in in both Sub-study 2, which also aimed to identify similarities and differences across groups and in the qualitative part in Sub-study 3 because of the focus on explanation through integration with existing results. In the constructing theme phase an early thematic map (Braun & Clarke, 2006) was drawn in Sub-study 2 to get an overview of the candidate themes and their possible grouping and connections. To visualize this was helpful with regard to the next phases as it became clear that the theme personable awareness was a central latent theme as the other themes all were connected to this. Additionally the codes related to knowing the patient and the person with dementia could be divided into two semantic level themes connected to a latent level theme about how to balance knowledge. Figure 2 illustrates the early thematic map.
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Figure 2 Early thematic map Sub-study 2
Having Reduce Sustaining someone stigma relationship nearby
Personable awareness Protection Knowing Valuing Recogniza the patient progress bility and the over person regress with dementia With the early thematic map as a starting point, the next phase of ‘revising themes’ was characterized by collaborative teamwork around the themes, concerning how the empirical data was related to the themes and how themes related to each other. Ongoing discussions in the supervisor group related to this PhD study led to decisions about themes being sub ordinate or superior to one another and whether some of the candidate themes could be combined or split into two themes.
These discussions also assured that a close connection to the research question was maintained when asking: “Could this preliminary theme tell us anything about how a dementia friendly hospital can be described?” in sub-study 2. This was directly related to and brought the analysis to the next
‘defining theme’ phase, where taxonomic classifications of the themes were discussed and defined in a continued collaboration. Characteristics of this phase of the analysis was reflexive interpretation grounded in the empirical material with specific attention to the story telling through engagement among authors and adherence to the philosophical assumptions. In this defining phase, the themes were named by going back to initial codes and data in order to ensure that the names were related to data. Further, the names were tested against the research question to check if this name represented the underlying content and could be a part of an answer to that question. The final
46 step before moving on to the ‘writing the report’ phase was to draw a final thematic map. During this drawing the final themes were tested with regard to ensuring that they captured the essence of data and relied on the empirical world in order to answer the research question. The thematic map in
Figure 1, Paper 2 illustrates the final themes and their internal connection reflecting the latent themes that were superior to sub ordinate semantic theme levels.
The sixth ‘producing the report’ phase entailed writing the story created by the themes and their coherency. At the same time, the draft of early coding and the first thematic map were revisited in order to empirically test whether the story was closely connected to the data. In keeping with the principles of pragmatism, this last phase ensured that the descriptions containing the findings were representations from the empirical world and that they depicted the truth and reality as told by the participants.
5.4.3.3 Descriptive and non-parametric statistics in quantitative phase in Sub-study 3
In order to answer research question 3a (see section 3.0) statistical methods were used. The rationale behind this choice was twofold: to examine whether the dementia education intervention impacted the self-reported scores of knowledge, attitude, and competence and to provide results that could be integrated through connection to the sampling and analysis procedures in the qualitative phase with the aim of making integrated explanatory inferences (Fetters et al., 2013). All questionnaire data were imported from the REDCap database to Stata (StataCorp, 2019) for analysis purposes and an initial preparation of data was made with regard to cleaning and missing data
(Cornelius LJ., 2006). This initial preparation included the division of participants into groups of authorized and non-authorized health professionals with the aim of detecting any differences between these groups to be followed in the qualitative phase. Further, the departments to which the participants had allocated their connection were gathered into general terms that defined the structural specializations at the hospital.
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Firstly, descriptive statistics were used to summarize and describe the data regarding demographic information (percentages, medians, interquartile ranges) and how the participants adhered to the education intervention (cumulative proportions) subjected to the study purpose of Sub-study 3.
Results of this descriptive analysis are shown in Table 1 of Paper 3.
Secondly, because assumptions about normality were violated due to a skewed distribution and the use of ordinal 5-point Likert scales regarding attitude and competence items, data were reported using medians and interquartile ranges (IQR) and the non-parametric Wilcoxon Signed Rank Test was used to analyze data. The analysis tested the null hypothesis stating that the distribution of the median for total scores of knowledge, attitude, and competence are equal in two paired samples (T0 vs T1 and T0 vs T2). The alternative hypothesis stated that there is a difference between median of the total scores of knowledge, attitude, and competence in the two paired samples (Corder &
Foreman, 2014). The level of significance was set at 0.05. This inferential statistical method was used in order to examine whether total scores of knowledge, attitude, and competence changed significantly from pre-intervention (T0) to one-month post-intervention (T1) and from pre- intervention (T0) to five-month post-intervention (T2). The results of the Wilcoxon Signed Rank
Test are shown in Table 2, Paper 3. The distribution of scores over time points are further illustrated as medians and IQR in a boxplot in Figure 2, Paper 3 Joint Display.
5.5 Ethical considerations The three sub-studies in this PhD study followed the guidelines described in the Nuremberg Code
(U.S. Department of Health & Human Services, 2005), the Declaration of Helsinki (World Medical
Association, 2013), and the Ethical guidelines for nursing research in the Nordic Countries
(Sykepleiernes Samarbeid i Norden. Northern Nurses’ Federation, 2003) by respecting the
48 autonomy of all study participants and informing all participants about the study purposes, that their participation was voluntary, that data would be anonymized, and that they could withdraw at any time (see appendix 8 for written information to participants). Approval from the Danish Data
Protection Agency (18/14259) (Appendix 6, including data processor agreement) was obtained and requirements about confidential data storage and management were followed. The Regional Danish
Committee on Health Ethics did not consider that additional ethical approval was required for the study (S-20182000-1) (Appendix 7).
All participants consented to participate in Sub-study 1 or 2 or 3; however, some of the participants with dementia in Sub-study 1 were not able to give consent and therefore a proxy consent from close relatives was obtained (see Appendix 9 informed consent forms).
The inclusion of participants with dementia in research requires some additional ethical considerations as these participants are considered to be a vulnerable population (World Medical
Association, 2013). However, their inclusion in research is crucial to giving voice to their perspectives and an exclusion would be shortsighted and discriminatory (Dewing J, 2007;
Hellström I et al., 2007) and potentially intensifies the stigma related to dementia (Swaffer, 2014).
Equally, continuous reflections about how to balance possible threats and potential gains regarding this vulnerable population ethically in research is needed (West et al., 2017) while maintaining the belief that it is not a question of whether to include them but how to do so (Drageset, 2019).
Regarding the assured anonymity of the participants with dementia and the involved hospital staff in Sub-study 1, it was challenging due to the close collaboration with and attendance of hospital staff. However, this factor was regarded as necessary and unavoidable in order to make the observations as practical as possible and to create safety for all participants. Additionally, the attendance of the gatekeeper in the focus group interview with persons with dementia in Sub-study
2 was regarded as a necessary recruitment issue related to ensuring feelings of safety among
49 participants (Thoft et al., 2020). To meet these challenges, the confidentiality and the aim of the observer’s attendance were continuously repeated. This also meant that the informed consent was obtained as a process of consent (Rivett, 2017) in both Sub-study 1 and 2 as the affected memory of the participants with dementia sometimes caused them to question the observer and interviewer’s reason for being present.
The need to respect the challenged ability to recall experiences and the language impairment among the participants with dementia were addressed during observations (Sub-study 1) and focus group interview (Sub-study 2). Talking about general topics such as the weather, what was visible outside the window (Sub-study 1), and the food they were going to make (Sub-study 2) was used as a way to connect to the person(s) with dementia and make them feel safe about the observer/interviewers’ attendance and support the well-being of the participants (Digby et al., 2016; Drageset, 2019).
Moreover, the conversations were sought to balance the feeling of contributing with personal perspectives and experiencing loss of capability to do so by helping the participants to associate with the subject of the conversation and find the words (Drageset, 2019). Additionally, considerations about how the setting could influence the conducted research included how to respect and acknowledge the affected memory (Digby et al., 2016). Being in the hospital setting, which was the topic of interest in Sub-study 1 seemed to increase the person’s ability to relate to the subjects discussed during the observations and informal conversations because of the actual activities (Digby et al., 2016). In Sub-study 2 the environment at the local community center was regarded as a safe place in which to respect the vulnerability and to balance the powerful relationship between the interviewer and the participants (Digby et al., 2016).
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6.0 Results
This section contains an overview of the results from Sub-study 1, 2, and 3 described separately in brief with the intention of presenting the results in accordance with the overall aim of this Ph.D. thesis: to generate knowledge of dementia-friendliness in hospitals. The results from each sub-study are presented in detail in Paper 1, 2, and 3 respectively. Additionally, the subsequent Discussion section elaborates on the results of the three sub-studies by including a discussion across sub-study results intending to illustrate the importance of exploring and examining different perspectives of dementia-friendliness in hospitals as an essential element in the constitution of new knowledge.
6.1 Results from Sub-study 1 (Paper 1)
The aim of Sub-study 1 was to explore, from the patient’s perspective, the characteristics of the encounter between patients with dementia and hospital staff in a variety of general hospital settings guided by research question 1: How can we understand and conceptualize the encounter between patients with dementia and a variety of hospital staff in a general hospital setting?
The abductive analysis led to the conceptualization of the encounter between patients with dementia and hospital staff as a three level concept showing that patients with dementia strive to be seen as persons conversely to the staff often overlooking the person. Firstly, the level of negotiation shows that in encounters between patients with dementia and hospital staff, significant moments are constantly at stake. This ‘at stake’ conception is characterized by a present potential of either being seen as the person you are or being in suspense as a bystander in one’s own life. Secondly, the result of the negotiation relies on how patients with dementia are recognized by hospital staff in the encounters of interest as an illustration of the recognition level. Judgements about patients with dementia as contributors or passive recipients seem to influence how the recognition affected the
51 negotiation. Thirdly, the level of navigation was identified. This level include an omnipresent ambiguous kindness that seems to be present in all encounters as a both inclusive and exclusive approach or an either/or approach that represents the navigation condition for the patients with dementia.
6.2 Results from Sub-study 2 (Paper 2)
The aim of Sub-study 2 was to explore and describe stakeholders’ perspectives of a dementia- friendly hospital guided by research question 2: How do different stakeholder groups describe their perspectives of the dementia-friendly hospital?
The thematic analysis resulted in one overall theme that framed the stakeholders’ descriptions of a dementia-friendly hospital: ‘Seeing the person behind the dementia diagnosis’. This theme contains descriptions of the importance of putting the person in the forefront if the term dementia-friendly hospital is going to respond to both dementia and friendly. Two subordinate themes were identified within the overall theme: Firstly, ‘balancing knowledge’ describes the importance of knowing both the person with dementia and about dementia itself and adjusting these significant knowledge bases when approaching patients with dementia as a prerequisite to dementia-friendliness in hospitals.
‘Facilitating protection’ constitutes the second theme and contains descriptions of the significance of protecting the person with dementia during hospitalization. This theme elaborates on the descriptions of dementia-friendliness and indicate how surroundings facilitate the protection of the person with dementia, and that a respectful balance between exposure and protection of the dementia diagnosis is needed if a hospital is going to be dementia-friendly. Moreover, protection is described as an awareness of including significant others in order to avoid feelings such as loneliness and anxiety experienced by patients with dementia. Protecting the significant others from becoming exhausted was also included in the description.
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6.3 Results from Sub-study 3 (Paper 3)
The overall mixed methods aim of Sub-study 3 was to investigate the impact of a dementia education intervention by examining the self-reported outcomes of general hospital staff and explaining these outcomes, by exploring the staff’s experiences, guided by the mixed methods research question 3: How can qualitative interview data, exploring general hospital staffs’ experience of the impact of a dementia education intervention, explain the self-reported knowledge, attitude, and competence scores from a quantitative measure?
The mixed methods inferences revealed that the dementia education intervention had a noteworthy impact on how hospital staff collaborate in a person-centered way around patients with dementia in a general hospital setting. The significantly increased scores in knowledge, attitude, and competence reported by hospital staff show a measurable outcome of the dementia education intervention that is further explained by an overall commitment among hospital staff to use the
‘cumulative wisdom’ with an awareness of an improved ‘inter-occupational cooperation’ with the aim of creating safe solutions for patients with dementia based on a ‘shared proficiency.’
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7.0 Discussion In this section, the results from Sub-study 1, 2, and 3 are discussed across studies referred to as
Paper 1, Paper 2, and Paper 3. The obtained knowledge about dementia-friendliness in hospitals is discussed with theoretical perspectives, guidelines, and research literature in order to broaden the discussion of each sub-study and to clarify the knowledge contribution of this PhD study in response to the overall aim. As the knowledge about dementia-friendliness with a specific focus on hospital settings is still sparse in literature, the discussion includes literature from other settings.
Our results derive from various perspectives of dementia-friendliness in hospitals obtained using different methods; however, the results consistently and in a complimentary way center on the importance of approaching patients with dementia in a person-centered way. This focus is also found to frame a variety of dementia-friendly initiatives (Hebert & Scales, 2017) and specialized dementia inpatient units (McCausland et al., 2019), confirming that adhering to a person-centered approach is essential to dementia-friendliness in hospitals.
Within the field of dementia care and research in dementia care, the concept of person-centered care as described by Kitwood (1997) has been dominant as an overall frame for decades. Kitwood’s work was a response to the medical model and the malignant understanding of dementia that was present at the time he began his work. His ideas brought the concept of personhood into dementia care, defining the status of personhood as something given to a human being by others. Kitwood outlined that the maintaining of personhood is both a neurological and social-psychological matter with an explicit focus on the fulfillment of psychological needs. Especially for persons with dementia, these needs seem more important to pay attention to because of the vulnerability of this group and their difficulties with self-management in fulfilling these needs (Kitwood, 1997). In strong agreement, our results show that sustaining personhood during hospitalization is crucial for patients with dementia and within this, the relations between hospital staff and patients with
54 dementia play a determining role (Papers 1, 2 and 3). Drawing lines to discussions about the effect of implemented person-centered care strategies, results point to person-centered care as the guiding principle that enables the bridging of the gap between the medical-focused hospital context and the emotional and psychological needs and behavioral expressions of patients with dementia in order to secure comfort and well-being. (S. K. Kim & Park, 2017; Schindel Martin et al., 2016; Tay et al.,
2018). Conversely, our results show that bridging this gap is complex as opposing discourses about dementia are present in the hospital context, underpinning that a person-centered approach to patients with dementia is not a straightforward easily adaptable approach in hospital settings (Paper
1). Critical voices point to the lack of practical applications and translation of Kitwood’s theory into practical settings (Dewing, 2008). Furthermore, person-centered care as a framework is suggested to simplify the complexity of such terms and influence how to act in a person-centered way
(Dewing & McCormack, 2017). It is also stated that an uncritical use of person-centered care risks overlooking the importance of relational interactions, due to the focus of care processes and outcome (Entwistle & Watt, 2013). Moreover, and addressing hospital settings, limitations to applying a person-centered approach are trapped in hospital culture with the risk of objectifying the patient with dementia (Clissett et al., 2013; S. L. Dupuis et al., 2012; Gwernan‐Jones et al., 2020;
Meranius et al., 2020; A. Scerri et al., 2019).
As clearly stated above, applying a person-centered approach in hospital settings reveals certain paradoxes. In response, our results intensely point to a need to overcome these paradoxes by addressing both the individual level (referring to the encounters between patients with dementia and hospital staff/setting) and the organizational level (referring to how dementia is put into words) if dementia-friendliness is to be successfully embedded in a hospital context (Papers 1, 2, and 3).
Moreover, our results indicate a need for reflexivity regarding how a person-centered approach is performed and, within this, how the underlying values influence the way in which person-
55 centeredness is perceived in a hospital context among different professions and across occupations.
This is echoed in the results of a literature review that points to the need to address person- centeredness broadly in a hospital context to respond to the overall ideals in this concept (Brooke &
Ojo, 2017). Moreover, a review of literature about dementia-friendliness in health care settings suggests that among various elements a critical view on person-centered care must be taken in order to secure equality in health care (Lin, 2017).
Coined from the above, our results point to a need to expand the term person-centered care derived from Kitwood, which is also acknowledge elsewhere (Allen Christensen et al., 2019), and turn to the term ‘reflexive person-centeredness’ in order to capture the discussion of dementia-friendliness in hospitals. ‘Leaving’ care, does not mean leaving care; instead, it is inclusive as a large number of the hospital staff included in our study do not necessarily identify their professional functioning with the term ‘care.’ The term person-centeredness, however, is more broadly defined as reflected in a conceptual and historical analysis of the term person-centeredness from the view of a rehabilitation context (Leplege et al., 2007) aiming to determine the content and understanding of the term. Deriving from the medical world, the notion of person-centeredness, according to Leplege et al., can be viewed as both a descriptive term and a normative way of regarding how to approach and involve persons (Leplege et al., 2007). An outline of how the term can be understood includes attention to person-centeredness as a holistic, non-standardized approach based on empathy while taking the individual person’s contributions and needs into account. Further, person-centeredness includes a recognition of and respect for the person behind the diagnosis or disability and an awareness of the person an expert in his/her own life and current situation (Leplege et al., 2007).
Although the work of Leplege et al. is done with a focus on rehabilitation, the conceptualization and understanding of person-centeredness seems to suitably frame our expansion of Kitwood’s theory
56 by including a focus on active participation and patient contribution through dialogue in order to promote the ‘self’ (Leplege et al., 2007). Therefore, we suggest that person-centeredness, with the addition of reflexivity, can cover the understanding of the crucial need for attention to mutuality in relations regarding the patients’ contribution in the sustaining of personhood (Papers 1 and 2). In addition, reflexive person-centeredness also seem to cover the importance of being attentive to the guiding discourse of dementia (Papers 1, 2, and 3), as reflected in our results.
The discussion sections below elaborate on how reflexive person-centeredness frames the knowledge contribution concerning dementia-friendliness in hospitals of this study and contain the following headings reflecting the main findings of our study:
Awareness of how to sustain personhood
Awareness of relations
Awareness of the guiding discourse
Subsequently, methodological considerations regarding strengths and limitations in the qualitative and the mixed methods study are discussed.
7.1 Awareness of how to sustain personhood
Our results indicate that patients with dementia are challenged when they have to navigate in the hospital system because of their cognitive impairment (Paper 1), which is also revealed in several studies (Allwood et al., 2017; Clissett et al., 2013; Cowdell, 2010; Digby et al., 2017) . This is well explained by Sabat et al. as a challenged establishment of social identity in the interaction with others since issues like word-finding or memory difficulties increase the vulnerability of these patients (Sabat et al., 2004). Giving voice to Kitwood, a malignant positioning (Kitwood, 1997) often occurs due to such challenges and underlines the importance of reflexive awareness of how to sustain personhood and respect that every person represents a uniqueness as a result of the personal
57 journey through life; this was found to be of considerable importance in our results (Papers 1 and
2).
Consistently, our findings relate to issues about the preservation of personhood of patients with dementia during hospitalization, also extensively supported by current research (Dewing & Dijk,
2016; Digby et al., 2018a; Jensen et al., 2018; Petry et al., 2019). However, our results add to the existing literature by proposing that in order to sustain personhood there is a need for reflexivity regarding whether personhood is given by others, as recommended by Kitwood (1997), which keeps the patient passive and increase vulnerability, or determined by mutuality, which conversely promote the patients active agency, the latter suggested by Bryden (2020). Concerning the conceptualization of the encounter between patients with dementia and hospital staff (Paper 1), it is suggested that despite the patient’s contribution and attempt to bring individual and personal aspects into the situations, these were often overlooked, which put the significant moments at stake.
However, when significant moments occurred, patients’ attempts to show who they are were recognized as legitimate contributions that allowed the patients to play an active role. Likewise, our results reveal that including the patient with dementia as a person must involve a balanced approach between staffs’ knowledge about the best way to include the person, knowledge about dementia, and the patient’s personal contribution (Paper 2).
The challenges to sustaining personhood in dementia in healthcare settings are similarly addressed in a systematic review of qualitative studies and a scoping review of policy documents (Bosco et al.,
2019). The review suggests that in order to sustain personhood among patients with dementia, it is essential that minor signs from the patient with dementia, initially regarded as insignificant, are grasped, as such signs can be an attempt from the patient to show who they are (Bosco et al., 2019).
Similar results are reported in literature, such as the notion of paying specific attention to addressing
58 the personal subjects of importance, resulting in patients with dementia experiencing feelings of safety and well-being (Digby et al., 2017; Prato et al., 2018; Reilly & Houghton, 2019). This adds support to our results, which suggest that dementia-friendliness occurs when hospital staff with warmth and compassion are able to see the person behind the dementia diagnosis and prioritize person over task (Papers 1, 2, and 3). Correspondingly, this is recommended as a way to balance the line between the specialized hospital context and the person with dementia in a kindly manner
(Bosco et al., 2019).
An interesting finding in our study was that in particular, the bodily expressions and needs of the patients and the response of hospital staff to these could determine whether the patient was seen as a person or left as a bystander (Paper 1). This underlines that a reflexive approach is needed to sustain personhood, since bodily expressions such as resistant behavior and wandering are often regarded as challenging and problematic behavior (Featherstone et al., 2019; Hessler et al., 2017; Norman,
2006). The importance of sustaining personhood through bodily expressions is similarly addressed in the work of Kontos (2005) as a re-thinking of person-centered care and described as ‘embodied selfhood.’ Kontos argues that the behaviors expressed in gestures from patients manifest personhood, whether these are verbal or non-verbal signals, and are essential to keeping the patients connected to the world. Further, it is argued that selfhood is sourced in the body, independent of cognitive function, and that by acknowledging embodied selfhood it is possible to recognize the person, who can be challenged in relationships and interactions (Kontos, 2005). Drawing on this work of Kontos, another theoretical contribution to the discussion of a reflexive approach to sustaining personhood is made by Jenkins (2014), who suggest a further stage of what is termed
‘inter-embodied selfhood.’ This suggestion reflects a need to downplay the dominant role of caregivers and focus on mutual recognition rather than on the patient who needs care delivered and determined by a caregiver (Jenkins, 2014). A realization of such mutuality is illustrated in our
59 results as the negotiation of significant moments, and the potential of such moments in hospital settings (Paper 1). This is additionally explained in our findings as searching for reasons behind the behavior and bringing the person to the fore, instead of reacting inadequately and emotionally because the patient’s attempt to express her/himself is misinterpreted (Paper 3).
In agreement with the above-suggested ethical line of Kontos (2005) and Jenkins (2014), a theoretical examination of person-centered care in health care identified an ethical stance of treating patients as persons as opposed to person-centered care that focuses on process and outcome.
Arguing that there is a tendency to use the concepts relating to person-centered care uncritically and, as a non-reflective guide in making decisions that seem right from one’s own point of view, a
‘person-al capabilities’ approach has been proposed that includes the capabilities of the person from the past and the present (Entwistle & Watt, 2013). This involves an approach, which is respectful and supportive of the patient to meet the patient as a person and does not rely blindly on the principle of autonomy and self-determination. They argue that the focus on supporting the capabilities of the person expands the ethical line of the concepts of person-centeredness. (Entwistle
& Watt, 2013). This is also suggested in our findings as being the balance between protection and exposure that is required in order to respect the patient as a person as well as to respect the person’s capabilities of being a patient (Papers 1 and 2).
Addressing the patients’ life story in dementia care is widely acknowledged as a way to sustain personhood among persons with dementia (Berendonk & Caine, 2019; Cooney & O’Shea, 2018;
Grøndahl et al., 2017; Kindell et al., 2014; McKeown et al., 2015) and is described to facilitate a person-centered approach (Cooney & O’Shea, 2018). However, knowledge about its use in hospital settings is sparse. While life story is regarded as a tool for enabling of bringing the person to the forefront, some concerns should be addressed. As our results suggest, there are opinions differ
60 concerning the usefulness and content of such tools. However, an overall agreement was expressed concerning the use of life story tools to see the person behind the diagnosis as an important element in dementia-friendliness (Paper 2). Whether the diversity in opinions indicates hidden intentions related to personal benefits or feelings is unknown. However, the importance of knowing the person was regarded as vital and the different opinions revealed that the use of life story must be dynamic and embedded in daily work if it is going to be useful, which aligns with finding of other research
(Gridley et al., 2018). Nevertheless, an awareness of the life story as a tool told by relatives is needed (Berendonk & Caine, 2019; McKeown et al., 2015) since this perspective might not reflect an authentic perspective regarding the person with dementia and thereby a disconnection between the patient as a person and the content in life story tool may be present. Similarly, attention to the intended use of life story tools is required as it can be viewed as a tool that can ease the workflow of staff but not necessarily benefit the patient with dementia (Kindell et al., 2014) and carry the risk of de-storying the patient with dementia. Responding to this concern, our results show that patients with dementia benefit from the active use of their life story as a tool in terms of involving and trying to understand them (Paper 1). This is supported by Cooney and O’Shea, who found that the use of life story in dementia care seems to create a more in-depth understanding of the person with dementia as opposed to just knowing something about him/her (Cooney & O’Shea, 2018). This distinction is not covered explicitly in our results and thus leaves it unanswered as to whether both knowing the person and understanding the person are required as a part of coining dementia- friendliness in the theme ‘balancing knowledge’ (Paper 2). Nevertheless, significant moments seem to appear when the patient’s personal story is explicitly addressed (Paper 1) and further, personable solutions for patients with dementia are created as a result of increased knowledge and positive attitudes, specifically with regard to the patients’ preferences (Paper 3).
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The above discussion concerning how to sustain personhood reveals that this is a challenging task that requires additional awareness in clinical situations between patients with dementia and hospital staff. Some conflicting and divergent perspectives are addressed indicating that personhood is not a straightforward concept to either define or to use as a tangible guiding principle in the approach to patients with dementia. This is similarly addressed in a review of the Irish national dementia strategy, which reveals that although the increased focus on personhood is substantiated through documents, the definition appears to be unclear in light of what personhood entails (Hennelly &
O’Shea, 2019). Likewise, a clear operationalization and translation of personhood into suggested pathways informing care is questioned, though a full conceptualization of personhood is found to be difficult (Hennelly & O’Shea, 2019). In light of this, the next section in the discussion addresses relational matters as these are suggested to have considerable influence on the sustaining of personhood (Kitwood, 1997), which is also visible in our results, since the way hospital staff relate to the patients with dementia potentially impacts the possibility of sustaining personhood (Papers 1 and 2).
7.2 Awareness of relations
Our findings indicate that aspects concerning the relational interactions of patients with dementia with hospital staff calls for further discussion as the interactional responses from hospital staff seem to influence dementia-friendliness (Papers 1, 2, and 3). From different perspectives, our results underpin that pre-determined understandings of patients with dementia being implicit in the interactions may contribute to an unintentional exclusion of the patient as a person (Papers 1 and 2).
It is widely recognized that persons with dementia are challenged in their relationships with others
(K. M. Patterson et al., 2018). In addition, the hospital context and facing the hospital system as a whole have been found to increase these challenges of patients with dementia (Allwood et al., 2017;
Dewing & Dijk, 2016; Digby et al., 2017, 2018b; Innes et al., 2016). This twofold challenge is
62 reflected in our results when the patients had to navigate the ambiguous kindness as well as the fact that the level of recognition could determine whether hospital staff regarded patients with dementia as true contributors in the clinical situation or let the clinical task guide them (Paper 1). Although that a person-centered approach in health care settings can serve as a response to such challenges, there seem to be some contradictions. Firstly, the hierarchical structures can appear unclear, which leads to a staff-dominant structure that leaves little attention to the person with dementia to play an active role (Smebye & Kirkevold, 2013). Secondly, a discussion paper suggests that person- centered care can be paradoxical as it can improve care and treatment and inform relationships positively on the one hand but on the other hand, can exclude groups such as people with dementia as their ability to follow a subject-subject relationship is threatened (Meranius et al., 2020). These conflicting features are similarly reflected in our results and contribute to the discussion of increased awareness on the relational factor in person-centeredness, also suggested in research
(Nolan L, 2006; Nolan et al., 2004), as a possible way to overcome the limitations of the hospital context and promote respectful relational bonds to the patient with dementia. As seen in our results, patients with dementia were often approached in concordance with what hospital staff thought was a fulfilment of their needs (Paper 1), which exemplifies the expert threat in person-centered care as a potential escalation of depersonalization, also discussed elsewhere (Bosco et al., 2019).
Specifically, the ‘care speak’ approach as an excluding gesture signified that the patient’s contribution was regarded as less important (Paper 1). This is also acknowledged in other research and is described as a patronizing treatment of patients with dementia (Digby et al., 2016; Zhang et al., 2020). In contrast, our results also emphasize that the expert threat can potentially be overruled if a collegial consensus based on a shared empathic stance is made, with regard to attentively approaching the patient with dementia (Paper 3).
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As is widely requested, our findings advocate for an increased reflexivity on how respect is manifested in relational interactions. This was reflected as taking the patient seriously with regard to personal aspects as well as the ability to be a patient with cognitive impairment and the difficulties this entailed during hospitalization (Papers 1 and 2). Further, our findings revealed the importance of not being labelled as a ‘dementia’ patient and exposed as a diagnosis, but being respected as a person (Papers 1 and 2). The concern about whether a disclosed dementia diagnosis results in depersonalization or an increased awareness of how to pay specific attention to both person and diagnosis was identified as a matter of personalized protection (Paper 2). This adds an important and sparsely examined element to the discussion of respectful interaction as a balancing act and confirms the findings of a review which reported that a disclosure of the diagnosis does not necessarily have positive protective outcomes (K. M. Patterson et al., 2018). In contrast, an evidence synthesis (Hines et al., 2010) points toward a merely positive impact of the disclosure of the diagnosis on the precondition that the involved staff have sufficient knowledge about dementia.
The element of respect is similarly discussed in studies of dignity preservation in dementia care
(Tranvåg et al., 2013, 2014) which regard dignity as a subjective experience closely linked to relational aspects (Tranvåg et al., 2014). From the perspectives of participants with dementia, it is underpinned that a reflexive awareness of how relational aspects play a crucial role in the preservation of dignity is needed. It is suggested that feelings of being met with respect, kindness and encouragement to empowerment are of importance in relational interactions if dignity is going to be preserved (Tranvåg et al., 2014). This adds support to our findings of the importance of being seen as a person, leaving the passive bystander position, and being respectfully included in a kind and balanced way (Papers 1 and 2). However, our findings expand the understanding of kindness, as kindness can be delivered in an ambiguous way, which challenges the patient with dementia in navigating the clinical situations if kindness simultaneously signals inclusion and exclusion (Paper
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1). A response to this dualism is suggested elsewhere in our results as a ‘true kindness,’ interpreted as an intrinsic authentic element that is a part of dementia-friendliness (Paper 2)
The above discussion of personhood and relational aspects in light of dementia-friendliness indicates that the hospital culture somehow influences the approach to patients with dementia at the individual level. This substantiates the need to discuss existing culture and guiding dementia discourse, which our results consistently advocate for in order to broaden the knowledge base about dementia-friendliness in hospitals.
7.3 Awareness of the guiding discourse
Addressing the obviously opposing orientations in the hospital context between the biomedical focus and the person-centered focus, our results support and confirm previously conducted research
(Allwood et al., 2017; Dewing & Dijk, 2016; Digby et al., 2017; Featherstone et al., 2019; Innes et al., 2016; Jurgens et al., 2012). Moreover, we add important knowledge to the discussion about possible movements towards a diminishment of this contrast.
A dominant discourse in dementia, which is visible in our results (Paper 1), is that having a dementia diagnosis diminishes the ability to contribute to decision making due to cognitive impairment. Therefore our results add support to the discussion about the discourse of dementia by underpinning that predetermined assumptions about the patient’s ability to contribute risks restricting the autonomy of the patient with dementia. The discourse of dementia has been discussed widely in literature, and suggestions about the need for a new discourse have been acknowledged
(Bartlett et al., 2017; Birt et al., 2017; Jensen et al., 2018; McInerney, 2017; McParland et al., 2017;
Reed et al., 2017). As our results indicate, the hospitalized patients with dementia seem to be bound to the dichotomy of the current dementia discourses that, according to McParland et al., is the inadequate division between either ‘tragedy’ or ‘living well,’ both of which lead to stigmatization
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(McParland et al., 2017). However, the discourse of ‘living well’ has been a response to the previously dominating ‘tragedy’ discourse, which is visible in policy papers, guidelines and theoretical contributions (Fazio et al., 2018; Kitwood, 1997; Living Well With Dementia, n.d.;
Ministry of Health, 2017). This ‘living well’ discourse is supposed to acknowledge the person with dementia and focus on the individual subject, who has the opportunity to live well. Despite this overall focus on the individual person, some concerns have been raised about the underlying biomedical focus in such documents (Hennelly & O’Shea, 2019), and the possible pitfalls in relying too much on living well pathways, as this risks overlooking the ability to be attentive when deviations from what is expected occur and not dignify limitations (Bartlett et al., 2017; Ramsay-
Jones, 2019). Supported by McParland et al., who suggest that the living well discourse can in the worst case exclude people with dementia as the goal of normalization can appear to be unreachable
(McParland et al., 2017), our results exemplify the difficulties in navigating the encounters with hospital staff (Paper 1). It is suggested that a new discourse should include that those with dementia who have a limited ability to contribute due to severe cognitive impairment be bestowed value and worth (McParland et al., 2017; Reed et al., 2017). This is further echoed in our findings as comprising respect for the limited resources and acknowledging the remaining ability (Papers 1 and
2).
The survival of a current guiding discourse is maintained by and built through language as this manifests its justification (S. Dupuis et al., 2016; Grant & Marshak, 2011; Swaffer, 2014). As reflected in our results, the approach to patients with dementia (Paper 1), the phrasing of dementia- friendliness (Paper 2), and the explained impact of a dementia education intervention (Paper 3) depict how discourses are reflected in language and construct the surrounding world. Our results contribute to the discussion of how the potential influence of a current discourse of dementia enables dementia-friendliness in hospital settings. By suggesting that increased attention to the
66 language about dementia serves as guidance to dementia-friendliness, our results advocate for a critical view on policy documents and guidelines that currently guide dementia-friendliness in the context of our results. Given that language manifestation justifies the discourse of dementia in the context of a hospital setting, a more substantial covering of the ideas behind the core values (OUH -
Patientpyramiden, n.d.) directly related to the results in our study and the national guide to work dementia-friendly in hospitals (Nationalt Videnscenter for Demens, 2020) is crucial (Nielsen,
2020). Exemplified by these two above-mentioned documents, a prioritizing of the ‘patient first’ and a person-centered approach is clear; however, the translation of these features into clinical situations is, according to our results, easily masked in the biomedical language and routines of the hospital setting, which is also suggested by Hennelly and O’Shea (2019). This is further supported in literature and described as a well-known conflict concerning patients with dementia in hospitals, since staff overtly agree that a person-centered approach is preferable but that organizational elements and routine work complicate the implementation and blur its realization (Eastham & Cox,
2017; Gwernan‐Jones et al., 2020; Handley et al., 2019). As our results reveal, there is a need for a continuous reflexivity regarding how to carry out person-centeredness to avoid that working in a dementia-friendly way and implementing dementia-friendly initiatives becomes just additional actions to be ticked off or only remain on paper (Papers 2 and 3).
As supported by Dewing (2019), a thorough culture change is needed in order to assure a comprehensive person-centeredness, clearly reflected in our results as a changed attitude toward patients with dementia throughout the hospital resulting in a committed team approach (Paper 3).
Even though our the results we reported in Paper 3 do not specifically reflect the encounters between patients with dementia and hospital staff, an indication of a movement beyond the dichotomized discourse of dementia is present as a shared commitment towards a more person- centered approach. Serving as an essential knowledge contribution to dementia-friendliness in
67 hospitals, our results are well-illustrated by the theoretical work of Grant and Marshak (2011), who propose how discourses construct reality and within changes in language, practices, and narratives new discourses are justified (Grant & Marshak, 2011). This is additionally supported by Dupuis et al (2016), who found that to change culture in dementia care requires a re-examination of language, values, attitudes, and routine work supplemented by reflexive thoughts about the current institutionalization of work and within what works and what needs a renewal (S. Dupuis et al.,
2016).
Underpinning an important finding of our study, a facilitator of the changed culture was the inclusion of all staff members in the dementia education intervention as this was found to set professional boundaries aside and encourage a dementia-friendly line (Papers 2 and 3). This is echoed in several studies within the area of dementia research, suggesting that collegial teamwork across occupations around these patients, facilitated by an interdisciplinary focus in educational matters is essential if a culture change is going to succeed (Baillie et al., 2016; Chenoweth et al.,
2019; Gwernan‐Jones et al., 2020; Hung et al., 2019; S. K. Kim & Park, 2017; McCormack et al.,
2011; Nolan et al., 2004).
The above discussion sections have broadened the overall knowledge contribution of the study and the discussion of each sub-study of this PhD study. As an overall frame, reflexive person- centeredness is suggested to be an important contribution to consider in terms of coining dementia- friendliness in hospital settings at the individual and the organizational level. Given the diversity of the perspectives included and the methods applied to obtain knowledge, the complexity of dementia-friendliness in hospitals is highlighted. Nevertheless, the suggestion of reflexive person- centeredness can serve as guidance in line with specific hospitals routines and overall guidelines to
68 care and treatment in order to work in a dementia-friendly manner when a person with dementia is admitted to hospital.
7.4 Methodological considerations
In this section, methodological considerations are discussed with regard to the qualitative methods
(Sub-studies 1 and 2) and the mixed methods approach (Sub-study 3). The discussion is separated into sections concerning choice of methods, recruitment and½ participants, data collection, analysis and results, mixed methods integration, and generalizability and transferability.
The discussion involves reflexivity and justification of choices in regard to quality judgement of the study processes and relies on the scientific criteria of validity, reliability, and transferability.
Although such criteria are more associated with quantitative rather than qualitative research, the use is justified by the ongoing discussion with no agreement as to whether qualitative research can be assessed by such criteria or more specific criteria might be more appropriate (Dixon-Woods et al.,
2004; Leung, 2015) in order to rely on well-known criteria. In the sections below the scientific criteria are modified to the methodologies.
7.4.1 Methodological considerations regarding choice of methods
The discussion of methodological considerations with regard to the choice of methods implies attention to the scientific framework that guided the study. Addressing the ‘what works’ statement often associated with pragmatism does not mean that ‘everything goes’ (Creswell & Plano Clark,
2018). In contrast, the use of a variety of methods responds to the overall aim of this study. This is a validity strength, as a multi method perspective allows real-world problems such as dementia- friendliness in hospitals, which are in fact seldom one-dimensional, to be approached from different angles and gives substantial power to the knowledge contribution (Mason, 2018). This is additionally reasoned by the breath of our research questions.
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Moreover, pragmatism permits a bottom-up perspective, since the definition of a real-world problem and the need for research to solve this problem is sourced in practice in contrast to its origin in assumptions of a scientific framework. Given this suggestion, overcoming the top-down frame of mind implies that the research questions define the most appropriate methods to provide answers to these questions (Mesel, 2013). However, familiarity with the different methods could be a concern.
The ethnographic approach used in Sub-study 1 allowed us to observe events that the informants, because of their cognitive impairment, were challenged to describe through language. Additionally, this approach allowed the researcher to observe nonverbal communication, feelings, named and unnamed goals, and bodily expressions in different social situations (Kawulich, 2005). The advantage of choosing the ethnographic approach is visible in our results as it allowed us to discover the significance of paying attention to how patients with dementia signal their personal story.
The use of focus groups in Sub-study 2 allowed us to generate data from multiple perspectives of the same topic and take advantage of the group processes that facilitate the sharing of perspectives derived and inspired by group discussions (Halkier, 2016). The advantages of being interviewed in a group session were regarded as particularly suitable for persons with dementia, as this would diminish the possible feelings of pressure to provide immediate answers and respond adequately to questions compared to individual interviews (Savitch et al., 2006). Furthermore, since the group of persons with dementia had already been established and was regarded as a safe place in which to disclose memory, language impairment, and vulnerability, the choice of focus groups was supported.
The choice of a mixed methods approach to examine how an education intervention impacted dementia-friendliness was justified by the shortcoming of relying too heavily on statistical results
70 when assessing the impact of dementia educational interventions since such assessments reveal limited information about the impact on practice (Abley et al., 2019; A. Scerri et al., 2017). Thus, the qualitative interviews enabled us to explore how general hospital staff experienced the impact of outcome scores in order to conclude whether the learning outcome assisted a dementia-friendly approach.
7.4.2 Methodological considerations regarding recruitment and participants
The recruitment of participants to the study comprised detailed information to gatekeepers at the organizational and professional level in writing and orally. This was done to assure confidence and to avoid unintentional experiences of feeling monitored, criticized, or disturbed when carrying out or talking about professional work. Particularly in Sub-study 1, these issues were present and thus respectfully handled, as the observer accepted denial of access in different situations and provided ongoing information about the purpose of the observations if this was requested by the involved staff. The dependency of gatekeepers’ support, however, was a condition that influenced the ability to collect and generate appropriate data throughout the study.
In line with the assumptions about putting the patient first, which influenced how the study was planned, the perspectives of persons with dementia were broadly included in this study (Sub-studies
1 and 2). This is a validity strength as it provided the opportunity to emphasize a true patient perspective and as a mutual influence, the core values (OUH - Patientpyramiden, n.d.) were translated back to inform the setting by including the voices of persons with dementia.
Validity regarding the participants concerns whether the included participants are appropriate in order to answer the research questions (Leung, 2015). In our study, the participants in the three sub- studies were regarded as appropriate in order to generate data that provided nuanced and in depth perspectives with regard to answering the research questions.
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The number of participants in the focus group interviews (Sub-study 2) represents both strengths and limitations. The small number of participants assured that attention was paid to the vulnerability of persons with dementia as well as the group of relatives. In the groups of hospital staff and representatives of the Alzheimer’s Association, however the small number of participants was a limitation as the group discussions could have yielded broader perspectives had an extended variety among groups been represented (Halkier, 2016).
According to Kvale and Brinkmann (2015) the decisions about if or when the number of participants is sufficient to cover and produce enough data to answer research questions are guided by having collected the needed interview data. Another suggested criterion for sufficient data collection in qualitative studies is that the data be rich and variant (Mason, 2018). However, we could not be completely sure that our sample could provide sufficient data, as we collected and analyzed the qualitative data sequentially; hence, this was a potential limitation in our study.
However, as we found enough substance in our data to answer research question, we more likely approached saturation in an analytical way (Saunders et al., 2018).
In the quantitative phase in Sub-study 3, we used a purposeful total population sampling. Therefore, we did not estimate sample size (Cornelius LJ., 2006): however, the distribution of the participants concur with the distribution of professions at the hospital (Nøgletal for OUH, n.d.). Additionally, the lower response rate at the second and third measure time represents a threat to the validity of the results. However, response rates cannot be regarded separately to determine low validity (Morton et al., 2012), and the stable distribution of professions across measure times compensated for this. An analysis of respondent characteristics of the respondents who chose to drop out would, however, have strengthened the validity.
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7.4.3 Methodological considerations regarding data collection
Justified by the reliance on pragmatism, reality is in this study regarded as both multiple and singular. This allowed for the data collection to involve both quantitative and qualitative methods and thereby the researcher’s role was differentiated in regard to dependency on the participants and on the knowledge obtained (Creswell & Plano Clark, 2018).
When collecting quantitative data in Sub-study 3, independency between the respondents and the researcher was present because the questionnaires were distributed electronically and responses were directly imported to a database. Furthermore, the researcher did not influence the subsequently calculated results. Instead, these results were objectively tested in order to confirm or reject the stated hypotheses.
The use of our questionnaire DeFHEAQ (described in section 5.4.2.2) to collect data during the quantitative phase in Sub-study 3 yields both strengths and limitations with regard to validity and reliability. One strength is that the questionnaire was developed for the specific purpose of examining the impact of the local education intervention, and it was developed and validated with the inclusion of a sample similar to the target population of general hospital staff participants in
Sub-study 3. A limitation is that relying on one instrument produces more narrowly focused results than if we had included other validated instruments concurrently in our examination as seen in similar studies (Garrod et al., 2019; Karrer et al., 2020; A. Scerri et al., 2017).
Qualitative data collection, in contrast, views the dependency of the researcher in relation to the participants and the generated knowledge as an essential element. This element required reflexivity concerning the role of the author of this thesis, who collected the qualitative data in Sub-studies 1 and 2 and the qualitative phase in Sub-study 3 since data is contextual and relational and thus knowledge relies on contextual and relational matters (Kvale & Brinkmann, 2015; Mason, 2018).
Further, reflexivity on the researcher role and how this role influences data collection is suggested
73 to determine validity and reliability with regard to how data were systematically (the observation guide was the same throughout Sub-study1 and the same interview guide was used in Sub-study 2 and the qualitative phase in Sub-study 3) and consistently collected (Kvale & Brinkmann, 2015;
Leung, 2015).
In focused ethnography, familiarity is a precondition as it strengthens the possibility of getting rich data in short time visits (Knoblauch, 2005). However, a background as a nurse challenged familiarity and required reflexivity during observations in Sub-study 1. To apply what Hammersley and Atkinson call ‘fighting familiarity’ (Hammersley & Atkinson, 2007), a constant awareness of managing one’s insider and outsider position was balanced in order to assess the potential unknown in the encounters. Assisted by the nine dimensional observation tool inspired by Spradley (1980), the professional approach to the clinical context was controlled to avoid blind spots as well as over- identification with staff. Field relations to the participants as well as to the involved hospital staff were established to get access to the field and assure a trusting relationship; however, at times the observer role was confused by the participants with dementia as they asked the observer for help or questioned something in relation to their care and treatment. In such cases, help was given or staff were called, which exemplifies that doing fieldwork is about making compromises; even though the research purpose was made explicit and informed consent was obtained, the observer position can be ambiguous and require ethical considerations that go beyond this purpose (Mason, 2018).
Further, hospital staff at times consulted the observer to discuss care issues with the observer, which could have also complicated and limited the observer role (Hammersley & Atkinson, 2007).
Additionally, hospital staff sometimes excluded the observer by pulling a curtain or screen or asking the observer to leave. This was respected and likewise exemplifies that ethnography is not straightforward in terms of following ethical codes related to research. Instead, the role of the
74 observer needs to be constantly judged with regard to the context and rely on situational ethics
(Mason, 2018).
In the focus-groups in Sub-study 2, a moderator assisted in order to support the management of the above-mentioned challenges related to familiarity, as in focus groups the discussions are dependent on how the interviewer facilitates and leads these (Halkier, 2016). During interviews, a challenge was not to use professional terms. This was difficult to avoid, however, when interviewing hospital staff and is a limitation as it could have influenced the depth in data since consensus among participants was frequently reached without follow-up questions to examine such consensus. In the interview with participants with dementia, attention was paid that questions did not threaten their dignity and in the interview an advantage of the professional background was that it enable an immediate sense of observing emotional discomfort. Additionally, when discussing the interview with participants with dementia with the moderator and afterwards listening to the recording of the interview, it was clear that the interviewer failed to ask questions that required memory and the ability to think abstractly. Such limitations could have been reduced if some objects or pictures had been brought to the interviews as this could have supported the persons with dementia to better respond and discuss topics concerning dementia-friendliness in hospitals, as suggested by Hung et al. (2017).
When interviewing hospital staff in the qualitative phase in Sub-study 3, the aim was to explore how hospital staff experienced the outcome of the education intervention. Given that these outcomes guided the interviews, the interviews had a tendency to be more confronting with the interviewer more actively involved in the dialogue in order to search for how the hospital staff reasoned the impact of the increased scores than in the life-world interviews are usually conducted .
This is what Brinkmann (2007) calls ‘epistemic interviews’ and even though this was initially unintended, the interviewer experimented with more courage as this approach seemed to produce
75 useful knowledge. However, and with the familiarity as a nurse in mind, these qualitative interviews at times developed into a professional dialogue between colleagues, which could be regarded as a limitation.
Lastly, and with regard to reflexivity on the researcher role as previously described, a common reliability issue to address concerning the qualitative data collection is that the author of this thesis was often identified with the dementia-friendly hospital project team and seen as a representative of the hospital. In an attempt to overcome this issue, this issue was explicitly addressed from the beginning and throughout the data collection, as it became clear that the participants sometimes hesitated to make critical comments about dementia-friendly initiatives at the hospital.
7.4.4 Methodological considerations regarding analysis and results
As we adhered to the beliefs that combining analytical approaches in the search for real world perspectives of dementia-friendliness in hospitals would potentially lead to more complete results
(Hathcoat & Meixner, 2015), the validity with regard to the extent that our results are a representation of perspectives of dementia-friendliness as it intended is strengthened.
In qualitative approaches reliability is associated with consistency and triangulation (Leung, 2015).
In our study, reliability is justified by a comprehensive and detailed description of the analytical procedures and the adherence to the empirical data in order to assure transparency. The systematic approach to data is described in in detail in Paper 1, exemplifying that an awareness of separating
‘pure’ data and the researchers immediate reflections represented as field note comments was vital in order to pay attention to how data can be influenced by the researcher (Mason, 2018). This was likewise a consideration concerning the notes made during interviews in Sub-study 2 and the qualitative phase in Sub-study 3. The use of quotes in our study serves as a validation of the accurateness in the analytical processes and interpretation of the empirical material and thus
76 increases reliability. However, it is important to be aware of whether the focus is on representativeness or uniqueness when doing qualitative research. In Sub-study 2 and the qualitative phase in Sub-study 3, some of the quotes represented a uniqueness and this exemplifies that in qualitative research it is possible to give substantial power to a particular personal statement
(Flyvbjerg, 2010). Addressing triangulation in regard to reliability, the team of supervisors and co- authors have contributed to the discussion of the analysis and interpretation in the three sub-studies.
Thus, reliability is sought to the extent that qualitative interpretation allows.
The use of abductive reasoning in Sub-study 1 increased validity as it provided the opportunity to go beyond the surface of encounters between patients with dementia and hospital staff and enhance a comprehensive understanding and conceptualization of the complexity in such encounters.
Further, the discovery of surprising events, which is closely associated with abductive analysis
(Tavory & Timmermans, 2014), increased the validity of the findings, with regard to the researcher’s ability to be open minded. To distinguish abduction from purely inductive or deductive ways of reasoning is often outlined to justify its usefulness (Eriksson & Lindström, 1997; Tavory &
Timmermans, 2014), although abductive reasoning benefits from both inductive and deductive approaches, as the data in itself says something, which is tested towards a theoretical perspective.
Critical voices claim that abduction relies on coincidence in that different theoretical perspectives is applied and the ones found to fit most appropriately to the empirical material are chosen (Tavory &
Timmermans, 2014). To overcome this critique, we used the guidance of sensitizing concepts as directional to the analytical process with an awareness of a clear linkage between these concepts and the indicators visible in the transcribed field notes (Hammersley & Atkinson, 2007).
The adherence to Mattingly’s theoretical concept of ‘Healing Dramas and Clinical Plots’ helped us to discover and conceptualize the surprising events, that were somehow breaches in the most
77 ordinary hospital routines and thereby strengthened the validity of our results. Even though
Mattingly’s theory does not explicitly refer to dementia, the focus on human experience and narratives (Mattingly, 1998) and the insight from her theory enabled us to understand the fragmented encounters from the patients’ perspectives, which were manifested in our transcribed field notes.
In addition, the philosophical input from Ricoeur (2005) contributed to the validity of the results, as his identification of the semantic connectedness of different applications of the word ‘recognition’ gave an enhanced understanding of the complexity of encounters between patients with dementia and hospital staff and importantly, that recognition also entails ‘otherness’ (Sohn, 2014)
Validity issues should be addressed regarding the use of thematic analysis in Sub-study 2 and the qualitative phase in Sub-study 3. Firstly, reliance on the descriptive approach (Sub-study 2) and staying close to the participants’ words and the level of interpretation requires attention. Qualitative descriptions are often associated with thematic analysis when searching for straight descriptions of a topic that is somehow unspoken but is nevertheless of importance to get clarified in order to give guidance to initiatives etc. (Bradshaw et al., 2017; H. Kim et al., 2017; Neergaard et al., 2009).
However, it is suggested that one characteristic of qualitative descriptive studies is the low inference and the closeness to the language used by the participants, which could interfere with the levels of interpretation in reflexive thematic analysis (Braun & Clarke, 2019). In contrast, and according to Sandelowski (2010), this is not really a threat since the descriptive approach is neither a theoretical nor a non-inferential approach but requires a reflexivity concerning the framework in which the inquiry is situated (Sandelowski, 2010). To increase validity during the analytical process congruence between research question, data, and findings was constantly addressed concerning the level of interpretation and participant descriptions.
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Secondly, the inductive-led search for themes together with the guidance from quantitative results in the analytical process in the qualitative phase of Sub-study 3 requires attention regarding validity.
However, this is a well-known threat in the explanatory mixed methods sequential design (Creswell
& Plano Clark, 2018). To face this threat, attention was paid to search for detailed descriptions and expressions of these predetermined elements from the quantitative phase in order to explain how the participants experienced the impact of the education intervention. This twofold challenge is associated with the central idea of integration in mixed methods research and is addressed further in the next section of this discussion.
Regarding the analytical approach in the quantitative phase in Sub-study 3, the Wilcoxon signed rank test provided results that rely on summarized scores. This strengthens the reliability with regard to reproducibility but also serves as a validity threat as important information can be hidden and complexity can be simplified when different items are summarized. Additionally, the use of
Likert scale items represents some limitations when attitude and competence scores are regarded as linear (Rattray & Jones, 2007). To determine validity of questionnaire results in Sub-study 3, it is relevant to determine internal (whether the results can be caused by the intervention only) and external (whether the results can be generalized to a wider population) (Cornelius LJ., 2006).
Internal validity was threatened because the education intervention was implemented over an 18- month period. During that period some of the participants that attended the first courses may have brought their knowledge and learning outcome to their practices and this could have influenced the participants that attended the later courses, as they may have had an increased knowledge at the pre- intervention measure point. Furthermore, many other dementia-friendly initiatives were implemented at the same time as the education intervention went on, and therefore these other initiatives could have impacted the answers on the questionnaire and the measured effect cannot be
79 determined by the intervention alone. The external validation was strengthened, as the respondents represent the typical distribution of hospital staff. In addition, and as a limitation to the generalizability, the instrument used was developed for the specific local education intervention.
However, and with regard to validity, the quantitative results did not exclusively aim at examining the impact of the education intervention; rather, the aim was to provide results that could be integrated with the subsequently collected qualitative data.
7.4.5 Methodological considerations regarding mixed methods integration
In addition to quality assessment of the quantitative and qualitative research processes, a hallmark of quality assessment in mixed methods research concerns integration procedures (Creswell &
Plano Clark, 2018; Fetters et al., 2013). The potential validity threats in the explanatory sequential design (Creswell & Plano Clark, 2018) used in Sub-study 3 are addressed below and involve an appropriate connection from one phase to another: a) inadequate identification of important quantitative results to be further explained; b) failure to explain unexpected or conflicting results from the quantitative phase in the qualitative phase; c) the qualitative phase does not address a follow up on the quantitative results (Creswell & Plano Clark, 2018; Ivankova, 2014). Concerning the first issue, we identified our important results as significant effect on knowledge, attitude, and competence scores following a dementia education intervention with regard to the overall number of participants. Concerning the second issue, we identified and explained our important findings by exploring the quantitative results qualitatively, constantly being led by our research questions. In hindsight, we could have addressed an additional quantitative research question concerning the examination of professions that showed the highest and lowest increase of scores, as this could have prevented an exploration of quantitative results from being too general (Ivankova, 2014) and thereby respond more appropriately to the second validity threat concerning surprising or contradictory results. Concerning the third validity threat issue, we ensured that the participants in
80 the qualitative phase was selected from the quantitative sample and while we searched for maximum variation in the qualitative phase due to the consistent effect among participants. This connection of the phases helped in getting the preeminent explanations. In addition to these above quality criteria, we addressed the issue of meta-inferences when connecting the results from the quantitative and the qualitative phases through weaving and the creation of a joint display as recommended in mixed methods literature (Fetters et al., 2013; Guetterman et al., 2015).
The explanatory sequential design is regarded as the most straightforward mixed methods design
(Creswell & Plano Clark, 2018), which somehow eased the process, yet an uneasiness in applying two methods within a mixed methods approach has the risk of being overly directed by the mixed methods integration requirements.
7.4.6 Methodological considerations regarding generalizability and transferability
Given that this study employed a variety of methods, generalizability is addressed differently.
Statistical generalization refers to the representability of the sample (Cornelius LJ., 2006), which with regard to our quantitative phase in Sub-study 3 was met as our sample represents the distribution of professions in a hospital context nationally and internationally. This is further addressed in the section regarding methodological considerations regarding analysis and results. In the context of qualitative research, generalizability is often translated to transferability and is suggested to be viewed in terms of whether the understandings and insights have a broader significance (Mason, 2018). In light of our results comprising qualitative results (Sub-studies 1 and
2) and mixed methods results (Sub-study 3), the overall lines of the results concerning the approach to patients with dementia could be transferable to similar contexts within health care. Particularly, in settings characterized by long-term care practices, our results are transferable, since much literature concerning dementia and personable approaches targets this setting in, e.g., systematic reviews and policy recommendations (Blake et al., 2020; Fazio et al., 2018). With regard to
81 transferability, the overt recommendations from our study are that a reflexive person-centered approach on both the individual and organizational level is required if the person with dementia is going to be put forward and at the same time guidelines and policy recommendations are to be followed. This approach would also benefit other patient groups, those of increased vulnerability would, in particular, benefit from this overall reflexive person-centeredness found to be imperative when coining dementia-friendliness. Precisely emphasized by one participant in Sub-study 1, who responded to the fact that the actual hospital was going to be dementia-friendly: “Is dementia- friendly equivalent to person-friendly” (Person with dementia 3, Sub-study 1).
As a closing comment to this discussion, transferability must be regarded tentatively due to the philosophical assumptions that informed this study, since the result will never depict a ‘once and for all’ truth but rather a contextual truth operational for understanding (McCaslin, 2008) dementia- friendliness in hospitals, which requires further empirical verification to be considered transferable.
8.0 Conclusion
The aim of this study was to generate knowledge about dementia-friendliness in hospitals from the perspectives of patients with dementia and stakeholders and to generate knowledge about how a dementia education intervention targeted at general hospital staff impacts dementia-friendliness in hospital settings.
By comprising various perspectives, our results contribute with important knowledge by outlining that dementia-friendliness in hospitals is complex due to the obvious challenges in unifying dementia and friendly. Nevertheless, through reflexive person-centeredness embracing an awareness of how to sustain personhood, an awareness of relations, and an awareness of the guiding discourse, dementia-friendliness has the potential to be embedded in hospital settings:
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From the perspective of patients with dementia, our results suggest that addressing the patients’ personal story and recognizing the patient as a person who is able to contribute is a part of dementia-friendliness in hospitals. Exemplified by the identification of ‘significant moments’ as a possible facilitator to support the sustaining of personhood, dementia-friendliness in hospitals is suggested to concern paying attention to addressing even minor signs expressed by the patient, as this can have major importance in mutually negotiating what serves the patient best. Equally, from the perspectives of stakeholders, dementia-friendliness is suggested to be about ‘seeing the person behind the dementia diagnosis,’ which according to stakeholders, is only possible if hospital staff show the capacity to balance biomedical knowledge and preunderstandings of how to manage patients with dementia with knowledge about individual preferences. The stakeholders also emphasized that dementia-friendliness in hospitals includes that the patient with dementia is protected as a person, to avoid stigmatization and exposure and that taking care of the patient also involves taking care of how relatives are included. Identified from both the patient perspective and the perspectives of stakeholders, our results indicate that a basic element in dementia-friendliness relates to the way kindness is manifested in the relational interactions with patients with dementia.
The identification of the ‘ambiguous kindness’ as a typical condition that the patients with dementia had to navigate, showed that from the patients’ perspectives, sincerity and respect for the person and the challenges resulting from the dementia diagnosis are essential in dementia-friendliness, which from the stakeholders’ perspectives was also echoed as combining friendliness with dementia, with a particular emphasis on the manifestation of kindness.
As suggested in our results, an education intervention with a focus on dementia has the potential to impact the possibilities of embedding dementia-friendliness to hospital work and functioning. Our mixed methods inference indicates that when the entire workforce at the hospital increase their knowledge, changes their attitude, and improves their competencies, a basic prerequisite to work
83 dementia-friendly is established. In particular, our results indicate that the inclusion of the whole work force and the overall focus on interdisciplinary teamwork around the patients with dementia led to a ‘comprehensive commitment’ to jointly and reflexively improve and continuously nurture how patients with dementia are approached and discussed. Revealed from our results, the creation of a common ground significantly impacts dementia-friendliness as the organizational attitude toward dementia and the guiding discourse directly influence the endeavors of how to sustain personhood through kind and sincere relations at the individual level.
9.0 Implications The knowledge obtained from this PhD study proposes different perspectives to be considered in the future development and implementation of dementia-friendliness in hospital settings in relation to practice and research.
9.1 Implications for practice In the continuous effort to develop and implement dementia-friendliness in hospitals, it is essential to pay attention to the consistency between working dementia-friendly at the individual level, understood as the specific encounters between patients with dementia and hospital staff/context, and working dementia-friendly at the organizational level, understood as the overall line that facilitates support to dementia-friendly approaches (Nationalt Videnscenter for Demens, 2020).
Our results highlight that more emphasis should be given to the facilitation of collegial discussions and reflections regarding how dementia as a co-diagnosis to the medical diagnosis is included in decisions about how to approach the patient. Such focus is suggested to assist the crucial need for acknowledging the way the dementia diagnosis affects the patient’s ability to be a patient, and within this the underlying reasons for specific behavior, and to highlight that mutuality is essential in order to bring the person to the forefront.
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With respect to the complexity of hospitalizations of patients with dementia (Livingston et al.,
2020), our results indicate that there is a need for a thorough culture change regarding the awareness of dementia. This culture change must embrace that hierarchical structure and professional boundaries are set aside, as this can assist that effects of initiatives are sustained and a common ground is set (Feast et al., 2020; Gkioka et al., 2020). In addition, there is a need for a detailed examination and translation of the content in guiding principles and guidelines that intend to support dementia-friendliness (Hennelly & O’Shea, 2019). As our results suggest, implemented strategies are often perceived as just more strategies to be ticked off with the risk of blindly adjusting these new strategies to habitual hospital routines, with a risk of removing the personable focus. Moreover, the translation of guidelines must be carried out with the inclusion of the whole workforce, since keeping only selected professions responsible for dementia care and treatment is narrow-minded and risk that the patient’s course of treatment becomes fragmented and disorganized with regard to dementia-friendliness (Gwernan‐Jones et al., 2020). Further, this suggestion of enhancing ownership is needed, given that our results indicate that when every staff member feels responsible, an effort is made to include the patient with dementia based on a clear overall line and a growing operationalization of dementia-friendliness into the clinical context.
The need for education concerning dementia in hospitals is obvious, according to the impact of education revealed in our results. In hospital settings, there is a need for inter-occupational education, as the focus on inter-occupational teamwork around patients with dementia seems to facilitate that staff across occupations are more adapted to help and guide each other in creating personable solutions. Further, and concerning educational initiatives, our results suggest that future dementia-friendly educational initiatives include a plan for follow-up and continuous guidance and supervision to avoid blindly believing that being educated into dementia-friendliness is ‘a once and for all’ activity that equates to working dementia-friendly in the future.
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9.2 Implications for future research Our study is unique as it addresses dementia-friendliness in hospitals, which is sparsely examined.
Further, it included various perspectives of dementia-friendliness in hospitals, and lastly different methods were applied to obtain knowledge about dementia-friendliness. Given the breath of the study, our results could benefit from being further tested and challenged in order to develop evidence-based knowledge that could inform a dementia-friendly practice as well as give guidance to strategies.
Concerning the importance of sustaining personhood, more research is needed with regard to specific personalized interventions that can improve the experience of hospitalized patients with dementia. Moreover, the association between such interventions and the appearance of ‘significant moments’ (Sub-study 1) seems worthy of further exploration. The use of activity interventions is sparsely examined within hospital settings although, research to date shows promising effects of implementing activities that are targeted at the patients’ preferences (Lourida et al., 2020).
Knowledge from such research would expand the knowledge from our study with regard to how
‘seeing the person behind the dementia diagnosis’ (Sub-study 2) could be translated into the clinical context. Further, our results from Sub-study 3 indicate the need for more knowledge about how the effect of a dementia education intervention is translated into practice and affects the delivery of person-centeredness. This could include a measurement of person-centeredness as used in other studies (Grealish et al., 2019; Innes et al., 2016) in order to assess staffs’ opinions of their person- centered approach to patients with dementia.
An important finding in our study was that actively including bodily expressions from the patient with dementia facilitated that the patient with dementia was encouraged to contribute and from an observer perspective, felt recognized as a person (Sub-study 1). This finding provides new perspectives on how to include patients with dementia in research given that storytelling also represents gestures and the like that go beyond words. In the matter of respect, embodied narrative
86 storytelling could be a way to include and collaborate with people with dementia in research as this approach would take language impairment and lack of memory into account (Hydén, 2013). Thus, additional studies with dementia-friendliness in hospitals as a key point, could take advantage of such approaches and thus allows the urgently required voice of people with dementia to be respectfully included.
As possible gender variance and differences in how to manage the diagnosis psychosocially and the experience of living with dementia are known (Bartlett et al., 2018), gender perspectives should be considered in future research concerning perspectives of dementia-friendliness in hospitals.
The role of relatives in the examination of dementia-friendliness in hospitals was given only a little attention in our study in terms of the results and participants in research (Sub-study 2).
Nevertheless, our results did uncover that relatives’ support needs requires further exploration.
Therefore, an expansion of our results needs to involve relatives of hospitalized people with dementia and pay attention to their role; as such focus could provide important knowledge of dementia-friendliness in hospitals. Thus, the often perceived ‘negative cycle’ during hospital admissions of people with dementia could be illuminated, and suggestions for solving the ambiguous role of relatives would be provided (Burgstaller et al., 2018).
The environmental elements in dementia-friendliness in hospitals received only minor attention in our results (Paper 2), and included in the descriptions of protecting the patient as a person and with no obvious distinctions between environment and seeing the person. Thus, given the wide support in research (Bray et al., 2015; Brooke & Semlyen, 2019; Handley et al., 2015; Prato et al., 2018;
Waller & Masterson, 2015; Xidous et al., 2019), environmental factors are likely to be an important contribution to knowledge about dementia-friendliness in hospital settings within a Danish hospital context and thus require attention in future research.
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Finally, the support needs of general hospital staff with regard to assuring that the impact of the education intervention is sustained and nurtured, as suggested in our results (Sub-study 3), requires attention in future research. Otherwise, system-led structures and procedures risk threatening a continued effect (Gkioka et al., 2020). Therefore, more knowledge about hospital staffs’ support needs post-intervention with regard to sustainability is crucial.
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10.0 English summary
Introduction: This PhD study is associated with a large-scale implementation of dementia-friendly hospital initiatives initiated by the Department of Geriatric Medicine, Odense University Hospital,
Svendborg and develops knowledge about dementia-friendliness in hospitals. Politically, dementia- friendliness appears increasingly in documents and guidelines, and within a Danish context, a national dementia action plan, explicitly addresses the development of dementia-friendly hospitals.
Background: The number of people diagnosed with dementia is predicted to rise in the future worldwide as well as in Denmark. Within this rise, the number of patients with dementia being hospitalized will increase due to the co-morbidity and vulnerability associated with the diagnosis of dementia. The care and treatment of patients with dementia in hospital settings has been a subject of research during the last few decades, showing that the approach to patients is dominated by a medical and task-focused orientation that leaves the patient with dementia as a bystander during hospitalization. Despite this increasing interest, the knowledge about hospitalizations of people with dementia mostly derives from the perceptions of relatives and hospital staffs, revealing that little attention is being paid to the patients’ experiences and individual needs. Additionally, the relatives of patients with dementia and hospital staff experience that hospital care and treatment of patients with dementia lack dignity, which points toward the need for hospital staff to be further educated with regard to the care and treatment of patients with dementia. Moreover, the need for attention to patients with dementia in hospital settings is reflected in the responses of political guidelines and strategies nationally and internationally, as increased focus on how to improve the conditions for patients with dementia in hospitals is visible and the development of dementia-friendly hospitals has been prioritized. However, knowledge about important elements in the constitution of a dementia-friendly hospital is sparse, and knowledge about how the term ‘dementia-friendly hospital’ can be understood needs more attention. Nevertheless, education and training seem to be a
89 promising approach to creating changes toward a more dementia-friendly approach, but the knowledge of such initiatives is narrowly focused and the evidence of how education and training impact the approach to patients with dementia is sparse.
Aim: The study aimed to develop knowledge about dementia-friendliness in hospital settings from the perspectives of persons with dementia and important stakeholders and to develop knowledge about how a dementia education intervention targeted at general hospital staff impacts dementia- friendliness in hospital settings.
Methods: This study is scientifically informed by pragmatism and involves qualitative approaches and a mixed methods approach. Three sub-studies are included in the PhD study.
Sub-study 1 used an ethnographic method and included 10 patients with dementia during hospitalization with the aim of exploring the characteristics of the encounter between patients with dementia and hospital staff.
Sub-study 2 used focus groups and included four interviews with a total of 17 participants. The aim of this sub-study was to explore and describe stakeholders’ experiences of important elements of the dementia-friendly hospital.
Sub-study 3 applied an explanatory sequential mixed methods design and included 1107 participants in the quantitative phase based on repeated measures using questionnaires and 16 participants in the qualitative phase using single semi-structured interviews. This study aimed at examining the impact of a dementia education intervention on general hospital staffs’ self-reported knowledge, attitudes, and competence towards patients with dementia and to explore how they experienced the measured effect.
Results: The main results of this Ph.D. study show that dementia-friendliness is not straightforwardly applicable in hospital settings. Each sub-study contributed to these results representing different perspectives of dementia-friendliness in hospitals.
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When patients with dementia encounter hospital staff, the intention of staff to maintain a person- centered approach and personal contributions from patients with dementia often collide with the overall medical and task-orientated focus that characterizes the hospital system. This often results in a suppressed personhood among patients with dementia revealing little attention to how to bring the person to the forefront. However, significant moments with the person with dementia as an important contributor are possible (Sub-study 1). Seeing the person behind the dementia diagnosis is of great significance when discussing dementia-friendliness in hospitals with stakeholders.
Inclusion of the patient as a person in a thoughtful way, such as well as being aware of how to protect the person with dementia as a patient during hospitalization are found to be valuable (Sub- study 2). Working in a dementia-friendly way requires that all hospital staff are educated as this creates a joint commitment to approaching the patient with dementia as a person when a collaborative teamwork around patients with dementia is needed. An atmosphere of helping and guiding each other in challenging situations needs to be nurtured if an agreement of highlighting that the person is as important as the task to be solved is going to be equal to dementia-friendliness in hospitals (Sub-study 3).
Our results suggest that reflexive person-centeredness is an important element in dementia- friendliness in hospital settings. This approach involves a continuously reflexive awareness of how to sustain the personhood of patients with dementia, how to create dignified relations to patients with dementia, and on the influence of the dementia discourse that informs the hospital culture.
Implications: Our results indicate that there is a need to pay more attention to how to support dementia-friendliness to grow and interact at both the individual and the organizational level within a hospital context. Future attention to inter-occupational guidance and collaboration regarding clinical reasoning towards patients with dementia is suggested. Also suggested is that more attention is paid to how dementia-friendliness can be nurtured and sustained.
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11.0 Danish summary
Introduktion: Dette Ph.d. studie er knyttet til en omfattende implementering af demens venligt sygehus initiativer, i gangsat af Geriatrisk afdeling, Odense Universitets Hospital, Svendborg og udvikler derfor viden om demens venlighed på sygehuse. Demens venlighed som begreb fremtræder i stigende omfang i politiske dokumenter og retningslinjer, og inden for en dansk kontekst er udvikling af demens venlige sygehuse fremhævet i den nationale demens handleplan.
Baggrund: Antallet af personer med en demens diagnose forventes at stige på verdensplan og dermed også i Danmark. På grund af en øget forekomst af en række andre sygdomme og en øget sårbarhed forbundet med en demens diagnose, vil antallet af hospitalskontakter også stige for personer med en demens diagnose. Pleje og behandling af patienter med demens i hospitalsregi har været et interesseområde for forskning gennem de sidste årtier, med resultater der peger på at tilgangen til patienter med demens er præget af en opgaveorienteret tilgang og et overordnet biomedicinsk fokus, som ofte efterlader patienten som en udeforstående tilskuer. På trods af den stigende interesse for området, er den viden der er produceret i forskning ofte baseret på pårørendes og ansattes erfaringer og perspektiver, hvilket betyder at patienter med demens er sparsomt hørt i forhold deres erfaringer og særlige behov i forbindelse med hospitals besøg. I tillæg hertil peger såvel pårørende som ansatte på at der er brug for uddannelse i relation til håndtering af patienter med demens i hospitals regi, særligt med baggrund i oplevelser om mangel på værdighed i pleje og behandling. Ligeledes ses et behov for opmærksomhed på patienter med demens på hospitaler afspejlet i politiske handleplaner og strategier både internationalt, som nationalt, idet forbedringer af forhold for patienter med demens er efterspurgt, ligesom udvikling af demens venlige sygehuse er prioriteret politisk. Viden om væsentlige konstituerende elementer i et demens venligt sygehus er imidlertid sparsom, lige såvel som hvordan begrebet ’det demens venlige sygehus’ kan og skal forstås. Uddannelse i relation til demens ser ud til at kunne medvirke til at skabe forandringer, som
92 nærmer sig en demens venlig tilgang til patienter med demens, dog er viden om uddannelsesinitiativer ofte baseret på udvalgte grupper af ansatte og afdelinger og ligeledes er evidensen om effekten i den kliniske hverdag sparsom.
Formål: Ph.d. studiet havde som formål at udvikle viden om perspektiver på demens venlighed på sygehuse fra patienternes og udvalgte interessenters perspektiv. Ligeledes var en del af formålet at udvikle viden om, hvordan en uddannelsesintervention i relation til demens målrettet hospitals ansatte kunne påvirke demens venlighed i hospitalsregi.
Metoder: Ph.d. studiet bygger på pragmatisme som videnskabelig tilgang og der gøres brug af såvel kvalitative metoder som en mixed metode tilgang. Ph.d. studiet indeholder tre delstudier.
Delstudie 1 anvender en etnografisk metode og inkludere 10 patienter med demens i løbet af deres hospitals besøg med det formål at udforske hvad der karakterisere mødet mellem patienter med demens og hospitals ansatte.
Delstudie 2 anvender fokusgrupper som interviewmetode og er baseret på fire interviews med i alt
17 deltagere. Formålet med dette delstudie var at udforske og beskrive interessenters erfaringer og perspektiver på væsentlige elementer i relation til det demens-venlige sygehus.
Delstudie 3 anvendte et forklarende sekventiel mixed metode design og inkluderede 1107 deltagere i den kvantitative del baseret på gentagne spørgeskema målinger og 16 deltagere i den kvalitative del baseret på enkeltmands semi-strukturerede interviews. Dette delstudie havde som formål at undersøge effekten af en uddannelses intervention i demens gennem deltagernes selvrapporterede viden, holdning og kompetence score, samt en udforskning af deltagernes perspektiver på disse score med henblik på at kunne forklare effekten.
Resultater: Et overordnet fund i dette Ph.d. studie er at demens venlighed på sygehuse er muligt, men ikke simplet og ligetil hvad angår hospitals konteksten. Hvert enkelt delstudie gav et bidrag til dette overordnede fund med udgangspunkt i forskellige perspektiver på demens venlighed på
93 sygehuse. Når patienter med demens møder hospitalsansatte, er intentioner fra de ansattes side ofte at have en personcentreret tilgang, ligesom patienterne ofte forsøger at bidrage til situationerne.
Imidlertid sker det ofte at disse bidrag og intentioner kolliderer med det dominerende biomedicinske og opgave fokus som er karakteristisk for hospitaler. På baggrund heraf resulterer det ofte i at person med demens overses og der gives sparsom opmærksomhed på personen bag diagnosen. Det sker dog at der opstå særlige øjeblikke, hvor personen med demens får mulighed får at træde frem og bidrage til situationen (delstudie 1). At se personen bag demens diagnosen anses for meget væsentligt, når demens venlighed på sygehuse bliver diskuteret af udvalgte interessenter.
Det at inddrage patienten som en person med særligt fokus på hvilken viden der er væsentligt at have som ansat om demens og om personen, samt at det er væsentligt at beskytte personen med demens i forhold til at være en patient på hospitalet er fundet særligt betydningsfuldt (delstudie 2).
At arbejde demens venligt nødvendiggør at alle ansatte, som er i kontakt med patienter med demens er uddannede i relation til demens, da dette er med til at skabe en særlig fælles forpligtelse i relation til at tilgå patienter med demens som personer, især når et samarbejde på tværs skal etableres i relation til at hjælpe patienten. Det er væsentligt at den dominerende linje i samarbejdet mellem de ansatte er båret af hjælpsomhed og kollegial guidning i udfordrende situationer med patienter med demens og at denne tilgang bliver vedligeholdt. Dette anses for nødvendigt hvis der skal opretholdes en enighed om at personen med demens er ligeså vigtigt som opgaven der skal udføres, som et kendetegn ved demens venlighed på hospitaler (delstudie 3).
Resultaterne antyder at en refleksiv personcentrerethed er et væsentligt og vigtigt element i demens- venlighed i hospitalsregi. En sådan tilgang indebærer en kontinuerlig refleksiv opmærksomhed på hvordan man får personen med demens til at træde frem, hvordan man kan etablere værdige relationer med patienter med demens og hvordan den eksisterende demens diskurs påvirker kulturen på et hospital.
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Implikationer: Resultaterne fra studiet indikerer at der er brug for mere opmærksomhed på hvordan demens venlighed på hospitaler kan udvikles og få betydning på såvel det individuelle, som på det organisatoriske niveau. Ligeledes danner resultaterne baggrund for et forslag om en fremtidig opmærksomhed på vejledning og samarbejde på tværs af de hospitals ansattes professioner og arbejdsfunktioner i relation til at styrke det kliniske ræsonnement i situationer med patienter med demens. Ydermere, er et forslag at der rettes opmærksomhed på hvordan man kan vedligeholde og pleje demens venlighed i hospitals kontekster.
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Appendices
Appendix 1: Block search strategies
Appendix 2: Observation guide (Danish)
Appendix 3: Interview guide focus groups (Danish)
Appendix 4: Questionnaire DeFHEAQ (Danish)
Appendix 5: Interview guide semi structured interview (Danish)
Appendix 6: Approval from the Danish Data Protection Agency (Danish) and Data processor agreement (Danish)
Appendix 7: Regional Danish Committee of Health Ethics (Danish)
Appendix 8: Written information and invitation, all studies (Danish)
Appendix 9: Informed consent forms, all studies (Danish)
Appendix 1 Block search strategies
Literature search Combining blocks from Table 1 page 9
Blocks Search 1 Search 2 Search 3 Boolean operator OR Boolean operator AND Boolean operator AND Boolean operator AND within Blocks to combine Blocks to combine Blocks to combine Blocks 1. Dementia X X 2. Hospital X X X 3. Dementia-friendly X 4. Initiative X 5. Patient experience X 6. Education X
Date of last search for search no. 1, 2, and 3: 29/12 2020
Abbreviations:
PubMed:
Medical Subject Heading=MeSH Term
CINAHL:
Subject Heading=MH
Free text=TX
Search no 1: Patient perspective of hospitalization
PubMed 392 hits
Block 2- Hospital setting Block 1 - Dementia Block 5 - Patient experience
hospitals[MeSH Terms] dementia[MeSH Terms] Patients perspective[All
OR hospital[All Fields] OR OR alzheimer[All Fields] Fields] OR patient
hospital unit[All Fields] OR alzheimers[All Fields] perspectives[All Fields] OR
OR hospital units[MeSH AND OR alzheimer AND patients experience[All
Terms] OR acute disease[MeSH Terms] OR Fields] OR patient
hospital[All Fields] OR cognitive impairment[All experiences[All Fields] OR
acute hospitals[All Fields] Fields] life change events[MeSH
OR hospitals, Terms] OR life
general[MeSH Terms] OR experience[All Fields] OR
general hospital[All Fields] life experiences[All Fields]
OR general hospitals[All OR lived experience[All
Fields] Fields OR patients view[All
Fields] OR patient views[All
Fields] OR patient views of
treatment[All Fields] OR
patient views and
experience[All Fields] OR
qualitative research[MeSH
Terms] OR qualitative
research[All Fields]
Search no. 1: Patient perspective of hospitalization
CINAHL 191 hits
Block 2 - Hospital Block 1 - Dementia Block 5 - Patient perspective
(MH “Hospitals+”) OR (MH “Dementia+”) OR (TX “patient perspective”)
(MH “Hospital Units+”) “dementia” OR (MH OR (TX “patient’s
OR (TX “acute hospital”) “Alzheimer’s Disease”) perspective”) OR (TX
OR (TX “general AND OR (TX “Alzheimers”) AND “perspective) OR (TX
hospital”) OR (TX “Alzheimer”) “perspectives”) OR (MH
OR (TX “cognitive “Life experiences+”) OR
impairment”) (TX “experiences”) OR (TX
“patient experience”) OR
(TX “patient’s experience”)
OR (MH “patient attitudes”)
OR (TX “patient attitude”)
OR (TX “patient view”) OR
(FX “patient’s view”) OR
(MH “Qualitative studies+”)
OR (TX “qualitative
studies”)
Search no. 2: Dementia-friendly hospital
PubMed 47 hits
Block 3 - Dementia friendly Block 4 - Initiative Block 2 - Hospital
dementia-friendly[All Fields] strategy[All Fields] OR hospitals[MeSH Terms]
OR dementia friendly[All intervention[All Fields] OR OR hospital[All Fields]
Fields] OR initiative[All Fields] OR OR hospital unit[All
dementiafocused[All Fields] initiatives[All Fields] OR Fields] OR hospital
OR dementiafriendly[All AND program[All Fields] OR AND units[MeSH Terms] OR
Fields] OR dementia programs[All Fields] OR acute hospital[All Fields]
support[All Fields] OR programme[All Fields] OR OR acute hospitals[All
dementia capable[All Fields] strategies[All Fields] OR Fields] OR hospitals,
OR dementia awareness[All interventions[All Fields] general[MeSH Terms]
Fields] OR general hospital[All
Fields] OR general
hospitals[All Fields]
Search no. 2: Dementia-friendly hospital
CINAHL 34 hits
Block 3 - Dementia friendly Block 4 - Initiative Block 2 - Hospital
(TX “dementia friendly”) OR (TX “initiatives”) OR (TX (MH “Hospitals+”) OR
(TX “dementia-friendly”) “initiative”) OR (TX (MH “Hospital Units+”)
OR (TX “dementia capable”) “strategy”) OR (TX OR (TX “acute hospital”)
OR (TX ”dementia AND “strategies”) OR (TX AND OR (TX “general hospital”)
awareness”) OR (TX “program”) OR (TX
“dementia supportive”) “programs”) OR (TX
“intervention”) OR (TX
“interventions”) OR (TX
“programme”) OR (TX
“programmes”)
Search no. 3: Dementia education in hospitals
PubMed 334 hits
Block 2 - Hospital Block 1 - Dementia Block 6 - Education
hospitals[MeSH Terms] dementia[MeSH Terms] OR education[MeSH Terms]
OR hospital[All Fields] alzheimer disease[MeSH OR education department,
OR hospital unit[All Terms] OR alzheimers[All hospital[MeSH Terms] OR
Fields] OR hospital Fields] OR alzheimer[All education,
units[MeSH Terms] OR AND Fields] OR cognitive AND continuing/education[MeSH
acute hospital[All Fields] impairment[All Fields] Terms] OR training[All
OR acute hospitals[All Fields] OR education
Fields] OR hospitals, intervention[All Fields] OR
general[MeSH Terms] training intervention[All
OR general hospital[All Fields] personnel
Fields] OR general development[All Fields]
hospitals[All Fields] OR staff
development[MeSH Terms]
OR staff training[All
Fields] OR skills
training[All Fields] OR
staff education[All Fields]
OR personnel education
training[All Fields]
Search no. 3: Dementia education in hospitals
CINAHL 419 hits
Block 2 - Hospital setting Block 1 - Dementia Block 6 - Education
(MH “Hospitals+”) OR (MH “Dementia+”) OR (MH "Education+") OR
(MH “Hospital Units+”) “dementia” OR (MH (TX "education") OR (MH
OR (TX “acute hospital”) AND “Alzheimer’s Disease”) AND "Education,
OR (TX “general OR (TX “Alzheimers”) Interdisciplinary") OR
hospital”) OR (TX “Alzheimer”) OR (MH "Education, Nursing,
(TX “cognitive Associate") OR education*
impairment”) OR
(MH "Staff Development")
OR (MH "Medical Staff,
Hospital+/ED") OR (TX
"staff training") OR (TX
“Skills training”)
Appendix 2 Observation guide (Danish)
Observations guide Felt observation nr.__ Dato ______Kl.______
Rum Refleksioner:
Aktør
Aktivitet
Objekt
Handling
Hændelser
Tid
Formål
Følelser
Observationerne tager udgangspunkt i deskriptive observationer relateret til disse ni kategorier der skal bidrage til at indtage konteksten i den sociale situation 1) Rum: det fysiske sted 2) Aktør: Hvem er involveret 3) Aktivitet: En serie sammenhængende handlinger som personer udfører. 4) Objekt: De fysiske personer som er til stede 5) Handling: enkelthandlinger som personen gør. 6) Hændelser: en serie sammenhængende aktiviteter som personen udfører 7) Tid: sekvenser af hændelse over tid. 8) Formål: hvad nogen forsøger at opnå 9) Følelser: hvad som føles og kommer til udtryk
Fokus for observationerne vil være situationer, der vil give mulighed for at opnå viden om hvordan interaktionen mellem patienten med demens og hospitalsansatte udspiller sig
Appendix 3 Interview guide focus groups persons with dementia (Danish)
Interviewguide – personer med demens Definitionen af det demensvenlige sygehus er i gang med at blive til og det er det vi gerne vil have Jeres input til. Jeg fortæller meget kort om baggrunden for projektet.
Jeg vil gerne høre Jeres perspektiver, forventninger og ønsker til et demensvenligt sygehus.
Overordnet handler det om hvordan en person med demens ser på et demensvenligt sygehus og hvad man kan ønske sig af demensvenlige tiltag.
Introduktion og igangsætning
Præsentation af interviewer og moderator
Gennemgang af informationsmateriale og samtykkeerklæring
Præsentation af formål med interview, herunder kort gennemgang af baggrunden.
Information om:
Optagelse
Styring af interviewet
Definitionen af det demensvenlige sygehus er i gang med at blive til og det er det vi gerne vil have Jeres input til.
Vi vil gerne høre Jeres perspektiver på, forventninger og ønsker til et demensvenlighed på sygehuse. Der er nogle områder, som vi har udvalgt, men vi vil også meget gerne have Jeres tanker om andre forhold som går ud over det.
Indledende spørgsmål:
Overordnet handler det om at få Jeres perspektiv på hvad der er væsentligt når man skal udvikle et demensvenligt sygehus og hvad det skal indeholde.
Indledende snak
Hvor tit kommer I her, hvad laver I her, hvad kalder I Jer? Er det et rart sted at komme?
Jeg er tilknyttet Sygehuset i Svendborg og er i gang med at undersøge hvordan man kan gøre Svendborg sygehus mere venligt mod dem som har en demensdiagnose, så man føler sig godt tilpas og kan føle sig tryg, når man er på sygehuset.
Spørgsmål
Start spørgsmål Hjælpespørgsmål til interviewer og moderator
Hvad er det første I kommer Positive oplevelser til at tænke på, når jeg siger Negative oplevelser sygehus?
Hvad gjorde en positiv eller negativ oplevelse? Kan I lide at komme på et sygehus?
Hvis I tænker på et sygehus, Gode og mindre gode oplevelser som en bygning, hvad skulle Hvilken betydning har indretningen for at man fx kan orientere sig? denne så indeholde for at dette kunne understøtte de Hvilke ønsker vil I have til fx, enestuer, lys, udsmykning? behov en patient med demens har? Vil en anden indretning, betyde at man ville anvende andre rum på sygehuset, fx opholdsrum, daglig stuer
Aktiviteter, fx musik eller deltagelse i andre dagligdagsaktiviteter Hvad ville I forslå hvis I skulle nævne noget som kan gøre et sygehus demensvenligt ift indretning?
Hvordan tænker I at man som Hvordan skulle samarbejde på tværs af faggrupper under indlæggelse personale kan samarbejde ideelt set se ud, hvis man skal kalde sig demensvenligt sygehus? omkring patienter med Det er beskrevet i forskning at der er en meget ringe overlevering og at demens - hvad ville være en der sker uheldig kommunikation, som gør patienten forvirret og utryg god hjælp for patienter med demens?
En demenspakke, som man ser for andre sygdomme?
Tværsektorielt samarbejde – sygehusets samarbejde med både kommuner, hvad kunne man ønske sig af det?
Beslutninger der træffes i forbindelse med udskrivelsesplanlægning – hvilken viden er vigtig her og hvem skal inddrages?
Hvordan skal informations strømmen og kommandovejen være?
Hvad tænker I at der er Hvordan kunne man gøre det synligt under patientens indlæggelse at væsentligt ift at personalet der er tale om en patient med demens? (ofte er der meget fokus på ved at det er en patient med indlæggelsesårsag og diagnose) demens de møder? Kan det sidestilles med at der i journalen står at man ikke tåler penicillin?
Et skilt, en badge…?
Et demenskort, som i fælles medicin kort?
Særlige mekanismer der træder i kraft, når en patient med demens indlægges – et særligt beredskab? Som demensvenner, der kunne følge patienten i forløbet - ligesom stifindere ved indgangen på et hospital?
Skal der være bare en indgang for patienter med demens?
Hvor meget er det nødvendigt man ved fra forskning at man som ansat har og tilegner sig meget lidt at kende den patient man viden om den demente som personen bag diagnosen – måske fordi den møder med demens? er svær at finde?
Er det vigtigt at man som ansat på sygehuset ved hvad det er for et menneske de møder, med egen livshistorie Hvad tænker I om at alle ansatte skal uddannes i demens? Hvad skal personalet være uddannet i ift demens og er det vigtigt at alle ansatte på et hospital er uddannede?
Hvad skal man som minimum vide noget om?
Hvad vil I sige er en Man fokuserer meget på plejepersonale – hvad tænker I om alt det demensvenlig tilgang fra andet personale patienten møder? Er det nødvendigt for at udvikle et personalet? demensvenligt sygehus?
Forventninger til hvordan man kan blive mødt, som patient og pårørende – hvilke egenskaber er det vigtigt at man møder hos personalet – faglige- personlige
Hvordan ser I på inddragelse Hvad er pårørendes andel i det demensvenlige sygehus, hvordan skal de af pårørende ift at en patient inddrages? med demens er indlagt eller Hvilken rolle skal de spille? Hvad vil man gerne være med i? møder ambulant? Hvordan bør kommunikationen mellem fagprofessionelle og pårørende være?
Deling af viden mellem personale og pårørende
Tillidsfuldt samarbejde – undgå mistænksomhed og konflikt – forventninger
Hvis I skulle komme med et bud på, hvordan man med få ord kan definere demensvenligt – hvilke ord ville I så bruge?
Hvordan vil I beskrive det at være venlig over for en patient med demens?
Afslutning af interviewet, hvor deltagerne har mulighed for knytte bemærkninger, til det der er blevet talt om og hvor formål med interviewet og det videre arbejde med data gentages.
Appendix 4 Questionnaire DeFHEAQ (Danish)
Confidential Page 1 of 8 Demensvenligt sygehus spørgeskema
Kære medarbejder på Svendborg Sygehus
Tak for at du vil være behjælpelig med at evaluere uddannelsen i demensvenligt sygehus.
Svendborg Sygehus har en målsætning om at blive et demensvenligt sygehus. Derfor skal samtlige ansatte på sygehuset deltage i et uddannelsesprogram, hvor forskellige områder i forhold til den demente patient bliver gennemgået.
For at vurdere om den uddannelse der bliver tilbudt har den ønskede effekt, er det nødvendigt at stille de ansatte en række spørgsmål både før og efter uddannelsen.
Umiddelbart før dit planlagte uddannelsesforløb skal du derfor svare på nedenstående spørgsmål. De samme spørgsmål beder vi dig svare på 1 måned efter uddannelsen og igen 6 måneder efter du har gennemført uddannelsen.
Spørgsmålene handler indledningsvist om bla. om din profession, ansættelsessted og anciennitet, herefter handler de om din egen vurdering af din viden om, dine holdninger til og dine kompetencer i forhold til mødet med patienter med demens på sygehuset.
Der er 58 spørgsmål i det første spørgeskema og lidt færre i det andet og tredje.
Dine svar behandles fortroligt og opbevares elektronisk i et sikkert system. Ved offentliggørelse af reultaterne fra projektet er alle data anonymiseret og det er således ikke muligt at identificere deltagerne. Projektets dataindsamling, dataopbevaring og behandling af data er godkendt af datatilsynet.
Når resultaterne af spørgeskemaundersøgelsen er analyseret, inviteres ca 15 medarbejdere til et individuelt interview med henblik på at uddybe de opgjorte resultater med egne ord.
Dato for udfyldelse ______
Ønsker at forlade studiet Nej Ja
02/20/2019 10:37am www.projectredcap.org Confidential Page 2 of 8
Jeg giver hermed samtykke til at mine svar kan anvendes i forskning og tilkendegiver, at jeg er informeret skriftligt om projektets formål, og at de data jeg giver behandles fortroligt
Alder i hele år ______
Køn kvinde mand
Hvilken afdeling er du ansat i? Anæstesiologisk Afdeling V Bygningsdrift- og service Geriatrisk Afdeling G Gynækologisk Obstetrisk Afdeling Kirurgisk Afdeling A Klinisk Biokemisk Afdeling Logistik Afdelingen Medicinsk Afdeling M/FAM Neurologisk Afdeling Nyremedicinsk Afdeling Ortopædkirurgisk Afdeling Patient- og Pårørendeservice Radiologisk Afdeling Rehabiliteringsafdelingen Rengøring og Hospitalsservice Sygehus Apotek Fyn Urinvejskirurgisk Afdeling L Øre-, næse-, halsklinik
Hvad er din stillingsbetegnelse? Administrativ medarbejder Bioanalytiker Diætist Elektriker Elektroniktekniker Ergoterapeut Ernæringsassistent Farmaceut Farmakonom Fysioterapeut IT medarbejder Jordemoder Kemiker Laborant Læge Maler Maskinarbejder/maskinmester Portør Radiograf Rengøringsassistent Sekretær Servicemedarbejder Snedker/Tømrer Socialrådgiver SOSU assistent Sygehjælper Sygeplejerske Telefonist (Der skelnes ikke mellem forskellige funktioner indenfor de forskellige stilingsbetegnelser. Vælg det der kommer tættest på.)
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Anciennitet i hele år ______(Hvor mange år har du arbejdet i funktioner svarende til din nuværende jobfunktion/været uddannet/udlært. Du bedes angive 0, hvis du har under et års anciennitet.)
Hvordan er din typiske arbejdstid? dag aften nat skiftende
Har du direkte patientkontakt i din nuværende Hver dag funktion? Hver uge Et par gange om måneden Sjældent Aldrig
Er der en i din nære omgangskreds (familie eller Ja venner), der har/har haft demens? Nej
Har du deltaget i basis uddannelse på 1 dag i Ja forbindelse med, at Svendborg Sygehus skal være Nej demensvenligt
Har du deltaget i Problem Baseret Ja Læring/refleksionsseancer i forhold til demens i Nej egen afdeling?
Har du gennemført et e-learning kursus/ABC Demens? Ja Nej
Har du indenfor de sidste 5 år fået undervisning i Ja demens? Nej (Som et supplement til din nuværende uddannelse eller jobfunktion eller som pårørende)
Den uddannelse du tidligere har deltaget i, har haft mindre end to dage en varighed på to til fire dage fem dage eller mere
De næste spørgsmål handler om din viden om demenssygdomme og den adfærd, der kan kendetegne patienter med demens.
Ja Nej Ved ikke Demens er en naturlig del af det at blive ældre
Antallet af demente i Danmark forventes at falde
I hvilken alder får man oftest stillet diagnosen 40-60 års alderen demens? 60-80 års alderen ældre end 80 år ved ikke
02/20/2019 10:37am www.projectredcap.org Confidential Page 4 of 8 Ja Nej Ved ikke Demens skyldes forandringer i hjernen
Demens er en sygdom, der svækker de mentale færdigheder Demens inddeles i forskellige sværhedsgrader alt efter hvordan dagligdagsopgaver klares
Hukommelsessvigt skyldes altid demens
Demens kan helbredes Demens og delirium er samme tilstand
Hvor mange typer demens mener du, at der findes? En To Tre eller flere ved ikke
Hvad kendetegner efter din mening en person med Nedsat syn demens? Ændret personlighed (Der kan sættes mere end 1 kryds) Ændret dømmekraft Åndenød Svækket hukommelse Svækket gang og balance Forstoppelse Problemer med at tale/formulere sig Problemer med at holde på vandet Forkortet levetid Problemer med at orientere sig/finde vej Hjertebanken (Der kan sættes mere end 1 kryds)
02/20/2019 10:37am www.projectredcap.org Confidential Page 5 of 8 Ja Nej Ved ikke Patienter med demens kan miste deres evne til at udtrykke sig med ord
Patienter med demens kan reagere voldsomt på skift i omgivelser og miljø
Udfordrende adfærd, som fx aggression, kan være et udtryk for, at en patient med demens oplever at behov er udækkede (fx behov for mad/drikke, toiletbesøg, tryghed)
Det er vigtigt altid at korrigere/irettesætte en patient med demens, når hukommelsen svigter
Ændringer i adfærd hos en patient med demens skyldes altid forværring i demenssygdommen
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De næste spørgsmål er formuleret som udsagn. Du skal angive, hvorvidt du er enig i udsagnene på baggrund af dine egne holdninger til patienter med demens på sygehuset uanset din jobfunktion og dit ansvarsområde. Du bedes angive, hvor enig du er i de følgende udsagn:
meget enig enig hverken enig uenig meget uenig eller uenig Patienter med demens kan mærke, når man er venlig mod dem
En patient med svær demens skal ALTID genoplives i tilfælde af hjertestop
En patient med demens, hvor der tilstøder anden alvorlig sygdom, skal ALDRIG udsættes for livsforlængende behandling
Det er vigtigt, at pårørende bliver inddraget i forhold til at støtte patienten med demens, når patienten er på sygehuset
Patienter med demens bør være omgivet af velkendte personaler under sygehusophold
Det kan ikke betale sig at kommunikere med en patient med demens
Man bør være indstillet på at ændre sin planlagte arbejdsgang for at matche de behov, som en patient med demens har
Det er muligt, at hjælpe en patient med demens også selvom denne er afvisende over for hjælp Hvis en patient med demens viser tegn på modstand mod det, der skal ske (fx indtagelse af mad og drikke, undersøgelse, forflytning, blodprøver), er det altid bedst at lade vedkommende være
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Det er umuligt at kommunikere med en patient med svær demens
Det er muligt at forbedre sygehusopholdet for patienter med demens
De næste spørgsmål handler om din egen vurdering af dine kompetencer i forhold til patienter med demens på sygehuset. Du skal besvare spørgsmålene på baggrund af din egen jobfunktion og de opgaver du løser i det daglige arbejde. Du bedes angive, hvor godt du synes du kan:
meget godt godt hverken godt dårligt meget dårligt eller dårligt Hjælpe en patient med demens Indlede en samtale med en patient med demens
Forstå den måde en patient med demens kan agere på
Bevare en positiv indstilling til patienter med demens
Bevare værdigheden for en patient med demens
Håndtere udfordrende adfærd hos en patient med demens
Vurdere hvornår du har brug for dine kollegers sparring, for at kunne hjælpe en patient med demens
Vurdere hvilken information du skal give dine kolleger i en anden afdeling, for at gøre forløbet for patienter med demens bedst muligt
Kommunikere med en patient med demens, der kan udtrykke sig med ord
Kommunikere med en patient med demens, der mangler sprog
Genkende tegn på demens hos patienter
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Uddannelsen i demensvenligt sygehus har givet mig I meget høj grad større indsigt i, hvordan jeg skal hjælpe I høj grad patienter med demens I nogen grad I mindre grad Slet ikke
Her kan du give en uddybende beskrivelse af din besvarelse af foregående spørgsmål, om din erhvervede indsigt efter din deltagelse i ______uddannelsen i demens
Hvordan har du oplevet forståeligheden af Let spørgsmålene? Tilpas Svær
Hvor lang tid har du brugt på at besvare ______spørgeskemaet? (Angives i hele minutter)
02/20/2019 10:37am www.projectredcap.org Appendix 5 Interview guide semi structured interview (Danish)
Interviewguide til semistruktureret interview med ansatte på Svendborg Sygehus
Briefing Velkomst Præsentation af interviewer og deltager Formålet med interviewet, herunder en kort status på hvad spørgeskema undersøgelsens resultater viser Formålet med at optage interviewet Tidsramme Gennemgang af samtykkeerklæring Afdække eventuelle tvivlsspørgsmål
Forskningsspørgsmål (Mixed Interviewspørgsmål Method): Indledende spm: Kan du fortælle lidt om hvad du har lært om demens ved at følge de Hvordan kan kvalitative interview aktiviteter som har været iværksat i forbindelse med projekt data, som undersøger sygehus demensvenligt sygehus? ansattes oplevelser af effekten af en uddannelses intervention, Kan du fortælle lidt om din egen og den kollektive tilgang til patienter hjælpe med at forklare deres med demens sammenlignet med tilgangen før selvrapporterede viden, holdning og kompetence score fra et uddannelsesinterventionen? kvantitativt spørgeskema?
Direkte spm:
- Hvordan vil du beskrive din viden om demens efter deltagelse
i uddannelsen? Forskningsspørgsmål (kvalitativ): - Oplever du at din viden ændrede sig umiddelbart efter eller
har den ændret sig over tid? Hvordan oplever sygehus ansatte - Hvis du oplever en ændring, hvad havde betydning for denne effekten af en ændring? uddannelsesintervention?
- Hvordan vil du beskrive din holdning til patienter med demens efter din deltagelse i uddannelsen? - Oplever du at din holdning ændrede sig umiddelbart efter eller har den ændret sig over tid? - Hvis du oplever en ændring, hvad havde betydning for denne ændring?
- Hvordan vil du beskrive dine kompetencer ift dit møde med patienter med demens efter din deltagelse i uddannelsen? - Oplever du at dine kompetencer ændrede sig umiddelbart efter eller har de ændret sig over tid? - Hvis du oplever en ændring, hvad havde betydning for denne ændring? Hvis du skulle beskrive hvad der har haft betydning for en ændret tilgang (viden, holdninger, kompetencer) hvad vil du så fremhæve?
- Indholdet på uddannelsesdagen – har det haft betydning for din viden, holdning og kompetence, hvis ja, kan du beskrive dette?
- Den tværfaglige tilgang på uddannelsesdagen – har det haft en betydning for din viden, holdning og kompetence og hvis ja, på hvilken måde og hvis nej, kan du forklare dette?
- ABC demens – har du gennemført dette forud for uddannelsesdagen, hvis ja, har det haft en betydning for at du har ændret tilgang?
- PBL – har du deltaget i dette og hvis ja, har det haft en betydning for at du har ændret tilgang?
Debriefing Er der noget, der ikke er spurgt ind til, som du finder væsentligt at fortælle om? Gentage det videre arbejde med interviewet og hvordan data håndteres.
Hjælpespørgsmål:
Kan du uddybe…….?
Kan du sige lidt mere om….?
Kan du forsøge at præcisere, hvad du mener med….?
Direkte spørgsmål: eksemplificere, hvad gjorde du, hvad gør du på en anden måde og hvad har du ellers lært?
Appendix 6 Approval from the Danish Data Protection Agency (Danish) Data processor agreement (Danish)
Appendix 7 Regional Danish Committee of Health Ethics (Danish)
on 03-01-2018 11:27 Fra: Christina Sølvsten Fly [email protected] Emne: SV: forespørgsel om anmeldelsespligt Til: Annemarie Ginnerup Toubøl
Kære Annemarie Toubøl.
De Videnskabsetiske Komitéer for Region Syddanmark har modtaget nedstående forespørgsel om, hvorvidt dit projekt er anmeldelsespligtigt i henhold til Komiteloven. Din henvendelse har fået sagsnummer S-20182000-1.
Ud fra de foreliggende oplysninger har komitéen besluttet, at projektet ikke er anmeldelsespligtigt til det videnskabsetiske komitésystem, jf. § 14, stk. 1 i lov om videnskabsetisk behandling af sundhedsvidenskabelige forskningsprojekter (komiteloven).
Der er ved afgørelsen lagt vægt på, at der synes at være tale om et projekt hvor metoderne udelukkende er spørgeskemaer, interviews og observationer, og som derfor falder uden for rammerne af komitélovens definition af et anmeldelsespligtigt sundhedsvidenskabeligt forskningsprojekt.
I medfør af komitélovens § 14, stk. 2 skal spørgeskemaundersøgelser og sundhedsvidenskabelige registerforskningsprojekter kun anmeldes til det videnskabsetiske komitésystem, såfremt projektet omfatter menneskeligt biologisk materiale.
Såfremt et sundhedsvidenskabeligt forskningsprojekt skal falde inden for rammerne for anmeldelsespligtigt til komitésystemet, skal projektet, jævnfør retningslinjer fra National Videnskabsetisk Komité, både have et sundhedsvidenskabeligt formål og medføre en intervention: http://www.nvk.dk/forsker/naar-du-anmelder/hvilke-projekter-skal-jeg-anmelde.
Projektet skal i sin nuværende form i stedet evt. anmeldes til Datatilsynet. Såfremt projektet medfører videregivelse af patientjournaloplysninger skal der evt. endvidere indhentes tilladelse til projektet ved Styrelsen for Patientsikkerhed jf. sundhedslovens § 46, stk. 2: https://stps.dk/da/sundhedsprofessionelle-og-myndigheder/patientjournaloplysninger/.
Sagen er behandlet af formanden for Komité 2, dr. med., professor, overlæge, Jens Michael Hertz. Komiteens afgørelse kan, jf. komitelovens § 26, stk. 1, indbringes for National Videnskabsetisk Komite (NVK), senest 30 dage efter afgørelsen er modtaget. NVK kan, af hensyn til sikring af forsøgspersonernes rettigheder, behandle elementer af projektet, som ikke er omfattet af selve klagen.
Klagen skal indbringes elektronisk og ved brug af digital signatur og kryptering, hvis protokollen indeholder fortrolige oplysninger. Dette kan ske på adressen: [email protected] Klagen skal begrundes og være vedlagt kopi af den regionale videnskabsetiske komites afgørelse samt de dokumenter/oplysninger, som den regionale videnskabsetiske komite har truffet afgørelse på grundlag af.
Hvis afgørelsen påklages til NVK, bør der ikke foretages indholdsmæssige ændringer i projektmateriale, da projektet ellers vil blive sendt retur til komiteen til fornyet førsteinstansbehandling.
Venlig hilsen
Christina Sølvsten Fly Administrativ koordinator Kvalitet og Forskning, De Videnskabsetiske Komitéer for Region Syddanmark E-mail: [email protected]
Direkte: 76638221 Mobil: 29202252
Appendix 8 Written information and invitation, all studies (Danish)
Svendborg, februar 2018
Informationsbrev til patienter og pårørende om deltagelse i observationsstudie
Svendborg Sygehus er i gang med at kompetenceudvikle alle ansatte og har desuden iværksat en række initiativer, som er en del af at gøre sygehuset demensvenligt. Dette har til formål at forbedre den pleje og behandling patienter med demens modtager, når de er på sygehuset.
Der er derfor brug for at få mere viden om, hvad der sker, når patienter med demens møder forskellige personalegrupper på sygehuset.
I den forbindelse vil jeg spørge dig om lov til at følge dele af din indlæggelse sammen med dig. Jeg vil i et udvalgt tidsrum (få timer) observere de aktiviteter, der foregår omkring dig på sygehuset. Jeg deltager ikke i plejen, men holder mig på sidelinjen og noterer det jeg ser.
Der er ikke tale om et forsøg. Den pleje, du vil blive tilbudt vil derfor være den samme, hvad enten du vælger at deltage eller ej.
Fortrolige oplysninger om dig i relation til observationen er omfattet af tavshedspligt. De notater jeg gør mig undervejs kommer ikke til at figurere i din journal eller andre steder. Ved offentliggørelse af resultaterne af undersøgelsen er alle deltagere anonymiseret og det vil derfor ikke være muligt at genkende nogen der har været med i studiet.
Det er frivilligt om du vil deltage. Vælger du at sige ja, kan du på et hvilket som helst tidspunkt afbryde din deltagelse, uden at skulle begrunde dit valg. Jeg håber du har lyst til at deltage.
Hvis du har spørgsmål, vil der være mulighed for en afklaring, før du bestemmer dig.
Med venlig hilsen
Annemarie Toubøl & Søren Jakobsen Ph.d. studerende, Afd. G. OUH, Svendborg Ledende overlæge, Afd. G. OUH, Tlf 26812984 Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Svendborg, februar 2018
Information til personalet i forbindelse med Ph.d. projekt
Kære ansatte på Svendborg sygehus
I forbindelse med Svendborg Sygehus´ ønske om at blive demensvenligt er der sideløbende igangsat et Ph.d. studie. Formålet med dette studie er overordnet at få viden om perspektiver på demens venlighed på sygehuse med inddragelse af forskellige interessenter. Der vil i forbindelse med studiet foregå en række videnskabelige undersøgelser på sygehuset, som udføres af undertegnede. En af disse undersøgelser er et observationsstudie, hvor patientens perspektiv er i fokus og formålet er at følge patientens fodspor. Dette betyder at jeg vil følge patienter med demens, i deres behandlingsforløb i et afgrænset tidsrum under patientens ophold på sygehuset. Jeg vil være passiv observatør, hvilket betyder at jeg ikke deltager i plejen, for eksempel vil jeg ikke hente mad til patienten eller hjælpe patienten på toilettet. Af samme grund møder jeg op i mit eget tøj, med mindre min deltagelse kræver andet.
Jeg vil foretage feltnoter undervejs og vil gerne give Jer mulighed for at se mine notater, hvis I ønsker dette. Deltagelse er frivillig og det er muligt at sige fra, hvis der er situationer, hvor I ikke ønsker at jeg deltager.
Jeg er omfattet af tavshedspligt i forhold til de oplysninger jeg måtte komme i besiddelse af under observationerne. Jeg indhenter ikke personlige oplysninger om personalet og alle data bliver kodet under bearbejdning af data og bliver anonymiseret ved formidling og offentliggørelse af resultaterne. Det vil således ikke være muligt at genkende deltagere, som har været involveret under studiet.
I er meget velkomne til at kontakte mig i løbet af studiet, hvis I har spørgsmål til indhold eller deltagelse.
Venlig Hilsen
Annemarie Toubøl & Søren Jakobsen Ph.d. studerende, Afd. G. OUH, Svendborg Ledende overlæge, Afd. G. OUH, Tlf 26812984 Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Invitation og information om deltagelse i fokusgruppeinterview til personer med demens
September 2018
Kære Deltager
Dette brev er en forespørgsel, om du vil deltage i en videnskabelig undersøgelse. Undersøgelsen er en del af et Ph.d. projekt med den danske titel ”Det demens venlige sygehus. Brugerperspektiver og effekt af en uddannelsesintervention på sygehusansattes tilgang til patienter med demens. Et multi metode studie.”
Ph.d. studiet foregår i et samarbejde med Geriatrisk afdeling, OUH, Svendborg, University College Lillebælt og Syddansk Universitet og har direkte sammenhæng med Svendborg sygehus’ ambition om at blive et demens venligt sygehus.
Et af formålene i Ph.d. studiet er at komme nærmere en definition på, hvad demensvenlighed er og derfor har jeg brug for hjælp fra personer som har en demens diagnose. Hvis man skal udvikle et demens venligt sygehus er det afgørende at man inddrager personer med demens for at få et autentisk perspektiv. Formålet med fokusgruppeinterviewet er at få viden om personer med demens´ særlige viden om, ønsker til og perspektiver på demensvenlighed på sygehuse.
Hvad indebærer det at deltage: Ph.d. studerende Annemarie Toubøl vil lede interviewet, som tager ca. 1 time. Dato og tidspunkt for interviewet udmeldes senere, men det bliver i november måned. Der vil være 3-5 deltagere tilstede på samme tid og disse deltagere har demensdiagnosen tilfælles.
Interviewet vil blive lydoptaget. Lydoptagelsen vil blive transskriberet og herefter opbevaret i en sikker database, hvorfra det tilgås i forbindelse med bearbejdning. Efter studiets ophør vil transskriptionerne blive destrueret eller overført til statens arkiver. Alle data bliver kodet og anonymiseret under bearbejdning af data og i forbindelse med offentliggørelsen og formidling af resultater. Det vil således ikke være muligt at genkende deltagere der har deltaget i studiet. Jeg er omfattet af tavshedspligt i forhold til de oplysninger jeg måtte komme i besiddelse af under interviewet.
Det er frivilligt om du vil deltage. Vælger du at sige ja til deltagelse, kan du på et hvilket som helst tidspunkt afbryde din deltagelse uden at skulle begrunde dit valg.
Hvis du har brug for en afklaring inden du beslutter dig, er du meget velkommen til at kontakte mig.
Jeg glæder mig til at høre fra dig – din viden er særlig betydningsfuld.
Venlig hilsen
Annemarie Toubøl Søren Jakobsen Ledende overlæge, Afd. G. OUH, Ph.d. studerende, Afd. G. OUH, Svendborg & Tlf 26812984 Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Invitation og information om deltagelse i fokusgruppeinterview til pårørende til personer med demens
September 2018
Kære Deltager
Dette brev er en forespørgsel, om du vil deltage i en videnskabelig undersøgelse. Undersøgelsen er en del af et Ph.d. projekt med den danske titel ”Det demens venlige sygehus. Brugerperspektiver og effekt af en uddannelsesintervention på sygehusansattes tilgang til patienter med demens. Et multi metode studie.”
Ph.d. studiet foregår i et samarbejde med Geriatrisk afdeling, OUH, Svendborg, University College Lillebælt og Syddansk Universitet og har direkte sammenhæng med Svendborg sygehus’ ambition om at blive et demens venligt sygehus.
Et af formålene i Ph.d. studiet er at komme nærmere en definition på, hvad demensvenlighed er og derfor har jeg brug for hjælp fra pårørende til personer som har en demens diagnose. Formålet med fokusgruppeinterviewet er at få viden om pårørende til personer med demens´ særlige viden om, ønsker til og perspektiver på demensvenlighed på sygehuse.
Hvad indebærer det at deltage: Ph.d. studerende Annemarie Toubøl vil lede interviewet, som tager ca. 1 time. Dato og tidspunkt for interviewet udmeldes senere, men det bliver i november måned. Der vil være ca. 6 deltagere tilstede på samme tid og disse deltagere er alle pårørende til en person der har demensdiagnosen.
Interviewet vil blive lydoptaget. Lydoptagelsen vil blive transskriberet og herefter opbevaret i en sikker database, hvorfra det tilgås i forbindelse med bearbejdning. Efter studiets ophør vil transskriptionerne blive destrueret eller overført til statens arkiver. Alle data bliver kodet og anonymiseret under bearbejdning af data og i forbindelse med offentliggørelsen og formidling af resultater. Det vil således ikke være muligt at genkende deltagere der har deltaget i studiet. Jeg er omfattet af tavshedspligt i forhold til de oplysninger jeg måtte komme i besiddelse af under interviewet.
Det er frivilligt om du vil deltage. Vælger du at sige ja til deltagelse, kan du på et hvilket som helst tidspunkt afbryde din deltagelse uden at skulle begrunde dit valg.
Hvis du har brug for en afklaring inden du beslutter dig, er du meget velkommen til at kontakte mig.
Jeg glæder mig til at høre fra dig – din viden er særlig betydningsfuld.
Venlig hilsen
Annemarie Toubøl Søren Jakobsen Ledende overlæge, Afd. G. OUH, Ph.d. studerende, Afd. G. OUH, Svendborg & Tlf 26812984 Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Invitation og information om deltagelse i fokusgruppeinterview til nøglepersoner inden for demensområdet
September 2018
Kære Deltager
Dette brev er en forespørgsel, om du vil deltage i en videnskabelig undersøgelse. Undersøgelsen er en del af et Ph.d. projekt med den danske titel ”Det demens venlige sygehus. Brugerperspektiver og effekt af en uddannelsesintervention på sygehusansattes tilgang til patienter med demens. Et multi metode studie.”
Ph.d. studiet foregår i et samarbejde med Geriatrisk afdeling, OUH, Svendborg, University College Lillebælt og Syddansk Universitet og har direkte sammenhæng med Svendborg sygehus’ ambition om at blive et demens venligt sygehus.
Et af formålene i Ph.d. studiet er at komme nærmere en definition på, hvad demensvenlighed er og derfor har jeg brug for hjælp fra nøglepersoner inden for demensområdet fra Svendborg Sygehus. Formålet med fokusgruppeinterviewet er at få viden om de ønsker til og perspektiver på demensvenlighed på sygehuse, nøglepersoner med særlig viden om demens har.
Hvad indebærer det at deltage: Ph.d. studerende Annemarie Toubøl vil lede interviewet, som tager ca. 1 time. Dato og tidspunkt for interviewet udmeldes senere, men det bliver i november måned. Der vil være ca. 6 deltagere tilstede på samme tid og disse deltagere er alle nøglepersoner fra forskellige afdelinger på Svendborg Sygehus med forskellige stillingsbetegnelser.
Interviewet vil blive lydoptaget. Lydoptagelsen vil blive transskriberet og herefter opbevaret i en sikker database, hvorfra det tilgås i forbindelse med bearbejdning. Efter studiets ophør vil transskriptionerne blive destrueret eller overført til statens arkiver. Alle data bliver kodet og anonymiseret under bearbejdning af data og i forbindelse med offentliggørelsen og formidling af resultater. Det vil således ikke være muligt at genkende deltagere der har deltaget i studiet. Jeg er omfattet af tavshedspligt i forhold til de oplysninger jeg måtte komme i besiddelse af under interviewet.
Det er frivilligt om du vil deltage. Vælger du at sige ja til deltagelse, kan du på et hvilket som helst tidspunkt afbryde din deltagelse uden at skulle begrunde dit valg.
Hvis du har brug for en afklaring inden du beslutter dig, er du meget velkommen til at kontakte mig.
Jeg glæder mig til at høre fra dig – din viden er særlig betydningsfuld.
Venlig hilsen
Annemarie Toubøl Søren Jakobsen Ledende overlæge, Afd. G. OUH, Ph.d. studerende, Afd. G. OUH, Svendborg & Tlf 26812984 Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Invitation og information om deltagelse i fokusgruppeinterview for medlemmer af Alzheimerforeningen
September 2018
Kære Deltager
Dette brev er en forespørgsel, om du vil deltage i en videnskabelig undersøgelse. Undersøgelsen er en del af et Ph.d. projekt med den danske titel ”Det demens venlige sygehus. Brugerperspektiver og effekt af en uddannelsesintervention på sygehusansattes tilgang til patienter med demens. Et multi metode studie.”
Ph.d. studiet foregår i et samarbejde med Geriatrisk afdeling, OUH, Svendborg, University College Lillebælt og Syddansk Universitet og har direkte sammenhæng med Svendborg sygehus’ ambition om at blive et demens venligt sygehus.
Et af formålene i Ph.d. studiet er at komme nærmere en definition på, hvad demensvenlighed er og derfor har jeg brug for hjælp fra medlemmer fra Alzheimerforeningen. Formålet med fokusgruppeinterviewet er at få viden om medlemmer fra Alzheimerforeningen’s ønsker til og perspektiver på demensvenlighed på sygehuse.
Hvad indebærer det at deltage: Ph.d. studerende Annemarie Toubøl vil lede interviewet, som tager ca. 1 time. Dato og tidspunkt for interviewet udmeldes senere, men det bliver i november måned. Der vil være ca. 6 deltagere tilstede på samme tid og disse deltagere er alle medlemmer af Alzheimerforeningen.
Interviewet vil blive lydoptaget. Lydoptagelsen vil blive transskriberet og herefter opbevaret i en sikker database, hvorfra det tilgås i forbindelse med bearbejdning. Efter studiets ophør vil transskriptionerne blive destrueret eller overført til statens arkiver. Alle data bliver kodet og anonymiseret under bearbejdning af data og i forbindelse med offentliggørelsen og formidling af resultater. Det vil således ikke være muligt at genkende deltagere der har deltaget i studiet. Jeg er omfattet af tavshedspligt i forhold til de oplysninger jeg måtte komme i besiddelse af under interviewet.
Det er frivilligt om du vil deltage. Vælger du at sige ja til deltagelse, kan du på et hvilket som helst tidspunkt afbryde din deltagelse uden at skulle begrunde dit valg.
Hvis du har brug for en afklaring inden du beslutter dig, er du meget velkommen til at kontakte mig.
Jeg glæder mig til at høre fra dig – din viden er særlig betydningsfuld.
Venlig hilsen
Annemarie Toubøl Søren Jakobsen Ledende overlæge, Afd. G. OUH, Ph.d. studerende, Afd. G. OUH, Svendborg & Tlf 26812984 Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Invitation til og information om deltagelse i interview
Februar 2020
Kære medarbejder på Svendborg Sygehus
Dette brev er en invitation til og information om deltagelse i en videnskabelig undersøgelse. Undersøgelsen er en del af et Ph.d. projekt med den danske titel ”Det demens venlige sygehus. Brugerperspektiver og effekt af en uddannelsesintervention på sygehusansattes tilgang til patienter med demens. Et multi- methods studie.”
Ph.d. studiet foregår i et samarbejde med Geriatrisk afdeling, OUH, Svendborg, University College Lillebælt og Syddansk Universitet og har direkte sammenhæng med Svendborg sygehus´ ambitionen om at blive demens venligt sygehus.
Et af formålene i Ph.d. studiet er at få viden om effekten af den uddannelsesintervention, der har fundet sted på Svendborg Sygehus. Dette er dels afdækket via en spørgeskemaundersøgelse og ønskes yderligere afdækket ved at interviewe ca. 15 af de ansatte, som har deltaget i den 1 dags basis undervisningsdag i demens.
Formålet med interviewet er at få dine beskrivelser og oplevelser af om, hvordan og hvilke særlige forhold der har haft betydning for om uddannelsen har haft en effekt på de ansattes tilgang til patienter med demens på sygehuset.
Interviewet vil blive lydoptaget. Lydoptagelsen vil blive transskriberet og herefter opbevaret i en sikker database, hvorfra det tilgås i forbindelse med bearbejdning. Efter studiets ophør vil transskriptionerne blive destrueret eller overført til statens arkiver. Alle data bliver kodet og anonymiseret under bearbejdning af data og i forbindelse med offentliggørelsen og formidling af resultater. Det vil således ikke være muligt at genkende deltagere der har deltaget i studiet. Jeg er omfattet af tavshedspligt i forhold til de oplysninger jeg måtte komme i besiddelse af under interviewet.
Det er frivilligt om du vil deltage. Vælger du at sige ja til deltagelse, kan du på et hvilket som helst tidspunkt afbryde din deltagelse uden at skulle begrunde dit valg.
Hvis du har brug for en afklaring inden du beslutter dig eller har spørgsmål efter interviewet er afviklet, er du meget velkommen til at kontakte mig.
Venlig hilsen
Annemarie Toubøl Søren Jakobsen Ph.d. studerende, Afd. G. OUH, Svendborg Ledende overlæge, Afd. G. OUH, Tlf 26812984 & Svendborg og Sygehusenheden Ærø
Mail: [email protected]
Appendix 9 Informed consent forms, all studies (Danish)
Informeret samtykke til at deltage i et sundhedsvidenskabeligt forskningsprojekt
Dette projekt udspringer af at Svendborg Sygehus har en ambition om at blive demensvenligt og at de over de næste år uddanner alle ansatte på sygehuset i demens og iværksætter en række initiativer.
Formålet med projektet er at forbedre hospitalsansattes tilgang og pleje til patienter med demens for at undgå ulighed og for at sikre en høj kvalitet i pleje og behandling til patienter med demens.
Derfor er det nødvendigt at inddrage de relevante aktører, så flest mulige vinkler på demensvenlighed belyses. Borgere/patienter med demens er særligt væsentlige, da deres perspektiv er helt centralt i forhold til at få viden om, hvad der skal til for at gøre et sygehus demensvenligt.
Projektet er behandlet af Videnskabsetisk komité og Datatilsynet i Region Syddanmark har godkendt at projektet lever op til de gældende GDPR bestemmelser. Ledelsen på Geriatrisk afdeling i Svendborg og Syddansk Universitet har ligeledes godkendt projektet.
Jeg har fået skriftlig og mundtlig information om formålet med projektet og er blevet informeret om at:
1. Deltagelse er frivillig og at det er uden konsekvenser at sige nej 2. At jeg kan trække mig fra deltagelse på et hvilket som helst tidspunkt 3. At ingen informationer gives videre, så min identitet kan genkendes 4. At fortrolige oplysninger slettes eller overgår til statens arkiver ved projektets ophør 5. At der ingen risici er forbundet med at deltage i projektet
Jeg giver hermed samtykke til, at jeg vil deltage i ovenstående forskningsprojekt og at mine oplysninger kan anvendes af forskerteamet.
Dato og underskrift
______
Informeret samtykke til at deltage i et sundhedsvidenskabeligt forskningsprojekt
Stedfortrædende samtykkeerklæring til deltagelse i et sundhedsvidenskabeligt forskningsprojekt
Dette projekt udspringer af at Svendborg Sygehus har en ambition om at blive demensvenligt og at de over de næste år uddanner alle ansatte på sygehuset i demens og iværksætter en række initiativer.
Formålet med projektet er at forbedre hospitalsansattes tilgang og pleje til patienter med demens for at undgå ulighed og for at sikre en høj kvalitet i pleje og behandling til patienter med demens.
Derfor er det nødvendigt at inddrage de relevante aktører, så flest mulige vinkler på demensvenlighed belyses. Borgere/patienter med demens er særligt vigtige, da deres perspektiv kan bidrage til viden om, hvad der skal til for at et sygehus bliver demensvenligt.
Projektet er behandlet af Videnskabsetisk komité og Datatilsynet i Region Syddanmark har godkendt at projektet lever op til de gældende GDPR bestemmelser. Ledelsen på Geriatrisk afdeling i Svendborg og Syddansk Universitet har ligeledes godkendt projektet.
Jeg er blevet skriftligt og mundtligt informeret om projektets formål og at:
1. Deltagelse er frivillig og at det er uden konsekvenser at sige nej 2. At man kan trække mig fra deltagelse på et hvilket som helst tidspunkt 3. At ingen informationer gives videre, så min identitet kan genkendes 4. At fortrolige oplysninger slettes eller overgår til statens arkiver ved projektets ophør 5. At der ingen risici er forbundet med at deltage i projektet
Jeg giver samtykke til, at ______(deltagers navn) deltager i forskningsprojektet og jeg har fået en kopi af dette samtykkeark samt en kopi af den skriftlige information om projektet til eget brug. Oplysning om min tilknytning, som pårørende, til deltageren:
______
Dato og underskrift
______
Informeret samtykke til at deltage i et sundhedsvidenskabeligt forskningsprojekt
Dette projekt udspringer af at Svendborg Sygehus har en ambition om at blive demensvenligt og at de over de næste år uddanner alle ansatte i demens og iværksætter en række initiativer.
Formålet med projektet er at forbedre hospitalsansattes tilgang og pleje til patienter med demens for at undgå ulighed og for at sikre en høj kvalitet i pleje og behandling til patienter med demens.
Derfor er det nødvendigt at inddrage de relevante aktører, så flest mulige vinkler på demensvenlighed belyses. Pårørende til patienter med demens er særligt vigtige, da de kan have væsentlige bud på, hvad der skal til for at et sygehus bliver demensvenligt.
Projektet er behandlet af Videnskabsetisk komité og Datatilsynet i Region Syddanmark har godkendt at projektet lever op til de gældende GDPR bestemmelser. Ledelsen på Geriatrisk afdeling i Svendborg og Syddansk Universitet har ligeledes godkendt projektet.
Jeg har fået skriftlig og mundtlig information om formålet med projektet og er blevet informeret om at:
1. Deltagelse er frivillig og at det er uden konsekvenser at sige nej 2. At jeg kan trække mig fra deltagelse på et hvilket som helst tidspunkt 3. At ingen informationer gives videre, så min identitet kan genkendes 4. At fortrolige oplysninger slettes eller overgår til statens arkiver ved projektets ophør 5. At der ingen risici er forbundet med at deltage i projektet
Jeg giver hermed samtykke til, at jeg vil deltage i ovenstående forskningsprojekt og at mine oplysninger kan anvendes af forskerteamet.
Dato og underskrift
______
Informeret samtykke til at deltage i et sundhedsvidenskabeligt forskningsprojekt
Dette projekt udspringer af at Svendborg Sygehus har en ambition om at blive demensvenligt og at de over de næste år uddanner alle ansatte i demens og iværksætter en række initiativer.
Formålet med projektet er at forbedre hospitalsansattes tilgang og pleje til patienter med demens for at undgå ulighed og for at sikre en høj kvalitet i pleje og behandling til patienter med demens.
Derfor er det nødvendigt at inddrage de relevante aktører, så flest mulige vinkler på demensvenlighed belyses. Ansatte med særlig viden om demens er betydningsfulde, da de kan have væsentlige bud på, hvad der skal til for at et sygehus bliver demensvenligt.
Projektet er behandlet af Videnskabsetisk komité og Datatilsynet i Region Syddanmark har godkendt at projektet lever op til de gældende GDPR bestemmelser. Ledelsen på Geriatrisk afdeling i Svendborg og Syddansk Universitet har ligeledes godkendt projektet.
Jeg har fået skriftlig og mundtlig information om formålet med projektet og er blevet informeret om at:
1. Deltagelse er frivillig og at det er uden konsekvenser at sige nej 2. At jeg kan trække mig fra deltagelse på et hvilket som helst tidspunkt 3. At ingen informationer gives videre, så min identitet kan genkendes 4. At fortrolige oplysninger slettes eller overgår til statens arkiver ved projektets ophør 5. At der ingen risici er forbundet med at deltage i projektet
Jeg giver hermed samtykke til, at jeg vil deltage i ovenstående forskningsprojekt og at mine oplysninger kan anvendes af forskerteamet.
Dato og underskrift
______
Informeret samtykke til at deltage i et sundhedsvidenskabeligt forskningsprojekt
Dette projekt udspringer af at Svendborg Sygehus har en ambition om at blive demensvenligt og at de over de næste år uddanner alle ansatte i demens og iværksætter en række initiativer.
Formålet med projektet er at forbedre hospitalsansattes tilgang og pleje til patienter med demens for at undgå ulighed og for at sikre en høj kvalitet i pleje og behandling til patienter med demens.
Derfor er det nødvendigt at inddrage de relevante aktører, så flest mulige vinkler på demensvenlighed belyses. Repræsentanter fra Alzheimer foreningen, er særligt betydningsfulde, da de kan have væsentlige bud på, hvad der skal til for at et sygehus bliver demensvenligt set fra et borgerrettet samfundsperspektiv.
Projektet er behandlet af Videnskabsetisk komité og Datatilsynet i Region Syddanmark har godkendt at projektet lever op til de gældende GDPR bestemmelser. Ledelsen på Geriatrisk afdeling i Svendborg og Syddansk Universitet har ligeledes godkendt projektet.
Jeg har fået skriftlig og mundtlig information om formålet med projektet og er blevet informeret om at:
1. Deltagelse er frivillig og at det er uden konsekvenser at sige nej 2. At jeg kan trække mig fra deltagelse på et hvilket som helst tidspunkt 3. At ingen informationer gives videre, så min identitet kan genkendes 4. At fortrolige oplysninger slettes eller overgår til statens arkiver ved projektets ophør 5. At der ingen risici er forbundet med at deltage i projektet
Jeg giver hermed samtykke til, at jeg vil deltage i ovenstående forskningsprojekt og at mine oplysninger kan anvendes af forskerteamet.
Dato og underskrift
______
Informeret samtykke til at deltage i et sundhedsvidenskabeligt forskningsprojekt
Dette projekt udspringer af at Svendborg Sygehus har en ambition om at blive demensvenligt og at de over de næste år uddanner alle ansatte i demens og iværksætter en række initiativer.
Formålet med projektet er at forbedre hospitalsansattes tilgang og pleje til patienter med demens for at undgå ulighed og for at sikre en høj kvalitet i pleje og behandling til patienter med demens.
Derfor er det nødvendigt at inddrage de relevante aktører, så flest mulige vinkler på demensvenlighed belyses. Ansatte som har deltaget i 1 dags demensuddannelse er særligt betydningsfulde, da de kan have væsentlige bud på, på hvilken måde en uddannelsesintervention kan være med til at gøre et sygehus mere demensvenligt.
Projektet er behandlet af Videnskabsetisk komité og Datatilsynet i Region Syddanmark har godkendt at projektet lever op til de gældende GDPR bestemmelser. Ledelsen på Geriatrisk afdeling i Svendborg og Syddansk Universitet har ligeledes godkendt projektet.
Jeg har fået skriftlig og mundtlig information om formålet med projektet og er blevet informeret om at:
1. Deltagelse er frivillig og at det er uden konsekvenser at sige nej 2. At jeg kan trække mig fra deltagelse på et hvilket som helst tidspunkt 3. At ingen informationer gives videre, så min identitet kan genkendes 4. At fortrolige oplysninger slettes eller overgår til statens arkiver ved projektets ophør 5. At der ingen risici er forbundet med at deltage i projektet
Jeg giver hermed samtykke til, at jeg vil deltage i ovenstående forskningsprojekt og at mine oplysninger kan anvendes af forskerteamet.
Dato og underskrift
______
Papers
Paper 1:
Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., Nielsen, D.S. (2020). “Even Though I Have
Dementia, I Prefer That They Are Personable”: A Qualitative Focused Ethnography Study in a
Danish General Hospital Setting. Global qualitative Nursing Research, SAGE, https://doi.org/10.1177/2333393619899388
Paper 2:
Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., Nielsen, D.S. (2020). Stakeholder perspectives of the dementia-friendly hospital: A qualitative descriptive focus-group study. Dementia, SAGE, https://doi.org/10.1177/1471301220947848
Paper 3:
Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., Hansen, D. L., Foldager, M., Jakobsen, S., Nielsen,
D.S. (20XX). The impact of an education intervention on the approach of hospital staff to patients with dementia in a Danish general hospital setting. An explanatory sequential mixed methods study.
Nordic Journal of Nursing Research, SAGE, in review, submitted 07.01.2021
Paper 1
GQNXXX10.1177/2333393619899388Global Qualitative Nursing ResearchToubøl et al. research-article8993882020
Single-Method Research Article
Global Qualitative Nursing Research Volume 7: 1–11 “Even Though I Have Dementia, I Prefer © The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions That They Are Personable”: A Qualitative DOI:https://doi.org/10.1177/2333393619899388 10.1177/2333393619899388 Focused Ethnography Study in a journals.sagepub.com/home/gqn Danish General Hospital Setting
Annemarie Toubøl1,2,3 , Lene Moestrup1, Jesper Ryg2,3, Katja Thomsen3, and Dorthe Susanne Nielsen1,2,3
Abstract Patients with dementia often face challenges in hospital settings due to cognitive impairment. The aim of this study is to explore the encounter between patients with dementia and hospital staff, from the patient perspective. Focused ethnography guided the method for data collection and the analytical approach was abductive. The findings, based on 10 observations of patients with dementia and their encounter with hospital staff in a variety of hospital settings, reveal that staff often seem to not see the person beyond the dementia diagnosis. The findings also show, however, that significant moments are constantly negotiated during encounters between patients with dementia and hospital staff, moments which occasionally allow staff to see the patients to be seen as the person they are. A rethinking of the current dementia discourse is discussed, recommending attention to the two-way interaction between patients with dementia and hospital staff, and within this an awareness of a personable approach.
Keywords dementia, dementia friendly hospital, patient’s perspective, qualitative, focused ethnography, abductive analysis
Received August 26, 2019; revised December 5, 2019; accepted December 16, 2019
Introduction et al., 2017; Hung et al., 2017). Another study concluded that health care staff often miss opportunities to deliver Hospital admissions for people with dementia are predicted person-centered care to enhance the identity, comfort, and to rise in the future (Lin et al., 2013), due to the increasing occupation of patients with dementia and suggests that the number of people affected by dementia (Patterson, 2018) encounter between patients with dementia and health care and the associated comorbidity (Bunn et al., 2014). Patients professionals needs attention to sustain personhood (Clissett with dementia benefit less from hospitalization compared et al., 2013). These missed opportunities, together with the with patients without cognitive impairment (Dewing & focus on medical procedures and routines can lead to the Dijk, 2016; Organisation for Economic Co-operation and patient feeling like a bystander in the hospital setting (Digby Development, 2015) and their care tends to be suboptimal in et al., 2017) and to feeling ignored, distressed, or uncertain somatic hospital settings (Innes et al., 2016). Language (Cowdell, 2010). This is further acknowledged in a study of impairment among people with dementia can cause com- patients with Alzheimer’s disease that found patients wished munication challenges with hospital staff, often resulting in that the health care staff knew them better and thereby poor interpersonal relations and misunderstandings, which understood and involved them more appropriately (Jensen can have crucial impacts on the patient’s behavior (Allwood et al., 2018). Not being recognized as a person and not being et al., 2017). An observation study with a specific focus on the interaction between patients with dementia and nursing 1University College Lillebaelt, Vejle, Denmark staff found that this patient group was often considered to be 2University of Southern Denmark, Odense, Denmark in either a “positive” or “negative” category, based on their 3Odense University Hospital, Odense, Denmark behavior (Norman, 2006). In line with this, studies also Corresponding Author: show that hospital care of patients with dementia is often Annemarie Toubøl, Health Sciences Research Center, University College delivered with an embedded habitus, focusing on ward rou- Lillebaelt, 7100 Vejle, Denmark. tines, medical procedures, and risk management (Digby Email: [email protected]
Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution- NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 Global Qualitative Nursing Research offered the same services as patients without cognitive Theoretical Framework impairment can be a result of this noninvolvement (Moyle et al., 2011). To accentuate the encounters between participants and hos- To our knowledge, there is sparse literature on how pital staff, the theoretical framework drew on the work of patients with dementia experience the encounter with hospi- Mattingly (1994, 1998) and her descriptions of therapeutic tal staff in general and how their personhood is recognized in “emplotment” and healing dramas. Mattingly defines thera- these encounters. To date, research has primarily focused on peutic emplotment as the creation of stories and story-like the relationship and interactions with health care staff only in structures during and through social situations, where staff specific hospital settings. Because these patients interact and patients interact and negotiate a “plot” through a collec- with a variety of different staff during hospital stays, we need tive subjectivity of information exchange (Tropea, 2012). to broaden our knowledge to include the encounters with a Mattingly (1994) proposes that stories are better considered variety of groups (Featherstone et al., 2019). Furthermore, as tools rather than just something told, as an information people with dementia historically have been omitted from exchange, because of the connection between how a “plot” is research, which reveals an ignorance of their perspectives developed and maintained and how subjectivity unfolds over and views. The focus has generally been on the biomedical time. According to Mattingly, an important point is that ther- and neuropathological aspects of dementia, with only a nar- apeutic emplotment cannot be planned but is rather struc- row insight into life with dementia (Lepore et al., 2017). tured by unforeseen responses, often quiet and invisible at Sometimes the patients’ perspectives have been presented first sight (Tropea, 2012). from relatives’ or care staff’s points of view, which risks pro- To further enhance the theoretical framework, we included ducing misleading conclusions by ignoring the direct views Paul Ricouer’s philosophical approach to the word “recogni- and needs of the person with dementia (Prato et al., 2018). tion” to reach a deeper understanding of the encounter under Thus, it is imperative to include their perspectives (Digby & investigation. Ricoeur identifies three semantic stages in Bloomer, 2014) in shaping future services that are better which recognition moves from an intellectual form to an adapted to the needs of this patient group. Inclusion of their ethical understanding: (a) recognition as identification, (b) perspectives can potentially enhance their autonomy and recognizing oneself, and (c) mutual recognition. He empha- provide important insights into their views and needs (Rivett, sizes that the second stage, recognizing oneself, bridges the 2017; Scerri et al., 2018). gap between being seen as a thing (recognition as identifica- tion) or being seen as a person (mutual recognition) (Ricoeur, 2005). By recontextualizing this philosophical angle, our Aim framework aims to give voice to how different understand- The aim is to explore, from the patient’s perspective, the char- ings of recognition could thus play pivotal roles in the social acteristics of the encounter between patients with dementia situations observed in this study. and hospital staff in a variety of general hospital settings. Setting and Recruitment Method The hospital where the study took place is a part of a univer- This study was conducted with a qualitative design using sity hospital in Denmark and with approximately 1,600 focused ethnography (Higginbottom et al., 2013). Method- employees. A range of specialties are represented, with ologically, the study is informed by the assumptions of a diversity in professions and job functionalities. Through pragmatic approach regarding science from an empirical per- gatekeepers at inpatient wards and outpatient clinics, patient spective. Human action should thus be understood in the participants were identified and purposefully sampled over light of meaning seeking and interaction, with a central focus a period of 7 months (May 2018–November 2018). The on the relationship between method, theory, and observation gatekeepers were nurses or health care assistants who had (Brinkmann et al., 2014; Timmermans & Tavory, 2014). responsibility for the participants. Annemarie Toubøl, who Knowledge is in terms of pragmatism activated through the conducted the observations, regularly visited the wards and use of “practical reasoning” (Brinkmann et al., 2014). In line clinics and together with the gatekeepers, decided whether with this, the abductive reasoning that informs our analysis the identified potential participants fulfilled the inclusion emphasizes that discovery and justification of findings are criterion. connected in the construction of meaning (Timmermans & Tavory, 2012, 2014) The research question guiding the research process was as follows: Participants Participants were included if they had a diagnosis of demen- Research Question 1: How can we understand and con- tia of any type from early to late stage. No distinctions were ceptualize the encounter between patients with dementia made as to gender, age, or residency. Exclusion criteria were and hospital staff in a general hospital setting? critical illness or life-threatening situations. Ten patients Toubøl et al. 3
Figure 1. The analytical process. with dementia participated in the study, representing acutely encounter and the interactions are in the foreground as situa- admitted inpatient and scheduled outpatient statuses. The tions, and should not be reduced to the participants’ individ- participants included were five men and five women aged 77 ual actions (Atkinson, 2015). To ensure that we emphasized to 96 years. Three of the participants lived in care homes and the situation, we further turned to Spradley (1980), who enu- the rest in their own homes, either alone or with a spouse. merated nine dimensions of social situations: space, actor, Demographics and health data were accessed through patients activity, object, act, event, time, goal, and feeling. These or relatives. dimensions served as a guide to comprehensively understand the observed situations (Spradley, 1980), and informed the Data Collection use of the observation tool and the informal conversations. This ensured that the situational characteristics were cap- A focused ethnographic approach was taken and the study tured systematically in all situations. structured to follow one patient at a time during the course of During observations and informal conversations, the a hospital admission or outpatient visit. Focused ethnogra- observer wrote field notes. These were transcribed verbatim phy allows for background knowledge on the part of the into anonymized coherent scripts by the first author, with observer (Higginbottom et al., 2013), which was true here expanded and rich descriptions of details as soon as was given that the observer is a trained nurse, though not a part of practicable after observation, with an awareness of the ten- the clinical team at the study site. Short duration field visits dency to interpret and simplify (Hammersley & Atkinson, are recommended in focused ethnography, which served the 2007). Transcripts were stored and accessed in a secured participants well due to their cognitive impairments, and database. aligned with the “fragmented” nature of work in a hospital setting (Kawulich, 2005; Knoblauch, 2005). In this study, Analysis observing multiple encounters with a variety of hospital staff in different settings was essential, as it provided an excep- The empirical material was analyzed by hand using the prin- tional opportunity for insight into the perspectives of patients ciples of abductive analysis (Timmermans & Tavory, 2014). with dementia. The analysis consisted of three phases with an iterative The patients were followed from 1 hour to 5 hours and 30 movement between phases (Figure 1). First, the field note minutes. The observer was a passive participant in the situa- transcripts were scrutinized and initial coding and memo tions and only participated actively if the safety of the patients writing was performed, as was the search for patterns. A key was threatened or if the patients’ needs had to be met immedi- concept practiced in this initial phase was defamiliarization, ately and no hospital staff were available. Furthermore, infor- asking: “What is this a case of?” rather that assuming. This mal conversations were conducted with participants during approach thus allowed for the discovery of surprising events observations when their physical and cognitive condition and for testable hypotheses to be developed. Second, theo- allowed. retical insights from Mattingly’s (1998) theory were used As the focus of the present study is the encounter as sensitizing concepts, in line with abductive reasoning between patients with dementia and hospital staff, we fol- (Atkinson, 2015; Timmermans & Tavory, 2012, 2014). A lowed Atkinson (2015), who argues that in ethnography, the connection was found between the theory of “healing dramas 4 Global Qualitative Nursing Research and clinical plots” (Mattingly, 1998) and the empirical insights from the coded memos from Phase 1. This guided the further exploration of the empirical material, rereading the ordered data while maintaining a tension between dis- covery and justification and utilizing the theoretical concepts (Mattingly, 1998) in detail. In this phase, the hypotheses were tested and “significant moments at stake” was discov- ered as an overall concept, and within this, the possible results of the social situations. Third, the transcripts were reread to ensure that variation occurred in and across the Figure 2. The conceptualization of the encounter between transcripts and that this variation adhered to the theoretical patients with dementia and hospital staff. inferences. This was a way of empirically testing the second phase results. In this third phase, the transcripts were also revisited with an additional theoretical concept, namely the First, as an overall concept and an answer to the research concept of recognition (Ricoeur, 2005). This was done to question that guided the analysis, the negotiation level illus- refine the analysis and to create a comprehensive under- trates that significant moments are at stake in the encounter. standing of how patients with dementia experience the Significant moments are characterized by mutual subjectiv- encounter with a variety of hospital staff in different hospital ity in the social situations and the attempted co-creation of a settings. In this third phase, in the empirical puzzle of creat- common goal. “At stake” illustrates how these significant ing new theoretical insights, the “ambiguous kindness” moments are negotiated on an ongoing basis, resulting in a emerged from the empirical data and was adopted as a sig- constant movement between success and failure. This is nificant, omnipresent component. The analysis was under- reflected in the concepts of: being recognized as the person taken by Annemarie Toubøl, followed by continuous you are and being in suspense as a bystander in one’s own discussions and contributions by Lene Moestrup, Katja life. These possible outcomes of the continued negotiation Thomsen, Jesper Ryg, and Dorthe Susanne Nielsen. were dependent on how hospital staff recognized the patient. This is illustrated as the level of recognition. Finally, we out- line the omnipresent premise of the ambiguous kindness Ethical Considerations expressed by hospital staff, which patients with dementia The study was conducted in line with the Helsinki Declaration had to navigate. This last concept provides an enhanced (World Medical Association, 2013) and approved by the local understanding of the navigation level of the encounters hospital management and the Danish Data Protection Agency between patients with dementia and hospital staff. In the fol- (18/14259). In accordance with Danish legislation, regional lowing, illustrative excerpts and quotes are identified by par- health research ethics committees were informed, and ruled ticipant number and data collection method if the quote is that the study required no ethical approval (S-20182000-1). from an informal conversation. The participating patients were informed about the study ver- bally by Annemarie Toubøl and, if they were able to read, Significant Moments Are at Stake they were also informed in writing. Written consent was given by some participants. If participants were unable to The results of the analysis indicate that significant moments give informed consent either verbally or in writing, close are under constant negotiation, beginning with invitations relatives were contacted and informed, and those relatives or opening gestures made by both parties, and from there verbally provided a proxy consent. Given that cognitive unfolding in the social situations context of patients with impairment can be a factor in dementia, informed consent dementia encountering hospital staff. was sought on an ongoing basis (Higgins, 2013; West et al., In the following excerpt, a patient is invited into a situa- 2017) with constant repetition of the reason for the observers’ tion by a nurse who intends to help the patient shower. It attendance, if questioned. The hospital staff at observations illustrates how the patient and staff participant each adopted were informed verbally and in writing and gave verbal con- a different approach to the negotiation, but also that the sent. All participants were informed that they could withdraw responses were negative, keeping the significant moment at at any time. stake. The nurse (N) comes in the door and says to the patient (P): “We Findings think that you should have a bath.” The patient says that he does not like it, to which N answers: but we can see that it has been In the iterative, abductive analysis, three levels were identi- some time, and it is a good start to the day. The patient asks if fied to conceptualize the encounter between patients with they are monitoring that. No answer to that question. N leaves dementia and hospital staff: the level of negotiation, the level again, while saying: “In a little while the bathing patrol will of recognition, and the level of navigation, see Figure 2. come” (laughs to the patient). P sits in his armchair and says in Toubøl et al. 5
the air: “I don’t know what it is.” He tucks a blanket well around negotiation of the clinical task through a mutual recognition. his legs. N comes again and has a student with him, who takes of In line with Mattingly (1998), it is clear that the physio- the blanket. P says: “Uhh, now it’s cold.” N: “You will be glad therapist has reflected on what story he is a part of. after you’ve had it.” P: “I don’t think so—I’m not used to it—I bathe at home with soap and water.” N: “SO! (loud tone, N and the student help P to stand up), and now we go to the bathroom Being Recognized as the Person You Are together.” P sighs loudly—“I don’t know what this is,” looking around questioningly. There is no response from the staff. When significant moments appeared, the patients’ stories (Patient 9) were often used as tools in the negotiation either verbally or as objects, in terms of revealing the person beyond the clini- This negotiation includes invitations or questions from cal diagnosis. In these situations, the negotiation was char- both the patient and the nurse followed by repeated rejec- acterized by a shared path, in which the patient’s presented tions. The shift in atmosphere is evident by the increase in self was included in the clinical task or contact. These vocal by the nurse after the humoristic approach seems to moments were breaches in the ordinary course of provision fail: The patient shows an attitude of resignation as his con- of care and even if they were temporary, the patients appre- tribution with reference to his habits is ignored. ciated them, judging by their behavior, characterized by, for In most situations, shifts in atmosphere similar to the first example, laughing, calmness, or obliging facial expressions. example resulted from breaches in the linear course of treat- One patient expressed the approach he preferred to see ment and care. Such moments could represent opportunities adopted by the hospital staff: “Even though I have dementia, for development of a shared plot, depending on if or how the I think it’s best that they are personable” (informal conver- changed atmosphere was approached. The results of such sation, Patient 3). negotiations were almost always immediately reflected in At an outpatient clinic, one participant with Alzheimer’s the patient’s words and nonverbal signs, either talking or disease awaited a colposcopy in a private room. The situation being quiet, smiling or ceasing to smile, active and attentive refers to a significant moment in the course of care and treat- attitude, or passive withdrawal with a distant gaze. The latter ment where the patient’s story is addressed in the clinical was the most common, as significant moments often seemed situation, resulting in a human equality that influences both to fail despite the pervasive exchange of invitations and how the experience is manifested and how the underlying questions in these situations. Significant moments that did implication can be understood. unfold were easy to identify as the feelings expressed spoke for themselves, as in the following excerpt with the same The patient (P) is alone in a bed-unit, keeping a close eye on patient from above: what is going on in the hallway whenever there is a rattling of equipment or something passes by. Alternately, he sits in a The patient (P) is lying in his bed after a morning visit to the reclining chair or walks restlessly around with a searching look. toilet. A physiotherapist (Physio) comes in and sits on the side of A nurse (N) comes in with instruments to insert an intravenous the bed and tells the patient that he would like to help him to go cannula. N asks him to sit down in the chair, “So they can get it out for a bit. The patient says nothing, looks at the Physio over with.” He sits right on the edge of the chair with a questioningly and says: “You are are proper chap.” This is questioning look. The things are taken out and N starts talking laughed at by both. Physio asks about the patients housing and about every day topics. P looks at the bridge, which can be seen the patient difficulty answering this precisely. He says, for from the window and they talk about traffic and bridge building. example: “It is difficult to answer exactly—it depends on . . .” P tells with a little difficulty that he used to help building bridges He cannot find the words. Physio says: “It is because I want to and N asks about it. P cannot find the words in his answer and N know how you live so you can manage when you get back helps the patient by asking if he was mostly on land, as P says he home.” P says: “When I get up I am small in relation to you— was not on the bridge during its construction. P lights up, smiles, no, I am not going anywhere” (pulls the duvet up over himself). laughs a bit and wants to talk about it. He slowly slides all the Physio: “Will you go with a chap such as me—the big one and way back into the chair and sits relaxed with his legs crossed the small one?” (smiles and reaches his hand out to the patient). while the intravenous cannula is inserted. He remains seated P: “Yes, you have humour (laughs and helps to stand up)—will when N has gone and seems to enjoy the view (smiling and I get to go home?” Physio: “Yes, we will have a fun walk and looking attentively while nodding his head). (Patient 1) work so that you can go home” (After this the patient agrees and they go out together into the hallway, the patient smiling and As typical in these social situations, two sets of foci were talking). (Patient 9) present: the medical focus represented by the hospital staff and the everyday life story focus represented by the patient. As in many other situations observed, this shows that the There is a tendency for the medical focus to dominate; how- patients often express resistance to some extent and that the ever, this dominant focus is capable of involving the patient’s situations contain an exchange of invitations. As this signifi- perspective, as seen here. The excerpt above illustrate a situ- cant moment emerges, despite initial resistance, the phys- ation interrupted by significant short moments in which the iotherapist grasps the patient’s story and lets it direct the patient’s contribution is meet as an acknowledged input in 6 Global Qualitative Nursing Research the social situation. As an evident symbol of how the atmo- picture of the situation and a sense of being ignored as a sphere changes, the patients become relaxed and open- person. minded, a mood that facilitates sharing stories as tools in the In many situations, the patients asked the hospital staff mutual partnership. The patient is recognized in an ethical what they were going to do or expressed that they did not way: attention is given to the story that is an important part know what was going on or what was going to happen to of him as human being, a moment of recognition that shows them. These requests were typically answered by the hospital it does not matter whether he remembers exact details about staff in general terms with reference to the clinical proce- the bridge. dures or the patients’ course of admission, without assuring In this study, as in most hospital settings, the majority of that the patients understood these responses, leaving the task focus on the body, but through the course of care and patients as bystanders. treatment some situations provided insight into the patients’ The following excerpt shows how one patient tried to get perspectives and stories through objects that were of great an overview of the situation while a nurse helped her return importance to the patient. These significant objects could to her bedside. The patient expressed a wish for rest time in play a pivotal role in the patient’s effort to tell their stories bed which was ignored by the nurse, who instead responded and thereby to be recognized as the person they are. On an with reference to the patients’ clinical status: orthopedic ward, a patient admitted with a hip fracture needed help completing everyday tasks such as bathing and Patient (P) looks at nurse (N), sighs loudly and says: “Well, but mobilization: I’m tired. I usually like to rest a little—what should I do in the chair?” No response—N helps P into the chair and leaves with The patient (P) has asked for her brush all morning during all the the comment: “You are doing well—you are only on day two” various actions that have taken place and has repeatedly tried to (touches the patient on the shoulder). P: (while staff are on their fix her hair by running her hand through it and smoothing it out. way out) “I’m tired, I don’t know what to do.” The patient then She now sits in the chair by the bed and tries to open the bedside sits in the chair and repeats folding a napkin countless times as table, but with no luck. I (the observer) open it for her, so she can she looks blankly in front of her and then falls asleep. (Patient 6) look in. I take out her brush and ask if it’s the one she’s looking for. “Yes,” she says and sighs. She arranges her hair and puts A similar situation occurred when a patient repeatedly clips in and smiles contentedly and dabs her mouth with a napkin asked for information about discharge: (as one does after applying lipstick). She drinks from the coffee that has sat there sine breakfast at 8:10 am (the time is now The patient (P) asks when he can go home again (he has just 10:50 am). When the nurse assistant (NA) comes in to attend to arrived on the ward). That question is not answered, but the another patient, she notices her hair ad says: “Don’t you look patient is told to change, which is said with an indulgent smile good with your hair done (smiling), you have a good place there and pat on the shoulder. The patient asks again after a short by the window. It is good you have been mobilized.” P says: time and the nurse (N) answers: “First you have to have your “Yes, it is a nice coffee (smiles, folds her hands in the lap)—I’m treatment.” After the treatment the patient asks again and the waiting for lunch (she did not eat the breakfast and has told the answer is: “Now you have to eat a little first. The patient staff on being asked earlier in the morning that she has no walks around the room uneasily, not eating much of his food.” appetite).” This is the first time she has smiled at the staff during (Patient 1) the entire morning procedure. (Patient 5) These two excerpts illustrates that the negotiation of a This very short moment of significance illustrates that an significant moment is difficult to accomplish when the important object like a hairbrush can be a fundamental fac- patient’s attempts to understand the situation are disregarded tor enabling a connection to the patient’s story. The acknowl- in favor of what the hospital staff consider to be essential. edgment from the nurse assistant results in the feeling of The characteristics of these situations show that neither the being recognized as a person. This situation illustrates patient nor the hospital staff succeed with their invitations to Mattingly’s (1998) point that a shared direction relies on negotiate with the other party. This seems to result in a becoming a person with attention to how the patient prefers neglect-based negotiation where the patients are kept in sus- to be seen rather than being a person belonging to a category pense, not given the information they need that would help of hip fracture patients. them understand the situation, while the hospital staff repeatedly refer to the clinical context. The feeling of being Being in Suspense as a Bystander in One’s Own in suspense is observable in the restless behavior and pas- Life sive occupation. The sense of not being seen as a person, and of being In social situations, observations revealed that the negotia- kept in suspense, appeared in several situations in the tion of significant moments often resulted in experiences of empirical material and the analysis revealed great variance being “in suspense.” The analysis showed that this was two- in this. The patients often tried to invite the hospital staff fold, both a sense of unsuccessfully searching for an overall into their story as they referred to objects, interests, habits, Toubøl et al. 7 significant events, or signs that were present or associated Discussion with the situation and that could help them express them- selves. Nevertheless, these invitations were often not seen The overall concept in our findings around the significant or accepted, or were outright rejected by the hospital staff moments at stake calls urgently for an improved focus on the through ignoring the patient’s words. The observed experi- encounter between patients with dementia and hospital staff, ence of being in suspense tended to depend on whether the and within this to create opportunities to focus on signifi- patients were recognized as able to communicate about the cant moments in hospital settings. In line with a heightened clinical tasks in question, and thereby able to contribute on awareness of the encounter, Smebye and Kirkevold (2013) equal terms with the hospital staff. This recognition mode state that the discussion of person-centered care and how it is seemed to be a determining factor in the negotiation of sig- delivered in care practice should focus more on the relation- nificant moments that did not succeed, as the points of ref- ship as a fundamental factor. They argue that person-centered erences of crucial importance to the patients were ignored. care as a direction for care can confuse the understanding of The analysis cannot reveal whether the patient reactions whether the person with dementia or the care staff is the were a result of the unfamiliar surroundings. The analysis expert in the situation. This can result in an overlooked does, however, show that patients displayed restlessness, agi- opportunity to negotiate in a complementary, mutual way tation, and passive resignation often turning away from the that could hold the patient’s fragmented self together situation. They did so when they felt in suspense as a result of (Smebye & Kirkevold, 2013). Our findings illustrate that the hospital staffs’ focus on clinical goals. person-centered care is challenged in hospital settings, as patients with dementia are often met by a staff-dominant approach that involves either expectations of cooperation, Ambiguous Kindness with no attention to the dementia diagnosis, or the assump- The omnipresent kindness of hospital staff appeared in all tion of an inability to cooperate precisely because of the situations where patients with dementia were in a constant dementia diagnosis. As exemplified by ambiguous kind- negotiation of significant moments with hospital staff. This ness, we observed that hospital staff often responded to was also clear in the informal conversations with patients: bodily language with silence, while smiling, resulting in They experienced kindness and appreciated it: despite this ignoring the sense of self expressed by the patient. This led appreciation. However, both observed situations and infor- to a suspension of the experience of being recognized as the mal conversations revealed the ambiguous nature of such person you are and thereby someone with their own coherent kindness as an ambiguous kindness. Although there were story that continues as a coherent element despite the cogni- smiles, gentle touches, talking, responding, and informing, tive impairment. there was also evasiveness observed through silently per- Our findings, however, indicate that negotiation with formed clinical tasks, nonresponsive attitudes, or responses patients with dementia in a variety of situations can result in given in general terms, such as “it can be hard to understand” the patients experiencing being recognized as the persons or “I know it is difficult for you to be in the hospital.” The they are. In line with Kitwood’s (1997) description of the kindness thus seemed to be an accessible gesture, but it was person-centered approach, an accessible way of reaching the followed by ignored questions, the patient could feel excluded, person is by simply listening to their story in everyday situa- as a bystander in their own situation. The patients expressed tions: positive person-centeredness is the concept of being that kindness was both appreciated and exclusionary: “Yes, recognized as the person you are, indicating exactly what patients with dementia would benefit from. The positive situ- they are nice here, but they don’t know me” (informal con- ations illustrated in our findings were often unforeseen, but versation, Patient 6). Another patient expressed, “They do unfolded when patients and hospital staff constructed a com- their best, but I don’t know what to do” (informal conversa- mon story while embracing their own goals and intentions. tion, Patient 2). The ambiguous kindness did at times reveal When a patient’s personal story was mutually recognized, our an inclusive path, with the patient’s story attended to with results showed that it eased the patient’s ability to negotiate— additional consideration for their dementia as a potential because it validated his or her own self. The maintenance of a complication for the negotiation of significant moments. sense of self is also acknowledged in other research on how This inclusive approach provided easy access to negotiation the “self” or selfhood is constructed in cooperation with oth- for the patients and, as expressed by one patient, this was the ers and that the social context influences how the self is ideal approach, as it contained both kindness, space for per- expressed and perceived (Hedman et al., 2016). In addition, sonality, and acceptance of the cognitive impairment: the past can also be crucial to bring to the forefront to revi- It is important that you are met with kindness and I prefer that talize a sense of self in people with Alzheimer’s disease we are in familiar terms, but also that they know what’s wrong (Hedman et al., 2016). At the same time, the possibility of with me, i.e. dementia and take this into account—I’m not so being recognized as the person you are is illustrated as an quick anymore (points to his head). (Informal conversation, effort that requires awareness from hospital staff. This is sup- Patient 3) ported by another Danish study, discussing the complexity of 8 Global Qualitative Nursing Research including the person with dementia and his or her own story 2019). Therefore, the overall concept of significant moments when providing care, however, it is a goal within reach to at stake concur with the idea that it is time discuss the dis- improve care in an acute care setting (Jensen et al., 2018). In course around dementia. The current dichotomized discourse addition, Clissett et al. (2013) concludes in a study of an in the complex experience of dementia is evident in our find- acute hospital setting, that there is a tendency in hospitals to ings as well. Patients are regarded as participating only inso- de-emphasize person-centered care, resulting in missed far as they follow instructions without resistance: Otherwise, opportunities to support and sustain personhood in patients they are regarded as only having the dementia diagnosis, with dementia. These authors suggest a future focus on the unable to cooperate. This challenged the patients with encounter between these patients and hospital staff because dementia during hospitalization, as they were trapped in of the potential to enhance a sense of selfhood in patients “the discourse of tragedy or living well” as described by with dementia (Clissett et al., 2013). McParland et al. (2017). These authors also advocate for a Being a bystander in one’s own life, as identified in this new discourse that accepts the incongruity of the complex study, illustrates a concept subsidiary to the significant condition of dementia arguing that this new discourse should moments at stake and how the conflict between patient self- include both taking into account the difficulties inherent to hood and hospital staffs’ clinical agenda complicated the cognitive impairment in care and treatment and at the same possible significant moments. In addition, the process of time respecting the human being beyond the dementia diag- negotiation was challenged by the patients’ ability to make nosis (McParland et al., 2017). This is further acknowledged sense of the situations and thereby respond and express as a turn toward a positive dementia discourse by de Vugt themselves in a timely and clear manner to match the lan- and Dröes (2017), who argue that the discourse of dementia guage and tone of the clinical hospital setting. The omnipres- must focus on living well with dementia including respect ent ambiguous kindness often came together with the hospital for the losses and difficulties that challenge these people, staff overlooking contributions made by the patients with thereby avoiding depersonalization and threats to dignity. dementia to the social situations, contributions which they offered as a way showing personhood. This ambiguous Methodological Considerations nature of such kindness is exemplified through the hospital staffs’ friendly responses as a covered ignoring of patient By illustrating an observed patient perspective that has not inquiries or communication. This aligns with the findings previously been described in such detail, our results depict a from Norman’s (2006) observation study, in which she points neglected potential in dementia care and treatment in general out that nursing staff rarely encourage patients with dementia hospital settings. Our findings contribute to the existing when it comes to helping them express themselves. She knowledge on patients with dementia in hospital settings found that nursing staff often perceive the patient’s attempt with new insights and an enhanced understanding of the to portray themselves as problematic behavior, akin to wan- encounter between these patients and hospital staff. dering and resistance (Norman, 2006). The level of recogni- The process of recruitment of participants in this study tion as a determining factor in the negotiation of significant presented dilemmas. Some gatekeepers acted overprotec- moments in our findings could, at times, be viewed as a pre- tively and denied some individuals with dementia the oppor- determined understanding that patients with dementia are not tunity to choose whether to decide to participate. Furthermore, expected to be able to negotiate and are thereby neglected as recruitment was influenced by how gatekeepers perceived negotiators. This concurs with similar findings from a qualita- the research and their personal views about the research proj- tive observation and interview study of patients with demen- ect. This is a condition that the researcher must accept given tia and nursing staff in acute hospital settings that showed that the necessity of gatekeepers in the recruitment process the hospital system does not leave much room for person- (Hellström et al., 2007) and illustrates that assisted selection centered care. Even though nurses strive to deliver person- of participants can contain elements of bias. centered care, there is a tendency to treat the patients with Our study involved only 10 participants; however, the dementia as staff have always treated patients with dementia: collected data were sufficient to gain insights into the charac- without concern for personhood (Cowdell, 2010). teristics of the encounter between patients with dementia and Bringing personhood to the forefront, as our findings a variety of hospital staff, because the rich and variant data illustrate, is complex and can be viewed as a challenge in from diverse situations allowed for the creation of a concep- hospital care and treatment of patients with dementia. Several tualization of these encounters (Mason, 2018). However, the barriers exist, such as difficulties in the maintenance of social results of this study may have been different with younger identity and the apparently prioritized medical focus. This participants. Furthermore, the results might have revealed can result in the perpetuation of patients with dementia in a different insights if the sampling strategy and the aim of the “malignant” position, which Kitwood (1997) opposed 20 study focused on a specific stage of illness. years ago. Previous research has found that malignant posi- Observation was a valid method to learn from the per- tioning is a result of viewing people with dementia as unable spective of persons with dementia, although there can be to remember, cooperate, or understand (Featherstone et al., some uncertainties as to the true perspective of the person Toubøl et al. 9 and thereby the results can include biased information (Hung Geriatric Medicines at Odense University Hospital, Svendborg for et al., 2018; van Baalen et al., 2011). To mitigate this uncer- support throughout the study. tainty, the first author carefully distinguished the terms used by the participants and the observer’s own terms in the field Declaration of Conflicting Interests notes with reference to finding out what the observed indi- The authors declared no potential conflicts of interest with respect viduals knows (Hammersley & Atkinson, 2007; Kawulich, to the research, authorship, and/or publication of this article. 2005). However, systematic observation can be the most promising method to describe patient experiences of hospi- Funding talization, as patients with dementia often express their expe- The authors disclosed receipt of the following financial support for riences not only verbally but also emotionally, as reflected in the research, authorship, and/or publication of this article: A grant body language. In addition, observations give voice to these from the Danish Nursing Research Society fund (Sygeplejerskernes vulnerable patients despite the memory loss and limited Forskningfond) supported language check. vocabulary common in dementia (Goldberg & Harwood, 2013). Furthermore, observation makes it possible to achieve ORCID iDs an overview of a network of social situations (Spradley, Annemarie Toubøl https://orcid.org/0000-0003-4794-8862 1980) that would otherwise be fragmented into activities Dorthe Susanne Nielsen https://orcid.org/0000-0002-3954-7551 with few participants, limited in time and scope (Kawulich, 2005; Knoblauch, 2005). Nevertheless, there is no consensus References on how or whether to involve people with dementia in Allwood, R., Pilnick, A., O’Brien, R., Goldberg, S., Harwood, R. H., research, which points to a need for future focus on such & Beeke, S. (2017). Should I stay or should I go? How health- guidelines (West et al., 2017). 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the perspective of people with dementia: An overview and Department of Clinical Research, University of Southern of the literature. Dementia, 10(1), 112–137. https://doi. Denmark. org/10.1177/1471301210369320 West, E., Stuckelberger, A., Pautex, S., Staaks, J., & Gysels, Lene Moestrup, Ph.D., MScH, RN. Employed at University M. (2017). Operationalising ethical challenges in dementia College Lillebaelt as a senior lecturer and researcher at the research—A systematic review of current evidence. Age & Department of Health Sciences Research Center. LM’s current Ageing, 46(4), 678–687. https://doi.org/10.1093/ageing/afw250 research has a focus on dementia. World Medical Association. (2013). World Medical Association Jesper Ryg, consultant, Ph.D., is associate professor and head of Declaration of Helsinki: Ethical principles for medical research Geriatic Research Department of Geriatric Medicine at OUH and involving human subjects. Journal of the American Medical Department of Clinical Research, University of Southern Association, 310(20), 2191–2194. https://www.wma.net/poli- Denmark. cies-post/wma-declaration-of-helsinki-ethical-principles-for- medical-research-involving-human-subjects/ Katja Thomsen, consultant, Ph.D. Employed at Department of Geriatric Medicine, OUH.
Author Biographies Dorthe Susanne Nielsen, Ph.D., Associate professor, Docent, RN. Annemarie Toubøl, Ph.D. student, MScN, RN. Employed at DSN is currently positioned at Migrant Health Clinic, OUH, Centre University College Lillebaelt since 2010 as a senior lecturer. AT is for Global Health, University of Southern Denmark, and Health doing a Ph.D. study with a focus on dementia friendly hospitals and Sciences Research Center, University College Lillebaelt. DSN’s affiliated to the Department of Geriatric Medicine, OUH, Svendborg research concerns migrants and vulnerability. Paper 2
Article
Dementia 2020, Vol. 0(0) 1–17 Stakeholder perspectives of the © The Author(s) 2020 Article reuse guidelines: dementia-friendly hospital: sagepub.com/journals-permissions DOI: 10.1177/1471301220947848 A qualitative descriptive focus journals.sagepub.com/home/dem group study
Annemarie Toubøl Health Sciences Research Center, UCL University College, Denmark Lene Moestrup Health Sciences Research Center, UCL University College, Denmark Jesper Ryg Department of Geriatric Medicine, Odense University Hospital, Denmark Katja Thomsen Department of Geriatric Medicine, Odense University Hospital, Denmark Dorthe S Nielsen Centre for Global Health, University of Southern Denmark, Denmark
Abstract The term dementia-friendly hospital is increasingly used to describe a variety of initiatives and strategies that are implemented to meet the challenges faced by patients with dementia during hospitalization. However, no definition of the dementia-friendly hospital currently exists. This qualitative focus group study aimed to describe stakeholders’ perspectives of the dementia-friendly hospital. Four stakeholder groups were included: people with dementia, relatives, hospital staff, and representatives from the Danish Alzheimer Association. The thematic analysis suggests that a person-centered approach is a key feature. This approach is described as a continuously reflexive awareness of how to see the person behind the dementia diagnosis. We discuss possible revision of the current dementia discourse and the implications of the findings for future practice and research.
Keywords dementia, dementia-friendly hospital, qualitative description, focus groups, stakeholders’ perspective, thematic analysis
Corresponding author: Annemarie Toubøl, UCL University College, Vestre Engvej 51 C, Vejle 7100, Denmark. Email: [email protected] 2 Dementia 0(0)
Background Hospital admissions for people with dementia are expected to increase in the future due to increasing numbers of people with dementia (Patterson, 2018) and the comorbidities that are commonly associated with a dementia diagnosis (Galvin et al., 2010; Lin et al., 2013). Hospitalizations often cause a downward health spiral for patients with dementia, as the care of these patients in hospitals tends to be suboptimal and trapped in medical and task-orientated routines (Allwood et al., 2017; Dewing & Dijk, 2016; Featherstone et al., 2019; Innes et al., 2016). Some of these suboptimal outcomes are described as negative patterns of resistance (Featherstone et al., 2019), increased confusion (Allwood et al., 2017), and a lack of dignity in care (Innes et al., 2016). A broad array of political requirements has resulted in several dementia-friendly hospital strategies and initiatives worldwide (Dementia Action Alliance, n.d; Grey et al., 2018; Ministry of Health and Care, 2016; The Scottish Government, 2017), and the Danish national dementia strategy includes a focus on the development of dementia-friendly hospitals (Ministry of Health, 2017).
Introduction to dementia-friendly hospitals The term dementia-friendly hospital is most commonly used in relation to educational initiatives and environmental design, with a focus on improving care and treatment of patients with dementia (Hebert & Scales, 2017). There is an emerging body of evidence about dementia friendliness in hospitals deriving mostly from the United Kingdom. This evidence suggests that educational in- itiatives have a positive impact on the knowledge and competencies of hospital staff (Scerri et al., 2017; Surr & Gates, 2017), though a sustainable effect is unknown. Further, there is some evidence that changing the physical environment toward dementia friendliness may improve the safety and well-being of these patients in acute settings (Brooke & Semlyen, 2019; Eastham & Cox, 2017; Parke, 2017), revealing sparse knowledge about general hospital settings. However, the current state of dementia friendliness in hospitals is questioned, and an important inquiry is whether these implemented initiatives actually create dementia friendliness in hospital settings. A qualitative evidence synthesis with the aim of exploring the perspectives of patients with dementia in acute hospital settings showed that patients with dementia prefer that their “person” is valued and identified some deficiencies with acute hospital care of patients with dementia, for example, pa- ternalistic and task-focused approaches, despite the increased focus on dementia in hospitals (Reilly & Houghton, 2019). Furthermore, dementia friendliness appears to be far from internalized in hospitals from the carers’ perspective. A systematic review found that the dignity is missing in acute hospital care, and the support for patients with dementia to handle basic needs is insufficient (Beardon et al., 2018). Additionally, a metasynthesis showed that hospital staff in general hospitals find it challenging to deliver person-centered care to patients with dementia and that hospital staff tended to have negative attitudes toward patients with dementia (Turner et al., 2017). In summary, some of the challenges in implementing dementia friendliness in hospital settings could be due to the difficulties in combining hospital routines and person centeredness. Furthermore, a shared pathway concerning dementia friendliness among hospital staff is requested (Reilly & Houghton, 2019). Additionally, some of the challenges of applying dementia friendliness in hospitals may be due to different operationalizations of the term dementia-friendly hospital across settings and disciplines, as suggested by Hebert and Scales (2017). These authors advocate for continued research focus on such terms in the expectations that more precise definitions will lead to better identification of dementia-friendly initiatives (Hebert & Scales, 2017). Toubøl et al. 3
The continued development of dementia-friendly initiatives in hospitals requires the inclusion of important stakeholders’ perspectives (Heward et al., 2017). A comprehensive understanding of how to approach patients with dementia in hospitals must draw on these perspectives (Prato et al., 2018; Xidous et al., 2019). The aim of this study was to explore and describe stakeholders’ perspectives of a dementia- friendly hospital. Additionally, we sought to identify similarities and differences in the aspects of importance to the stakeholders in relation to the description of a dementia-friendly hospital.
Method Study design We used a qualitative design based on focus groups to explore the subject and provide in-depth descriptions (Halkier, 2016). The descriptive approach guided us to stay close to data in order to produce rich descriptions (Sandelowski, 2000) with a focus on emic knowledge, which can then be used to guide implementation of initiatives and interventions (Bradshaw et al., 2017), such as dementia-friendly initiatives.
Participants and recruitment Focus group interviews with the four following stakeholder groups were conducted. People with dementia were invited in order to get a firsthand perspective. Relatives were invited, as they are close to the people with dementia and know about most of the needs of people with dementia in hospitals. Hospital staff with extended knowledge of dementia were invited. Representatives from the Danish Alzheimer Association were invited in order to represent the interests of people with dementia, and further, this organization has an active voice in dementia strategies and politics in Denmark. The inclusion criteria for all participating groups were their respective belonging to the groups. In addition, we searched for participants among people with dementia and relatives who had expe- riences with hospitalization, which was the case for all participants in these groups. The recruitment to this study was purposeful. Participants were recruited from different settings with help from gatekeepers. The persons with dementia (n = 4) were all diagnosed with dementia and were recruited from a local dementia network. These participants participate in a weekly cooking course, and the nurse responsible for the group of four men asked them if they would agree to participate in a focus group interview. The relatives (n = 5) were recruited from the same local dementia network as mentioned above and were similarly asked by the responsible nurse if they would participate in a focus group interview, at their weekly meeting for relatives. All relatives had a spouse or a parent with dementia when the interview took place. The hospital staff (n = 4) were recruited from a University Hospital and were invited if they had completed a 5-day dementia course. This hospital was, as the interview took place, engaged in a large-scale national project, with the aim of developing dementia-friendly hospitals. Ten hospital staff were invited by email, seven accepted participation and four attended the focus group interview. The representatives from the Danish Alzheimer Association (n = 3) were recruited through the association. Four members were invited by phone. They all accepted the participation in the focus group interview and three attended. See Table 1 for detailed information about participants. 4 Dementia 0(0)
Table 1. Demographic information of the stakeholder groups.
Persons with dementiaa 4 Gender Male 4 Age group (years) ≥65 4 Relativesb 5 Gender Male 2 Female 3 Relationship to person with dementia Spouse 4 Daughter 1 Age group (years) ≥65 2 ≤65 3 Hospital staffc 4 Gender Male 1 Female 3 Age group (years) ≤65 4 Profession Cleaner 1 Head of department 1 Nurse 1 Physiotherapist 1 Representatives from the Alzheimer associationd 3 Gender Female 3 Membership background Relative 1 Relative and nurse 1 Nurse 1 Age group (years) ≤65 1 ≥65 2 aAll the participants with dementia were living at home with a spouse and were able to participate in a weekly cooking class for men. bThe relatives were a part of a relative group in the local dementia network. Two of these participants lived with their relative with dementia in their homes. The remaining three stated that their relative with dementia lived in a nursing home. cThe hospital staff were a part of a local dementia-friendly hospital network. They acted as role models and facilitators at their respective working units in order to implement dementia-friendly strategies at the hospital. dThe representatives from the Alzheimer Association all participated in a regional member group.
Data collection One focus group interview in each participant group was conducted from November 2018 to January 2019. The order of the interviews was: relatives, people with dementia, representatives from the Alzheimer Association, and hospital staff. This order was guided by availability/accessibility of the participants and practical circumstances. The interviews lasted between 50–70 minutes. The first author, who is a trained nurse, was the primary interviewer, and the last author acted as a moderator in the interviews with relatives, hospital staff, and representatives from the Alzheimer Association. A fellow PhD student acted as a moderator in the interview with persons with dementia. In the interviews with the participants with dementia and the relatives, the gatekeeper nurse participated as a listener. The interview guide was refined from the current literature about persons with dementia in hospitals and dementia-friendly initiatives, policies, and local-implemented strategies. The in- terview guide had a structured form, as recommended in qualitative descriptive studies (Neergaard et al., 2009), and was dynamic, as the discussions in one interview led to topics and questions that Toubøl et al. 5 could be elaborated in the next interview. Each interview included an introduction to the term dementia friendly and the status of the definition of this term. Different opening questions were used to introduce topics and start discussions. These questions had different phrasings depending on the focus group participants. Following examples serve as an overview of open-ended and topic-guided questions: “Can you recall an experience from the hospital with a patient with dementia?,”“What is the first thing that you think of when I say hospital?” followed by “Do you like to be at a hospital?,” “What are your thoughts about what constitutes a dementia-friendly hospital environment?,”“What do you think should be the characteristics of hospital staffs’ dementia-friendly approach?,” and “What are your thoughts about the entire workforce in the hospital being educated in dementia topics?” Additionally, specific question-guided discussions, for example, questions about the “life storybook” as a tool during hospital stays. The interviews were audio recorded and transcribed verbatim by an external assistant.
Ethical considerations The study followed the Helsinki Declaration (World Medical Association, 2013). Informed consent was obtained from all participants orally and in writing. Further, all participants were informed that it was possible to withdraw at any time. To assure that the participants understood their involvement in interviews, all focus group interviews started with the interviewer repeating the aim of the study orally and written material was provided if the participants wanted it. The group of participants with dementia required additional considerations concerning the recruitment (West et al., 2017) due to the affected memory of these people (Drageset, 2019). Therefore, this interview started with short information about the study combined with small talk about their attendance in the current cooking course. This was done to create a positive atmosphere and to assure that the participants with dementia were supported to participate in an informed basis (Hellstrom¨ et al., 2007). Concerning informed consent, this was sought as a process of consent (Rivett, 2017). This entailed that we returned to the aim of the interview several times in order to clarify what the interview was about.
Analysis The analytical process was inspired by inductive reflexive thematic analysis as described by Braun and Clarke (2006, 2019). Furthermore, the comparison group approach was applied to broaden the insight into the descriptions of the important elements of the dementia-friendly hospital (Lindsay, 2019). The analytical process started with the reading and rereading of each transcribed interview to obtain familiarity with the data. This was followed by an initial coding of each transcript in- dividually, identifying a mix of semantic and latent codes across the dataset. The analytical question “How are important elements that constitute a dementia friendly hospital expressed and described by participants?” served as guidance in the initial coding phase. Then, the codes were sorted into potential themes within the whole dataset, and a comparison between groups identified similarities and differences. The last step in the analytical process resulted in the development of one overall theme (seeing the person behind the dementia diagnosis) and two themes (balancing knowledge and facilitating protection) with subthemes (significant knowledge about the person, significant knowledge about dementia, protective surroundings, respectful disclosure of the dementia diagnosis, and significant others). The identified themes and subthemes were reviewed across interviews to ensure coherent descriptions and unique content with minimal overlap. Next, the themes were applied to the transcripts to assure applicability. The first author did the initial coding and the identification of 6 Dementia 0(0) themes and subthemes, and the first, second, and last authors named and defined the themes and subthemes. All authors discussed the final themes. The data were handled manually.
Findings The findings in this study are illustrated in the thematic map in Figure 1 and elaborated below. In line with the descriptive analytical approach, the findings include manifest descriptions of data that stay close to the participants’ voice, and latent levels that go beyond the surface of data, through in- terpretation (Braun & Clarke, 2006, 2019). Quotes (group and participant number) from the in- terviews illustrate opinions throughout the findings section to ensure transparency and close connections between data and findings.
Seeing the person behind the dementia diagnosis The overall theme was consistent throughout the expressed descriptions in the data and represented a person-centered approach viewed as essential to the description of a dementia-friendly hospital. All participants across the groups were in agreement that if this approach was missing, the im- plemented initiatives would only make a slight difference. The hospital staff expressed that they were concerned that dementia-friendly strategies were just a new quality marker, and that the department would revert to previous routine over time, based on earlier experience regarding implementation of different initiatives in the hospital setting. One participant described specifically that knowledge on how to maintain a continued focus on the person and dementia is of crucial importance if a dementia-friendly hospital intends to meet the individual expectations and needs of patients with dementia:
“Implemented initiatives must not result in overlooking the persons with dementia in new dementia friendly routines” (Hospital staff 4).
Figure 1. Thematic map showing themes and subthemes. Toubøl et al. 7
Most of the participants were convinced that if a hospital is going to succeed in being dementia friendly, there is a need to focus more on “friendly” than “dementia” as this prioritization will diminish stigmatization. A way of exemplifying this was visible in the following quote:
“If you say dementia friendly, this indicates that the diagnosis is more important than how you approach the person” (Hospital staff 4).
The participating groups all emphasized a friendly person-centered approach, with everyday ex- pressions being used to describe the quality of the approach in encounters between people as an answer to the question: “Describe the most important element in a dementia-friendly hospital”:
“The cliche´ about warm hands is not dead. Patients with dementia are dependent on these” (Hospital staff 1)
“It all depends on the eyes—I mean: observe and sense beyond the visible signs and symptoms” (Representative from the Alzheimer Association 1)
“The most important element in dementia friendliness is staff with a heart” (Relative 3)
“True kindness is important—some persons have this innate kindness others don’t” (Person with de- mentia 4)
These quotes solidify that dementia friendliness goes beyond what can be taught but also depends on an intrinsic quality of how you recognize other people. An important aspect of the person-centered approach described by all participants was to recognize the full potential of the patient with dementia. This was expressed as a continuation of a narrowed focus on meeting the needs of patients with dementia to a more holistic approach. The participants in all groups agreed that even though you have dementia there is a need to be treated as persons with potential and not in a regressive way. Participants described this in various ways. One of the participants with dementia said:
“They have to include me in the decisions and not ignore my ability to contribute” (Person with dementia 5).
Supplementary, a relative expressed:
“I know that my wife’s answers to specific questions do not always make sense, but that doesn’t mean that she should be excluded because she has opinions about how she wants things to be done. I think that it is important to respect that” (Relative 1).
Balancing knowledge This theme illustrates that if a hospital is dementia friendly, it is required that the hospital staff have comprehensive knowledge about the patient as a person and the diagnosis of dementia. The sources of knowledge can vary and need to be applied in a balanced way, with the aim of seeing the person behind the diagnosis. 8 Dementia 0(0)
Significant knowledge about the person. All participants across sample groups expressed that knowing the person is of crucial importance; however, there was some disparity about what this entailed. Representatives from the Alzheimer Association and hospital staff argued that a life storybook with pictures of the former life, grandchildren, house, etc. could be a mediator for conversations. This life story perspective could prevent misunderstandings and escalating aggressions and resistance and thereby create a basis for a respectful inclusion in the clinical situations. As one hospital staff said:
“If there is available knowledge about their former profession or family relations, this can be an ap- propriate way of approaching them as persons” (Hospital staff 4).
In contrast to this, the participants with dementia rejected life storybooks as an important element in dementia-friendly hospitals and expressed that there is no need for the healthcare professionals in hospitals to know everything about them. They suggested that an actual status of their condition and daily living could be enough:
“If they have some insights into my current challenges, that is enough, as long as they treat me as me” (Person with dementia 2).
As a third perspective of important knowledge about the person with dementia, relatives unani- mously agreed that the most important issue is to know how to meet the basic needs of patients with dementia. One relative said:
“The most important knowledge to secure a dementia friendly approach is to know if the patient can manage meals by herself, walk, manage toileting, and get dressed by herself” (Relative 3).
Significant knowledge about dementia. All participants agreed to some degree that dementia education for all hospital staff is important as it can create a basis for meeting the needs of patients with dementia in different settings and situations. The idea of educating the whole workforce in a hospital was acknowledged and appreciated across groups. This fundamental basic knowledge was described as an assurance of the right approach no matter where or with whom the patient with dementia interacts. The following quote illustrates this:
“If a patient wanders around by the elevators, and it is clear that this person doesn’t know how to manage the buttons. Then a basic knowledge about dementia is of great advantage to a hospital porter because he will approach this patient with caution” (Hospital staff 2).
Similarly, in circumstances with short encounters with different staff and transfer to other de- partments, knowledge of dementia is a need for all staffing groups, despite the limited time staff interacts with the patient:
“It can be overwhelming to go to an X-ray examination. So if the hospital staff know something about dementia, a lot of problems can be avoided” (Representative from the Alzheimer Association 1).
However, it was a clear and common opinion across participant groups that knowledge about dementia obtained through education is in itself not enough to create a dementia-friendly hospital. An expressed concern was that knowledge needs to be continuously nurtured and personalized. This was reflected in the group discussions, as a concern regarding implemented education as being Toubøl et al. 9 effective as long as it is being implemented, without considerations about how knowledge is translated into practice and how to maintain knowledge in the hospital. Furthermore, the participants across all groups expressed a concern about the tendency to treat all patients with dementia the same, when basic knowledge about dementia provided to all staff is considered and used unreflective. In line with the importance of maintaining dementia-friendly approaches, a participant with dementia described his concern about believing too much in education:
“One thing is to attend a class; another thing is to use your knowledge” (Person with dementia 4).
Facilitating protection Participants across the groups expressed that an important element in dementia-friendly hospitals is to protect the patient with dementia as a person. This overall idea of protection included various elements. The stakeholders’ descriptions appeared with some difference; however, a common point in their views was that the overall aim of protecting the patient with dementia was to facilitate the feeling of safety and avoidance of feeling humiliation.
Protective surroundings. All participants expressed a transparent protective environment as a con- stitutive element of dementia-friendly hospitals. This included making wayfinding easier through use of signage (such as for toilets/dining rooms), as this could prevent people with dementia becoming lost. One participant described this as follows:
“I prefer pictures illustrating the function of the rooms, then I can avoid ending in the chapel instead of the toilet” (Person with dementia 4).
Additionally, most participants said that simplicity in areas like hallways and patient rooms would be of great benefit to patients with dementia, as this can minimize over stimulation. One relative shared her opinions:
“If there are too many medical objects in the rooms, patients with dementia can feel uncomfortable and kind of losing themselves. A simple arrangement would be preferable as this gives a feeling of safety” (Relative 1).
Furthermore, another participant expressed that he preferred to be protected and thereby avoid humiliating himself:
“If I don’t know where to go or what to do with things, I make a fool out of myself and afterwards I feel embarrassed” (Person with dementia 2).
Another way of protecting patients with dementia from stimulation like noise and visual impressions was the use of bed partition screens. This was described differently among participants across groups and illustrated how considerations about protection include an awareness of the delicate balance between real protection and pseudo-protection. The participants with dementia and the repre- sentatives from the Alzheimer Association expressed that the use of bed partition screens could be misinterpreted help, since patients with dementia often forget where they are, and therefore a bed partition screen can cause unintended fear of being alone as well as in the wrong place, followed by an attempt to escape. In contrast to this, relatives and hospital staff described that the use of bed 10 Dementia 0(0) partition screens to protect the patient with dementia included decisions about how to protect other patients from accidental disturbances. This was expressed as a concern related to protect the patients’ feeling of shame, if they disturbed fellow patients unintentionally.
Respectful disclosure of the dementia diagnosis. In all group interviews, the disclosure of the dementia diagnosis was discussed in relation to protection of the patient with dementia. The discussions revealed that visually showing the diagnosis in one way or another requires awareness of how this information is handled, and both positive and negative views emerged. Positive views were that it could create a basis for an immediate awareness on how to identify and approach the patient with dementia, thereby avoiding misunderstandings and improving communication. The hospital staff described how the disclosure could improve the interdisciplinary collaboration around the patient. One hospital staff said:
“If knowledge about the patient having a dementia diagnosis is assessable to the staff involved, it would make transfers to other departments easier and it will be beneficial to the patients when staff is prepared to have an extended awareness of deviations from scheduled routines if necessary” (Hospital staff 1).
Negative views included the risks of neglecting the patient’s ability to contribute to any kind of collaboration in the hospital context and of limiting the focus to the dementia diagnosis. Whether the patient’s dementia diagnosis should be visible in form of a clear sign on the first page of the medical record, a badge, or a bracelet in a specific color was a point of contention. In the group of participants with dementia, there were some concerns and disagreements regarding disclosure. One participant said that if he was lost and had problems with finding his way around, it would be helpful if it was visible for the staff that he had a dementia diagnosis. Another participant said he would reject the disclosure as a badge like visually impaired people due to the stigmatizing effect:
“I am afraid that the first impression of me will be that I have dementia and that it doesn’t make sense to include me. I am more than my dementia diagnosis” (Person with dementia 1).
The relatives were clear in their opinions and described the subject of disclosure as balancing on a knife edge between protection and exposure. One relative shared her opinion:
“I think that you should consider whether it serves the patient to have this visible and easy accessible knowledge because they don’t have a possibility to judge if it actually reduces them to a diagnosis” (Relative 5).
Significant others. Facilitating protection as a part of dementia friendliness in hospitals also included protecting the patients from feeling lonely and anxious. The participants across the groups agreed that dementia friendliness in hospitals requires the option to have significant others stay nearby during hospital admissions in order to bring the person with dementia to the forefront. All par- ticipants appreciated the involvement of relatives during hospitalization. However, this involvement should always be approached in a balanced way in order to protect the patient from being overruled with no opportunity to share their views and at the same time not to expect too much of the relatives’ participation in treatment and care. One member of the Alzheimer Association expressed: Toubøl et al. 11
“It is important that there is an attention on the relatives’ role during hospitalization. I think that their most important role is to make the patient feel safe by simply just being there” (Representative from the Alzheimer Association 3).
Similarly, most of the participants expressed that the attendance of relatives is invaluable when a person with dementia is hospitalized, as they can create safety spaces by representing something well known. Furthermore, an important point in the interviews was that the relatives can act as mediators when the memory fails, though the views of the person with dementia should not be overlooked. A participant with dementia said that though he preferred to be addressed personally, he feels lost without his wife:
“It’s not that I do not get what they say, but I like that she acts as my memory and sits next to me” (Person with dementia 2).
In addition to the importance of relatives’ attendance, some of the participants expressed that the cooperation with relatives also included that they are permitted to take a needed break. Balancing the involvement of relatives was expressed as a part of dementia friendliness, since protection goes beyond the patient with dementia by embracing and respecting the relatives as important persons.
“Living with a spouse with dementia can be a full-time job. It should be legal to take a break” (Relative 5).
Discussion The aim of this study was to explore and describe stakeholders’ perspective of the dementia-friendly hospital and to identify similarities and differences between these perspectives. Through the perspectives of stakeholders, we have been able to broaden the insight into important elements in the constitution of the dementia-friendly hospital. The perspectives of the involved stakeholders support the importance of already ongoing initiatives, as our findings of “balancing knowledge” and “facilitating protection” reflect some aspects of these initiatives (Brooke & Semlyen, 2019; Eastham & Cox, 2017; Surr et al., 2018). Nevertheless, our findings add a new dimension of crucial im- portance in the description of the dementia-friendly hospital. This dimension goes beyond specific initiatives and supports a need for a continuously reflexive approach toward seeing patients with dementia as persons. Our findings showed that the participants challenged the term dementia friendly and suggested that friendly should be prior to dementia as an indicator of dementia friendliness in hospitals. This is similarly acknowledged in a study of dementia-friendly indicators pointing to friendly and sup- portive as important dementia-friendly hospital indicators (Wu et al., 2019). Moreover, the critical view on dementia friendly as a term aligns with the focus in a review of dementia action plans and strategies in western countries (Lin & Lewis, 2015). In the study by Lin and Lewis, they recommend that dementia friendly should be extended as a concept by including dementia capable and dementia positivity. By integrating these terms, the authors suggest that the optimal line for dementia friendliness is encompassed. They argue that dementia friendly stands for involving and including people with dementia, but as a term, it is insufficient as it fails to include how to involve and how people with dementia are viewed as persons. Hence, they suggest the addition of dementia capable in order to ensure that the needs of people with dementia are addressed and met. Further, they suggest that dementia positivity as an additional element to dementia friendly can create a complete 12 Dementia 0(0) fulfillment of the term dementia friendly. This addition includes strength finding as an approach to reflect that people with dementia are viewed as true contributors (Lin & Lewis, 2015). This extension of the term dementia friendly is exactly what the participants in our study requested, as they were in agreement that the fulfillment of care and treatment, as well as the involvement during hospital- ization, lies with seeing the patient with dementia as a person of potential. As a constitutive element in the description of the dementia-friendly hospital, our findings point to a need for a discussion of the current dichotomized dementia discourse between tragedy and living well as described by McParland et al. (2017). According to the stakeholders’ descriptions in our study, dementia friendliness in hospitals primarily concentrates around how to support patients with dementias’ ability to remain a person during hospitalization rather than focusing on the limiting consequences caused by the dementia diagnosis. This coincides with findings from a study de- scribing how patients with dementia experience encounters with hospital staff in general hospital settings (Toubøl et al., 2020). This study indicates that the current dementia discourse seems to challenge how patients with dementia are recognized in hospital settings. It is argued that the personal contribution of the patient is often overlooked resulting in an underestimated importance of sustaining personhood. This is further supported in the results of a qualitative study showing that constructing an identity for patients with dementia within a hospital setting is challenging due to issues about patients with dementia being described in respect to their care needs or in a task- orientated language, leaving the person with dementia as a bystander (Quirke et al., 2019). A new dementia discourse would benefit from being guided by an ethical reflective tool in order to adapt a more supportive approach with a focus on selfhood, seeing the person as a whole, and that persons with dementia have the rights and opportunities to grow and contribute in relationships as described by Reed et al. (2017). This is also the essence of our key findings describing important constitutive elements of the dementia-friendly hospital and is recommendable in shaping future directions of dementia friendliness with the aim of overcoming the dichotomized discourse. To manifest this new dementia discourse could serve as a guide in dementia-friendly initiatives in order to respect the limited resources in persons with dementia and at the same time acknowledge the remaining abilities in order to live a meaningful life (De Vugt & Droes,¨ 2017).
Methodological considerations This study gave valuable insights of stakeholders’ perspectives of the dementia-friendly hospital, though our findings reflect a small sample of stakeholders (Bradshaw et al., 2017). Their insights are invaluable and requested as they add important knowledge to the current understanding of dementia- friendly hospitals (Bunn et al., 2017; Reilly & Houghton, 2019). The descriptive approach ensured that we gave voice to firsthand knowledge, as the stakeholder perspectives are interpreted con- sistently to the opinions voiced during interview discussions (Bradshaw et al., 2017; Neergaard et al., 2009). Furthermore, the thematic analysis allowed us to focus on both manifest and latent levels, with no attention to quantify but merely searching for what the participants described as most important (Vaismoradi et al., 2013). The inclusion of people with dementia is a strength in our study, as their perspectives are re- quested and needed (Heward et al., 2017). Persons with dementia have been sparsely included in research, though their perspectives contribute an urgently required authentic perspective (Hebert & Scales, 2017). However, this interview was different from the others, since the questions to start the discussions were shorter and more guiding as recommended (Cridland et al., 2016). During the interviews, the interviewer paid attention to balance between the structured interview questions and the explorative open-ended questions. This was done to assure that the phenomenon of Toubøl et al. 13 interest: dementia-friendly hospital was covered and illuminated by the participants’ perceptions and not the leading nature of the interview questions. The sample of participants with dementia represents some limitations, since their perspectives may not coincide with perspectives of those with late stage dementia or those who are younger, or female. Another sample limitation was that all representatives from the Alzheimer Association were female. A third sample limitation was that the hospital staff represented a narrow segment of the different professions in a hospital setting. The use of gatekeepers in this study entails some limitations that should be addressed (Thoft et al., 2020). Firstly, the recruitment of people with dementia and relatives relied on building a trusting relationship to the nurse responsible for these groups. This relationship involved a close collab- oration between the first author and gatekeeper in order to assure that participation in the research process took place in a constructive informed basis. Further, the gatekeepers’ attendance during the interviews signified this necessary close collaboration with the gatekeeper, as we decided to meet the gatekeepers’ wish to protect and sustain the feeling of safety in the groups. Concerning ethical principles in interviewing people with dementia, some additional reflections are relevant to clarify. Firstly, ethical discretion was applied in the interviews, particularly in the interview with the participants with dementia in order to manage protection and minimize feelings of shame and deficiency when memory lacked. General phrases and humor were used to hide this (Drageset, 2019). Secondly, situational ethical considerations were demanded, as the participants with dementia sometimes needed to disclose some of their private conditions and relations. In these situations, the interviewer assured that the expressions were treated with respect and acknowledged (Drageset, 2019).
Conclusion and implications for practice Our study described stakeholders’ perspectives of a dementia-friendly hospital and highlighted that a person-centered approach that builds on seeing the person behind the dementia diagnosis, as the most important element in the description of dementia friendliness in hospitals. The description of seeing the person behind the dementia diagnosis is explained as a way to balance the use of significant knowledge in every single situation and to facilitate an appropriate protection that suits the person with dementia. However, there were some differences in the participants’ descriptions of seeing the person behind the dementia diagnosis, revealing that a continuous reflection on how a person-centered approach is applied to every single situation is needed. The results from this study add important elements to future directions in the development and implementation of dementia-friendly hospital initiatives. Guidance to dementia-friendly initiatives must rely on the principle of seeing people with dementia as equal contributors, though respectfully, as their challenges following the dementia diagnosis are recognized. An “ethical roadmap” as described by Reed et al. (2017) could be introduced as an inspiration to a new way of addressing people with dementia. The “ethical roadmap” is based on the principle of seeing the whole person and supporting this person in continuous growth and engagement as an expert on living with dementia (Reed et al., 2017). Further research is required concerning how dementia-friendly hospital strategies are translated into everyday practices in hospitals, including the adaptability of the current dementia discourse in such settings. Additionally, a clarification of how hospital staff are supported in sustaining dementia friendliness is needed, including the elements of importance in the implementation of dementia- friendly strategies. Furthermore, future research must include an exploration of the effect of im- plemented dementia-friendly initiatives in hospitals from relevant stakeholders’ perspectives. 14 Dementia 0(0)
Acknowledgements We would like to thank the participants in the interviews for sharing their perspectives on the dementia-friendly hospital. We also thank the gatekeepers (the Danish Alzheimer Association, the local community dementia network, and the Dementia Friendly Project team at the University Hospital) for recruitment support.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
Ethical Approval The Regional Danish Data Protection Agency approved the study (18/14259).
ORCID iDs Annemarie Toubøl https://orcid.org/0000-0003-4794-8862 Lene Moestrup https://orcid.org/0000-0002-0978-664X
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Quirke, O., Evans, W., & Brosnan, M. (2019). How healthcare professionals in acute settings construct identities for people with dementia. Nursing Older People. DOI: 10.7748/nop.2019.e1132. Reed, P., Carson, J., & Gibb, Z. (2017). Transcending the tragedy discourse of dementia: An ethical imperative for promoting selfhood, meaningful relationships, and well-being. AMA Journal of Ethics, 19(7), 693-703. DOI: 10.1001/journalofethics.2017.19.7.msoc1-1707. Reilly, J. C., & Houghton, C. (2019). The experiences and perceptions of care in acute settings for patients living with dementia: A qualitative evidence synthesis. International Journal of Nursing Studies, 96, 82-90. DOI: 10.1016/j.ijnurstu.2019.04.018. Rivett, E. (2017). Research involving people with dementia: A literature review. Working with Older People, 21(2), 107-114. DOI: 10.1108/WWOP-11-2016-0033. Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334-340. DOI: 10.1002/1098-240X(200008)23:4<334. Scerri, A., Innes, A., & Scerri, C. (2017). Dementia training programmes for staff working in general hospital settings - a systematic review of the literature. Aging & Mental Health, 21(8), 783-796. DOI: 10.1080/ 13607863.2016.1231170. Surr, C. A., & Gates, C. (2017). What works in delivering dementia education or training to hospital staff? A critical synthesis of the evidence. International Journal of Nursing Studies, 75, 172-188. DOI: 10.1016/j. ijnurstu.2017.08.002. Surr, C. A., Sass, C., Burnley, N., Drury, M., Smith, S. J., Parveen, S., Burden, S., & Oyebode, J. (2018). Components of impactful dementia training for general hospital staff: A collective case study. Aging & Mental Health, 24(3), 511-521. DOI: 10.1080/13607863.2018.1531382. The Scottish Government. (2017). Scotland’s national dementia strategy 2017-2020. https://www.gov.scot/ publications/scotlands-national-dementia-strategy-2017-2020/ Thoft, D. S., Ward, A., & Youell, J. (2020). Journey of ethics - Conducting collaborative research with people with dementia. Dementia (London, England). DOI: 10.1177/1471301220919887. Toubøl, A., Moestrup, L., Ryg, J., Thomsen, K., & Nielsen, D. S. (2020). Even though i have dementia, i prefer that they are personable: A qualitative focused ethnography study in a Danish general hospital setting. Global Qualitative Nursing Research, 7. DOI: 10.1177/2333393619899388. Turner, A., Eccles, F. J. R., Elvish, R., Simpson, J., & Keady, J. (2017). The experience of caring for patients with dementia within a general hospital setting: A meta-synthesis of the qualitative literature. Aging & Mental Health, 21(1), 66-76. DOI: 10.1080/13607863.2015.1109057. Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences, 15(3), 398-405. DOI: 10.1111/nhs. 12048. West, E., Stuckelberger, A., Pautex, S., Staaks, J., & Gysels, M. (2017). Operationalising ethical challenges in dementia research—A systematic review of current evidence. Age & Ageing, 46(4), 678-687. DOI: 10.1093/ ageing/afw250. World Medical Association. (2013). World medical association declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA, 310(20), 2191-2194. https://www.wma.net/policies- post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ Wu, S. M., Huang, H. L., Chiu, Y. C., Tang, L. Y., Yang, P. S., Hsu, J. L., Liu, C. L., Wang, W. S., & Shyu, Y. I. L. (2019). Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers. Journal of Advanced Nursing, 75(11), 2878-2889. DOI: 10.1111/jan. 14123. Xidous, D., Grey, T., Kennelly, S. P., McHale, C., & O’Neill, D. (2019). Dementia friendly hospital design: Key issues for patients and accompanying persons in an Irish acute care public hospital. HERD: Health En- vironments Research & Design Journal, 13(1), 48-67. DOI: 10.1177/1937586719845120. Toubøl et al. 17
Annemarie Toubøl, PhD student at Department of Clinical research, University of Southern Denmark, RN, MScN, and senior lecturer at the Health Science Research Center, UCL University College. The PhD study has a focus on the dementia-friendly hospital including user perspectives and an evaluation of a large-scale education intervention.
Lene Moestrup, PhD, Master in Health Science, RN, senior lecturer at the Health Science Research Centre, UCL University College. Her competences deal with qualitative research methods. Her research is about palliative care and focus on existential aspects as meaning of life, thoughts about death, faith, and social relations. Her research in the last three years has been concerned about people with dementia and their everyday life in a Dementia Village.
Katja Thomsen, PhD, MD, associate professor, consultant in geriatric medicine at the Odense University Hospital, Denmark; has performed clinical research within the field of falls and oste- oporosis; has clinical experience in diagnosis and treatment of dementia. Participated in the working group of “National clinical guideline for diagnosis of mild cognitive impairment and dementia” published by the Danish Health Authority.
Jesper Ryg, associate professor, PhD, and consultant in Geriatric Medicine at the Odense University Hospital, Denmark and Head of Geriatric Research at the Department of Clinical Research, University of Southern Denmark. He is performing both clinical and epidemiological studies with focus on falls, geriatrics in cancer patients, polypharmacy/deprescribing, and frailty aspects in- cluding end of life and dementia. He is a full board member of European Geriatric Medicine Society (EuGMS), co-leading the EuGMS Special Interest Group on Falls and Fracture prevention, and member of the UEMS (European Union of Medical Specialists) Geriatric Medicine Section.
Dorthe S. Nielsen, RN. MHS, and Ph.D. is an associate professor at Odense University Hospital and University of Southern Denmark and Docent at University College Lillebælt. Her research focuses on vulnerability, intercultural nursing, aging, and patients’ everyday life with chronic illnesses and diseases. She works with a multidisciplinary practice lead research approach and takes patients narratives, everyday life, communication, and culture into account. The research involves qualitative as well as quantitative methods for identifying and developing practice-oriented nursing and treatment for vulnerable patients. Paper 3
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Title
The impact of an education intervention on the approach of hospital staff to patients with dementia in a Danish general hospital setting. An explanatory sequential mixed methods study.
Authors
Annemarie Toubøl, Ph.D. student, MScN (1,2,3,4)
Lene Moestrup, Ph.D. (3)
Katja Thomsen, Ph.D. (1,2)
Jesper Ryg, Professor, Ph.D. (1,4)
Dennis Lund Hansen, Ph.D. (6)
Mette Foldager, MScN (2)
Søren Jakobsen, Consultant (2)
Dorthe Susanne Nielsen, Professor, Ph.D. (1,4,5)
1) Geriatric Research Unit, Department of Geriatric Medicine, Odense University Hospital, Denmark 2) Department of Geriatric Medicine, Svendborg, Odense University Hospital, Denmark 3) Health Sciences Research Center, UCL University College 4) Department of Clinical Research, University of Southern Denmark, Odense, Denmark 5) Migrant Health Clinic, Odense University Hospital, Denmark 6) Department of Hematology, Odense University Hospital, Denmark
Correspondence
Annemarie Toubøl, Ph.D. student, MScN
Health Sciences Research Center, UCL University College
Vestre Engvej 51 C, DK- 7100 Vejle
Phone: +45 26812984
Email: [email protected]
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Acknowledgement
We would like to thank the participants in this study for taking time to respond to the questionnaires and for sharing their experiences. Further, we are grateful to the help we received from the dementia-friendly hospital project team at Odense University Hospital, Svendborg, the leaders, and the dementia specialists at the hospital in the process of recruitment of participants.
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Abstract The number of patients with dementia admitted to hospitals is increasing. However, the care and treatment of these patients tends to be suboptimal. A response to this is a widespread implementation of educational initiatives. Nevertheless, the effect of such initiatives is questioned. The aim of this study was to investigate the impact of a dementia education intervention by examining the self-reported outcomes of general hospital staff and exploring the staff’s experiences of these outcomes. An explanatory sequential mixed methods design framed the study method. The quantitative data collection included repeated questionnaires: pre- intervention (n=849), one month post-intervention (n=618), and five months post-intervention (n=468) followed by a qualitative data collection using interviews (n=16). The integration of the quantitative and qualitative results suggests that the impact of the education intervention can be ascribed to the interdisciplinary focus, which facilitated a comprehensive commitment to creating careful solutions for patients with dementia. A prioritization of person over task seems to be assisted by an improved interdisciplinary cooperation initiated by the inclusion of all employed staff at the hospital in a dementia education intervention.
Keywords
Dementia-friendly hospital, dementia, education, general hospital staff, explanatory sequential mixed methods design
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Introduction
To meet the needs of a population with a rising prevalence of dementia, national strategies concerning dementia care and treatment in hospitals advocate for an increased focus on staff education and training (1–5).
This focus is requested from different viewpoints: hospital staff experience a lack of knowledge and competencies concerning how to understand dementia, how to manage dementia symptoms, and how to provide person-centered dementia care (6,7), and patients with dementia and their relatives express feelings of stigmatization and dissatisfaction with care and treatment in hospitals (8–12). As a result, dementia-friendly educational initiatives and training programs have been widely implemented in hospital settings in the last few decades (13).
Background
Emerging evidence suggests that staff training in hospitals can improve the knowledge, attitude and competence in dementia care and treatment and can influence person-centered dementia care by facilitating a more individualized approach (14,15). However, the long-term effect of education and training initiatives is unknown since most studies report on their short-term effect (16,17). Some evidence exists concerning the elements that are essential to the successful implementation of dementia educational initiatives in hospital settings. These elements consist of education with minimum duration of one day, tailor made content about dementia, and available dementia experts to support hospital staff in the clinical setting (18,19). Nevertheless, knowledge about the effects of dementia education tends to overlook the complexity of interplaying factors in educational interventions in hospital settings. This complexity involves several issues that go beyond an immediate effect on outcomes such as knowledge scores measured on specific hospital staffing groups
(17,19). Knowledge is needed on how learning outcomes translate into clinical settings at the clinical level as well as the organizational level following dementia educational initiatives, and such knowledge is considered to be of high priority in evaluating such initiatives (14,20–22). Similarly, the evidence of the effect of educational initiatives is limited when it comes to the inclusion of interdisciplinary staffing groups, including the ancillary staff (17,19,23,24). Research suggests that the narrow focus on care and therapeutic staffing groups in dementia education interventions will reduce the effect of such interventions because patients with dementia interact with a large variety of staffing groups during hospitalization (21,25). One study that
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included all hospital staff found that a multidisciplinary education had some effect on the ancillary staffing groups and recommended the inclusion of these groups (26).
The above reviewed literature reveals a need for evidence on how to best evaluate the effect of dementia education initiatives and the impact of such initiatives on the approach of general hospital staff to patients with dementia. Furthermore, alternative methodologies to pre-test-post-test analysis are needed when evaluating the long-term effect of dementia education initiatives and the impact on staff behavior towards patients with dementia in complex settings such as hospitals (17,27). Such methodologies could extend our knowledge concerning the perceived effect described by the involved hospital staff and the practical changes resulting from dementia education initiatives (20). A mixed methods approach could serve as a way to embrace the complexity in evaluating hospital dementia education interventions by measuring the effect quantitatively and explaining these results by qualitatively exploring the essential elements related to the associated changes following an education intervention. To our knowledge, no studies have examined the long-term effect of a dementia education intervention in hospitals with the inclusion of all staffing groups or within this added knowledge about the experiences of staffing groups regarding the impact of the educational intervention.
Aim
The overall aim of this mixed methods study was to investigate the impact of a dementia education intervention by examining the self-reported outcomes of general staff and explaining these outcomes by exploring the staff’s experiences.
Research question
How can qualitative interview data, exploring general hospital staffs’ experience of the impact of a dementia education intervention, explain the self-reported knowledge, attitude, and competence scores from a quantitative measure?
Method
Design
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The philosophical assumptions of pragmatism informed this study. According to pragmatism a rejection of the dichotomy between object and subject is valued, since a complementary approach that acknowledge both objective and subjective knowledge based on what best addresses the aim and research question is respected
(28,29). In our study a quantitative approach was needed to provide results that could be further explained by qualitative results. Thus, an explanatory sequential mixed method design was applied (30) (Figure 1). This mixed methods approach guided the study, allowing the results from one type of study to broaden and explain the results from another type of study. The quantitative phase aimed to provide an overall picture of the impact of an education intervention on the knowledge, attitude, and competence scores of general hospital staff regarding patients with dementia. These results were connected to the qualitative data collection in order to recruit participants that could elaborate on these results. Further, a connecting point between the quantitative and qualitative methods was the development of the interview guide in the qualitative phase based on the quantitative results showing the overall picture of the impact. Lastly, the quantitative results and the qualitative results were connected and integrated with the aim of explaining through interpretation (30).
During the integration phases, the mixed methods research question: “How can the qualitative interview data help explain the quantitatively self-reported scores” served as guidance.
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Figure 1: Explanatory sequential design
Phase * Procedure Product
Longitudinal Survey (n=1107) Numeric data Quantitative data collection Distributed electronically
STATA software v. 16 Descriptive and analytical Quantitative data analysis Wilcoxon signed-rank test statistics
Connecting quantitative results Purposefully selecting to the selection of participants with maximum Interview guide informants and variation interview guide Develop interview questions development
Semi-structured interviews Qualitative data collection (n=16) Interview transcripts Transcription verbatim
Qualitative data analysis Thematic analysis Themes and quotes
Integration of the Interpretation and explanation Joint display quantitative and of how the qualitative results qualitative results can help explain the Discussion, implications, by connecting quantitative results and future research
* Blue boxes = quantitative elements, Red boxes = qualitative elements, Yellow boxes = integration by connecting quantitative and qualitative elements
Setting
This study took place at a smaller hospital within the University Hospital. The hospital has approximately
1600 employees and represents a broad range of functionalities and diversity of professions. The hospital participated in a national large-scale dementia-friendly hospital project from 2017 to 2019 and implemented a variety of initiatives with the common goal of improving the care and treatment of patients with dementia.
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Intervention
The dementia education intervention was inspired by a national plan to develop dementia-friendly hospitals
(2) and aimed at improving basic competencies among the entire workforce in a general hospital setting. The improvement of basic competencies and the development of dementia-friendly hospitals serves as guidance to access the impact of the aim and research question of this study. The intervention consisted of three elements: a mandatory e-learning course about patients with dementia in hospital settings to be completed before participation in the one-day course. The e-learning course did not have a limited timeframe, however, when signed up for the one-day course it was possible to access and complete e-learning. The one-day course was conducted in interdisciplinary teams at the hospital from August 2018 to June 2019 and lasted six hours. The content was related to the following topics: dementia - pathophysiology, diagnosis, non-pharmacological treatment, delirium, person-centered care, communication and therapeutic approaches, ethical issues and legislation, staff-specific self-protective skills. Inspired by principles of peer learning (31), the teaching methods varied and consisted of class room teaching and interdisciplinary group work in small groups. This approach was suitable given the variation in learning conditions and educational backgrounds among the staff participating in this study.The educators were all related to the dementia-friendly project hospital team and represented geriatricians, nurses and health care assistants. Parallel to the course period, Problem-Based
Learning sessions (PBL) were initiated in all departments with the aim of translating knowledge from the intervention elements into practice (32). The PBL sessions were continuously facilitated by educated dementia specialists in all departments and aimed at initiating reflections close to the clinical setting and to identify challenges and jointly suggest future solutions. Though not mandatory, there was a request from the dementia- friendly hospital project team to conduct them regularly with a mix of professions if possible and when the workload allowed. During the education period from August 2018 to June 2019 a total of 878 hospital staff participated in PBL sessions, evenly distributed regarding departments and period.
Quantitative phase
This phase aimed at examining the impact of the dementia education intervention on the knowledge, attitude and competence scores of the general hospital staff.
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Participants
A total of 1107 participants were invited to participate in the quantitative phase. The invited participants included the entire workforce (in this paper named: general hospital staff) from all departments at the hospital who were signed up for the one-day education course. The invited participants represented nursing staff, physicians, therapists, leaders, service personnel, porters, secretaries, laboratory staff, radiographers, and building and craft workers.
Data collection and sampling
A questionnaire was developed and validated by the researchers and health care professionals associated with the study. The questionnaire was distributed to all participants by email two weeks before the education day .
The email gave information about the study and research ethics including the safeguarding of anonymity and contained a link to the survey. Measures were repeated one month after the answering of the pre-intervention questionnaire and five months after the answering of the one-month post-intervention questionnaire. Data were collected from August 2018 to December 2019.
Questionnaire development and validation in brief
The first draft of the questionnaire was developed from discussions with dementia experts and existing validated questionnaires regarding knowledge, attitude, and competence in dementia care (33–37). These three areas were chosen because of their relatedness since knowledge is suggested to be a predictor of attitude and competence (36,38).To determine face and content validity, we pilot tested the first drafts with the inclusion of participants similar to the target population in the study in a preliminary pilot test (n=16) and a subsequent pilot test (n=32), which resulted in a refinement and rewording of items. The pilot tests included interviews and written comments from the participants. The next stage of the validation procedure consisted of a field test with 106 respondents, also similar to the target population of the study. To refine validity, we conducted cognitive interviews with five participants in addition to the distributed field-test questionnaires (39). This stage aimed at determining the psychometric properties of the instrument and included the assessment of test- retest results through the calculation of Intra-Class-Correlation. Further, internal consistency was calculated using Cronbach’s alpha coefficient with acceptable results from 0.68 – 0.92. This created evidence for inter
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correlational components of the scale (40,41). Additionally, floor and ceiling effects were examined (42,43) presenting a tendency toward ceiling effects of a few knowledge items. Based on the above-mentioned examinations, necessary revisions were made.
Instrument
The questionnaire included a total of 58 items. A 10-item introduction and demographic section to provide detailed information on respondents including their age, gender, profession, department, seniority and 1 item regarding previous knowledge about dementia as well as 5 items regarding education intervention adherence.
The outcome variables in the survey were divided into three sections (knowledge, attitude, and competence) and addressed different aspects of dementia, dementia care, and treatment. Knowledge items (n=16) were assigned a score of 027 with 1 point for each correct answer and were assessed on dichotomy and multiple- choice scales. Knowledge items included e.g. ‘The number of people with dementia is expected to decrease in the future in Denmark,’ ‘Dementia is caused by physical changes in the brain,’ ‘People with dementia can experience difficulties in expressing themselves in words.’ Attitude items (n=11) included statements to which the participants rated there agreement with, such as ‘People with dementia notice if you are kind to them,’ ‘It makes no sense to try to communicate with a person with dementia.’ Competence items (n=11) included statements about how well the participants felt that they could manage different tasks e.g. ‘Understand the way people with dementia behave.’ Manage challenged behavior from a person with dementia,’ and
‘Communicate with a person with dementia who is not able to express herself in words.’ Attitude and competence scores were measured on a 5-point Likert scale with anchored ratings with possible scores from 1-
5 and possible total scores ranging from 1155 in each section. An overall increase of all items post intervention indicates a positive outcome of the education intervention. Lastly, the questionnaire contained 4 closing items e.g. ‘How did you perceive the clarity of the questions.’
Analysis
The non-normality of scores and the ordinal scales made non-parametric methods necessary. The guiding research question was: What is the impact of a dementia education initiative on general hospital staffs’ knowledge, attitude and competence? The Wilcoxon signed-rank test was used to test differences in median scores of total knowledge, total attitude, and total competence between pre-intervention and one-month post-
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intervention and between pre-intervention and five-month post-intervention. Additionally, Inter Quartile
Ranges (IQR) were calculated. P-values less than or equal to 0.05 were considered statistically significant. To detect whether there were any differences between groups, we sorted all professions into groups of authorized and non-authorized health professionals (Law of Authorization (44). Data were collected and managed using
REDCap electronic data capture tools hosted at Odense Patient data Explorative Network (OPEN) (45) and exported to Stata version 16.0 (46) for analysis purposes.
Qualitative phase
This phase aimed at exploring how general hospital staff experience the impact of the dementia education intervention.
Participants
Invitations to participate in the qualitative phase targeted all staffing groups who had responded to the three repeated questionnaires n=468. All staffing groups were considered as suitable participants due to the overall aim of the dementia education intervention of improving basic competencies and the quantitative results to be explored.
Data collection and sampling
Purposeful sampling with maximum variation guided the sampling among hospital staff who had completed the one-day education course and the repeated measure survey. Due to the increased workload during the
Covid-19 pandemic, two exceptions were made: participants 13 and 16 were dementia specialists who had extensive knowledge about dementia. The maximum variation strategy was determined by the results from the quantitative phase in order to explain the measured effect by including authorized and non-authorized staffing groups, as the demographics and the statistical results indicated the same tendencies in these groups over time.
Participants were recruited with the help of dementia specialists and leaders in the departments.
Interviews
Semi-structured in-depth interviews were used as the data collection method as described by Kvale and
Brinkmann (47). An interview guide was developed based on the aim of this mixed methods study and the
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results from the first phase in order to elaborate on how general hospital staff experience the impact of the education intervention, including the one-day course, E-learning, and PBL sessions. Introductory interview questions included: “Can you tell me about what you have learned about dementia during the education intervention at the hospital?” and “How would you describe your own and the collective approach to patients with dementia before the education intervention compared to after the intervention?” These questions were followed by more specific questions aimed at collecting data that could help explain the quantitative results.
Examples of such questions were: “Did you experience an increase in knowledge following your participation in the education intervention?” followed by questions such as “Can you describe in more detail, what facilitated this change?”
The first interview was conducted face-to-face and the remaining as telephone interviews. The interviews were planned in accordance with workload and variable working hours from March 2020 to May 2020. The duration of the interviews ranged from 14 to 32 min. The interviews were audio recorded and transcribed verbatim by the first author.
Analysis
The analytical approach to the data was guided by thematic analysis (48,49). The analytical process was non- linear and followed six steps: 1) Familiarization involved the reading and rereading of transcripts to obtain familiarity with the content of data; 2) Generating codes included writing initial codes in the margin in all transcripts; 3) Constructing themes involved the systematic division of codes into themes and the drawing of a preliminary thematic map; 4) Reviewing themes entailed a review of the codes and their alignment to the developed themes; 5) Revising and defining themes included an analytical refinement and adjustment of the definitions; and 6) the sixth step embraced the description of the final analysis and thus, the reporting the results (48,49). The first author conducted steps one to three, and all authors discussed the last steps.
Following the explanatory sequential mixed methods design, the analysis was guided by the results identified in the quantitative phase (30); thus, the increase in knowledge, the change in attitude and competence informed the analysis. The guiding research question was: How do general hospital staff experience the impact of a dementia education intervention?
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Ethical considerations
The ethical considerations were guided by the Helsinki Declaration (50) and approved by the Regional Danish
Data Protection Agency (18/14259). All participants were informed about the study and agreed to participate before the data collection. The participants had the opportunity to withdraw at any time upon request.
Results
Quantitative Phase
Of the study sample (n=1107), 860 consented to take part in the study and 11 participants were excluded at pre-intervention (T0) due to missing data. A total of 849 (77%), 618 (56%) and 468 (42%) responded to questionnaires pre-intervention (T0), one-month post-intervention (T1), and five-month post-intervention
(T2), respectively. The distribution of participants is characterized by a dominace of female hospital staff at all measure times (83.6 %, 85 %, 83.5 %). Median age was 48 years at inclusion at T0. The representation from different department sections at the hospital, Surgical, Medical, Para Clinic, and Technical Administrative was equally distributed throughout measures. Participant characteristics are summarized in Table 1.
Table 1: Participant characteristics (quan)* T0, n=849 T1, n=618 T2, n=468 Gender Women 710 (83.6%) 525 (85.0%) 391 (83.5%) Men 139 (16.4%) 93 (15.0%) 77 (16.5%) Age and seniority Age at inclusion, 48.0 [38.0-57.0] 49.0 [39.0-57.0] 50.0 [40.0-57.5] median (IQR) Seniority, 14.0 [7.0-26.0] 15.0 [7.0-27.0] 16.0 [8.0-28.0] median (IQR) Profession Authorized 622 (73.3%) 448 (72.5%) 331 (70.7%) Non-authorized 227 (26.7%) 170 (27.5%) 136 (29.1%) Department Surgical 133 (15.7%) 104 (16.8%) 70 (15.0%) Medical 460 (54.2%) 342 (55.3%) 261 (55.8%) Para clinic 141 (16.6%) 104 (16.8%) 82 (17.5%) Technical or 102 (12.0%) 59 (9.5%) 48 (10.3%) Administrative Extensive knowledge Knowledge from 424 (49.9%) family relations or friendships Intervention adherence
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One-day education, 0 (0.0%) 595 (96.3%) 465 (99.4%) cumulative proportion Online dementia 248 (29.2%) 510 (82.5%) 438 (93.6%) course, cumulative proportion Problem-based 0 (0.0%) 219 (35.4%) 281 (60.0%) learning, cumulative proportion
*Abbreviation: quan: quantitative
The Wilcoxon signed-rank test revealed that knowledge, attitude, and competence score medians from T0 to
T1 and from T0 to T2 increased significantly for all participants following a dementia education intervention.
Correspondingly, this picture was applicable in the groups of authorized and non-authorized health personnel
(Table 2).
Table 2: Results (quan)* T0, ** T1, ** T2, ** Difference P-value*** Difference P-value*** median median median from T0 to from T0 to (IQR) (IQR) (IQR) T1, median T2, median (IQR) (IQR Knowledge (min: 0, max: 27) All health 21 (20- 22 (21- 22 (21- 1 (0-2) <0.001 1 (0-2) <0.001 personnel 22) 23) 23) participants n=849 n=616 n=467 Authorized 21 (20- 22 (22- 23 (21- 1 (0-2) <0.001 1 (0-2) <0.001 23) 23) 24) n=622 n=446 n=330 Non- 20 (18- 22 (21- 22 (20- 1 (0-2) <0.001 1 (0-2.5) <0.001 authorized 22) 23) 23) n=227 n=170 n=136 Attitude (min: 11, max: 55) All health 47 (44- 48 (45- 48 (45- 1 (-1-4) <0.001 1 (-2-4) <0.001 personnel 49) 51) 50) participants n=849 n=616 n=466 Authorized 47 (45- 49 (46- 48 (46- 1 (-1-3) <0.001 1 (-2-3) 0.003 50) 51) 51) n=622 n=446 n=329 Non- 45 (42- 47 (44- 47 (44- 1 (-1-4) <0.001 2 (-1-4) <0.001 authorized 48) 50) 50) n=227 n=170 n=136 Competence (min: 11, max: 55) All health 40 (36- 43 (40- 43 (40- 2 (0-6) <0.001 2 (0-6) <0.001 personnel 43) 44) 44) participants n=849 n=615 n=466 Authorized 41 (37- 43 (41- 44 (41- 2 (0-5) <0.001 2 (0-6) <0.001 44) 45) 45) n=622 n=445 n=329
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Non- 37 (33- 41 (38- 41 (38- 3 (0-7) <0.001 3.5 (0-7) <0.001 authorized 42) 43) 43) n=227 n=170 n=136 ***Wilcoxon signed-rank test. Abbreviations: * quan: quantitative. **T0: pre-intervention, T1: one-month post-intervention, T2: five-month post-intervention
Knowledge score
The knowledge-score (median (IQR)) at T0, T1, and T2 was 21 [20-22], 22 [21-23], and 22 [21-23], respectively. The score increased 1 point between T0 and T1 (p<=0.001) and 1 point between T0 and T2
(p<=0.001). For authorized health personnel, the score was 21 [20-23] for Q1, 22 [22-23] for Q2 and 23 [21-
24] for Q3. The score increased significantly in both groups of authorized and non-authorized health personnel at both time intervals (p<=0.001).
Attitude score
The attitude-score (median (IQR)) at T0, T1, and T2 was 47 [44-49], 48 [45-51], and 48 [45-50], respectively.
The score increased 1 point between T0 and T1 and 1 point between T0 and T2 (p<=0.001). The score increased significantly for both authorized (p<=0.01) as well as non-authorized (p<=0.001) health personnel at both time intervals. The largest increase was seen for non-authorized health personnel from T0 to T2 (Table
2).
Competence score
The competence-score (median (IQR)) at T0, T1, and T2 was 40 [36-43], 43 [40-44], and 43 [40-44], respectively. In the total group the score increased significantly between both time intervals (p<=0.001). For authorized health personnel, the score increased 2 points from T0 to T1 and 2 points from T0 to T2
(p<=0.001). For non-authorized personnel, the increase was 3 points from T0 to T1 and 3.5 points from T0 to
T2 (p<=0.001) (Table 2).
Qualitative Phase
Table 3 describes the demographic characteristics of the participants in the qualitative phase. A total of 16 participants were included in the qualitative phase represented by 9 female and 7 male participants. The
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participants represented the different department sections at the hospital: Surgical, Medical, Para Clinic, and
Technical Administrative and represented a wide variety of professions. The participants had a median age of
49 years and a median seniority of 12 years.
Table 3: Participant characteristics (qual)* Infor Profession Profession Department Sex mant Group 1 Porter Non-authorized Hospital logistics M 2 Nurse Authorized Department of anaesthesiology F 3 Nurse Authorized Orthopeadic department F 4 Nurse Authorized Department of anaesthesiology M 5 Secretary Non-authorized Radiology department F 6 Radiographer Authorized Radiology department M 8 Nurse Authorized Orthopeadic out-patient clinic M 7 Biomedical laboratory scientist Authorized Department of clinical chemistry M 9 Physiotherapist Authorized Rehabilitation F 10 Occupational therapist Authorized Rehabilitation F 11 Consultant Authorized Surgical Department F 12 Ward Physician Authorized Surgical Department F 13 Receptionist Non-authorized Patient Services F 14 Architectural technology and Non-authorized Building and Construction service M construction manager 15 Healthcare assistant Authorized Department of internal medicine F 16 Service assistant/cleaner Non-authorized Hospital services M *Abbreviation: qual: qualitative
Three themes were developed as a result of the analysis of the qualitative data: cumulative wisdom, inter- occupational cooperation, and shared proficiency. These themes explain and elaborate on the quantitative results and are presented below with example quotes.
Cumulative wisdom
An overall element of the participants’ experiences regarding the effect of increased knowledge and the associated changes was centered on the cumulative effect of all staff having increased knowledge about dementia following the education intervention.
A common point in the participants’ experiences of the knowledge gain was that new or refreshed knowledge contributed to a changed approach to patients with dementia because this new knowledge made them feel more capable of acting and reacting appropriately to the specific requirements called for in situations of
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patients with dementia. This was described as an individual gain of importance and an invaluable starting point. One participant expressed:
“I really learned something new and I am now acting in a new way in many situations. For example, the thing about singing was new to me. I didn’t know that.” (Inf 1)
However, the participants often described how they experienced that the knowledge gain was most effective to their approach to patients with dementia when it was brought into a situation that demanded close collaboration with other staffing groups, whereas an improvement of individual knowledge would only make a slight difference. This adds a new dimension to the increase in knowledge about dementia as it was directly associated with a shared frame of reference among staffing groups. This is exemplified in the following quote:
“My knowledge has been refreshed, but what is most valuable is that that we now have a common frame of reference among the departments.” (Inf 2)
This shared frame of reference was highly valued and described as having created a synergic effect, with different professions and staffing groups contributing their own professional perspectives. One participant referred to this:
“And what is particularly valuable is that I can contribute when we work together concerning the patient with dementia. Together, we know more.” (Inf 7)
A dominant element experienced by the participants was that the effect of the education intervention was ascribed to its interdisciplinary focus because it got them committed to using their updated knowledge when collaborating on patients with dementia. The commitment that was established alongside the implementation of the education intervention was described as a foundation for the strengthened growth of cumulative knowledge. The following quotes underpin the experience of commitment as a fundamental element of cumulative knowledge:
“The shared knowledge base facilitates a moving away from a self-oriented way of working because you are more committed.” (Inf 9)
“You are committed to contributing, now that everyone is part of the education intervention and has gained new knowledge. Then you also have to contribute.” (Inf 14)
Inter-occupational cooperation
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An overall pattern that was visible in the participants’ experiences of the changed attitude towards patients with dementia following the education intervention was that this change fostered an inter-occupational cooperation that was described as a common ground from which staffing groups could exchange ideas and experiences in a professional fellowship.
Numerous references were made to this overall pattern, which was described as a disseminated underlying value that served as a determining factor for the way these patients were approached. This is exemplified in the following quotes:
“It is a kind of organizational ethos when the values change. I perceive that the attitude toward these patients has changed and that we are approaching them in a new way.” (Inf 4)
“An altered approach to dementia has been disseminated as a result of the inclusion of all staff.” (inf 13)
A common description regarding this changed approach was that following the interdisciplinary focus in the education intervention, there emerged in clinical situations a commitment to prioritize the individual patient above the task. This was described as a shared responsibility across occupations.
“When everyone has learned the same thing, then it changes something and focal point becomes the patient rather than the specific task to be solved.” (Inf 6)
Additionally, many staff talked about a thorough change toward paying more attention to patients’ preferences and learning a little about the person with dementia in order to better address the person’s needs. One participant said:
“It has changed something in the way we approach patients on their terms.” (Inf 5)
Another strengthened focus reported by participants concerning their experiences of joint professionalism was that the emotional reactions to patients with dementia were replaced with a professional approach. This was exemplified as being less frustrating when patients reacted unpredictably to planned tasks. This change was based on the general sharing of views among staffing groups about the best way to approach the patient. This was expressed as follows:
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“Something has changed in the way we now focus on professionalism rather than emotions, and it is caused by the collegial discussion because we now have a common ground.” (Inf 10)
Despite there being some agreement that certain situations continue to be challenging, some of the participants mentioned a growing shared empathy as a constitutive element of the way the patients with dementia are approached. A consistent point in the participants’ descriptions was that the underlying strengthened focus on dementia at the hospital influenced the mindset and contributed to an increased quality in care and treatment because of the collaborative efforts of all staffing groups. The following quote describes this:
“A common ground has been created. I think that a consistency is guiding the way patients with dementia are approached, no matter what department you are from.” (Inf 12)
Shared proficiency
The qualitative data suggest that the dementia education intervention facilitated a shared pathway in the efforts to improve and maintain competencies towards patients with dementia. Keywords in this consistent element in the participants’ experiences were expressed as increased dialogue and helpfulness between staffing groups with the overall aim of approaching the patient with dementia in the most attentive way.
The participants experiences included a clear tendency to highlight that the education intervention and the focus that followed implied that dialogues about patients with dementia changed their focus and were initiated before the situation to prevent an escalating situation as well as during and after to learn from a shared experience. This is exemplified in the following quotes:
“There is more dialogue about how to plan and I feel that this is a visible result.” (Inf 6)
An effect of the increase of competence scores was visible in the approach to patients with dementia and was mentioned as an effort to reach the individual person behind the patient. This was commented as a result of a committed interdisciplinary dialogue about the patients’ situation:
“We are helping each other to avoid merely doing the usual routines, but instead observing the individual patient.” (Inf 5)
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Another explanation for the increase in competence scores mentioned by several participants was that helping each other was obvious and that this was facilitated by the fact that everyone could help because everyone knew something. This is visible in the following quotes:
“The shared interpersonal understanding facilitates cooperation. Professionals from all disciplines are important in dementia care. I think that we are more aware of that throughout the hospital—that we have all committed ourselves to contributing.” (Inf 10)
This was contrasted to earlier experiences of often feeling alone in handling the patients’ needs, expressed by one participant:
“Previously, you could feel quite alone with these patients, the rule was kind of ‘it’s my patient so I will try to solve it myself,’ but now we are more open to asking for help. Then you can avoid being frustrated and helps to solve things together.” (Inf 5)
The improved interdisciplinary cooperation based on the overall improvement of competencies was described as being a part of a committed community based on the aim of improving hospital stays for patients with dementia. Some participants commented this:
“The interdisciplinary approach is absolutely what facilitated changes. When we move in the same direction, things happen.” (Inf 12)
However, some of the participants expressed a concern regarding how the new shared proficiency pathway would continue to be flourishing. This concern was related to how some of the participants had experienced how an increased focus on quality improvements had concentrated on results from a single measure in order to justify that things had improved. Further, a few participants believed that there was a need for reminding each other among colleagues and across departments and professions that the awareness of working dementia- friendly needs to be continuously nurtured. A participant said:
“So, now the hospital is dementia-friendly, but I think that there is a lot more work to be done.” (Inf 2)
Integration of quantitative and qualitative results
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As an overall result of the integration of quantitative and qualitative results, we illustrate how the significant changes in knowledge, attitude, and competence scores are explained by an improved committed interdisciplinary cooperation around patients with dementia with no differences detected between authorized and non-authorized groups. While the quantitative results provided information about the extent of the impact on scores, the qualitative results confirmed and expanded these results as the integration enhanced an explanatory understanding of the impact of the education intervention. The integrated results are shown in
Figure 2 as a joint display illustrating that the phenomenon of interest: the impact of a dementia education intervention in a general hospital setting can be explained in depth by elaborating the interpretation of numbers with the exploration of participants’ views. The feeling of commitment was mentioned throughout the interviews when the participants’ experiences of the impact were explored and identified as a common frame of reference that strengthened the impact of the education intervention. Within this overall framework, the increase in knowledge was described as a synergic effect that is explained by a shared knowledge base valued over individual knowledge. Additionally, the change in attitude and improvement in competence is explained as a facilitation of an emerging comprehensive inter-occupational cooperation that reflected an increased attention to patients with dementia and an awareness of including the person behind the dementia diagnosis. Besides, this awareness included an on-going nurturing of dementia-friendliness.
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Figure 2: Joint display Domains connecting Quantitative results Qualitative results quan and qual* Knowledge Cumulative wisdom
New and refined knowledge was found
valuable, however, the most valuable aspect of
the increase in knowledge scores was the
creation of a common knowledge base. This
facilitated an inclusive committed contribution
in the cooperation regarding patients with
dementia.
Attitude Inter-occupational cooperation
The changed attitude score was explained as an embedded overall change in attitude towards patients with dementia. This contributed to an inter-occupational cooperation that was present in the clinical situations as a prioritization of person above task.
Competence Shared proficiency
The increase in competence scores was explained and addressed as valuable if these improved competencies were brought into a shared foundation of competencies. To share proficiency was exemplified by helping and guiding each other in the clinical situation with the overall aim of creating individual solutions for the patient with dementia. Mixed methods inference: Integrating quan and qual* The impact on knowledge, attitude, and competence scores from the quantitative results was confirmed and expanded through the qualitative results. The integrated results showed that the education intervention was effective in both authorized and non- authorized staffing groups and seemed to facilitate notable changes for all staffing groups when working together to strengthen person-centeredness. The changes in approach were ascribed to the interdisciplinary focus and the inclusion of all staffing groups, as it established a comprehensive commitment to create careful solutions for patients with dementia as individual persons. The increase in knowledge scores was confirmed and expanded by the qualitative results and was explained as a synergic effect based on a shared knowledge base valued over individual knowledge. Additionally, the change in attitude and improvement in
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competence scores was expanded by the qualitative results and explained by a wide-ranging inter-occupational approach that reflected the increased attention to patients with dementia along with the education intervention and the subsequent activities. *Abbreviation: quan: quantitative, qual: qualitative
Discussion
Our integrative findings suggest that the impact of a large-scale interdisciplinary education intervention with the inclusion of the entire workforce goes beyond the separate effect on specific outcome measures by adding a new dimension: the consistent change in approach is related to a committed interdisciplinary cooperation.
Our results add two notable contributions to the existing knowledge base of dementia education in hospitals:
1. An interdisciplinary approach with the inclusion of all staff members in dementia education
interventions seems to be a prerequisite to creating consistent changes in general hospital settings.
2. The improved interdisciplinary collaboration and overall commitment following a dementia education
intervention seems to facilitate a comprehensive focus on person rather than task.
The interdisciplinary focus in education intervention activities was found to play a pivotal role in terms of a changed approach towards patients with dementia in this current study. This universal point was reflected in the explanations of the increased scores and highlighted the joint accomplishment of changes to be more valuable than the individual/personal gain of the educational initiative.
Though some participants in our study explained the increase in scores as an individual gain from the education intervention, the common frame of reference from the education intervention was expressed as more valuable as it facilitated changes in approach to patients with dementia because of the contribution of all involved staff. This is in line with the findings of Brody and Galvin (23), who argue that if the goal is interprofessional teamwork and the creation of careful solutions for patients with dementia, education initiatives need to be interprofessional rather than parallel training sessions to different staffing groups (23).
This underpins that embedding changes and translating knowledge into the clinical settings go beyond increase in measured scores. Extensively, our results indicate that the interdisciplinary focus was a mediator towards an inclusive learning culture as the contribution of all staff was welcomed and needed if a changed approach was going to succeed. This is further supported in the results of a mixed methods study examining
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an education program to improve dementia care and treatment. These results point to team education as an important element in the construction of collaborative teamwork around patients with dementia and underpin that shared values contribute to changed attitudes and continued improvements in practice (51). Additionally, the results from a qualitative study stress that training is recommended for maintaining an interdisciplinary focus if a change in practice is to be embedded and dementia care is to be enhanced (52). Correspondingly,
Baillie et al. argue that it is possible to embed a cultural change in dementia care following a dementia education that involves the whole workforce because it facilitates shared experiences across professions (53).
The commitment to improve dementia care and treatment was expressed consistently in the participants’ explanations of the increased scores. This commitment to participate in interdisciplinary cooperation was regarded as a unique result of the education intervention as it assisted the setting aside of professional boundaries and replaced it with a culture of helping, guiding, and reminding each other across occupations and seniority. This additional element of commitment of dementia education interventions in hospital settings is also stressed by Petty et al. (54), who found that dementia care and treatment in hospitals requires the incorporation of different levels of seniority and a variety of professions in dementia education planning. They argue that this will be beneficial due to the exchange of knowledge and experience and stress that that this can facilitate discussions and interdisciplinary reflections about dementia-friendly routines (54).
Our integrated results suggest that the interdisciplinary focus in the dementia education intervention facilitated an improved awareness of the person with dementia. The ability to approach and see the person behind the dementia diagnosis was exemplified as being more empathic in that it aimed at accessing and recognizing the patients’ emotional attitude based on the common foundation of increased outcome scores. Results from a qualitative descriptive study of the term ‘dementia-friendly hospital’ support the importance of this finding as these results underpin that seeing the person behind the dementia diagnosis is the key element to dementia friendliness in hospital settings (55). Seeing the person behind the dementia diagnosis is comparable to the pioneer work of Kitwood (56) and the further development of his work around the philosophy of person- centered care for people with dementia (57). This work is the constitutive element in recommendations for person-centered care in health care settings (58). However, a review of qualitative studies confirms that even though agreement exists among health care professionals that a person-centered approach is the best approach
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to caring for patients with dementia, the clinical context complicates its execution (59). The authors stress that the best way to overcome this challenge is to educate using an interdisciplinary approach since education targeted to specific professions makes only a slight difference. Further, a narrow focus on selected professions poses the risk of suspending the opportunity to create an interdisciplinary, person-centered care culture (59).
This supports our finding that the interdisciplinary approach in dementia education intervention can be one key facilitator to improving person-centeredness in hospitals. Thus, our results fill in a gap in evidence regarding how person-centered care approaches can be translated into clinical settings as requested by Fazio et al. (58). With a greater focus on the shared responsibility of prioritizing person over task, our results showed that the improved interdisciplinary cooperation enabled increased scores in knowledge, change in attitude, and improvement in competence to be used as assessable resources in a joint reflexivity. Additionally, this shows that to succeed with dementia education interventions in hospital settings, a commitment to an interdisciplinary pathway is a prerequisite to a continued changed approach. Comparable to this, a systematic review indicates that person-centered care interventions in clinical contexts are a promising line for enhancing person-centered care as long as these interventions go beyond one isolated training intervention and add some continued support and the opportunity to discuss dementia care (60). Additionally, results from a survey study with a focus on person-centered care in hospital settings (7) showed that staff training can improve knowledge and attitude among hospital staff, but that these improvements alone failed to result in increased competencies. The results indicate that education interventions in dementia care and treatment need to have a broad content and focus on both intellectual and attitudinal skills if person-centeredness is to be implemented
(7). This adds support to our findings, which explain the increase in scores with the comprehensive committed cooperation that was manifested following the dementia education intervention as a promising pathway for delivering and jointly nurturing a person-centered approach.
Methodological considerations
An overall strength of our study was the use of a mixed methods approach. The integration of results from the quantitative and the qualitative phases added a nuanced insight into how the impact of a dementia education intervention can be explained and understood, and it underpinned that the examination of educational effects should be accessed from broadly as requested by Abley et al. (20). Limitations in our study included a lower
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response rate in post-intervention measures in the quantitative phase, which is also reposted in similar studies
(61,62). This serves as a validity threat, since we do not know if these participants represented hospital staff with either high or low scores. However, the homogeneity in respondent groups across measure times compensates for this validity threat. Another limitation concerns the included participants in the qualitative phase, as we included two dementia specialists with extensive knowledge about dementia. This decision could have influenced the qualitative results. However, we did not find that their experiences varied compared to those of the participants who had attended the one-day course. The process by which participants were recruited to the qualitative phase adds some further limitations to our study since the use of gatekeepers can result in participant selection bias. The data collection methods also revealed some additional considerations to be elaborated. The quantitative instrument was not able to detect whether there were associations between knowledge, attitude, and competence scores, which could add useful knowledge about how learning outcome was perceived. Moreover, the questionnaire showed some limitations concerning ceiling effects in the validation process. The quantitative results could be influenced if the participants were limited in response options, which might explain the equality of results at T1 and T2. Additionally, the fact that other dementia- friendly initiatives were implemented concurrently with the education intervention may have affected the results. However, the mixed methods approach provided an opportunity to go beyond the ceiling effect with the addition of explanation in the qualitative phase. Moreover, the use of telephone interviews in the qualitative phase requires some additional considerations since this approach could result in the omission of contextual and non-verbal elements in the interview situation (63).
Conclusion and implications
The results of this mixed methods study demonstrated that dementia education interventions can facilitate improvements in knowledge, attitude and competence scores of general hospital staff. However, these improvements do not necessarily lead to changes in approach to patients with dementia. The impact of changes in approach to patients with dementia can be determined by the inclusion of the whole workforce in educational initiatives as this facilitates a comprehensive commitment to interdisciplinary cooperation with regard to person-centeredness.
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Our study adds some future implications to practice concerning dementia education interventions in hospital settings. Interdisciplinary education that focuses on scholastic learning outcomes and practice learning is needed as this approach includes the creation of a common knowledge base as a foundation for acknowledging the contribution of all staffing groups in dementia care and treatment. Further, our study results recommend that dementia education interventions be implemented throughout all hospital departments as this makes the embedding of changes possible.
Our results indicate that there is probably no additional long-term effect of the education intervention on knowledge, attitude, and competence scores comparing median scores at T1 and T2 for all health personnel; however, the qualitative results suggest an embedded impact. Future research is required regarding the sustainable effects of large-scale dementia education interventions. Such research could be conducted as an observational study to explore whether interdisciplinary cooperation is maintained and how the person- centeredness is implemented. In addition, the perspectives of patients and relatives on the effect of educational initiatives are required in future research to assure that important users are included in the descriptions of dementia-friendly person-centeredness.
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Declaration of conflicting interests
The Authors declare that there is no conflict of interest.
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