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Speaking Up for Fundamental Care: A Position Statement from the 2019 International Learning Collaborative (ILC) Meeting, Aalborg, Denmark ForJournal: peerBMJ Open review only Manuscript ID bmjopen-2019-033077.R1

Article Type: Communication

Date Submitted by the 25-Jul-2019 Author:

Complete List of Authors: Kitson, Alison; Flinders University, College of Nursing and Health Sciences Carr, Devin; Michigan Medicine, University Hospital and Frankel Cardiovascular Center Conroy, Tiffany ; Flinders University, College of Nursing and Health Sciences Feo, Rebecca; Flinders University, College of Nursing and Health Sciences Grønkjær, Mette; Aalborg University, Department of Clinical Medicine; Aalborg University Hospital, Clinical Nursing Research Unit Huisman-de Waal, Getty; Radboud Universiteit Jackson, Debra; University of Technology Sydney

Jeffs, Lianne; Sinai Health System, Lunenfeld-Tananbaum Research http://bmjopen.bmj.com/ Institute; University of Toronto, Lawrence S. Bloomberg Faculty of Nursing Merkley, Jane; Sinai Health System; University of Toronto, Lawrence S. Bloomberg Faculty of Nursing Muntlin Athlin, Åsa; Uppsala University; Uppsala University Hospital Parr, Jennifer; Counties Manukau District Health Board Richards, David; University of Exeter, Medical School Sørensen, Erik; Aalborg University Hospital, Clinical Nursing Research Unit; Aalborg University, Department of Clinical Medicine on September 26, 2021 by guest. Protected copyright. Wengström, Yvonne; Karolinska Institutet, Neurobiology Care Science and Society, Nursing

Primary Subject Nursing Heading:

Secondary Subject Heading: Nursing

Health & safety < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Quality in health care < HEALTH SERVICES Keywords: ADMINISTRATION & MANAGEMENT, HEALTH SERVICES ADMINISTRATION & MANAGEMENT

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33 http://bmjopen.bmj.com/ 34 35 36 37 38 39 40

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3 Title page BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 7 8 Title: Speaking Up for Fundamental Care: A Position Statement from the 2019 International Learning 9 10 Collaborative (ILC) Meeting, Aalborg, Denmark 11 12 13 14 Authors 15 16 17 Alison Kitson 18 For peer review only 19 College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia 20 21 22 23 Devin Carr 24 25 26 University Hospital and Frankel Cardiovascular Center, Michigan Medicine, Ann Abor, MI, US 27 28 29 30 Tiffany Conroy 31 32 College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia 33 34 35 36

37 Rebecca Feo http://bmjopen.bmj.com/ 38 39 College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia 40 41 42 43 44 Mette Gronkjaer

45 on September 26, 2021 by guest. Protected copyright. 46 Department of Clinical Medicine, Aalborg University and Clinical Nursing Research Unit, Aalborg 47 48 University Hospital, Aalborg, Denmark 49 50 51 52 53 Getty Huisman-de Waal 54 55 Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, 56 57 The Netherlands 58 59 60

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3 Debra Jackson BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Faculty of Health, University of Technology, Sydney, Australia 7 8 9 10 Lianne Jeffs 11 12 Lunenfeld-Tananbaum Research Institute, Sinai Health System, Toronto, Canada 13 14 15 16 17 Jane Merkley 18 For peer review only 19 Lunenfeld-Tananbaum Research Institute, Sinai Health System, Toronto, Canada 20 21 22 23 Åsa Muntlin Athlin 24 25 26 Department of Emergency Care and Internal Medicine, Uppsala University Hospital, and Department 27 28 of Medical Sciences, Uppsala University, Uppsala, Sweden 29 30 31 32 Jenny Parr 33 34 35 Manukau District Health Board, Auckland, New Zealand 36

37 http://bmjopen.bmj.com/ 38 39 David Richards 40 41 College of Medicine and Health, University of Exeter, Exeter, UK 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 Erik Sørensen 47 48 Aalborg university and Aalborg University Hospital, Aalborg, Denmark 49 50 51 52 53 Yvonne Wengström 54 55 Division of Neurobiology Care Science and Society, Nursing, Karolinska Institutet and 56 57 Radiumhemmet, Karolinska University Hospital, Stockholm, Sweden 58 59 60

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3 Corresponding author BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Name: Alison Kitson 7 8 Postal address: GPO Box 2100, Adelaide 5001, South Australia 9 10 Email: [email protected] 11 12 Telephone: +61 8 82013492 13 14 15 16 17 18 For peer review only 19 Keywords: nursing care, health care quality, patient care 20 21 22 23 24 25 26 Word count (excluding title page, abstract and references): 2436 27 28 29 30 31 32 33 34 35 36

37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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3 Abstract BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Objective. The International Learning Collaborative (ILC) is an organization dedicated to 7 8 understanding why fundamental care fails to be provided in healthcare systems globally. At its 11th 9 10 annual meeting in 2019, nursing leaders from 11 countries, together with patient representatives, 11 12 confirmed that patients’ fundamental care needs are still being ignored and nurses are still afraid to 13 14 ‘speak up’ when these care failures occur. Whilst the ILC’s efforts over the past decade have led to 15 16 17 increased recognition of the importance of fundamental care, it is not enough. To generate practical 18 For peer review only 19 and sustainable solutions to this wicked problem, we need to substantially rethink fundamental care 20 21 and its contribution to patient outcomes and experiences, staff wellbeing, safety and quality, and 22 23 the economic viability of our healthcare systems. 24 25 26 27 28 Key arguments. We present five propositions for radically transforming fundamental care delivery: 29 30 1. Value: Fundamental care must be foundational to all caring activities, systems and 31 32 institutions 33 34 35 2. Talk: Fundamental care must be explicitly articulated in all caring activities, systems and 36

37 institutions http://bmjopen.bmj.com/ 38 39 3. Do: Fundamental care must be explicitly actioned and evaluated in all caring activities, 40 41 systems and institutions 42 43 44 4. Own: Fundamental care must be owned by each individual who delivers care, who works in

45 on September 26, 2021 by guest. Protected copyright. 46 a system that is responsible for care or who works in an institution whose mission is to 47 48 deliver care 49 50 5. Research: Fundamental care must undergo systematic and high-quality investigations to 51 52 53 generate the evidence needed to inform care practices and shape health systems and 54 55 education curricula 56 57 58 59 60

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3 Conclusion. To achieve radical transformation within health systems globally, we must move beyond BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 nursing and ensure all members of the healthcare team – educators, students, consumers, clinicians, 7 8 leaders, researchers, policy-makers, and politicians – value, talk, do, own and research fundamental 9 10 care. It is only through coordinated, collaborative effort that we will, and must, initiate and sustain 11 12 real change. 13 14 15 16 17 18 For peer review only 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36

37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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3 THE ‘WICKED PROBLEM’ BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 One would think, with all the resources health systems continue to put into safety and quality 7 8 initiatives; the implementation of more patient-centred care policies; and the proliferation of 9 10 agencies to regulate and demand better fundamental care for patients (such as the Care Quality 11 12 Commission in the UK), that the tide would be turning. However, this still does not seem to be the 13 14 case, as illustrated by recent reports of continued poor practices.[1] A nurse turning away from a 15 16 17 patient in a single episode of suffering is worrying in itself. However; when this action becomes the 18 For peer review only 19 norm, when it is tolerated and even normalised within teams and institutions, it is necessary to 20 21 reflect critically on why patients are treated in such dehumanising ways.[2] 22 23 24 25 26 The International Learning Collaborative (ILC) is an organisation set up to understand why 27 28 fundamental care fails to be provided in our healthcare systems. At its 11th annual meeting in 2019, 29 30 hosted by Aalborg University and Aalborg University Hospital in Denmark, nursing leaders from 11 31 32 countries, together with patient representatives, confirmed that fundamental care is still failing to 33 34 35 be delivered consistently. Patients are still being ignored and ‘commodified’ and nurses are still 36

37 afraid of ‘speaking up’ when fundamental care failures happen. http://bmjopen.bmj.com/ 38 39 40 41 Personal experiences from nursing colleagues and patients outlining fundamental care breeches 42 43 44 were all too readily available. One nurse recounted her story of being in an Emergency Department

45 on September 26, 2021 by guest. Protected copyright. 46 caring for a patient who needed a CT scan. The patient had to be moved to the X-ray department 47 48 and then to a ward. Before this happened, he was incontinent of urine, soaking the bed and himself. 49 50 The nurse went to find clean linen and pyjamas but was told by the nurse-in-charge that there was 51 52 53 no time to do this as the department would fail its 4-hour discharge target if there was a delay. She 54 55 ignored the instruction from the nurse-in-charge, instead meeting the patient’s fundamental care 56 57 needs, but was made to feel she had done something wrong. Another nurse told the story of her 58 59 father-in-law who lost several kilos in weight over the course of a 10-day stay in hospital. He was 60

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3 discharged frail, weak and vulnerable, with no guidance or support offered to the patient and family. BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Even as a nurse she felt unable to challenge what was happening to him. 7 8 9 10 Patient representatives at the meeting confirmed that these types of dehumanising actions were 11 12 familiar to them. One cancer survivor spoke about having survived but was traumatised by the 13 14 experience of care. Another survivor recounted a conversation with a nurse who, when starting 15 16 17 chemotherapy, said to the patient that if it had been her, she would not have agreed to the 18 For peer review only 19 treatment. These stories resonated with nursing leaders attending the ILC meeting from Australia, 20 21 New Zealand, Japan, Iceland, Norway, Sweden, Denmark, the Netherlands, Canada, the US, and the 22 23 UK. 24 25 26 27 28 This would seem to indicate that we continue to have a problem; not an isolated one, but one that 29 30 has infected every health system globally. It would also seem that we cannot solve it by doing more 31 32 of the same. We need to rethink fundamental care and its contribution to patient and staff 33 34 35 wellbeing, patient safety and quality, and the economic viability of our healthcare systems. 36

37 http://bmjopen.bmj.com/ 38 39 THE PROPOSED SOLUTION… 40 41 In addition to trying to understand the reasons for the fundamental care failures in our healthcare 42 43 44 systems, at the ILC meeting we worked on finding different ways of addressing the issue, moving to

45 on September 26, 2021 by guest. Protected copyright. 46 practical and sustainable solutions. We identified five essential ingredients needed for this 47 48 transformation. These are presented as five propositions: 49 50 1. Value Fundamental Care: Fundamental care is foundational to all caring activities, systems 51 52 53 and institutions 54 55 2. Talk Fundamental Care: Fundamental care must be explicitly articulated in all caring 56 57 activities, systems and institutions 58 59 60

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3 3. Do Fundamental Care: Fundamental care must be explicitly actioned and evaluated in all BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 caring activities, systems and institutions 7 8 4. Own Fundamental Care: Fundamental care must be owned by each individual who delivers 9 10 care, who works in a system that is responsible for care or who works in an institution whose 11 12 mission is to deliver care 13 14 5. Research Fundamental Care: Fundamental care must undergo systematic, high-quality 15 16 17 investigations to generate the evidence needed to inform care practices and shape health 18 For peer review only 19 systems and education curricula 20 21 22 23 1. Value Fundamental Care 24 25 [3] 26 The ILC has been systematically developing definitions around fundamental care and has 27 28 developed an evidence-based framework[4, 5] to help nurses implement fundamental care in a more 29 30 consistent way. The Fundamentals of Care Framework consists of three dimensions: nurse-patient 31 32 relationship; integration of physical, psychosocial and relational elements of care; and consideration 33 34 [5] 35 of the context where that care happens. 36

37 http://bmjopen.bmj.com/ 38 39 Our argument is that regardless of clinical condition, age, acuity, complexity, or care setting, every 40 41 patient will require their fundamental care needs to be assessed and met for them to be safe and to 42 43 44 recover optimally. Current failures in our health systems, including the poor level of remuneration

45 on September 26, 2021 by guest. Protected copyright. 46 for nurses delivering fundamental care, are directly related to the lack of value placed on 47 48 fundamental care as a foundational cornerstone to safety and quality. 49 50 51 52 53 Our proposal is that if executive boards and shareholders in caring and healthcare businesses 54 55 recognised and acknowledged the importance of fundamental care to their financial success, then 56 57 appropriate systems and processes would be put in place, and would be more effective and efficient, 58 59 leading to improved patient outcomes and better staff satisfaction. 60

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3 BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 2. Talk Fundamental Care 7 8 Only after executive leaders and shareholders understand the value of delivering fundamental care 9 10 consistently to all patients (customers) will the language of fundamental care be more readily 11 12 accepted and understood. Commonly, nursing care patient notes are regarded as ‘fluffy notes’, 13 14 rarely referred to by other members of the healthcare team. The ‘knowledge hierarchy’ cascades 15 16 17 from the medical to allied health notes and finally to nursing notes (where some aspects of patients’ 18 For peer review only 19 fundamental care needs are recorded). Consequently, nursing activities tend to relate to risk 20 21 assessments, safety reports or concerns over clinical/medical activity. 22 23 24 25 26 This reality carries with it profound risks both to patients and nurses. When nothing or very little 27 28 about fundamental care is documented in patients’ records then it is impossible to tell what has 29 30 been provided and what has not. Electronic patient records do not solve this problem as they have 31 32 been constructed within the medical hierarchy, hence fundamental care is still invisible. 33 34 35 36

37 Our argument is that by using the core elements of the Fundamentals of Care Framework http://bmjopen.bmj.com/ 38 39 (relationship, integration of care and context), we can generate consistent and meaningful 40 41 summaries of patients’ fundamental care needs. By investing in infrastructure and workflow systems 42 43 44 that comprehensively record patients’ fundamental care needs we will be able to document what

45 on September 26, 2021 by guest. Protected copyright. 46 interventions were undertaken and what impact they had. Then we will be able to teach 47 48 fundamental care more consistently, addressing the ‘theory-practice’ gap that still exists.[6] 49 50 51 52 53 Our proposal is to extend the complex mapping work needed to generate consistent terminology 54 55 around fundamental care and how it is documented, and to invite interdisciplinary colleagues, 56 57 managers and educators to engage in this dialogue. 58 59 60

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3 3. Do Fundamental Care BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Having fundamental care valued by organisations and having done the work around conceptual 7 8 frameworks, terminology and education, we then need to commit to making fundamental care 9 10 happen in a consistent, safe, person-centred way for all patients, independent of care setting. This 11 12 will require a significant shift in culture for many nurses (and every other member of the care team). 13 14 Traditionally, nurses have been rewarded for the speed with which they can accomplish multiple 15 16 17 tasks within rigid timeframes. This ‘task and time’ mentality is the antithesis to the values of 18 For peer review only 19 fundamental care delivery based on relationship and integration.[5] How whole nursing teams (and 20 21 consequently interdisciplinary care teams) must re-design their fundamental care delivery systems 22 23 will be a huge transformational activity. It will require re-design teams to work collaboratively with 24 25 26 nurses, patients and other key stakeholders to turn fundamental caring systems and processes ‘up- 27 28 side-down.’ It will also require the development of standardised ways of measuring fundamental 29 30 care that are embedded in patient records and can inform risk assessments, safety, quality and 31 32 outcome metrics.[7] 33 34 35 36

37 Our argument is that because the ‘task and time’ culture is so deeply embedded in nursing and http://bmjopen.bmj.com/ 38 39 healthcare culture, there needs to be a paradigm shift in work processes related to fundamental 40 41 care delivery. We must move from a ‘task and time’ mentality to a ‘thinking and linking’ mental 42 43 44 model, where registered nurses are able to integrate and coordinate patients’ fundamental care

45 on September 26, 2021 by guest. Protected copyright. 46 with their other care needs across their healthcare experience.[8] 47 48 49 50 Our proposal is to call for collaborating healthcare organisations and universities to work with the 51 52 53 ILC to systematically and rigorously undertake this transformation, generating evidence of impact 54 55 through cultural change and the development of appropriate measures as we work together to 56 57 improve patients’ fundamental care experiences. 58 59 60

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3 4. Own Fundamental Care BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 We have to ask ourselves what would healthcare organisations look like if we put fundamental care 7 8 at the centre of all that we do. Certainly, there are flagship institutions where patients are satisfied 9 10 with their care, where nurses feel happy and fulfilled in their caring roles and where medical and 11 12 quality-of-life outcomes are exemplary. However, these are the exception rather than the rule and 13 14 we need urgently to own the agenda to make fundamental care more visible in our health systems. 15 16 17 There are many practical things we can do such as ensuring fundamental care stories (good and bad) 18 For peer review only 19 are presented to executive board members and to local and national politicians; having fundamental 20 21 care elements explicitly embedded in policies, safety and quality standards, educational standards 22 23 and research tenders; and making sure that nursing leaders globally speak up for fundamental care. 24 25 26 27 28 Yet, we know that in many countries, nursing is facing severe shortages. Nurses are leaving the 29 30 profession, citing burn out and stress as reasons[9] Many talk about the disappointment and 31 32 disillusionment of wanting to care for patients in an holistic way but being unable to do this in the 33 34 35 systems in which they work. Increasingly, international research is identifying that what nurses 36 [10, 11]

37 prioritise is technical care over fundamental care, which leads to missed care or, worst case http://bmjopen.bmj.com/ 38 39 scenario, patient neglect or harm.[12] 40 41 42 43 44 However, workforce shortages cannot be an excuse for failure to address fundamental care needs.

45 on September 26, 2021 by guest. Protected copyright. 46 Neither can the mantra of busyness. Fundamental care is core to nursing values and nursing work. 47 48 Nurses should not be ’too busy’ to deliver it. Devaluing fundamental care and its importance 49 50 devalues nursing and its importance. The notion that core nursing work can be performed by cadres 51 52 53 of lower-educated care assistants is only burying the problem. This might solve a workforce shortage 54 55 but it will increase the risk of harm to our patients. Our recent ILC meeting reflected the concern 56 57 that patients also have with these issues. As stated by one of the patient representatives at the 58 59 60

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3 meeting: more nurses are not the only answer – there needs to be a total redesign of how BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4

5 [see also 1] 6 fundamental care is valued in the system. 7 8 9 10 5. Research Fundamental Care 11 12 Recent reports have identified poor fundamental care practices with care being standardised and 13 14 patients being objectified (see Journal of Clinical Nursing Special Issue on Fundamental Care: The 15 16 17 Last Evidence-free Zone, 2018, https://onlinelibrary.wiley.com/toc/13652702/2018/27/11-12). 18 For peer review only 19 Fundamental care tends to be devalued, and the delivery of safe, person-centred care is challenged. 20 21 Although studies have stressed that nursing care is important for patient safety, recovery and 22 23 positive patient experiences,[13, 14] there is a pressing need to generate studies that demonstrate the 24 25 26 effects and benefits of fundamental care in order to strengthen the evidence base. For example, in a 27 28 recent systematic review,[15] the authors note in their quality appraisal of 149 experimental studies 29 30 into nursing care for nutrition, hygiene, toileting and mobility, that all but 13 studies had significant 31 32 biases and only one had clear practice implications for delivering fundamental care in routine 33 34 35 nursing care environments. 36

37 http://bmjopen.bmj.com/ 38 39 We also need systematically to evaluate the re-design of care delivery systems that put the patient 40 41 and their fundamental care needs at the centre. We need sound economic evaluation of the 42 43 44 investment required and off set that with improvements in health outcomes, throughput, and safety

45 on September 26, 2021 by guest. Protected copyright. 46 and quality indicators. We need to research how we teach fundamental care to our nursing 47 48 students[16-20] and we need to understand how fundamental care is embedded in our policies and 49 50 legislation at national and local levels.[21] 51 52 53 54 55 Our argument is that the current problems healthcare systems are facing could be solved by more 56 57 investment in research programs that investigate how to deliver high-quality fundamental care in 58 59 multiple contexts and how to embed this evidence into future nursing (and other) healthcare 60

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3 curricula. There are some exemplars of this, including the Basic Care Revisited research program in BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4

5 [22] 6 the Netherlands, the fundamental care theme of the National Institute for Health Research’s 7 [23] 8 Collaboration for Leadership in Applied Health Research and Care Wessex, and the pioneering work 9 10 of ILC members (see Journal of Clinical Nursing Special Issue), but this work needs to be scaled up 11 12 and coordinated in a way that will start to offer solutions to healthcare systems sooner rather than 13 14 later. We must stop wasting tax payers’ money in every country by thinking fundamental care 15 16 17 failures can be fixed by (at best) naive or (at worst) knee-jerk policy initiatives that do not address 18 For peer review only 19 the underlying problems. 20 21 22 23 Our proposal is to work with national governments, national and international nursing associations, 24 25 26 healthcare organisations, research funding bodies and universities to generate a collaborative 27 28 research and implementation program on fundamental care. 29 30 31 32 THE CALL TO ACTION 33 34 35 We need to recognise the profoundly complex nature of the challenge facing all healthcare systems 36

37 globally. We need to acknowledge that how we are trying to fix the problem is not working and we http://bmjopen.bmj.com/ 38 39 need to think differently. We need a call to action that connects the valuing, talking, doing, owning 40 41 and researching of fundamental care. 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 Whilst the ILC has grown in recent years, now totalling more than 200 members from 21 countries, 47 48 and making significant inroads, it is clear we cannot do it alone. And whilst other commentators 49 50 have identified the need for action around ‘reconciliation, refocus and research’[1, p.151] on 51 52 53 fundamental care, we need a more concerted, explicit approach. 54 55 56 57 For the Call to Action to work we must move beyond nursing and involve all members of the 58 59 healthcare team: educators; students; consumers; clinicians; executives, managers and leaders; 60

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3 researchers; policy-makers; the general public and politicians. We must all work together to initiate BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 and sustain real change and must do so in a coordinated, collaborative way. 7 8 9 10 Our proposal therefore is precisely the Call to Action for Fundamental Care. 11 12 13 14 If you want to Value, Talk, Do, Own and Research Fundamental Care, please contact us at 15 16 17 [email protected] or https://intlearningcollab.org/ 18 For peer review only 19 20 21 Contributorship statement 22 23 AK, DC, TC, RF, MG, GH, DJ, JP, ES and YW all made substantial contributions to the conception and 24 25 26 design of the manuscript and its central argument during the ILC 2019 meeting. 27 28 AK drafted the initial manuscript. 29 30 AK, DC, RF, MG, GH, DJ, LJ, JM, AMA, DR, ES and YW all contributed to drafting of the manuscript and 31 32 critical revision of its intellectual content. 33 34 35 AK, DC, TC, RF, MG, GH, DJ, LJ, JM, AMA, JP, DR, ES and YW all approved the manuscript for 36

37 publication and agreed to be accountable for all aspects of the work, including ensuring that http://bmjopen.bmj.com/ 38 39 questions related to the accuracy or integrity of any part of the work are appropriately investigated 40 41 and resolved. 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 Competing interests 47 48 None declared 49 50 51 52 53 Funding 54 55 The authors have not declared a specific grant for this research from any funding agency in the 56 57 public, commercial or not-for-profit sectors. 58 59 60

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3 References BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 1. Richards DA, Borglin G. ‘Shitty nursing’ – The new normal? Int J Nurs Stud2019;91:148-52. 7 8 2. Hutchinson M, Jackson D. Troubling fragments and small stories: An analysis of public 9 10 commentary on nursing through a web blog. Collegian2014;21:81-8. 11 12 3. Feo R, Conroy T, Jangland E, et al. Towards a standardised definition for fundamental care: A 13 14 modified Delphi study. J Clin Nurs2018;27:2285-99. 15 16 17 4. Feo R, Conroy T, Alderman J, et al. Implementing fundamental care in clinical practice. Nurs 18 For peer review only 19 Stand2017;31:52-62. 20 21 5. Kitson A, Conroy T, Kuluski K, et al. 2013. Reclaiming and redefining the Fundamentals of Care: 22 23 Nursing's response to meeting patients' basic human needs. Adelaide, South Australia: School of 24 25 26 Nursing, The University of Adelaide. 27 28 6. MacMillan K. The hidden curriculum: What are we actually teaching about the fundamentals of 29 30 care? Can J Nurs Leadersh2016;26:37-46. 31 32 7. Jeffs L, Muntlin Athlin A, Needleman J, et al. Building the foundation to generate a fundamental 33 34 35 care standardised data set. J Clin Nurs2018;27:2481-8. 36

37 8. Kitson A, Muntlin Athlin Å, Conroy T. Anything but Basic: Nursing's Challenge in Meeting Patients' http://bmjopen.bmj.com/ 38 39 Fundamental Care Needs. J Nurs Scholarsh2014;46:331-9. 40 41 9. Sasso L, Bagnasco A, Catania G, et al. Push and pull factors of nurses' intention to leave. J Nurs 42 43 44 Manage2019;27:946-54.

45 on September 26, 2021 by guest. Protected copyright. 46 10. Mandal L, Seethalakshmi A. Experience of prioritizing in nursing care in India: A qualitative study. 47 48 Indian Journal of Public Health Research and Development2019;10:103-7. 49 50 11. Jones TL, Hamilton P, Murry N. Unfinished nursing care, missed care, and implicitly rationed care: 51 52 53 State of the science review. Int J Nurs Stud2015;52:1121-37. 54 55 12. Gillespie A, Reader TW. Patient-Centered Insights: Using Health Care Complaints to Reveal Hot 56 57 Spots and Blind Spots in Quality and Safety. Milbank Q2018;96:530-67. 58 59 60

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3 13. Griffiths P, Maruotti A, Recio Saucedo A, et al. Nurse staffing, nursing assistants and hospital BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 mortality: Retrospective longitudinal cohort study. BMJ Qual Saf2018;28:609-17. 7 8 14. Aiken LH, Sloane D, Griffiths P, et al. Nursing skill mix in European hospitals: Cross-sectional study 9 10 of the association with mortality, patient ratings, and quality of care. BMJ Qual Saf2017;26:559-68. 11 12 15. Richards DA, Hilli A, Pentecost C, et al. Fundamental nursing care: A systematic review of the 13 14 evidence on the effect of nursing care interventions for nutrition, elimination, mobility and hygiene. 15 16 17 J Clin Nurs2018;27:2179-88. 18 For peer review only 19 16. Jangland E, Mirza N, Conroy T, et al. Nursing Students’ understanding of the Fundamentals of 20 21 Care: A cross-sectional study in five countries. J Clin Nurs2018;27:2460-72. 22 23 17. Feo R, Donnelly F, Frensham L, et al. Embedding fundamental care in the pre-registration nursing 24 25 26 curriculum: Results from a pilot study. Nurse Educ Pract2018;31:20-8. 27 28 18. Feo R, Frensham L, Conroy T, et al. "It's just common sense": Preconceptions and myths 29 30 regarding fundamental care. Nurse Educ Pract2019;36:82-4. 31 32 19. Huisman G, Feo R, Vermeulen H, et al. Students’ perspectives on basic nursing care education. J 33 34 35 Clin Nurs2018;27:2450-9. 36

37 20. Alderman J, Kastelein C, Feo R, et al. Prioritizing the fundamentals of care within pre-licensure http://bmjopen.bmj.com/ 38 39 nursing curriculum. Journal of Nursing Education2018;57. 40 41 21. Parr JM, Bell J, Koziol-McLain J. Evaluating fundamentals of care: The development of a unit-level 42 43 44 quality measurement and improvement programme. J Clin Nurs2018;27:2360-72.

45 on September 26, 2021 by guest. Protected copyright. 46 22. Zwakhalen SMG, Hamers JPH, Metzelthin SF, et al. Basic nursing care: The most provided, the 47 48 least evidence based – A discussion paper. J Clin Nurs2018;27:2496-505. 49 50 23. Ball J, Ballinger C, De longh A, et al. Determining priorities for research to improve fundamental 51 52 53 care on hospital wards. Research Involvement and Engagement2016;2:1-17. 54 55 56 57 58 59 60

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Article Type: Communication

Date Submitted by the 15-Oct-2019 Author:

Jeffs, Lianne; Sinai Health System, Lunenfeld-Tananbaum Research http://bmjopen.bmj.com/ Institute; University of Toronto, Lawrence S. Bloomberg Faculty of Nursing Merkley, Jane; Sinai Health System; University of Toronto, Lawrence S. Bloomberg Faculty of Nursing Muntlin Athlin, Åsa; Uppsala University, Department of Medical Sciences; Uppsala University Hospital, Department of Emergency Care and Internal Medicine Parr, Jennifer; Counties Manukau District Health Board Richards, David; University of Exeter, Medical School on September 26, 2021 by guest. Protected copyright. Sørensen, Erik; Aalborg University Hospital, Clinical Nursing Research Unit; Aalborg University, Department of Clinical Medicine Wengström, Yvonne; Karolinska Institutet, Neurobiology Care Science and Society, Nursing; Karolinska University Hospital, Theme Cancer

Primary Subject Nursing Heading:

Secondary Subject Heading: Nursing

Health & safety < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Quality in health care < HEALTH SERVICES Keywords: ADMINISTRATION & MANAGEMENT, HEALTH SERVICES ADMINISTRATION & MANAGEMENT

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1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32

33 http://bmjopen.bmj.com/ 34 35 36 37 38 39 40

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3 Title page BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 7 8 Title: Speaking Up for Fundamental Care: A Position Statement from the 2019 International Learning 9 10 Collaborative (ILC) Meeting, Aalborg, Denmark 11 12 13 14 Authors 15 16 17 Alison Kitson 18 For peer review only 19 College of Nursing and Health Sciences, Flinders University, Adelaide, Australia 20 21 22 23 Devin Carr 24 25 26 University Hospital and Frankel Cardiovascular Center, Michigan Medicine, Ann Abor, US 27 28 29 30 Tiffany Conroy 31 32 College of Nursing and Health Sciences, Flinders University, Adelaide, Australia 33 34 35 36

37 Rebecca Feo http://bmjopen.bmj.com/ 38 39 College of Nursing and Health Sciences, Flinders University, Adelaide, Australia 40 41 42 43 44 Mette Grønkjær

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3 Debra Jackson BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Faculty of Health, University of Technology Sydney, Sydney, Australia 7 8 9 10 Lianne Jeffs 11 12 Lunenfeld-Tananbaum Research Institute, Sinai Health System, Toronto, Canada 13 14 15 16 17 Jane Merkley 18 For peer review only 19 Lunenfeld-Tananbaum Research Institute, Sinai Health System, Toronto, Canada 20 21 22 23 Åsa Muntlin Athlin 24 25 26 Department of Emergency Care and Internal Medicine, Uppsala University Hospital, and Department 27 28 of Medical Sciences, Uppsala University, Uppsala, Sweden; College of Nursing and Health Sciences, 29 30 Flinders University, Adelaide, Australia 31 32 33 34 35 Jenny Parr 36

37 Counties Manukau District Health Board, Auckland, New Zealand http://bmjopen.bmj.com/ 38 39 40 41 David A Richards 42 43 44 College of Medicine and Health, University of Exeter, Exeter, UK

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 Erik Elgaard Sørensen 49 50 Department of Clinical Medicine, Aalborg University and Clinical Nursing Research Unit, Aalborg 51 52 53 University Hospital, Aalborg, Denmark 54 55 56 57 Yvonne Wengström 58 59 60

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3 Division of Neurobiology Care Science and Society, Nursing, Karolinska Institutet and Theme Cancer, BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Karolinska University Hospital, Stockholm, Sweden 7 8 9 10 Corresponding author 11 12 Name: Alison Kitson 13 14 Postal address: GPO Box 2100, Adelaide 5001, South Australia 15 16 17 Email: [email protected] 18 For peer review only 19 Telephone: +61 8 82013492 20 21 22 23 24 25 26 Keywords: nursing care, health care quality, patient care 27 28 29 30 31 32 Word count (excluding title page, abstract and references): 2822 33 34 35 36

37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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3 Abstract BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Objective. The International Learning Collaborative (ILC) is an organization dedicated to 7 8 understanding why fundamental care, the care required by all patients regardless of clinical 9 10 condition, fails to be provided in healthcare systems globally. At its 11th annual meeting in 2019, 11 12 nursing leaders from 11 countries, together with patient representatives, confirmed that patients’ 13 14 fundamental care needs are still being ignored and nurses are still afraid to ‘speak up’ when these 15 16 17 care failures occur. Whilst the ILC’s efforts over the past decade have led to increased recognition of 18 For peer review only 19 the importance of fundamental care, it is not enough. To generate practical, sustainable solutions, 20 21 we need to substantially rethink fundamental care and its contribution to patient outcomes and 22 23 experiences, staff wellbeing, safety and quality, and the economic viability of healthcare systems. 24 25 26 27 28 Key arguments. We present five propositions for radically transforming fundamental care delivery: 29 30 1. Value: Fundamental care must be foundational to all caring activities, systems and 31 32 institutions 33 34 35 2. Talk: Fundamental care must be explicitly articulated in all caring activities, systems and 36

45 on September 26, 2021 by guest. Protected copyright. 46 system that is responsible for care or works in an institution whose mission is to deliver care 47 48 5. Research: Fundamental care must undergo systematic and high-quality investigations to 49 50 generate the evidence needed to inform care practices and shape health systems and 51 52 53 education curricula 54 55 56 57 Conclusion. For radical transformation within health systems globally, we must move beyond 58 59 nursing and ensure all members of the healthcare team – educators, students, consumers, clinicians, 60

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3 leaders, researchers, policy-makers, and politicians – value, talk, do, own and research fundamental BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 care. It is only through coordinated, collaborative effort that we will, and must, achieve real change. 7 8 9 10 11 12 13 14 15 16 17 18 For peer review only 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36

37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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3 THE ‘WICKED PROBLEM’ BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 One would think, with all the resources health systems continue to put into safety and quality 7 8 initiatives; the implementation of more person-centred care policies; and the proliferation of 9 10 agencies to regulate and demand better fundamental care for patients (e.g., Care Quality 11 12 Commission in the UK, US Agency for Healthcare Research and Quality, and Australian Commission 13 14 on Safety and Quality in Health Care), that the tide would be turning. However, this does not seem 15 16 [1] 17 to be the case, as illustrated by recent reports of continued poor practices. A nurse turning away 18 For peer review only 19 from a patient in a single episode of suffering is worrying in itself. However; when this action 20 21 becomes the norm, when it is tolerated and even normalised within teams and institutions, it is 22 23 necessary to reflect critically on why patients are treated in such dehumanising ways,[2] and what 24 25 26 can be done to ensure patients receive safe, dignified care for their fundamental needs. 27 28 29 30 The International Learning Collaborative (ILC) is an organisation set up to understand why 31 32 fundamental care fails to be provided in our healthcare systems. At its 11th annual meeting in 2019, 33 34 35 hosted by Aalborg University and Aalborg University Hospital in Denmark, nursing leaders from 11 36

37 countries, together with patient representatives, confirmed that fundamental care is still failing to http://bmjopen.bmj.com/ 38 39 be delivered consistently. Patients are still being ignored and ‘commodified’ and nurses are still 40 41 afraid of ‘speaking up’ when fundamental care failures happen. 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 Personal experiences from nursing colleagues and patients outlining fundamental care breeches 47 48 were all too readily available. One nurse recounted her story of being in an Emergency Department 49 50 caring for a patient who needed a CT scan. The patient had to be moved to the X-ray department 51 52 53 and then to a ward. Before this happened, the patient was incontinent of urine, soaking the bed and 54 55 himself. The nurse went to find clean linen and pyjamas but was told by the nurse-in-charge that 56 57 there was no time to do this as the department would fail its 4-hour discharge target if there was a 58 59 delay. The nurse ignored the instruction from the nurse-in-charge, instead meeting the patient’s 60

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3 fundamental care needs, but was made to feel she had done something wrong. Another nurse told BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 the story of her father-in-law who lost several kilos in weight over the course of a 10-day hospital 7 8 stay. He was discharged frail, weak and vulnerable, with no guidance or support offered to the 9 10 patient and family. Even as a nurse, she felt unable to challenge what was happening to him. 11 12 13 14 Patient representatives at the meeting confirmed that these types of dehumanising actions were 15 16 17 familiar to them. One cancer survivor spoke about having survived but was traumatised by the 18 For peer review only 19 experience of care. Another survivor recounted a conversation with a nurse who said to the patient, 20 21 when about to start chemotherapy, that if it had been her, she would not have agreed to the 22 23 treatment. These stories resonated with nursing leaders attending the ILC meeting from Australia, 24 25 26 New Zealand, Japan, Iceland, Norway, Sweden, Denmark, the Netherlands, Canada, the US, and the 27 28 UK. These stories are also strongly supported by existing empirical evidence, spanning more than a 29 30 decade of research, regarding patients’ views and experiences of care across a range of healthcare 31 32 settings and systems.[3, 4] This research demonstrates the central importance that patients place on 33 34 35 their relationships with care providers, and the need for nurses to display not only technical 36

37 competence in relation to physical aspects of healthcare but also relational competence, where http://bmjopen.bmj.com/ 38 39 patients’ psychosocial needs are integrated and addressed in every episode of care.[5-12] 40 41 42 43 44 This existing evidence – both empirical and anecdotal – would seem to indicate that we continue to

45 on September 26, 2021 by guest. Protected copyright. 46 have a problem; not an isolated one, but one that has infected every health system globally. It would 47 48 also seem that we cannot solve it by doing more of the same. We need to rethink fundamental care 49 50 and its contribution to patient and staff wellbeing, patient safety and quality, and the economic 51 52 53 viability of our healthcare systems. 54 55 56 57 THE PROPOSED SOLUTION… 58 59 60

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3 In addition to trying to understand the reasons for the fundamental care failures in our healthcare BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 systems, at the 2019 ILC meeting we worked on finding different ways of addressing the issue, 7 8 moving to practical and sustainable solutions. We identified five essential ingredients needed for 9 10 this transformation. These are presented as five propositions: 11 12 1. Value Fundamental Care: Fundamental care must be foundational to all caring activities, 13 14 systems and institutions 15 16 17 2. Talk Fundamental Care: Fundamental care must be explicitly articulated in all caring 18 For peer review only 19 activities, systems and institutions 20 21 3. Do Fundamental Care: Fundamental care must be explicitly actioned and evaluated in all 22 23 caring activities, systems and institutions 24 25 26 4. Own Fundamental Care: Fundamental care must be owned by each individual who delivers 27 28 care, who works in a system that is responsible for care or who works in an institution whose 29 30 mission is to deliver care 31 32 5. Research Fundamental Care: Fundamental care must undergo systematic, high-quality 33 34 35 investigations to generate the evidence needed to inform care practices and shape health 36

37 systems and education curricula http://bmjopen.bmj.com/ 38 39 40 41 1. Value Fundamental Care 42

43 [13] 44 The ILC has been systematically developing definitions around fundamental care and has

45 on September 26, 2021 by guest. Protected copyright. 46 developed an evidence-based framework[14, 15] to help nurses implement fundamental care in a more 47 48 consistent way. The Fundamentals of Care Framework consists of three core dimensions. These are: 49 50 1) the development of a positive, trusting relationship between the nurse (or other care provider) 51 52 53 and patient; 2) integrating and attending to, in every episode of care, a patient’s physical (e.g., 54 55 nutrition), psychosocial (e.g., dignity) and relational needs (e.g., empathy); and 3) being cognizant of 56 57 how the context in which care takes place can facilitate or hinder the accomplishment of the first 58 59 two activities, working to mitigate or enhance these impacts where possible.[15] 60

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3 BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 Our argument is that regardless of clinical condition, age, acuity, complexity, or care setting, every 7 8 patient will require their fundamental care needs to be assessed and met for them to be safe and to 9 10 recover optimally. Current failures in our health systems, including the poor level of remuneration 11 12 for nurses delivering fundamental care, are directly related to the lack of value placed on 13 14 fundamental care as a foundational cornerstone to safety and quality. 15 16 17 18 For peer review only 19 Our proposal is that if executive boards and shareholders in caring and healthcare businesses 20 21 recognised and acknowledged the importance of fundamental care to their financial success, then 22 23 appropriate systems and processes would be put in place, and would be more effective and efficient, 24 25 26 leading to improved patient outcomes and better staff satisfaction. 27 28 29 30 2. Talk Fundamental Care 31 32 Only after executive leaders and shareholders understand the value of delivering fundamental care 33 34 35 consistently to all patients (customers) will the language of fundamental care be more readily 36

37 accepted and understood. Commonly, nursing care patient notes are regarded as ‘fluffy notes’, http://bmjopen.bmj.com/ 38 39 rarely referred to by other members of the healthcare team.[16] The ‘knowledge hierarchy’ cascades 40 41 from the medical to allied health notes and finally to nursing notes (where some aspects of patients’ 42 43 44 fundamental care needs are recorded). Consequently, nursing activities tend to relate to risk

45 on September 26, 2021 by guest. Protected copyright. 46 assessments, safety reports or concerns over clinical/medical activity. 47 48 49 50 This reality carries with it profound risks to both patients and nurses. When nothing or very little 51 52 53 about fundamental care is documented in patients’ records, it is impossible to tell what has been 54 55 provided and what has not. Electronic patient records do not solve this problem as they have been 56 57 constructed within the medical hierarchy, hence fundamental care is still invisible. 58 59 60

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3 Our argument is that by using the core dimensions of the Fundamentals of Care Framework BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 (relationship, integration of care and context), we can generate consistent and meaningful 7 8 summaries of patients’ fundamental care needs. By investing in infrastructure and workflow systems 9 10 that comprehensively record these needs, we will be able to document what interventions were 11 12 undertaken and what impact they had. Then we will be able to teach fundamental care more 13 14 consistently, addressing the ever-present ‘theory-practice’ gap.[17] 15 16 17 18 For peer review only 19 Our proposal is to extend the complex mapping work needed to generate consistent terminology 20 21 around fundamental care and how it is documented, and to invite interdisciplinary colleagues, 22 23 managers and educators to engage in this dialogue. 24 25 26 27 28 3. Do Fundamental Care 29 30 Having fundamental care valued by organisations and having done the work around conceptual 31 32 frameworks, terminology and education, we then need to commit to making fundamental care 33 34 35 happen in a consistent, safe, person-centred way for all patients, independent of care setting. This 36

37 will require a significant shift in culture for many nurses (and every other member of the care team). http://bmjopen.bmj.com/ 38 39 Traditionally, nurses have been rewarded for the speed with which they can accomplish multiple 40 41 tasks within rigid timeframes. This ‘task and time’ mentality is the antithesis to the values of 42

43 [15] 44 fundamental care delivery based on relationship and integration of care. How whole nursing

45 on September 26, 2021 by guest. Protected copyright. 46 teams (and consequently interdisciplinary care teams) must re-design their fundamental care 47 48 delivery systems will be a huge transformational activity. It will require re-design teams to work 49 50 collaboratively with nurses, patients, and other key stakeholders to turn fundamental caring systems 51 52 53 and processes ‘up-side-down.’ It will also require the development of standardised ways of 54 55 measuring fundamental care that are embedded in patient records and can inform risk assessments 56 57 and safety, quality and outcome metrics.[18] 58 59 60

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3 Our argument is that because the ‘task and time’ culture is so deeply embedded in nursing and BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 healthcare, there needs to be a paradigm shift in work processes related to fundamental care 7 8 delivery. We must move from a ‘task and time’ mentality to a ‘thinking and linking’ mental model, 9 10 where nurses are able to integrate and coordinate patients’ fundamental and other care needs 11 12 across their healthcare experience.[19] To be effective, this shift must occur at all levels of healthcare 13 14 systems: the micro level (e.g., in nurses’ attitudes, behaviours and everyday interactions with 15 16 17 patients), meso level (e.g., in the culture and policy of a single organization, including at a unit/ward 18 For peer review only 19 level) and macro level (e.g., in national health policies and nursing accreditation standards for clinical 20 21 practice and education). This shift is crucial if healthcare systems worldwide are to achieve the goal 22 23 of person-centred care, which is at risk of becoming merely rhetoric. Delivering high-quality 24 25 26 fundamental care is a key prerequisite for working with patients in a person-centred way. If we are 27 28 to move beyond mere rhetoric, healthcare professionals must have the tools to achieve person- 29 30 centred fundamental care in practice and to move their care delivery from a series of tasks to a 31 32 coordinated, integrated, relationship-centred healthcare encounter. 33 34 35 36

37 Our proposal is to call for collaborating healthcare organisations and universities to work with the http://bmjopen.bmj.com/ 38 39 ILC to systematically and rigorously undertake this transformation, generating evidence of impact 40 41 through cultural change and the development of appropriate measures as we work together to 42 43 44 improve patients’ fundamental care experiences.

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 4. Own Fundamental Care 49 50 We must ask ourselves what would healthcare organisations look like if we put fundamental care at 51 52 53 the centre of all that we do. Certainly, there are flagship institutions where patients are satisfied 54 55 with their care, where nurses feel happy and fulfilled in their caring roles and where medical and 56 57 quality-of-life outcomes are exemplary. However, these are the exception rather than the rule and 58 59 we need urgently to own the agenda to make fundamental care more visible in our health systems. 60

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3 There are many practical things we can do such as ensuring fundamental care stories (good and bad) BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 are presented to executive board members and to local and national politicians; having fundamental 7 8 care explicitly embedded in policies, safety and quality standards, educational standards and 9 10 research tenders; and making sure that nursing leaders globally speak up for fundamental care. 11 12 13 14 Yet, we know that in many countries, nursing is facing severe shortages due to issues such as poor 15 16 17 recruitment into the profession and poor retention during nursing education and early career 18 For peer review only 19 employment; an ageing population, which is creating greater demand for health services; an ageing 20 21 nursing workforce; and strategic understaffing of registered nurses within healthcare systems in a 22 23 bid to reduce healthcare costs.[20-22] Perhaps most worrying, the shortage is also underpinned by 24 25 26 many nurses’ decision to leave the profession, citing burnout, stress, understaffing, high workloads, 27 28 minimal job satisfaction, emotional exhaustion, and poor patient safety as reasons.[23-28] Many 29 30 nurses talk about the disappointment and disillusionment of wanting to care for patients in an 31 32 holistic way but being unable to do this in the systems in which they work.[29] Increasingly, and 33 34 35 perhaps unsurprisingly, international research is identifying that what many nurses prioritise is 36 [30] [30, 31]

37 technical care over fundamental care, which leads to missed care or, worst case scenario, http://bmjopen.bmj.com/ 38 39 patient neglect or harm.[32-34] 40 41 42 43 44 However, workforce shortages cannot be an excuse for failure to address fundamental care needs.

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3 meeting: more nurses are not the only answer – there needs to be a total redesign of how BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4

5 [see also 1] 6 fundamental care is valued in the system. 7 8 9 10 5. Research Fundamental Care 11 12 Recent reports have identified poor fundamental care practices with care being standardised and 13 14 patients being objectified (see Journal of Clinical Nursing Special Issue on Fundamental Care: The 15 16 17 Last Evidence-free Zone, 2018, https://onlinelibrary.wiley.com/toc/13652702/2018/27/11-12). 18 For peer review only 19 Fundamental care tends to be devalued, and the delivery of safe, person-centred care is 20 21 challenged.[35] Although studies have stressed that nursing care is important for patient safety, 22 23 recovery and positive patient experiences,[36, 37] there is a pressing need to generate studies that 24 25 26 demonstrate the benefits of fundamental care in order to strengthen the evidence base. For 27 28 example, in a recent systematic review,[38] the authors note in their quality appraisal of 149 29 30 experimental studies into nursing care for the fundamentals of nutrition, hygiene, toileting and 31 32 mobility, that all but 13 studies had significant biases and only one had clear practice implications for 33 34 35 delivering fundamental care in routine nursing care environments. 36

45 on September 26, 2021 by guest. Protected copyright. 46 and quality indicators. We need to research how we teach fundamental care to nursing students[39- 47 48 43] and we need to understand how fundamental care is embedded in policies and legislation at 49 50 national and local levels.[44] 51 52 53 54 55 Our argument is that the current problems healthcare systems are facing could be solved by more 56 57 investment in research programs that investigate how to deliver high-quality fundamental care in 58 59 multiple contexts and how to embed this evidence into nursing (and other) healthcare curricula. 60

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3 There are some exemplars of this, including the Basic Care Revisited research program in the BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4

5 [45] 6 Netherlands, the fundamental care theme of the National Institute for Health Research 7 [46] 8 Collaboration for Leadership in Applied Health Research and Care Wessex, and the pioneering work 9 10 of ILC members (see Journal of Clinical Nursing Special Issue), but this work needs to be scaled up 11 12 and coordinated in a way that will start to offer solutions to healthcare systems sooner rather than 13 14 later. We must stop wasting tax payers’ money in every country by thinking fundamental care 15 16 17 failures can be fixed by (at best) naive or (at worst) knee-jerk policy initiatives that do not address 18 For peer review only 19 the underlying problems. 20 21 22 23 Our proposal is to work with national governments, healthcare organisations, research funding 24 25 26 bodies, universities, and national and international nursing associations, to generate a collaborative 27 28 research and implementation program on fundamental care. 29 30 31 32 THE CALL TO ACTION 33 34 35 We need to recognise the profoundly complex nature of the challenge facing all healthcare systems 36

45 on September 26, 2021 by guest. Protected copyright. 46 Whilst the ILC has grown in recent years, now totalling more than 240 members from 22 countries, 47 48 and making significant inroads, it is clear we cannot do it alone. And whilst other commentators 49 50 have identified the need for action around ‘reconciliation, refocus and research’[1, p.151] on 51 52 53 fundamental care, we need a more concerted, explicit approach. 54 55 56 57 For the Call to Action to work we must move beyond nursing and involve all members of the 58 59 healthcare team: educators; students; consumers; clinicians; executives, managers and leaders; 60

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3 Acknowledgements BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 The authors would like to thank the patient representatives at ILC 2019 – Morten Klessen and 7 8 Birgitte Schouw Pedersen – for sharing their experiences. 9 10 11 12 13 14 15 16 17 18 For peer review only 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36

37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44

45 on September 26, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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3 References BMJ Open: first published as 10.1136/bmjopen-2019-033077 on 9 December 2019. Downloaded from 4 5 6 1. Richards DA, Borglin G. ‘Shitty nursing’ – The new normal? Int J Nurs Stud2019;91:148-52. 7 8 2. Hutchinson M, Jackson D. Troubling fragments and small stories: An analysis of public 9 10 commentary on nursing through a web blog. Collegian2014;21:81-8. 11 12 13 3. Jangland E, Kitson A, Muntlin Athlin Å. Patients with acute abdominal pain describe their 14 15 experiences of fundamental care across the acute care episode: A multi-stage qualitative 16 17 18 case study. J Adv NursFor2016;72:791-801. peer review only 19 20 4. Blakey E, Jackson D, Walthall H, et al. What is the experience of being readmitted to 21 22 23 hospital for people 65 years and over? A review of the literature. Contemp 24 25 Nurse2017;53:698-712. 26 27 28 5. Feo R, Donnelly F, Muntlin Athlin A, et al. Providing high-quality fundamental care for 29 30 patients with acute abdominal pain: A qualitative study of patients’ experiences in acute 31 32 care. J Health Organ Manag2019;33:110-23. 33 34 35 6. Corbin J. Is caring a lost art in nursing? Int J Nurs Stud2008;45:163-5. 36

37 7. Bridges J, Flatley M, Meyer J. Older people's and relatives' experiences in acute care http://bmjopen.bmj.com/ 38 39 40 settings: Systematic review and synthesis of qualitative studies. Int J Nurs Stud2010;47:89- 41 42 107. 43 44 8. Kitson A, Dow C, Calabrese JD, et al. Stroke survivors' experiences of the fundamentals of 45 on September 26, 2021 by guest. Protected copyright. 46 47 care: A qualitative analysis. Int J Nurs Stud2013;50:392-403. 48 49 50 9. Kuluski K, Hoang SN, Schaink AK, et al. The care delivery experience of hospitalized 51 52 patients with complex chronic disease. Health Expectations2013;16:e111-e23. 53 54 10. Robert G, Cornwell J, Brearly S, et al. 2011. What matters to patients? Developing the 55 56 57 evidence base for measuring and improving patient experience. . Coventry, UK: University of 58 59 Warwick. 60

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