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Mealtimes and Food for People with Profound Intellectual and Multiple Disabilities and Dysphagia: Understanding the lived experience of family carers Hannah Crawford Thesis submitted for the degree of Doctor of Philosophy School of Health in Social Science The University of Edinburgh September 2015 1 2 Abstract This study aims to develop an understanding of the lived experience of family carers of people with PIMD and dysphagia, in relation to mealtimes and food. Policy in recent years has begun to address the inequalities faced by people with learning disabilities and it is striving to improve their lives and the services offered to them. People with profound intellectual and multiple disabilities (PIMD) often have additional eating and drinking difficulties (dysphagia). People with dysphagia require ongoing support and guidance, to maximize their health, specifically their nutrition and hydration. In order to ensure that this support is appropriate, useful and sensitive to the needs of individuals and their families, it is important to try and view mealtimes through the eyes of these individuals and their families. The aims of this study emerged from observations made during my clinical work as a Speech & Language Therapist (SLT) and from engaging in discussion with family carers. In particular it has become increasingly clear from clinical practice that family carers often have different points of view about their son or daughter with profound intellectual and multiple disabilities, than those of professionals. These different points of view are often not clearly articulated by carers or professionals, and clinical interventions may become marked with conflict. This study is sited within a mental health and learning disability NHS trust in the north east of England. It utilises a phenomenological methodology and employs 3 mixed methods to obtain data. Data collection took place between June 2013 and August 2014. Medical descriptions do not capture how it feels to live with impairment and resulting disability. Only when we examine this and allow individuals to tell their stories, as experts in their experiences, can we understand and offer support accordingly and ensure more functional and beneficial interactions and interventions. Findings are presented around four themes – the meaning of food and mealtimes, relationships, roles within the family and challenges. Findings are discussed in relation to the existing literature and recommendations are made for practice and for future research. During this study the adult child is mainly referred to as the ‘child’. For clarity, this is not in any way meant to convey the individual’s presentation as having PIMD as akin to being a child. The term is used to represent the relationship between the parents and the child. Despite the fact that the individuals are adults, they are still the children of the parents, and the relationship is a parent-son/daughter relationship. For brevity the term ‘child’ is used in preference to ‘adult child’. The use of the term has been agreed with the parents participating in the study. All names are assumed and have been chosen by the participants. 4 In the course of this thesis the direct giving of food to the individuals with disabilities is termed ‘feeding’. I acknowledge this term may be associated with potentially negative connotations. The term ‘feeding’ has been used because it is the term used widely in the literature, because it was used by the family carers in their narratives and because there is no other suitable substitute which adequately describes the direct provision of food from one person in to the mouth of another. 5 6 Lay summary This study aims to develop an understanding of the lived experience of family carers of people with PIMD and dysphagia, in relation to mealtimes and food. People with profound intellectual and multiple disabilities (PIMD) often have additional eating and drinking difficulties (dysphagia). Dysphagia requires people to have ongoing support and recommendations for their eating and drinking to keep them healthy. This study has developed from observations I have made during my clinical work as a Speech & Language Therapist (SLT) and from talking to family carers. It is clear that family carers often have different points of view about their son or daughter with profound intellectual and multiple disabilities, than those of professionals. These different points of view mean clinical interventions can become marked with conflict. This study aims to understand the meanings of mealtimes and food, in the context of dysphagia from the perspective of family carers. Only when we examine this and allow individuals to tell their stories can we understand and offer support accordingly and ensure more functional and beneficial interactions and interventions. The study took place in a mental health and learning disability NHS trust in the north east of England. 7 Findings will be presented around four themes – the meaning of food and mealtimes, relationships, roles within the family and challenges. Findings will be discussed and recommendations made for practice and for future research. 8 Contents Chapter 1: Introduction……………………………………………………………...13 Service context ....................................................................................................... 14 Development of the research .................................................................................. 19 Rationale for the research....................................................................................... 24 Research Aim ......................................................................................................... 27 Research Questions ................................................................................................ 27 Thesis Overview..................................................................................................... 29 Chapter 2: Literature review………………………………………………………...33 Dysphagia ............................................................................................................... 34 Dysphagia and Quality of Life ............................................................................... 34 Profound Intellectual and Multiple Disabilities ..................................................... 36 Profound Intellectual & Multiple Disabilities & Dysphagia ................................. 36 Capacity & Consent ............................................................................................... 40 Children with disabilities & dysphagia .................................................................. 41 Caring for a family member with disabilities ........................................................ 45 Caregiver stress & burden ...................................................................................... 50 Compassion in healthcare ...................................................................................... 53 The social model of disability ................................................................................ 56 The lived experience of disability .......................................................................... 59 The importance of food and mealtimes .................................................................. 62 Socialisation ....................................................................................................... 66 Gender roles ....................................................................................................... 67 Class and social networks .................................................................................. 70 Symbolic and cultural nature of food ................................................................. 73 Identity ............................................................................................................... 74 Rationale for the research based on the literature .................................................. 78 Chapter 3: Methodology…………………………………………………………….81 Ontology ................................................................................................................. 84 Epistemology ......................................................................................................... 85 Theoretical perspective .......................................................................................... 85 Phenomenology ...................................................................................................... 87 What is phenomenology? ................................................................................... 87 Origins of phenomenology ................................................................................