Dysphagia in the Community: Perspectives and Experiences of Speech Pathologists, Clients, and Caregivers

Abstract

Dysphagia, or difficulty swallowing, is estimated to affect between 5 and 72% of people living at home in the community. This figure is expected to increase in the context of a globally ageing population in which people are living longer with more complex and chronic health conditions, and healthcare system changes are targeted at supporting people to remain living at home. Despite the increasing demand for community-based health care, there remains a significant research gap regarding how dysphagia is and should be managed in the community by speech-language pathologists, including what issues clients with dysphagia living at home and their caregivers experience. Gaining a broader and deeper understanding of the nature of community-based speech-language pathology (SLP) dysphagia services and practices may help provide insights into how dysphagia care in the community setting can be optimised now and into the future. The thesis aims were to (1) investigate and explore community-based SLP services and practices provided to adults with dysphagia living at home and (2) explore the lived experience of dysphagia at home from the perspectives of adults with dysphagia and their caregivers. These aims were explored using quantitative and qualitative methods across four research studies. The first thesis aim was addressed by two studies positioned within an explanatory sequential mixed methods design to first quantitatively, then qualitatively, investigate the nature of dysphagia services and practices for people living at home in the community. The first study (Chapter 2) involved an online survey of practice conducted with speech-language pathologists (n = 144) working with adults with dysphagia living at home. Results suggested that SLP dysphagia practices in the community were similar to dysphagia practices in other settings, which are inherently biomedical and may not be optimal for community-based clients with dysphagia and their caregivers. The second study (Chapter 3) sought to elaborate the findings of Chapter 2 and involved semi-structured interviews with 15 practising speech-language pathologists. Data were analysed using content analysis and revealed an overarching theme suggestive that Community commands a different approach, illustrated by three subthemes that highlighted how and why a different approach to dysphagia care in the community setting was necessary: (1) Skills and mindset require adaptation in the community context, (2) Values and approaches are different in the community context, and (3) Organisational influences impact service delivery in the community context. The second thesis aim was addressed by two separate research studies that explored the lived experience of dysphagia at home in the community, first from the perspectives of 15 clients with dysphagia (Chapter 4) and then of 15 caregivers of persons with dysphagia (Chapter 5). Using a qualitative descriptive approach grounded in phenomenology, interviews explored their personal experiences of living with and managing dysphagia at home. Client perspectives revealed an overarching theme outlining a Journey of discovery—learning to live with dysphagia, describing the process of managing dysphagia at home. This theme comprised three subthemes: (1) The story of dysphagia, (2) Engaging with support networks, and (3) Limited community awareness of dysphagia. Clients described living with dysphagia in the context of other health issues and shared experiences of people in their community not knowing about dysphagia, from friends and the public to health professionals and the hospitality industry. Caregiver perspectives revealed an overarching theme of “You do whatever it takes”, describing the caregiver experience of supporting a family member/friend with dysphagia at home. This theme was reflected in three subthemes where caregivers described (1) Being a caregiver, (2) Support networks, and (3) Practicalities of living with dysphagia. Caregivers voiced a range of pertinent issues experienced when caring for a family member/friend with dysphagia, including how their personal attributes and life experiences may influence their approach to caring. Thesis findings highlight the multifaceted impact dysphagia may have on an individual and their caregiver when living at home in the community. Apparent in the findings is that dysphagia is a health condition that has both physical and psychosocial effects. SLP services must evolve to ensure community-based dysphagia care addresses both physical and psychosocial needs of clients and, importantly, caregivers through the delivery of personalised and holistic care. Further, speech-language pathologists must play a role in raising the profile of dysphagia in our communities.