Palliative care at home : supportive needs of informal caregivers of patients with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative disease primarily of the motor neurons. As the disease progresses, people with ALS become more and more immobile, in need of care, and are less able to do everyday activities themselves. Around 600 people live with ALS in Switzerland. Informal caregivers, primarily family members, but also friends and relatives, the so-called informal caregivers, play a central role in accompanying, looking after and caring for people with ALS. Taking on these activities can be stressful for informal caregivers, so that different types of support may be required. This cumulative doctoral thesis investigates these support needs of informal caregivers in Switzerland, and delineates ethical challenges in the care for people with ALS.
The first chapter introduces the topics of amyotrophic lateral sclerosis, palliative and multidisciplinary care, and informal caregiving for people with ALS. Subsequently, the second chapter lays out the research questions and objectives, methods, and methodology used in this thesis. Chapters three to ten form the results section of this cumulative thesis, whereby I first present an overview of needs of informal caregivers of people with ALS during the disease course in the form of a systematic review using narrative synthesis. In addition to this corpus of evidence, the fourth chapter provides an overview of supportive needs of informal caregivers in Switzerland using a thematic analysis of interview data from both informal and professional caregivers. The chapter outlines several unmet needs of informal caregivers such as administrative burden, advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.
Complementing this largely descriptive research, the fifth chapter provides a grounded theory-based approach to understand informal caregiving during the disease and caregiving progression of ALS. Informal caregiving is understood as an upholding a steady state among different activities which informal caregivers perform. This process of holding the balance is the organizing element to four secondary categories which could disrupt or facilitate a balance. The systematic review found a lacuna of research on bereavement needs of informal caregivers. Hence, the sixth chapter provides a thematic analysis of the experiences of bereavement of informal caregivers. However, before the death of people with ALS, they have to make decisions regarding their end-of-life circumstances. The seventh chapter discusses end-of-life decisions via brain-computer-interfaces for people with ALS. The eight chapter outlines informal caregiving at the end-of-life in home care in a general manner. The ninth chapter discusses the conceptualisation of hopelessness of people from ALS, arguing that in the context of ALS, hopelessness is often conceptualized incorrectly. The tenth chapter identifies unfair conditions in the provision of assistive technologies and devices in ALS that arise because of a gap in the transition from disability insurance to old-age and survivors’ insurance in Switzerland. The thesis concludes with a critical discussion and contextualization of the present research.