Young, Heather M.

Abstract Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that profoundly impacts the lives of people with the condition and their family caregivers. Little is known about the experiences of care at home among individuals with ALS and their family caregivers. This qualitative study explored these experiences in 14 in-depth interviews that included seven persons with ALS and 13 family caregivers. The findings were organized based on the Salutogenic Model of Health. The main sources of stress reported included the overwhelming nature of getting an ALS diagnosis, inadequacy of health care teams in providing emotional support and promoting shared decision-making in regard to the management of ALS, high level of illness acuity, the intense nature of caregiving involved in ALS, high cost of treatments and equipment, difficulties navigating the healthcare system, unavailability of suitable medical equipment, scarcity of paid caregivers competent in managing ALS, and lack of adequate training for family caregivers. Perspectives on positive coping included mental toughness, maintaining a positive outlook about life and the future, being proactive in seeking support to maintain function and quality of life, proactively communicating with care teams, advanced care planning, having a sense of control over ALS management plan of care, and taking a break from caregiving. Instrumental and emotional support from family, friends, community organizations, and healthcare teams, as well as sufficient insurance and financial coverage for ALS treatments, facilitated better coping. Future research and policies should focus on identifying effective multisectoral strategies for supporting people with ALS and their caregivers.

AbstractIntroduction/AimsMost persons with amyotrophic lateral sclerosis (ALS) live at home with support of family caregivers, with escalating complexity of care over the trajectory of the disease requiring resources and support to mitigate negative physical, social, and emotional outcomes.MethodsThis scoping review identifies the home health/home care needs of persons with ALS and their caregivers as a basis for creating a home health medical standard. We used the PRISMA Extension for Scoping Reviews (PRISMA‐ScR) to examine studies describing home care needs published between 2011 and 2021.ResultsOur search yielded 481 articles, of which 44 were included with a total of 3592 (9–273) participants. Most studies used a cross‐sectional design and 20 (45%) were rated as high quality. We grouped the needs identified as emotional/psychological, assistive devices and technology, information and education, and human resources and professional services. Most studies demonstrated persistent unmet needs and that available interventions were helpful while needs generally were not met proactively, despite the predictable trajectory.DiscussionThis review describes biopsychosocial and equipment interventions over the trajectory of ALS with implications for anticipatory planning by clinicians, as well as policy for coverage of necessary services and supports. Interdisciplinary expert teams could develop consensus around needs across the trajectory and recommended services and supports. To make knowledge more accessible, encourage availability of services, and clarify the need for coverage of services, we aim to develop an expert consensus‐based ALS home health medical standard guidance document in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine.