End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Abstract

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis

“…The guidelines of the European Federation of Neurological Societies (EFNS) have underlined this point, stressing that ACP should be discussed early with the patient and CGs while respecting the patient’s social and cultural background [ 14 ]. According to our findings, “early” or “soon” did not mean “immediately”, but rather “appropriate” for the patients/CGs system, and this highlights what has been conceptualized elsewhere [ 37 ] as the “importance of sensitive and timely conveyance of information”. In other words, there is a need to assess the readiness of individuals with ALS and their CGs to have this conversation [ 50 ].…”

“…In this regard, there is a need to improve communication between HPs and individuals with ALS/CGs by recognizing that the time needed for acceptance of the diagnosis by individuals with ALS/CGs can differ, as can the coping strategies they adopt [ 27 , 37 ]. At the same time, diagnosis communication is difficult for HPs [ 38 ], whose communication skills come into play and who need improvement [ 39 , 40 ] and effective training programs [ 41 , 42 , 43 ].…”

Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions

“…The complex nature of the palliative care sector, which can be difficult to navigate, can also deter patients, families and carers from seeking palliative care, or may leave them at a loss regarding how to best access and arrange the support and professional help they need [ 34 ]. The carers of patients with MND in this study and others have reported that they find themselves lost in a “service provision maze”, and do not know who to approach for support when needed [ 10 , 23 ].…”

Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups

“…Numerous studies have highlighted that healthcare professionals frequently overlook caregivers' need for support [55,56]. Additionally, information regarding prognosis and disease progression is often inconsistent or inadequate [19], a situation exacerbated by the absence of a shared language regarding death in contemporary society [57,58].…”

“…In the face of heightened burden, family caregivers frequently find themselves compelled to cut down on the time and attention they allocate to their personal needs, leisure pursuits, and broader family and social connections [18,19]. The rising demand for caregiving often necessitates leaving employment or scaling back working hours, leading to reduced income and limited career prospects [20].…”