ArticleHealth expectations : an international journal of public participation in health care and health policy2014
Dying with motor neurone disease, what can we learn from family caregivers?
Article in Health expectations : an international journal of public participation in health care and health policy, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 3 of them syntheses that pooled it.
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Who cites it
18 citing papers in PubMed, 3 syntheses or guidelines pooled it, 37 citations in OpenAlex.
- Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review.Death studies · 2024Pooled it
- Canadian best practice recommendations for the management of amyotrophic lateral sclerosis.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2020Guideline
- The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review.Palliative medicine · 2020Pooled it
- Paid homecare worker support for people living with motor neurone disease: A secondary analysis of people living with motor neurone disease and family member perspectives.Palliative care and social practice · 2026Article
- Article
- Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Article
- 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.Behavioral sciences (Basel, Switzerland) · 2023Article
- Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions.Brain sciences · 2023Article
- Development of Guidelines for Spouses Engaged in Home-Based Care of Persons With Motor Neuron Disease From Indian Context.Journal of patient experience · 2022Article
- Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review.Palliative care and social practice · 2022Article
- The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review.BMJ supportive & palliative care · 2021Article
- End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers.Palliative medicine · 2021Review
- Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease.Palliative care and social practice · 2021Article
- Article
- CPR decision-making conversations in the UK: an integrative review.BMJ supportive & palliative care · 2019Review
- The Role of Palliative Care in Chronic Progressive Neurological Diseases-A Survey Amongst Neurologists in the Netherlands.Frontiers in neurology · 2018Article
- What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care?Patient preference and adherence · 2013Article
- Lived Experience of Spouses of Persons with Motor Neuron Disease: Preliminary Findings through Interpretative Phenomenological Analysis.Indian journal of palliative careArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIncreasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo.
objectiveTo examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end-of-life care.
designSecondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. SETTING AND
participantsPrimary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis.
resultsCombined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. DISCUSSION AND
conclusionReturning death and dying to social discourse will raise the level of community awareness and normalize conversations about end-of-life care. Strategies for on-going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.