ArticlePloS one2022
"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.
Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.
- Experiences and perspectives of healthcare professionals implementing advance care planning for people suffering from life-limiting illness: a systematic review and meta-synthesis of qualitative studies.BMC palliative care · 2023Pooled it
- End-of-life communication in the context of MAID: a qualitative study on the perspectives and preferences of individuals living with MS.BMC palliative care · 2026Article
- Palliative care impact on hospital utilization and trends among lung cancer admissions with a high risk of mortality in U.S. hospitals.Frontiers in health services · 2026Article
- Advance care planning before and during the COVID-19 pandemic: an observational cohort study of 73 675 patients' records.BJGP open · 2024Article
- User appraisal of a booklet for advance care planning in multiple sclerosis: a multicenter, qualitative Italian study.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Article
- Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.Palliative medicine · 2023Article
- Views of people living with dementia and their carers on their present and future: a qualitative study.BMC palliative care · 2023Article
Corrections and comments
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Authors and funding
9 authors at 6 institutions in 2 countries.
Funding
Abstract
backgroundLittle is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives.
aimTo explore under what situations, with whom, how, and why do people with MS and their families engage in ACP.
methodsWe conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach.
resultsParticipants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions.
conclusionThese findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.
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