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Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers

Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers
Authors: Isabel Vandenbogaerde; Lieve Van den Block; Luc Deliens; Emma Carduff; Agnes van der Heide; Jan De Bleecker; Aline De Vleminck;

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers

Abstract

Background: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. Aim: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers—and if, when, how, and why these experiences change over time. Design: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. Setting/participants: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. Results: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. Conclusion: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals’ thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

Countries
Belgium, Belgium, Netherlands
Keywords

Male, Adult, amyotrophic lateral sclerosis, Social Sciences, DECISION-MAKING, PALLIATIVE CARE, Advance Care Planning, Medicine and Health Sciences, Humans, Longitudinal Studies, Qualitative Research, Advance care planning, Aged, Aged, 80 and over, Terminal Care, Amyotrophic Lateral Sclerosis, longitudinal qualitative study, Middle Aged, CANCER, NEURON DISEASE, Caregivers, family carers, EoLC, Female, ALS

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    popularity
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    Top 10%
    influence
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
10
Top 10%
Average
Top 10%
Green
hybrid