ArticlePalliative care and social practice2022
Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study.
Article in Palliative care and social practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04638608 (A Complex Intervention Study on a Palliative Rehabilitation Blended Learning Program to Support Relatives and Health Care Providers of People With ALS and FTD in Coping With Challenges), which is not on this map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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The trial behind it
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.
A Complex Intervention Study on a Palliative Rehabilitation Blended Learning Program to Support Relatives and Health Care Providers of People With ALS and FTD in Coping With Challenges
Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 17 citations in OpenAlex.
- The Emotional Experiences of Healthcare Professionals Working in Amyotrophic Lateral Sclerosis: A Systematic Review.Muscle & nerve · 2026Pooled it
- An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): a randomized parallel multi-center feasibility trial.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Trial
- Reflections on wishes and needs of adults living with the life-threatening disease Duchenne muscular dystrophy.Palliative care and social practice · 2026Article
- Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.Palliative care and social practice · 2026Article
- 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
- Rehabilitation in Amyotrophic Lateral Sclerosis: Recommendations for Clinical Practice and Further Research.Journal of clinical medicine · 2025Review
- Effectiveness of a Learning Pathway on Food and Nutrition in Amyotrophic Lateral Sclerosis.Nutrients · 2025Article
- Lived Experiences of Physiotherapists in Caring for People with Advanced Amyotrophic Lateral Sclerosis in Portugal: A Phenomenological Study.Behavioral sciences (Basel, Switzerland) · 2025Article
- What is the current state of the research literature examining the impact of the motor neurone disease journey on the couple's relationship? A scoping review.Palliative & supportive care · 2025Article
- Working with people living with motor neurone disease and the impact on professionals' emotional and psychological well-being: A scoping review.Palliative medicine · 2025Article
- Rehabilitation Interventions in Adults with Amyotrophic Lateral Sclerosis: A Review :.Galen medical journal · 2025Review
- Benefits of integrating palliative care: a qualitative exploration of the perspectives of palliative care providers in a tertiary health facility in Ghana.Palliative care and social practice · 2023Article
- A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments.BMC health services research · 2022Article
- Experiences of an Online Palliative Rehabilitation Programme for Spousal Caregivers of People With Amyotrophic Lateral Sclerosis and Cognitive and/or Behavioural Impairments: A Qualitative Interpretive Study.Advances in rehabilitation science and practiceArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
AIMS AND
objectivesTo explore reflections of family caregivers and health professionals regarding the challenges involved in caring for persons with amyotrophic lateral sclerosis and cognitive and/or behavioral impairments (PALS/CIs).
backgroundFamily caregivers of PALS/CIs are highly burdened and at great risk of psychological sequela. Professionals working with these families can be negatively affected on their well-being and are at risk of burnout.
designThe design was a qualitative interview study.
methodsOne focus group and 10 individual semi-structured interviews were conducted with seven family caregivers and nine professionals after the death of a PALS/CIs. The analysis was guided by the interpretive description methodology and the theory of sense of coherence. This study adheres to the COREQ guidelines and the ICMJE recommendations.
resultsThe family caregivers' challenges regarding coping with everyday needs related to the sick person were associated with 'Accepting that nothing else matters', 'Adjusting to new roles while balancing', and 'Realizing different values in relationships'; whereas the professionals' challenges were related to 'Collaboration a balancing act', 'Working in a home of sorrow', and 'Coordinating threads to tie'.
conclusionFamily caregivers found coping with the complexity of the diseases a challenge, and their everyday life needed constant adjustment to new roles, coping with inappropriate behavior, and navigating through the progression of the diseases of their sick relatives while collaborating with numerous professionals. The professionals struggled with coordinating and collaborating with the families and with other colleagues due to the severeness and complexity of diseases. RELEVANCE TO CLINICAL PRACTICE: Findings point to the importance of relationships for caregivers and professionals and a need to provide support through an online palliative rehabilitation program that encompass coping strategies in relation to the diseases. TRIAL REGISTRATION DETAILS: Id no. NCT04638608.
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