ArticleThe patient2020
Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review.
Article in The patient, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed, 24 citations in OpenAlex.
- Caregivers' Internet-Delivered Insomnia Intervention Engagement and Benefit: SHUTi-CARE Trial Primary Quantitative Analysis.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2024Trial
- PROTOCOL: Experiences of Informal Caregivers of Dependent Older People on Interventions to Reduce Care Burden and Promote Their Biopsychosocial Well-Being.Campbell systematic reviews · 2026Review
- Tailoring acceptance and commitment therapy for parents of children with undiagnosed conditions: a qualitative pre-implementation study.Orphanet journal of rare diseases · 2026Article
- Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa.Journal of genetic counseling · 2026Article
- The Burden of Adult X-Linked Hypophosphatemia on Carers and Family Members: A Mixed-Methods Study.Journal of health economics and outcomes research · 2025Article
- Stress and Quality of Life of Parents of Children With POLR3-Related Leukodystrophy: A Cross-Sectional Pilot Study.Journal of child neurology · 2025Article
- How Do Care Partners of People with Rare Dementia Use Language in Online Peer Support Groups? A Quantitative Text Analysis Study.Healthcare (Basel, Switzerland) · 2024Article
- A qualitative analysis of the impact of canine hypoadrenocorticism on the quality of life of owners.BMC veterinary research · 2023Article
- Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals.The American journal of hospice & palliative care · 2023Article
- Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy.International journal of environmental research and public health · 2023Article
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.Children (Basel, Switzerland) · 2022Review
- Mental health care for rare disease in the UK - recommendations from a quantitative survey and multi-stakeholder workshop.BMC health services research · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundLittle is known about the benefits, and barriers and facilitators to providing psychosocial support to caregivers to a loved one with a rare disease.
objectiveThe aim of our scoping review was to map evidence on (1) perceived benefits and (2) barriers and facilitators of establishing and maintaining services.
methodsThe CINAHL and PubMed databases were searched in December 2018. Qualitative and quantitative studies in any language that described perceived or tested benefits of participating in psychosocial interventions for caregivers, or the barriers and facilitators of providing these interventions, were eligible.
resultsThirty-four studies were included. Interventions were behavioural or psychological, supportive, educational, or multicomponent. All included studies reported on the benefits of participating in psychosocial interventions; 14 (41%) studies also reported on facilitators and 19 (56%) reported on barriers. Benefits that were most commonly found included statistically significant improvements in emotional states (e.g. stress) and caregiver burden and narrative reports of intervention helpfulness. Statistically significant improvements in mental health outcomes (e.g. depression symptoms) were rarely detected. Four themes for facilitators were identified, including intervention characteristics, intervention delivery characteristics, provision of necessary resources, and support provided outside of the intervention. Four barrier themes were also identified: misalignment of intervention to caregiver needs, inability to make time for intervention, practical barriers, emotional barriers.
conclusionsPsychosocial interventions for caregivers to a loved one with a rare disease may be helpful in reducing stress, burden, and feelings of isolation among caregivers. Future research should design interventions for caregivers that take into account facilitators and barriers to establishing and maintaining such interventions.
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What OpenQuestion holds
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.