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Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review

The Patient - Patient-Centered Outcomes Research volume 13, pages 471–519 (2020)Cite this article

Abstract

Background

Little is known about the benefits, and barriers and facilitators to providing psychosocial support to caregivers to a loved one with a rare disease.

Objective

The aim of our scoping review was to map evidence on (1) perceived benefits and (2) barriers and facilitators of establishing and maintaining services.

Methods

The 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.

Results

Thirty-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.

Conclusions

Psychosocial 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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Author information

Affiliations

  1. Lady Davis Institute for Medical Research, Jewish General Hospital, 4333 Cote St-Catherine Road, Montréal, QC, H3T 1E4, Canada

    Danielle B. Rice, Andrea Carboni-Jiménez, Mara Cañedo-Ayala, Kimberly A. Turner, Matthew Chiovitti & Brett D. Thombs

  2. Department of Psychology, McGill University, Montréal, QC, Canada

    Danielle B. Rice & Brett D. Thombs

  3. Department of Psychiatry, McGill University, Montréal, QC, Canada

    Andrea Carboni-Jiménez & Brett D. Thombs

  4. Epidemiology, Biostatistics, and Occupational Health, Montreal, QC, Canada

    Alexander W. Levis & Brett D. Thombs

  5. Department of Educational and Counselling Psychology, McGill University, Montréal, QC, Canada

    Brett D. Thombs

  6. Department of Medicine, McGill University, Montreal, QC, Canada

    Brett D. Thombs

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  1. Danielle B. Rice
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Contributions

DBR made substantial contributions to the conception and design of the study; acquisition, analysis, and interpretation of the data; and was involved in drafting the manuscript. ACJ, MCA and KAT made substantial contributions to the acquisition, analysis, and interpretation of data, and were involved in drafting the final manuscript. AL made substantial contributions to the acquisition of the data, and was involved in drafting the final manuscript. MC made substantial contributions to the acquisition of data, and was involved in drafting the final manuscript. BDT made substantial contributions to the conception and design of the study; acquisition, analysis, and interpretation of the data; and was involved in drafting the final manuscript. All authors read and approved the final manuscript. BDT is the overall guarantor.

Corresponding author

Correspondence to Brett D. Thombs.

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Funding

No specific funding was received for this review. DBR is supported by a Vanier Graduate Scholarship through the Canadian Institutes of Health Research; ACJ is supported by a Canadian Graduate Scholarship (CGS-M) through the Canadian Institutes of Health Research, unrelated to the present study; and KAT was supported by a Fonds de Recherche Québec-Santé (FRQ-S) masters training award unrelated to the present study. No funding body had any input into the any aspect of this review.

Conflict of interest

Danielle B. Rice, Andrea Carboni-Jiménez, Mara Cañedo-Ayala, Kimberly A. Turner, Matthew Chiovitti, Alexander W. Levis and Brett D. Thombs have no conflicts of interest to declare.

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All data associated with this study has been included in the appendices.

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Rice, D.B., Carboni-Jiménez, A., Cañedo-Ayala, M. et al. Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review. Patient 13, 471–519 (2020). https://doi.org/10.1007/s40271-020-00441-8

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