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

Danielle B. Rice, Andrea Carboni-Jiménez, Mara Cañedo-Ayala, Kimberly A. Turner, Matthew Chiovitti, Alexander W. Levis and Brett D. Thombs ()
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Danielle B. Rice: Jewish General Hospital
Andrea Carboni-Jiménez: Jewish General Hospital
Mara Cañedo-Ayala: Jewish General Hospital
Kimberly A. Turner: Jewish General Hospital
Matthew Chiovitti: Jewish General Hospital
Alexander W. Levis: Epidemiology, Biostatistics, and Occupational Health
Brett D. Thombs: Jewish General Hospital

The Patient: Patient-Centered Outcomes Research, 2020, vol. 13, issue 5, No 1, 519 pages

Abstract: 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.

Date: 2020
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DOI: 10.1007/s40271-020-00441-8

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