Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of Peop
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REVIEW ARTICLE
Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review Danielle B. Rice1,2 · Andrea Carboni‑Jiménez1,3 · Mara Cañedo‑Ayala1 · Kimberly A. Turner1 · Matthew Chiovitti1 · Alexander W. Levis4 · Brett D. Thombs1,2,3,4,5,6 Published online: 12 August 2020 © Springer Nature Switzerland AG 2020
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.
1 Introduction Informal caregivers are people who provide ongoing support for a family member or friend (referred to as a ‘loved one’) in need of care due to a health condition [1]. They are caregivers who are not compensated monetarily for providing care, and most do not receive formal training [1]. Nonetheless, the level of care they provide can be substantial [1]
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s40271-020-00441-8) contains supplementary material, which is available to authorized users. * Brett D. Thombs [email protected] Extended author information available on the last page of the article
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