Danielle B Rice1,2, Andrea Carboni-Jiménez1,3, Mara Cañedo-Ayala1, Kimberly A Turner1, Matthew Chiovitti1, Alexander W Levis4, Brett D Thombs5,6,7,8,9,10. 1. Lady Davis Institute for Medical Research, Jewish General Hospital, 4333 Cote St-Catherine Road, Montréal, QC, H3T 1E4, Canada. 2. Department of Psychology, McGill University, Montréal, QC, Canada. 3. Department of Psychiatry, McGill University, Montréal, QC, Canada. 4. Epidemiology, Biostatistics, and Occupational Health, Montreal, QC, Canada. 5. Lady Davis Institute for Medical Research, Jewish General Hospital, 4333 Cote St-Catherine Road, Montréal, QC, H3T 1E4, Canada. brett.thombs@mcgill.ca. 6. Department of Psychology, McGill University, Montréal, QC, Canada. brett.thombs@mcgill.ca. 7. Department of Psychiatry, McGill University, Montréal, QC, Canada. brett.thombs@mcgill.ca. 8. Epidemiology, Biostatistics, and Occupational Health, Montreal, QC, Canada. brett.thombs@mcgill.ca. 9. Department of Educational and Counselling Psychology, McGill University, Montréal, QC, Canada. brett.thombs@mcgill.ca. 10. Department of Medicine, McGill University, Montreal, QC, Canada. brett.thombs@mcgill.ca.
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.
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.
Authors: Heather L Colquhoun; Danielle Levac; Kelly K O'Brien; Sharon Straus; Andrea C Tricco; Laure Perrier; Monika Kastner; David Moher Journal: J Clin Epidemiol Date: 2014-07-14 Impact factor: 6.437
Authors: Andrea C Tricco; Erin Lillie; Wasifa Zarin; Kelly K O'Brien; Heather Colquhoun; Danielle Levac; David Moher; Micah D J Peters; Tanya Horsley; Laura Weeks; Susanne Hempel; Elie A Akl; Christine Chang; Jessie McGowan; Lesley Stewart; Lisa Hartling; Adrian Aldcroft; Michael G Wilson; Chantelle Garritty; Simon Lewin; Christina M Godfrey; Marilyn T Macdonald; Etienne V Langlois; Karla Soares-Weiser; Jo Moriarty; Tammy Clifford; Özge Tunçalp; Sharon E Straus Journal: Ann Intern Med Date: 2018-09-04 Impact factor: 25.391