Exploring individual parent‐to‐parent support interventions for parents caring for children with brain‐based developmental disabilities: A scoping review

Author:

Postma Amber1,Ketelaar Marjolijn23,van Nispen tot Sevenaer Justus1,Downs Zahra1,van Rappard Diane1,Jongmans Marian45,Zinkstok Janneke167

Affiliation:

1. Department of Psychiatry and Brain Centre University Medical Centre Utrecht Utrecht The Netherlands

2. Department of Rehabilitation, Physical Therapy and Sports; Brain Centre University Medical Centre Utrecht Utrecht The Netherlands

3. De Hoogstraat, Rehabilitation Utrecht The Netherlands

4. Department of Pedagogical and Educational Sciences, Faculty of Social and Behavioural Sciences Utrecht University Utrecht The Netherlands

5. Department of Neonatology Wilhelmina Children's Hospital, University Medical Centre Utrecht Utrecht The Netherlands

6. Department of Psychiatry Radboud University Medical Centre Nijmegen The Netherlands

7. Karakter Child and Adolescent Psychiatry Nijmegen Nijmegen The Netherlands

Abstract

AbstractBackgroundBrain‐based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer‐based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer‐to‐peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS.MethodAn extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings.ResultsFourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well‐being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent‐pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support.ConclusionsThis review revealed that iP2PS has a positive impact on the emotional and psychological well‐being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer‐parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

Funder

Stichting Epilepsie Instellingen Nederland

Janivo Stichting

Publisher

Wiley

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