Interventions supporting the empowerment of parent carers of children with neurodisability and other long‐term health conditions: A scoping review

TL;DR

This review compiles interventions aimed at empowering parents of children with neurodisabilities or chronic health conditions.

Contribution

The study provides a comprehensive catalog of 145 interventions in an interactive online database.

Findings

145 interventions targeting parent carer empowerment were identified and documented.

Many interventions face challenges with implementation, sustainability, and scalability.

The authors recommend focusing on adapting and evaluating existing interventions rather than creating new ones.

Abstract

To compile information about interventions that have been developed to support the empowerment of parent carers of children and young people aged 0 to 19 years with neurodisability (e.g. cerebral palsy, epilepsy, autism) or other long‐term health conditions (e.g. asthma, diabetes, cancer).

Seven electronic databases and grey literature were systematically searched for potentially eligible studies and information sources. Identified sources were screened by two independent reviewers. Data were extracted using a custom tool developed by the review team, before being coded and recorded in an interactive online database. Eligibility criteria were inclusive to capture a broad range of interventions designed to address any component of parent carer empowerment.

A total of 212 information sources documenting 145 interventions were included in the review and are presented in the database (https://eppi.ioe.ac.uk/eppi‐vis/Review/Index/762). Parent carer‐focused interventions have been developed targeting a range of aspects of empowerment; however, there were issues with implementation, sustainability, and scalability.

Many interventions have been designed to improve parent carer empowerment, targeting different aspects of parent carer behaviour. Designing further parent carer‐focused interventions may not be an efficient use of limited resources. We recommend that future research should prioritize adaptation, implementation, and robust evaluation of existing interventions, or address other modifiable influences on parent carer empowerment.

This scoping review identified 145 different interventions designed to support parent carer empowerment. These interventions have been catalogued and are presented in an interactive, online database.

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