Experiences of individuals with acquired brain injury and their families interacting with community services: a systematic scoping review

Abstract

Purpose

This scoping review aims to (1) synthesise the research findings on the experiences of individuals with acquired brain injuries, and their families, when interacting with, or accessing, community-based services and (2) identify where gaps in service provision may exist and their cause.

Methods

A systematic search strategy was employed across multiple databases to identify all studies relating to the experiences of individuals with acquired brain injuries and their families when interacting with, or accessing, community-based services. Inclusion was assessed by at least two reviewers at each stage and data extraction was completed by one researcher and validity checked by another. A narrative synthesis was employed.

Results

A total of 101 papers met the inclusion criteria with the narrative synthesis identifying three main themes of (1) unmet needs, (2) types of access, and (3) barriers to access.

Conclusions

The results identify that those with acquired brain injuries, and their families, experience significant difficulties interacting with community-based services and often do not receive appropriate access. Many barriers to access were identified including a lack of knowledge of the long-term effects of acquired brain injury amongst professionals working in health and social care services.

Implications for rehabilitation

• Brain injury is a leading cause of disability worldwide with a range of physical, cognitive, emotional, and behavioural difficulties.

• It is important that service users and families are given appropriate information about the long-term difficulties associated with ABI so they are better informed about the types of support they may need upon discharge from hospital.

• Rehabilitation professionals need to ensure they have good level of knowledge of the difficulties associated with ABI to ensure appropriate access to services for individuals and their families.

• Understanding more about unmet needs allows community rehabilitation services to be tailored and person-centred.

Keywords:

• Acquired brain injury
• unmet needs
• scoping review
• rehabilitation
• community
• long-term care

Acknowledgements

The authors would like to thank the following previous students from the University of Plymouth, School of Psychology for providing support with initial searches: Craig Andrews, Hannah Harris, Connor Ovenstone, Andrew Robbins, Charlotte Stone, and Jade Walsh.

Disclosure statement

The authors report no conflict of interests.