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Parents' experience of children with acquired brain injury undergoing neurorehabilitation: a systematic review
Marta Fernandes1, Chandrasekar Rathinam2,3, Anne Elizabeth Topping1,4
1University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Insights
Parents face challenges during their child's acquired brain injury (ABI) neurorehabilitation. Improving parental support in pediatric neurorehabilitation services is crucial for better outcomes.
Area of Science:
- Pediatric Neurorehabilitation
- Qualitative Research Synthesis
- Acquired Brain Injury (ABI)
Background:
- This systematic review synthesizes qualitative evidence on parents' experiences with children undergoing neurorehabilitation in the first year post-acquired brain injury (ABI).
- Understanding parental experiences is vital for improving pediatric neurorehabilitation services.
Approach:
- A systematic review of qualitative and mixed-method studies was conducted using thematic synthesis (Thomas and Harden).
- Searches were performed across major databases (Embase, MEDLINE, CINAHL, Scopus, PsycINFO) from 2009-2023.
- Study quality was assessed using the Critical Appraisal Skills Programme tool.
Key Points:
- Three studies, involving 30 parents, met the inclusion criteria.
- Identified themes include school unpreparedness, parents acting as advocates and monitors, and recognizing ABI's impact.
- Parents highlighted challenges and the need for enhanced support during neurorehabilitation.
Conclusions:
- Parental experiences during pediatric neurorehabilitation for acquired brain injury (ABI) present significant challenges.
- Recommendations focus on improving parental support and care pathways within neurorehabilitation services.
- Enhancing these services can positively impact both parents' and children's overall neurorehabilitation experience.
Background:
This systematic review aims to synthesise the qualitative evidence exploring parents' experiences of children with acquired brain injury (ABI) undergoing neurorehabilitation during the first year post-injury.
Methods:
A systematic review of qualitative research was conducted using thematic synthesis with Thomas and Harden's approach. The population, exposure and outcome model was used for the search strategy. The electronic databases Ovid Embase, Ovid MEDLINE, CINAHL, Scopus and PsycINFO were searched from 2009 to 2023. The review included qualitative and mixed-method studies published in English only. Grey literature was excluded. There were no geographical restrictions. Reporting within the review followed the Enhancing Transparency in Reporting the Synthesis of Qualitative Research guideline. The studies' quality was appraised using the Critical Appraisal Skills Programme tool.
Results:
Three studies met the inclusion criteria and were included in the synthesis, representing the experiences of 30 parents. The quality assessment showed that the three included studies met most quality indicators. Following thematic synthesis, four analytical themes were identified: school unpreparedness, parents as advocates and navigators, parents as monitors, and parents recognising the impact of ABI on their child. The reviewers proposed a group of recommendations for services reviewing their parental support.
Conclusion:
This review highlights some challenges parents of children diagnosed with ABI experience during their child's neurorehabilitation journey. This review has suggested potential improvements that could be made in paediatric neurorehabilitation services when reviewing their parental support and care pathways. These will ultimately influence parents' and children's experience of paediatric neurorehabilitation services.
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