The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review

The Journal of Spinal Cord Medicine, 2024 · DOI: 10.1080/10790268.2022.2164455 · Published: January 1, 2024

Spinal Cord Injury Pediatrics Social Support

Simple Explanation

This review explores how caregivers of children with spinal cord injuries participate in research and whether their voices are truly being heard. The review found that caregiver participation is often limited to completing questionnaires, with little emphasis on their personal experiences and perspectives. By better understanding and acting upon the experiences of these caregivers, healthcare and overall well-being for children with SCI can be improved.

Study Duration

January 2008 to March 2022

Participants

Caregivers of children and adolescents (0-19 years) with SCI

Evidence Level

Scoping Review

Key Findings

1
Research involving caregivers of children with SCI is predominantly conducted in the USA, especially through Shriners Hospitals for Children, limiting representation.
2
Caregiver participation is often limited to quantitative data collection, like surveys, which minimizes emphasis on their individual experiences and perspectives.
3
Caregivers rarely participate in the research process beyond answering questions, which further diminishes their narrative influence and input.

Research Summary

This scoping review aimed to explore the voice of caregivers of children and adolescents with SCI by collating available research and synthesizing how the research has been conducted. The review identified that the voice of caregivers in research is limited by representativeness, pre-determined emphasis, lack of involvement in the process, and the reported narrative. The study suggests that reflecting on caregivers’ voices, including the reason for their participation, how their experiences are captured, and how the findings are presented, can lead to improved care and health for children and adolescents with SCI.

Practical Implications

Enhance Representation

Researchers should actively seek to include a more diverse group of caregivers, considering factors such as geographic location, language, and family structure.

Promote Qualitative Research

Increase the use of qualitative research methods to better capture and understand the lived experiences and perspectives of caregivers.

Involve Caregivers in Research

Integrate caregivers as active participants in the research process, such as through advisory boards or co-researcher roles, to ensure their voices are genuinely heard and acted upon.

Study Limitations

1
Less strict inclusion/exclusion criteria might have provided a broader range of results.
2
The views and experiences of the authors have likely affected the analytic process of this review.
3
Voice is not an easy phenomenon to define or describe.

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