Lived experiences of caregivers and survivors of paediatric spinal cord injury: A scoping review of qualitative studies

Abstract

Context

Paediatric Spinal Cord Injury (SCI) has an impact on a child’s dynamic development, disrupting their participation in school, community, and social relationships while simultaneously causing repercussions on their caregiver’s life. The rare nature of paediatric SCI calls for a detailed inspection of the literature from the perspective of children and their caregivers.

Objective

This scoping review of qualitative research determines the extent of literature from perspective of caregivers and individuals with paediatric SCI.

Methods

9351 full-text published articles were identified from CINAHL, Ovid, PubMed, and Scopus between 2001 and 2021. After duplicate deletion, 8354 articles were left, and 103 full-text articles were assessed for their eligibility. Finally, eight articles were assessed for their relevance. Key themes that emerged from the data were summarized, compared, and synthesized.

Results

Six studies were from the perspectives of individuals with SCI and two from caregiver’s perspective. Three major themes were identified from caregivers’ opinion studies: “Obstacles to community participation”; “Unmet needs related to a child with SCI”; and “Radiating effect on caregivers’ lives”; whereas five were obtained from individuals with paediatric SCI opinion studies: “Adjusting to life with SCI”; “Hardships & hardiness”; “Peers & family/emotional support”; “Perception of self & body-image post injury”; and “Transitioning into post-traumatic life”.

Conclusion

There is a need for more specialized rehabilitation centers and an accessible environment in public spaces. Also, the review sheds some light on the discriminatory attitude of society as a whole, which can be improved by providing proper knowledge and awareness of SCI.

Keywords:

• Spinal cord injury
• Children
• Qualitative research
• Scoping review

Acknowledgement

This review article is a partial fulfilment for the completion of structured Doctorate of Philosophy/Philosophiae Doctor (PhD) program by the first author Akanksha Saxena (Roll No. 1820747/Regn No. 20-Ph.D-020), under the supervision of second author (Asir John Samuel, at the time of his employment as a Professor in Maharishi Markandeshwar Institute of Physiotherapy and Rehabilitation, Maharishi Markandeshwar (Deemed to be University), Mullana-Ambala, Haryana, India) and co-supervision of third author (Manjeet Singh)

Disclaimer statements

Funding There is no funding for this study.

Conflict of interest The authors declare that they have no competing interests.

Author contributions First author contributed to designing the review, completing the database search and screening of eligible studies while both second and third authors were involved in reviewing the selected studies; all three authors contributed in extracting and analyzing data, interpreting results and preparing manuscript of review.

Data availability

The data analyzed during this study is included in this article itself and since it’s a scoping review no datasets were generated.