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

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.