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

The Journal of Spinal Cord Medicine, 2024 · DOI: 10.1080/10790268.2022.2153218 · Published: January 1, 2024

Spinal Cord Injury Pediatrics Research Methodology & Design

Simple Explanation

Pediatric spinal cord injuries can disrupt a child's development and affect their caregivers. This review examines existing research on the experiences of children with SCI and their caregivers to identify gaps in the literature. The review analyzes qualitative studies focusing on the perspectives of both children with SCI and their caregivers, exploring themes such as community participation, unmet needs, and the impact on caregivers' lives. The study identifies the need for more specialized rehabilitation centers, accessible environments, and increased awareness to combat societal discrimination against individuals with SCI.

Study Duration

2001 to 2021

Participants

72 individuals with SCI and 227 caregivers

Evidence Level

Scoping Review of Qualitative Studies

Key Findings

1
Caregivers face obstacles to community participation, unmet needs related to their child's SCI, and radiating effects on their own lives, including stress and financial difficulties.
2
Individuals with pediatric SCI experience challenges in adjusting to life, hardships, and hardiness, and rely on peers and family for emotional support.
3
Individuals with SCI have to cope with perception of self and body-image post injury and transitioning into post-traumatic life.

Research Summary

This scoping review aimed to explore what is known about the lived experiences of survivors and caregivers of paediatric SCI. There was a lack of accessible environments and specialised rehabilitation centres for individuals with SCI. This review also suggests for more published literature from developed countries in the future, which will provide a more detailed insight into the healthcare facilities in those countries too.

Practical Implications

Improved Rehabilitation Programs

Understanding the firsthand experiences of individuals with SCI can inform patient-centered, goal-oriented rehabilitation protocols.

Increased Awareness

Addressing the discriminatory attitude of society through proper knowledge and awareness of SCI can lead to a smoother transition into adulthood for children with SCI.

Accessible Environments

Promoting the development of more specialized rehabilitation centers and accessible environments in public spaces can improve the quality of life for individuals with SCI and their caregivers.

Study Limitations

1
Handpicking of the articles could not be possibly done, which can lead to the non-inclusion of any relevant literature.
2
The review did not search for grey literature i.e. the information provided by the government agencies and institutions in form of report, proceedings etc. as it is not peer reviewed.
3
Small published literature on paediatric SCI populations from developed countries that is based on case studies from one or two participants, which cannot cater to large paediatric SCI populations in developing nations.

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