Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers

The Journal of Spinal Cord Medicine, 2024 · DOI: 10.1080/10790268.2022.2087140 · Published: January 1, 2024

Spinal Cord Injury Pediatrics Rehabilitation

Simple Explanation

This study aimed to understand what is most important for young people with spinal cord injuries (SCI) and their families in Spain. It looked at both health and life aspects, such as movement, daily activities, and expectations for the future. The researchers surveyed children, teenagers, and young adults with SCI, as well as their parents or caregivers, about what they see as their biggest priorities and challenges. This helps to identify the areas where support and rehabilitation are most needed. The results showed that health-related issues like movement and bladder function were important, but so were life aspects like social participation and future expectations. Understanding these priorities can help improve care and support for young people with SCI.

Study Duration

March 2017 to February 2018

Participants

60 participants: 26 youth with pediatric-onset SCI and 34 parents/caregivers

Evidence Level

Level III, cross-sectional survey

Key Findings

1
Parents/caregivers of 2-12-year-olds prioritized “parenthood expectations,” “leg/foot movement,” and “bladder” function.
2
13-25-year-olds highlighted “sit-to-stand” (100%), “eating/drinking” (54%), and “physical function” (94%) as their top unhappiness, importance, and research priorities, respectively.
3
Adolescents and young adults with tetraplegia reported significantly greater unhappiness related to the “mobility in the community” item compared to youth with paraplegia.

Research Summary

This study investigated the health and life (H&L) domain priorities of youth with pediatric-onset spinal cord injury (SCI) and their parents/caregivers living in Spain, revealing key differences in priorities based on age and injury level. The research found that while health domains were generally considered top priorities, life domains such as adulthood and parenthood expectations were also significant, particularly for younger children, and mobility in the community was a major concern for those with tetraplegia. The findings suggest the importance of multidisciplinary care plans that address both health and psychosocial needs, tailored to specific age groups and individual priorities, to improve the overall well-being of young people with SCI.

Practical Implications

Tailored Rehabilitation Programs

Rehabilitation professionals can use these findings to create individualized programs that address the specific health and life priorities of children and adolescents with SCI.

Improved Psychosocial Support

Healthcare providers should focus on addressing the psychosocial needs of young people with SCI, especially those related to mobility, social participation, and future expectations.

Policy and Accessibility Improvements

Advocacy and policy changes are needed to improve community accessibility and support services, particularly for individuals with tetraplegia, to enhance their mobility and quality of life.

Study Limitations

1
Developmental factors and acceptance of circumstances may influence reported H&L priorities.
2
The study defined only broad H&L areas.
3
Relatively small sample size and inclusion of nondyad data precluded a broader stratified analysis of priorities based on participant demographics.

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