A Qualitative Study of Caregiving for Adolescents and Young Adults With Spinal Cord Injuries: Lessons From Lived Experiences

Top Spinal Cord Inj Rehabil, 2019 · DOI: 10.1310/sci2504-281 · Published: October 1, 2019

Spinal Cord Injury Social Support Research Methodology & Design

Simple Explanation

This study explores what it means to be a caregiver for adolescents and young adults (AYAs) with spinal cord injuries (SCIs). It looks at the experiences of both the young adults and their caregivers to understand their roles and the challenges they face. The researchers found that caregiving involves more than just physical help. It includes emotional support and helping the young adults achieve their goals and live fulfilling lives, support for a range of day-to-day activities spanning from practical needs to facilitating developmental trajectories. The study also found that while the young adults had ideas about what they wanted in a caregiver, the actual care partnerships were often based on who was available rather than personal preference, care partnerships appeared to be guided more by availability than preference.

Study Duration

17 months

Participants

9 AYAs (15-22 years old) with SCI and 8 informal caregivers

Evidence Level

Qualitative study using phenomenological and narrative methods

Key Findings

1
The meaning of “caregiving” is highly individualized for AYAs with SCIs, varying among dyads.
2
Caregiving practices extend beyond physical assistance to include emotional support, health management, and facilitating developmental goals.
3
Caregiver networks appear to be self-initiated strategies for managing and ensuring access to care, with roles assigned based on preferences, availability, and abilities.

Research Summary

This qualitative study examined the characteristics of caregiving from the perspectives of adolescents and young adults (AYAs) with spinal cord injuries (SCIs) and their informal caregivers. The study found that caregiving is highly individualized and involves a breadth of practices related to practical needs and emotional support and that caregiving practices include emotional work, that cannot be disentangled from developmental goals and needs. The study highlights the importance of considering caregiver fit and networks to reduce strain and improve well-being among individuals providing and receiving care, Assessment of caregiver networks and opportunities for choice should be examined to reduce strain and improve well-being.

Practical Implications

Individualized Care Approaches

Healthcare providers should recognize that the meaning and practices of informal caregiving are individualized for AYAs with SCIs, driven by dynamic practical and emotional needs linked to development and rooted in personal beliefs and interpersonal relationships.

Caregiver Fit and Support

The inherent intimacy and demands of caregiving suggest that caregiver fit may contribute to perceived stress or burden and affect long-term outcomes. Frequent assessment of caregiver fit may be warranted, along with training and support related to AYA development.

Caregiver Networks

Encouraging the cultivation of caregiver networks rather than reliance on one person may be important for supporting AYAs’ transitions to adult health care and productive roles. Healthcare systems should examine caregiver networks and opportunities for choice to reduce strain and improve well-being.

Study Limitations

1
Generalizability of results is limited due to the qualitative nature of the study.
2
The duration of participant observation and overall engagement in this study was limited due to feasibility considerations.
3
Further research is needed to capture more heterogeneity in caregiver dyads and practices, including formal caregivers, over a longitudinal period.

Your Feedback

Was this summary helpful?

Back to Spinal Cord Injury