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

Carol Haywood; Elizabeth Pyatak; Natalie Leland; Benjamin Henwood; Mary C Lawlor

doi:10.1310/sci2504-281

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

Top Spinal Cord Inj Rehabil. 2019 Fall;25(4):281-289. doi: 10.1310/sci2504-281.

Authors

Carol Haywood¹, Elizabeth Pyatak², Natalie Leland³, Benjamin Henwood⁴, Mary C Lawlor²

Affiliations

¹ Northwestern University Feinberg School of Medicine, Chicago, Illinois.
² University of Southern California, Mrs. T.H. Chan Division of Occupational Science and Occupational Therapy, Los Angeles, California.
³ Department of Occupational Therapy, School of Health and Rehabilitation Sciences, University of Pittsburgh, Pittsburgh, Pennsylvania.
⁴ University of Southern California, Suzanne Dworak-Peck School of Social Work, Los Angeles, California.

Abstract

Objective: To examine characteristics of caregiving from the perspectives of adolescents and young adults (AYAs) with spinal cord injuries (SCIs) and their informal caregivers to address outstanding gaps in knowledge relating to definitions of caregiving and its associated practices for this population. Methods: A multiphase qualitative design was applied, using phenomenological and narrative methods to capture data in participants' homes and communities. Participants were recruited from rehabilitation hospitals and community organizations throughout Los Angeles County, California. Inclusion criteria for AYAs included being 15-22 years old, having acquired an SCI within the previous 5 years, and using a wheelchair for mobility. The AYAs nominated persons they identified as primary caregivers to also participate. Data were collected through individual and group interviews as well as activity observations. Results: Data from the 17 participants (9 AYAs and 8 informal, primary caregivers) revealed ways in which the meaning of caregiving varied among dyads. Caregiving practices extended beyond physical assistance to include support for a range of day-to-day activities spanning from practical needs to facilitating developmental trajectories. Although AYAs expressed ideas about preferred caregiver characteristics, care partnerships appeared to be guided more by availability than preference. Conclusion: Phenomenological analysis revealed that the meaning of "caregiving" and its associated practices are highly individualized for AYAs with SCIs. Caregiving is rooted in personal needs related to effects of SCI and developmental goals. Everyday practices are shaped by individual relationships and the beliefs of AYAs and their caregivers. Addressing influences of caregiving on long-term health and function may require attention to developmental processes, caregiver "fit," and ways care is, or can be, distributed throughout broader networks according to personal needs and preferences.

Keywords: adolescence; caregiving; qualitative; spinal cord injury; young adulthood.

MeSH terms

Adolescent
California
Caregivers / psychology*
Female
Humans
Male
Qualitative Research
Spinal Cord Injuries / nursing*
Young Adult