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

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.

Lifestyle assessment in individuals with spinal cord injuries caused by accidents and disasters in qualitative studies published from 1990 to 2020: A meta‐synthesis of qualitative study

“…Together with physical limitations caused by SCIs, individuals may further suffer from emotional, mental, sexual, economic, and environmental stressors 8,9 . According to the National Spinal Cord Injury Statistical Center (NSCISC), the annual incidence rate of SCIs in the United States in 2015 was about 54 cases per million or almost 17,000 new cases per year 10,11 . With reference to the study by Baba‐Mohammadi et al, 12 estimating the number of Iranian people with SCIs is demanding due to lack of an accurate recording information system.…”

“… 8 , 9 According to the National Spinal Cord Injury Statistical Center (NSCISC), the annual incidence rate of SCIs in the United States in 2015 was about 54 cases per million or almost 17,000 new cases per year. 10 , 11 With reference to the study by Baba‐Mohammadi et al, 12 estimating the number of Iranian people with SCIs is demanding due to lack of an accurate recording information system. Besides, evidence shows that around 70–90 thousand patients are living with SCIs in this country.…”

The voice of caregivers of children and adolescents with spinal cord injuries: A scoping review

“…Children with SCI and their families face significant physical, medical, and psychosocial challenges in both the acute phase of injury and long-term ( 2 ). Even though caregivers play a critical role in the lives of children with SCI, relatively little is known about particular practices and experiences of being a caregiver and how the caregiving might impact the children’s health and function ( 3 ).…”