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

Carol Haywood^*, Elizabeth Pyatak, Natalie Leland, Benjamin Henwood, Mary C. Lawlor

^*Corresponding author for this work

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

4 Scopus citations

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.

Original language	English (US)
Pages (from-to)	281-289
Number of pages	9
Journal	Topics in spinal cord injury rehabilitation
Volume	25
Issue number	4
DOIs	https://doi.org/10.1310/sci2504-281
State	Published - 2019

Funding

Dr. Haywood reports grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Patient-Centered Outcomes Research Institute (PCORI), California Foundation for Occupational Therapy, and the Society for the Study of Occupation during the conduct of the study. The other authors report no conflicts of interest.

Keywords

Adolescence
Caregiving
Qualitative
Spinal cord injury
Young adulthood

ASJC Scopus subject areas

Clinical Neurology
Rehabilitation
Physical Therapy, Sports Therapy and Rehabilitation

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10.1310/sci2504-281

Cite this

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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",

author = "Carol Haywood and Elizabeth Pyatak and Natalie Leland and Benjamin Henwood and Lawlor, {Mary C.}",

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year = "2019",

doi = "10.1310/sci2504-281",

language = "English (US)",

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pages = "281--289",

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AU - Lawlor, Mary C.

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PY - 2019

Y1 - 2019

N2 - 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.

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A qualitative study of caregiving for adolescents and young adults with spinal cord injuries: Lessons from lived experiences

Abstract

Funding

Keywords

ASJC Scopus subject areas

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