Understanding Complex Relationships Among Transition-Age Youth With Spinal Cord Injury and Their Caregivers

PURPOSE: The purpose of this research was to understand daily life experiences of transition-age youth (TAY) with an acquired spinal cord injury (SCI). Specifically, this presentation features an analysis of ways life was coordinated among TAY and their caregivers after an SCI. Approximately 17,000 people in the United States acquire an SCI each year (National Spinal Cord Injury Statistical Center, 2016). These injuries have devastating effects on sensory and motor systems and can lead to chronic disabilities with necessary reliance on caregivers for routine tasks. For TAY (typically understood to be ages 16–26 yr), developmental goals may complicate dynamics with a caregiver. While some responsibilities of caregivers, such as assistance with dressing or transfers, are well defined, many roles and responsibilities remain unnamed or unrecognized as they are assumed in everyday life. Narratives can reveal tacit dimensions of caregiving that are critical for occupational therapists to consider in rehabilitative care.

DESIGN: This qualitative study used a narrative design with influences from phenomenological and ethnographic research traditions. Participants ages 15–22 yr (TAY) who survived a SCI within the past 5 yr and used a wheelchair for mobility were purposively recruited from a diverse, urban area of southern California. Primary caregivers for each TAY were also invited to participate. In total, nine TAY and eight of their caregivers enrolled in the study. TAY had different levels of SCI (high cervical to low thoracic), mechanisms of injury (violence, fall, stroke, and sport), and time since injury (4 wk to 4.5 yr). Caregivers who chose to participate were female and either a parent or significant other of the TAY.

METHOD: Participants were individually interviewed in their homes or communities. Following individual interviews, participants were invited to a series of two group interviews, held separately for TAY and caregivers, to generate collective narratives about experiences within, and following, rehabilitation. Interviews were recorded and transcribed verbatim for categorical, thematic, and narrative analysis.

RESULTS: While data showed significant variance across cases, there was also consistency in the complexity of care relationships. Caregiving involved physical and emotional work, and narratives revealed multiple ways in which it was difficult to discriminate between providers and recipients of care. Interdependent lives (Elder, 1998) and intersubjectivity (Jackson, 1998) were observed within the deeply shared experiences and prolonged engagements of TAY and their caregivers. There was a constant push-and-pull of relationships, in which individuals were drawn close to one another by choice and necessity, but they also felt strain from relentless demands and negotiations in everyday life. TAY and their caregivers worked to cultivate or maintain roles and relationships beyond care dyads that were sometimes at odds with caregiving. Ultimately, narratives expanded and challenged notions of caregiving and generated multiple considerations to be addressed in rehabilitative care for TAY with a SCI.

CONCLUSION: There are many ways caregivers are conceptualized and used in daily life. Caregivers take on great significance for TAY with a SCI, but there is also a symbiotic nature to caregiving dyads. By acknowledging the complexity of these relationships, occupational therapists can help TAY and their caregivers anticipate and respond to changes after SCI. This research lays a strong foundation for ongoing work to affect models of practice, and this study highlights critical considerations for rehabilitation.

References

Elder, G. H., Jr. (1998). The life course as developmental theory. Child Development, 69, 1–12. https://doi.org/10.2307/1132065

Jackson, M. (1998). Minima ethnographica: Intersubjectivity and the anthropological project. Chicago: University of Chicago Press.

National Spinal Cord Injury Statistical Center. (2016). Spinal cord injury (SCI) facts and figures at a glance. Retrieved from https://www.nscisc.uab.edu/Public/Facts%202016.pdf