Negotiating the Spousal Caregiving Relationship Following Spinal Cord Injury

Abstract

Sustaining a spinal cord injury (SCI) at any point in time is life-altering – physically, emotionally, and financially – for all persons affected by the injury, but it can place unique challenges on younger married couples. This study examines the transition to injury for 18 couples (ages 21–55). Data were collected using individual interviews with each partner at three time points following injury and observation in the rehabilitation setting (Creekview). This resulted in 96 individual interviews and 300 hours of observation. Using the life course perspective as a guiding theoretical framework and thematic analysis, I examined how the healthcare institution influenced the couples' relationship during their rehabilitation stay and the subsequent transition home. Creekview staff and couples accepted and reinforced the dominant cultural narrative that women are natural caregivers, but larger social structures of class, gender, and the division of paid and unpaid labor worked together to push some women into caregiving faster or prevented other women from engaging in caregiving. This study examines how younger couples move through the caregiving career during an off-time transition when the expected outcome is not long-term care placement or death. This study identified three main types of caregivers, each with their own path of caregiving – naturalized, constrained, and resistant caregivers. Overall, the transition to injury is complex and this study highlights some of the ways the marital relationship is affected by a nonnormative, unexpected transition.

Citation

Bender, A.A. (2023), "Negotiating the Spousal Caregiving Relationship Following Spinal Cord Injury", Dillaway, H.E., Shandra, C.L. and Bender, A.A. (Ed.) Disabilities and the Life Course (Research in Social Science and Disability, Vol. 14), Emerald Publishing Limited, Leeds, pp. 145-165. https://doi.org/10.1108/S1479-354720230000014009