A Systematic Review of How Spinal Cord Injury Impacts Families

Purpose/Objective: This systematic review synthesizes the existing literature on the impact of spinal cord injury (SCI) on families, including parenting, marital relations, and caregivers' psychological adjustment. Research Method/Design: Seven databases were searched for relevant peer-reviewed studies. Dissertations, chapters, editorials, and review articles were excluded. Sixty-six studies that examined SCI's impact on caregivers and families were included. Results: The review included 55 quantitative studies, 10 qualitative studies, and one study that utilized both methodologies. Among the quantitative psychosocial adjustment studies, as well as the qualitative studies, lack of social support was associated with an increased sense of burden, stress, depression, anxiety, and poorer physical health in caregivers. In the family relationship studies (n = 7), few significant differences were found in family functioning. Marital relationship studies (n = 12) frequently examined intimacy (sex, partner affirmations, and emotional support) as an important facet for determining positive or negative outcomes when one partner had SCI. However, divorce rates appeared to increase over time postinjury. Though few studies investigated caregiver needs and interventions (n = 5), needs for social support and information were identified, and several interventions (e.g., family education, more social support, and problem-solving training) were beneficial for promoting caregivers' psychosocial adjustment. Conclusions: SCI significantly impacts caregivers' sense of burden and psychological distress, with major implications for family functioning and caregivers' physical, mental, and social health. These issues occurred internationally and endured over time. Findings indicated the need for focused interventions to support caregivers' psychosocial adjustment after SCI. Impact and Implications This systematic review is one of the first to examine the impact of SCI on family relationships and caregiving by family members. Findings indicate that many family members have unmet needs relating to emotional and social support for living with a person with SCI and the possible lifelong caregiving responsibilities. Current literature is very limited regarding (a) spirituality and resilience to assist families in the adjustment; (b) the concept of loneliness and its association with the quality of social support, not quantity of support; and (c) the lack of intervention research for caregivers to adapt and cope with the ongoing demands of this role. Family caregivers are a key to the health and well-being of the care recipient, and creating ongoing interventions for those who have difficulty adjusting is imperative since the distress will not abate and could also affect the care recipient's emotional and physical health. Thus, behavioral and social initiatives are a priority to promote their psychological and physical health.