Co-developing a Novel Intervention to Promote Wellbeing of Family Caregivers of Individuals With Spinal Cord Injury

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People with spinal cord injury (SCI) experience an irreversible neurological impairment. Each year there are more than 17,000 and 3,500 new cases of SCI in the United States and Canada, respectively. The estimated lifetime health care and direct economic cost that SCI imposes is between $1.6m and $3m (CAD) per person. However, this number is substantially higher when unpaid care provided by family caregivers is considered. Family caregivers of individuals with SCI provide the majority of care, from assistance with activities of daily living to managing finances. Family caregivers report negative social and health-related consequences such as difficulties in maintaining a social life or full-time employment. Family caregivers also tend to ignore their own mental and physical health needs. The burden and distress caused by caregiving responsibilities not only impacts caregivers, but also caregivers' ability to respond to the patients' needs. Therefore, it is essential to better understand and address the needs and challenges faced by family caregivers. In preliminary work conducted to explore these issues, the investigators examined the needs and challenges of family caregivers of individuals with SCI through conducting a systematic review, an online survey and semi-structured interviews. Working with end-users partners and building on this line of research, the investigators aim to provide the information and resources required and requested by family caregivers to address their needs via an eHealth tool. Through this needs-based technology intervention, the investigators' goal is to improve the physical and psychological wellbeing of family caregivers of individuals with SCI and, ultimately, to improve the well-being of the individuals with SCI. In addition, the investigators will investigate patterns of health care use among family caregivers and individuals with SCI as a means to evaluate the impact of the intervention.