co-developing a novel intervention to promote wellbeing of family caregivers of individuals with spinal cord injury

Conditions: Spinal Cord Injuries; Caregiver Burden

Summary: family caregivers of individuals with spinal cord injury (sci) provide the majority of care and are at high risk of experiencing caregiver burden, which not only impacts caregivers' own wellbeing, but also their ability to respond to patients' needs. health education using online approaches (ehealth) has the potential to improve quality of care, enhance communication between health care users and providers, reduce costs and increase access to existing knowledge and education for family caregivers. here, the investigators propose a research study to assess the quality of the ehealth program. the findings of this study will lead to the refinement of the ehealth program.

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.

Eligibility criteria:
inclusion criteria: * family caregiver of an adult individual with sci * must be older than 18 years old * must live in canada * must live with the individual with sci in the community * the spinal cord injury of the individual with sci must have happened no earlier than 6 months prior to participation exclusion criteria: * family caregiver with major medical and physical conditions that needs routine visits to medical doctors (e.g., cancer) * family caregivers of individuals with sci who are still in a rehabilitation facility

Keywords: caregiving ehealth online education family caregivers