Spinal cord injury and family caregivers: A description of care and perception of service need

Abstract

As survival rates and life expectancies of individuals experiencing acquired disabilities such as spinal cord injury improve, greater demands are placed on health, rehabilitation and long-term care services. Further, family caregivers are assuming much of the caring responsibilities. This paper examines family caregiving in relation to individuals with spinal cord injury (SCI) in an Australian context. The paper is based on a descriptive survey conducted with 206 individuals with SCI, referred to a specialist SCI outreach service in Queensland, and 179 family caregivers. The survey collected social and demographic information and details of the type of care provided by family caregivers. It also explored family caregivers' perceptions of the types of services they require to assist them in their caring roles. Family caregiving typically involved physical, practical, and emotional support, and in many cases this occupied in excess of three hours a day, with no additional source of caregiving provided. The most frequently reported service types required by family caregivers included respite, personal support, information services, and health professional services. Mapping caregiver needs in this area establishes a critical basis for service planning and more importantly provides a guide for the development of a range of services dedicated to maintaining the health and well-being of family caregivers of individuals with SCI.