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

As survival ratesand life expectancies ofindividuals experiencing acquired disabilities such as spinal cord injury improve, greater demands are placed on health, rehabilitation and longterm care services. Further,family caregivers are assuming much ofthe caring responsibilities. Thispaper examinesfamily caregiuing 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 oftbe type ofcare provided byfamily caregivers. It also exploredfamily caregivers' perceptions ofthe types ofservices they require to assist them in tbeir caring roles. Family caregiuing typically involvedphysical, 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 bealtb professional services. Mapping caregiver needs in this area establishes a critical basisfor service planning and more importantly prouides a guide for the development ofa range ofservicesdedicated to maintaining the health and well-being offamily caregivers ofindividuals with SC