What is the evidence about the needs and extent of psychological adjustment of adult family caregivers of individuals living in the community with spinal cord injury? a systematic review

Spinal cord injury (SCI) is a dramatic event which has a significant impact on the individual and his/her family. The actual adjustment to SCI starts when an individual leaves the rehabilitation unit and is no longer under the care of the rehabilitation team. Family caregivers are vital community-based resource who provide care for SCI persons. The objective of this review is to identify and synthesize the best available evidence on the needs and extent of psychological adjustment of adult family caregivers of spinal cord injury persons living in the community. The review considered all empirical studies that explored the needs and psychological adjustment of adult family carers living in the community published in English language. An extensive search was conducted using the following databases; Web of knowledge, Web of science, CINAHL, Medline, Psyc INFO, EMBASE and JBI, as well as manual search of the bibliographies of retrieved articles. The Hawker et al. (2007) three-stage critical appraisal instruments were used to extract data and assess for quality of the papers. A narrative summary of findings was carried out for this review. The finding showed that a total of six papers were included in the review. Four papers used quantitative methods, one paper utilized quantitative method while the remaining one paper utilized mixed methods. Fifty-six papers were initially identified but fifty were excluded as they did not meet the inclusion criteria. Findings were extracted and summarised using the Hawker et al. three-stage critical appraisal method. Six themes emerged from the review: 1) family needs, 2) change in family dynamics, 3) uncertainty, 4) feeling of burden, 5) intimacy and 6) moving on. There is need for healthcare professionals to embark on positive perspective in training and supporting family caregivers of SCI persons living in the community. Family caregivers require continuous, consistent and comprehensive support from professionals, peer and extended family. This support and education help family caregivers develop the required future-oriented adjustment for community integration in SCI.