Improving Quality of Life after Spinal Cord Injury: development of an intervention and feasibility study

Abstract

The aims of the research was to identify (1) coping strategies that people with SCI use, (2) factors that impact on quality of life (QoL), (3) people’s attitudes towards peer support groups, (4 and 5) develop and evaluate an evidence informed intervention consisting of a peer support group designed to enhance QoL for people with a spinal cord injury (SCI). According to the literature QoL in people with SCI is low and previous research has shown that peer support groups can be beneficial for other vulnerable groups. There is currently no peer support group in the UK for people with SCI. To help develop the intervention the objective was to design three studies. In study 1 a systematic review was conducted to identify if people with SCI do have a poorer QoL and what factors impact on this. A qualitative study involving several participants was conducted in study 2 which was concerned with finding out how participants cope with their SCI and what knowledge they have of peer support groups and how they feel about them. Study 3 used a quantitative method to analyse how 270 participants had reported coping since becoming spinal cord injured, how they feel about peer support groups, would they attend one and how would they like to see a peer support group structured. The findings of these three studies were used to inform the design of a peer support group as an intervention to improve QoL. The evaluation of the peer support group involved a random control trial with 20 participants divided equally between the intervention and control groups. A mixed method design was used to evaluate the intervention, quantitative (ANOVA), qualitative (Thematic) analysis. The GHQ-12, QOLS-16, Brief- COPE-28, Lifestyle questions, completed at baseline, week 8 (end of intervention) and week 24 (follow up) were used for the quantitative evaluation. Interviews were conducted with 2 participants after the intervention. Quality of Life was significantly improved in the intervention group from baseline to week 8 (p<.05), mean differences showed that participants used emotional coping to a lesser extent after the intervention, but due to the iv small sample this difference was not significant p>.05, suggesting that future research would be useful to explore this issue with a larger sample, there were no significant differences regarding forms of coping instrumentally after the intervention (p>.05) or general health (p>.05). Qualitative themes identified were: positive shared knowledge and experience, acceptance, coping with SCI and peer support group structure. Meeting peers, being able to share problems, being accepted and feelings of coping were positively reported aspects of the intervention. The findings of the study suggest that the peer support group was both feasible and acceptable. Participants enjoyed attending the groups and felt they benefited from shared knowledge and experiences. QOL in the intervention group improved.