Telephone peer support group program for women with spinal cord injury living in small communities and rural areas in Ontario : participants’ perspectives
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This study was born out of the Telephone Peer Support Group Program for Women with Spinal Cord Injury Living in Small Communities and Rural Areas in Ontario, funded by the Ontario Neurotrauma Foundation. It represents the final chapter in the evaluation process of this innovative and participatory program, which produced positive results for a majority of women who took part in it. A phenomenological approach according to Moustakas was used to deepen the understanding and describe the participants’ experience of the program. The seven women who took part in the program contributed their narratives. Emotional support and learning were the main structures of the experience as reported by the women. The program was a space where participants gave and received emotional support through sharing, connecting and exchange. Participants who differed from the majority in the group because of the nature of their injury did not benefit as much from the program. For true peers, the program was a space of “real understanding” and learning in which participants’ perceptions of self were shaped and new identities found, where loneliness was replaced with the feeling of belonging and “not being alone”. It was the space where the bodily aspects of SCI and the socially constructed roles of women were examined, where solutions for health and lifestyle issues were discussed and embraced, and where relationships with others developed into the positive interactions of informed and empowered individuals. The women with SCI attributed changes in their attitudes and behaviours to participation in this program. Reported changes ranged from increased knowledge about a proactive and healthy lifestyle, to completed annual medical check-ups, changed pain treatment, changed dietary and exercise regimes, to the establishment of a web-site with information about a healthy and proactive life for women with SCI. For the majority of participants in this program, it was an enriching and life changing experience which has a huge potential for reaching isolated women with SCI. For service providers, the program was an opportunity to provide services to underserved populations, impacting their quality of life by using cheap and accessible technology. For participatory researchers it was a rewarding experience of seeing immediate benefits reported by satisfied research participants.