Abstract
OBJECTIVES: To describe the structure of informal networks for individuals with spinal cord injury (SCI) living in the community, to understand the quality of relationship of informal networks, and to understand the role of informal networks in the prevention and management of secondary health conditions (SHCs). DESIGN: Mixed-method descriptive study. SETTING: Ontario, Canada Participants: Community-dwelling adults with an SCI living in Ontario Interventions/methods: The Arizona Social Support Interview Survey was used to measure social networks. Participants were asked the following open-ended questions: (1) What have been your experiences with your health care in the community? (2) What have been your experiences with care related to prevention and/or management of SHCs?, (3)What has been the role of your informal social networks (friends/family) related to SHCs? RESULTS: Fourteen key informant interviews were conducted (6 men, 8 women). The overall median for available informal networks was 11.0 persons (range 3-19). The informal network engaged in the following roles: (1) advice/validating concerns; (2) knowledge brokers; (3) advocacy; (4) preventing SHCs; (5) assisting with finances; and (6) managing SHCs. Participants described their informal networks as a "secondary team"; a critical and essential force in dealing with SHCs. CONCLUSIONS: While networks are smaller for persons with SCI compared with the general population, these ties seems to be strong, which is essential when the roles involve a level of trust, certainty, tacit knowledge, and flexibility. These informal networks serve as essential key players in filling the gaps that exist within the formal health care system.