BackgroundRehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI.ObjectiveThe aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions.MethodsUsers were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages.ResultsA total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section.ConclusionsA PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools’ impact on self-efficacy and health.
This study sought to understand patient experiences, benefits, and challenges to osteoporosis care delivered virtually by telemedicine. Telemedicine bridges the access gap to specialized osteoporosis care in remote areas. Improving coordination of investigations, access to allied health members, and future initiatives may improve osteoporosis-related morbidity and mortality in this population. Introduction There is limited research on the role of telemedicine (TM) in the management of osteoporosis (OP). We previously reported that OP patients assessed by TM had a higher prevalence of fragility fractures, co-morbidities, and need for allied health resources than those serviced by the outpatient clinic. The purpose of this study is to understand the experiences, benefits, and challenges associated with receiving OP care by TM from the patient perspective. Methods We adopted a convergent, mixed methods study design whereby both a quantitative component (mailed survey) and qualitative component (30-min telephone interviews) were conducted simultaneously. In addition to reporting survey data, thematic analysis was applied to interview data. Results Participants were comfortable with virtual technology and perceived that their quality of care by TM was comparable to in-person visits. Expressed benefits included the convenience of timely care close to home, reduced burden of travel and costs, and enhanced sense of confidence with being assessed by an osteoporosis specialist. Perceived barriers included poor follow-up with allied health professionals in the TM program (e.g., physiotherapist) and coordination of tests and investigations. Many participants indicated interest in an OP self-management program, with content focusing on diet and lifestyle factors. Conclusion The TM program bridges the access gap for those living with OP in underserviced and remote areas. However, we identified the need to improve the existing processes to better coordinate access to allied health team members and arrangements for investigations. Participants also expressed interest for a virtual osteoporosis self-management program.
Introduction. Evidence of inappropriate bone mineral density (BMD) testing has been identified in terms of overtesting in low risk women and undertesting among patients at high risk. In light of these phenomena, the objective of this study was to understand the referral patterns for BMD testing among Ontario's family physicians (FPs). Methods. A qualitative descriptive approach was adopted. Twenty-two FPs took part in a semi-structured interview lasting approximately 30 minutes. An inductive thematic analysis was performed on the transcribed data in order to understand the referral patterns for BMD testing. Results. We identified a lack of clarity about screening for osteoporosis with a tendency for baseline BMD testing in healthy, postmenopausal women and a lack of clarity on the appropriate age for screening for men in particular. A lack of clarity on appropriate intervals for follow-up testing was also described. Conclusions. These findings lend support to what has been documented at the population level suggesting a tendency among FPs to refer menopausal women (at low risk). Emphasis on referral of high-risk groups as well as men and further clarification and education on the appropriate intervals for follow-up testing is warranted.
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