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Solomon P.1, Salbach N.M.2, O'Brien K.K.2, Nixon S.2, Baxter L.3, Tattle S.4, Gervais N.1
1McMaster University, School of Rehabilitation Sciences, Hamilton, Canada, 2University of Toronto, Physical Therapy, Toronto, Canada, 3Volunteer, Halifax, Canada, 4Realize Canada, Toronto, Canada
Background: As HIV transitions into a chronic illness there is an increased role for physiotherapy and rehabilitation. People living with HIV (PLWH) often lack information about the role and availability of physiotherapy. On-line materials educating PLWH about physiotherapy and strategies for accessing services can be empowering, but need to meet the needs of PLWH.
Purpose: To describe the process and evaluation of adapting an online clinical resource to one suitable and useful for PLWH using a collaborative knowledge translation approach.
Methods: A comprehensive evidence-informed guide on the role of rehabilitation in the management of HIV developed for clinicians was adapted for PLWH using a three phase participatory process. In Phase One, we interviewed 26 clinicians and 16 PLWH to gather recommendations about how to adapt the content and format to benefit PLWH. In Phase Two, the 10 recommendations that emerged from a content analysis of the transcribed interviews informed the adaptation and revision of the clinical resource into the E-Guide on Rehabilitation for PLWH (http://rehabcanhelp.hivandrehab.ca). Phase Three consisted of comprehensive stakeholder review and feedback on the E-Guide. Clinicians were recruited through Realize, (formerly the Canadian Working Group on HIV and Rehabilitation). PLWH and HIV Community Organization staff were recruited through email advertisements and word of mouth. Using a knowledge translation framework each participant reviewed the E-guide, took notes on the adaptability (tailored to patients needs), usability (organization of content), communicability, and relevance (identification of stakeholder needs and values) of the information. Following review, each participant took part in an interview to obtain in-depth information on their perspectives. Interviews were transcribed and we used conventional qualitative content analysis to identify themes related to the participants perceptions. Ethical approval was received from the Research Ethics Board at McMaster University and University of Toronto.
Results: Nine PLWH, four community organization workers, and four clinicians participated in Phase Three. The flexibility, accessibility and easy navigation of the online format were identified as positive features. Consistent feedback suggested the e-guide was too lengthy. Thematic analyses revealed a need for greater understanding of the words disability and rehabilitation. Participants suggested a greater emphasis on a team approach to HIV management and a need for a greater understanding of the differing scopes of practice of rehabilitation professionals. All stakeholders indicated that the e-guide had utility for PLWH, community HIV service organizations and care providers.
Conclusion(s): Involving multiple stakeholders and user groups in the adaptation and evaluation of online patient education resources guided by a knowledge translation framework can assist in meeting patients needs through increasing the relevance, organization and presentation of the content and incorporating patients values and needs.
Implications: To optimize usefulness, online patient education resources need to be adapted and relevant to patient needs. This collaborative approach, with an emphasis on meaningful participation of patients and community, may be of interest to others interested in promoting knowledge translation.
Funding acknowledgements: Work supported by CIHR Knowledge to Action grant. Dr. Nixon and Dr. O´Brien supported by CIHR New Investigator award.
Topic: Oncology, HIV & palliative care
Ethics approval: Approval for this project was provided by REBs at McMaster University, the University of Toronto, and the University of Victoria.
All authors, affiliations and abstracts have been published as submitted.
