Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study

Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop

“…7 Five patient partners and 1 caregiver were engaged in the previous phases of this work, including a scoping review, a survey of chronic kidney disease clinics, analysis of behaviours of patients with chronic kidney disease and caregivers by means of the Theoretical Domains Framework and a qualitative study. 5,6,8,9 This has laid the foundation for the present study. Based on the qualitative study, 8 topic areas were identified -understanding chronic kidney disease, diet, medications, symptoms, finances, mental and physical health, travel and work/school -as well as features including mixed-content formats (e.g., visuals, text, user-generated content).…”

“…4 There is the opportunity to involve patients in the development of self-management support interventions that meet their needs, specifically around the areas of knowledge, how they receive knowledge and timeliness of the information. 5 Traditionally, self-management interventions for patients with chronic kidney disease have included education and support through face-to-face interactions, with minimal use of electronic health (e-health) tools (e.g., websites, mobile apps, short-messaging service). 6 The use of e-health tools, including the Internet, mobile-phone-based apps, computer-based tools and mixed-mode tools, may enhance patient self-management.…”

“…Research created a skeleton persona using quantitative and qualitative data from our prior work including demographic description (e.g., age, diagnosis, hobbies, life experiences), goals (e.g., lifestyle) and challenges (e.g., frustrations, concerns). 5,8 In consultation with our 6 patient partners, using an iterative process, we modified persona features, including names, goals, challenges, technical ability (computer literacy, Internet use/ availability) and health behaviour characteristics (health literacy, support networks, knowledge of health status, readiness for change). The revised personas were reviewed at an inperson research team meeting and were finalized through discussion and agreement.…”

“…presented background information, including results from a scoping review of support interventions for chronic kidney disease self-management, 8 a survey of Canadian chronic kidney disease clinics to identify their resources used 6 and findings of a qualitative study of needs of patients with chronic kidney disease and caregivers. 5 Facilitators moderated 4 heterogeneous small groups (representatives from all stake-holder groups) using a discussion guide (Appendix 2, available at www.cmajopen.ca/content/7/4/E713/suppl/DC1), directing participants to assume a persona lens and provide input regarding the persona's needs for each topic area and e-health feature category. Small-group discussions were captured by a note taker and were also audio recorded.…”

“…The content items identified for each topic area are similar to those from prior literature reviews, including information about understanding chronic kidney disease, medications, lifestyle modification and dietary advice. 16,17 We also considered additional needs that patients and caregivers have identified as important for self-management, 5 including travel, work/school,…”