Maoliosa Donald1, Heather Beanlands2, Sharon Straus3, Paul Ronksley4, Helen Tam-Tham5, Juli Finlay5, Jennifer MacKay5, Meghan Elliott1, Gwen Herrington6, Lori Harwood7, Chantel A Large6, Claire L Large6, Blair Waldvogel6, Dwight Sparkes6, Maria Delgado6, Allison Tong8, Allan Grill9, Marta Novak10, Matthew T James11, K Scott Brimble12, Susan Samuel13, Brenda R Hemmelgarn14. 1. Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada. 2. Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario, Canada. 3. Department of Medicine, University of Toronto, Toronto, Ontario, Canada; Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, Ontario, Canada. 4. Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada. 5. Department of Medicine, University of Calgary, Calgary, Alberta, Canada. 6. Can-SOLVE CKD Patient Partner, Vancouver, British Columbia, Canada. 7. London Health Sciences Centre, London, Ontario, Canada. 8. Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia. 9. Department of Family & Community Medicine, University of Toronto, Toronto, Ontario, Canada. 10. Centre for Mental Health, University Health Network and Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada. 11. Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada. 12. Department of Medicine, McMaster University, Hamilton, Ontario, Canada. 13. Department of Pediatrics, University of Calgary, Calgary, Alberta, Canada. 14. Department of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada; Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada. Electronic address: brenda.hemmelgarn@ahs.ca.
Abstract
RATIONALE & OBJECTIVE: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. STUDY DESIGN: Descriptive qualitative study using semi-structured interviews and focus groups. SETTING & PARTICIPANTS: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. ANALYTIC APPROACH: Thematic analysis. RESULTS: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). LIMITATIONS: Participants were primarily white, educated, married, and English speaking, which limits generalizability. CONCLUSIONS: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
RATIONALE & OBJECTIVE: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. STUDY DESIGN: Descriptive qualitative study using semi-structured interviews and focus groups. SETTING & PARTICIPANTS: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. ANALYTIC APPROACH: Thematic analysis. RESULTS: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). LIMITATIONS: Participants were primarily white, educated, married, and English speaking, which limits generalizability. CONCLUSIONS: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.
Authors: Michelle Smekal; Sarah Gil; Maoliosa Donald; Heather Beanlands; Sharon Straus; Gwen Herrington; Dwight Sparkes; Lori Harwood; Allison Tong; Allan Grill; Karen Tu; Blair Waldvogel; Chantel Large; Claire Large; Marta Novak; Matthew James; Meghan Elliott; Maria Delgado; Scott Brimble; Susan Samuel; Brenda R Hemmelgarn Journal: Can J Kidney Health Dis Date: 2019-07-30
Authors: Meghan J Elliott; Shannan Love; Danielle E Fox; Nancy Verdin; Maoliosa Donald; Kate Manns; David Cunningham; Jill Goth; Brenda R Hemmelgarn Journal: BMJ Open Date: 2022-05-12 Impact factor: 3.006