Understanding Adults With Chronic Kidney Disease and Their Caregivers’ Self-Management Experiences: A Qualitative Study Using the Theoretical Domains Framework

Abstract

Background: Self-management support interventions are widely accepted in chronic kidney disease (CKD) care; however, interventions rarely consider individual behaviors by incorporating a behavioral theoretical framework. The Theoretical Domains Framework (TDF) can be used to facilitate an understanding of patients and their caregivers’ behaviors to successfully self-manage CKD. Objectives: (1) To understand behaviors of patients with CKD and their caregivers and identify potential intervention approaches to support CKD self-management and (2) to explore relationships between the 14 TDF domains and CKD self-management. Design: Qualitative descriptive study using both content and thematic analysis Setting: Purposive criterion was used to recruit participants from across Canada. Patients: Canadian patients with CKD and their caregivers. Measurements: Focus groups and telephone interviews using a semistructured interview guide. Methods: We conducted a secondary analysis of qualitative data collected from focus groups and telephone interviews from July 2017 to January 2018. Two research team members coded the transcribed data to the 14 TDF domains using a modified approach of the Framework Method. We linked the common TDF domains to relevant intervention functions from the Behaviour Change Wheel (BCW) to identify potential intervention approaches. We also identified and mapped relationships between the relevant TDF domains to report emerging themes. Results: Six focus groups (37 participants) and 11 telephone interview transcripts were analyzed. Five TDF domains that influenced CKD self-management behavior were identified: environmental context and resources, knowledge, beliefs about capabilities, beliefs about consequences, and social influences. Four BCW intervention functions were identified: education, modeling, persuasion, and environmental restructuring. Four emergent themes, shaped by the populated 14 TDF domains, were identified: What does this mean for me? Help me help myself, How does this make me feel? and Who am I? Limitations: The TDF was not used to design the interview guide; therefore, there may be underrepresentation of some TDF domains relevant for self-management. Conclusion: Our findings highlight 5 TDF domains that can influence CKD self-management behavior and 4 possible intervention approaches to influence behavior change in patients with CKD and their caregivers. Emergent themes highlight participants’ interpretation of being diagnosed with CKD, their motivations, feelings, values, and altered identity. This work will inform the codesign of a behavior change intervention to enhance patient self-management of CKD.

The development of a theory informed behaviour change intervention to improve adherence to dietary and physical activity treatment guidelines in individuals with familial hypercholesterolaemia (FH)

“…Twelve of the fourteen domains from the Theoretical Domains Framework (TDF) were found to be relevant to dietary and physical activity behaviours in individuals with FH. These behaviours have been reported to be influenced by several of the same theoretical constructs in research carried out in individuals with other chronic conditions including Type II diabetes [48] and kidney disease [49] and in those at risk of cardiovascular disease [50]. In all cases, multiple theoretical constructs were found to be relevant, demonstrating the multifactorial nature of these behaviours and the importance of considering a wide range of potential influences when developing interventions.…”

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).…”

A Web-Based Self-Management Support Prototype for Adults With Chronic Kidney Disease (My Kidneys My Health): Co-Design and Usability Testing

“…The preferred features included visuals, the ability to enter and track health information and interact with health care providers, on-the-go access, links to resources, and access to personal health information. An axillary study was conducted to assess patient and caregiver barriers and facilitators for the self-management of CKD [ 17 ]. In phase 3a, an environmental scan of CKD self-management websites [ 14 ] identified a gap between web-based applications and our population’s self-management support needs, necessitating the co-design of a website.…”

“…This study is informed by our previous work using a collaborative and systematic approach to determine the best practices for CKD adult self-management support interventions [7,13,[15][16][17]. Specifically, our work is guided by the integrated knowledge translation (IKT) method [18] and the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) patient engagement principles [19].…”