The Codevelopment of "My Kidneys & Me": A Digital Self-management Program for People With Chronic Kidney Disease.

BACKGROUND: Health care self-management is important for people living with nondialysis chronic kidney disease (CKD). However, the few available resources are of variable quality. OBJECTIVE: This work describes the systematic codevelopment of "My Kidneys & Me" (MK&M), a theory-driven and evidence-based digital self-management resource for people with nondialysis CKD, guided by an established process used for the successful development of the diabetes education program MyDESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed, DESMOND). METHODS: A multidisciplinary steering group comprising kidney health care professionals and researchers and specialists in the development of complex interventions and digital health provided expertise in the clinical and psychosocial aspects of CKD, self-management, digital health, and behavior change. A patient and public involvement group helped identify the needs and priorities of MK&M and co-design the resource. MK&M was developed in 2 sequential phases. Phase 1 involved the codevelopment process of the MK&M resource (content and materials), using Intervention Mapping (IM) as a framework. The first 4 IM steps guided the development process: needs assessment was conducted to describe the context of the intervention; intervention outcomes, performance objectives, and behavioral determinants were identified; theory- and evidence-based change methods and practical strategies to deliver change methods were selected; and program components were developed and refined. Phase 2 involved the adoption and adaptation of the existing MyDESMOND digital platform to suit the MK&M resource. RESULTS: The needs assessment identified that individuals with CKD have multiple differing needs and that delivering a self-management program digitally would enable accessible, tailored, and interactive information and support. The intended outcomes of MK&M were to improve and maintain effective self-management behaviors, including physical activity and lifestyle, improve knowledge, promote self-care skills, increase self-efficacy, and enhance well-being. This was achieved through the provision of content and materials designed to increase CKD knowledge and patient activation, reduce health risks, manage symptoms, and improve physical function. Theories and behavior change techniques selected include Self-Management Framework, Capability, Opportunity, Motivation Behavior model components of Behaviour Change Wheel and taxonomy of behavior change techniques, Health Action Process Approach Model, Common Sense Model, and Social Cognitive Theory. The program components developed comprised educational and behavior change sessions, health trackers (eg, monitoring blood pressure, symptoms, and exercise), goal-setting features, and forums for social support. The MyDESMOND digital platform represented an ideal existing platform to host MK&M; thus, the MyDESMOND interface and features were adopted and adapted for MK&M. CONCLUSIONS: Applying the IM framework enabled the systematic application of theory, empirical evidence, and practical perspectives in the codevelopment of MK&M content and materials. Adopting and adapting a preexisting platform provided a cost- and time-efficient approach for developing our digital intervention. In the next stage of work, the efficacy of MK&M in increasing patient activation will be tested in a randomized controlled trial.

Understanding the lived-experience and support-needs of people living with antimicrobial resistance in the UK through interpretative phenomenological analysis.

In the UK nearly 54,000 infections were caused by serious resistant bacteria in 2022 but there is a lack of evidence regarding the long-term impact on patients' lives nor what support they need. This research aimed to answer the question: "What are the key elements of experience and support needs of people living with AMR in the UK?". In-depth semi-structured interviews were undertaken with nine people who had been living with resistant infections or colonisation for 12-months or longer. Interpretive Phenomenological Analysis was used to study the accounts and illustrate individuals' experiences and support-needs. Participants experienced marginalisation and isolation but also empowerment; described across three major themes: (1) I live in fear and stigma: The long-term impact of AMR; (2) I am battling on my own: A journey toward self-advocacy; and (3) I like to share my story: The role of AMR communities. All participants perceived a lack of knowledge, information, and support from clinicians; difficulties accessing reliable and understandable information; and lack of understanding from family and friends. Charities and online groups provided support with coping with their situation and improving mental health and wellbeing. Understandable and relatable information regarding the science of AMR, transmission, prevention, and living with AMR needs to be provided by clinicians and healthcare services around the time of diagnosis to readily available after diagnosis.