Self-management for YAs with CKD
Research type
Research Study
Full title
A person-centred, theory-based self-management intervention specific to young adults (YAs) living with Chronic Kidney Disease (CKD) stages 1 to 5 in Wales. A systematic review and mixed-methods study
IRAS ID
266183
Contact name
Sherill Snelgrove
Contact email
Sponsor organisation
Swansea University
Duration of Study in the UK
0 years, 10 months, 1 days
Research summary
Chronic Kidney Disease (CKD) is a leading cause of mortality and morbidity and a significant, continuously increasing health concern in the UK and globally. Ethical review is requested here for phase 2 of a multi-phase study involving 4 phases. Phase 1 involves a systematic literature review to establish key factors of the existing CKD self-management interventions. Phase 2 for which ethical review is being requested, aims to identify existing self-management behaviours among young adults (YAs) living with CKD stages 1 to 5 in Wales through collection of qualitative (focus groups or individual interviews) and quantitative (questionnaires) data. Phase 3 will involve the development of a self-management intervention based on findings from phase 1 and 2. Finally, phase 4 will aim to assess the feasibility, accessibility, and potential effectiveness of the proposed self-management intervention for YAs living with CKD through collection of qualitative and quantitative data. Additionally, Phase 2 addresses the following question: Among YAs living with CKD stages 1 to 5 in Wales, what aspects of the existing CKD self-management interventions need improvement and what additional aspects may they benefit from? This research seeks to collect qualitative and quantitative data from four groups of participants, including YAs, and their guardians, caregivers and health-care professionals (HCPs) to understand their views and experiences of current self-management behaviours in order to inform the development of a novel person-centred self-management intervention.
Summary of Results
Chronic Kidney Disease (CKD) is a growing health concern, especially among young adults (YAs) who face unique challenges due to the complexity of CKD management and major life transitions. According to Kidney Research (2023), healthcare interventions, including self-management interventions (SMIs), can save thousands of lives in the next 10 years. The current study, funded by the Swansea University and Kidney Wales Foundation, aimed to fill the gap in support for this vulnerable group by understanding how CKD affects their lives and developing a targeted intervention. This multi-phase study focused on developing an intervention tailored to YAs (18-35 years old) with CKD stages 1-5, guided by French et al.’ (2012) four-step approach. The Rapid Evidence Assessment in Phase 1 reviewed existing literature on CKD SMIs, informing the identification of key elements. Phase 2 involved a mixture of quantitative (questionnaire-based study) and qualitative (semi-structured interviews) data collection from YAs and their health and social care professionals to understand existing self-management behaviours and gaps, guiding the development of a novel intervention in phase 3.
A total of 28 participants, including 18 YAs and 10 health and social care professionals, participated in the questionnaire-based study (online survey). Nine participants (four YAs and five professionals) took further part in semi-structured interviews (via Zoom videoconference). Phases 1 and 2 served as a needs assessment for phase 3, providing insights into intervention objectives and realistic goals. The literature review in phase 1 identified a lack of personalised, theory-based interventions, and highlighted the effectiveness of SMIs in improving self-efficacy. Findings from surveys and interviews in phase 2 revealed unmet needs, the impact of social factors, psychological issues, and inconsistent care for YAs with CKD.
Building on insights from previous phases, the intervention addressed modifiable barriers and enablers specific to the recognised target behaviour. YAs demonstrated proficiency in daily self-care but faced psychosocial challenges, including anxiety and a lack of social connections and support. Further assessment of the problem, which involved consideration of the theory of change and behaviour change theories and approaches, identified the need to improve YAs’ participation in social activities while considering their unique challenges and needs. Consequently, the intervention focused on enhancing communication and self-advocacy skills to address social challenges. Three key areas were targeted: 1) communicating individual needs and worries related to CKD, 2) handling social perception and influence, and 3) seeking emotional support when required. This highly tailored, theory-based, novel intervention aimed to bridge the evidence gap recognised in the previous phases, providing a comprehensive approach to fostering social participation in the context of CKD.
The intervention development in phase 3 resulted in highly tailored to YAs with CKD, theory-based, structured workshops offering optimal psychosocial support by improving YAs’ communication and self-advocacy skills in three diverse social aspects. Thus, this study addressed the lack of support for YAs with CKD, resulting in a promising, personalised, theory-based intervention, targeting the specific challenges and preferences of this demographic. The novel intervention aims to improve self-management practices and overall well-being by fostering social engagement in the context of CKD. It holds a promise by offering a conceptual basis for understanding how it may work and a flexible and adaptive approach to its delivery, however, its future implication and evaluation are needed to assess its feasibility in real-world settings and capture changes over time.REC name
East Midlands - Derby Research Ethics Committee
REC reference
19/EM/0339
Date of REC Opinion
18 Dec 2019
REC opinion
Further Information Favourable Opinion