Decision coaching for people with kidney failure: A case study

Buur, Louise Engelbrecht; Bekker, Hilary; Mathiesen, Caroline Løntoft; Holm, Lotte Timmerby; Riise, Ida; Finderup, Jeanette; Stacey, Dawn

doi:10.1111/jorc.12459

Cited by 3 publications

(6 citation statements)

References 33 publications

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“…This study aimed to describe the development process of the DESIRE intervention. From investigating users' needs, goals, strengths, limitations, context and intuitive processes we had some idea about which components the intervention should contain (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023), (Karlsson et al, 2023) found several enablers and outcomes from involving relevant stakeholders that were similar to our findings. They found that the researchers' perspective was changed based on the experiences of the patients and relative partners, who had provided the researchers with new knowledge from their specific stakeholder perspectives (Karlsson et al, 2023).…”

Section: Strengths and Limitations Of The Worksupporting

confidence: 68%

“…These were part of the workshop considerations and discussions. In addition, key uncertainties that had been identified prior to the development process (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023) were covered in the workshop discussions, for example, the duration of the SDM conversations and at what point in the illness trajectory a conversation should be offered to patients with kidney failure and their relatives.…”

Section: Methodsmentioning

confidence: 99%

“…This article describes the steps taken to develop an EoLC SDM intervention enabling patients with kidney failure, their relatives, and health professionals to make these difficult decisions together in a timely manner, and is part of a project to develop and evaluate an SDM intervention for use in Danish kidney services (Buur et al, 2022). Our previous research to identify current practice, and the needs of multiple stakeholders, in Denmark, when making shared decisions about EoLC as part of managing kidney failure include: (1) a scoping review investigating and mapping empirical evidence of patient involvement interventions to support patients with kidney failure making EoLC decisions in kidney services (Buur, Bekker, Madsen, et al, 2023); (2) a qualitative interview study investigating the decisional needs of people with kidney failure, their relatives, and health professionals in Denmark when planning EoLC (Buur et al, 2024); and (3) a case study investigating the experiences of people with kidney failure who received decision coaching for EoLC decisions (Buur, Bekker, Mathiesen, et al, 2023). The findings of each study were analysed individually.…”

Section: Previous Research To Understand End Usersmentioning

confidence: 99%

“…Prior to each of the four workshops, the first author prepared a detailed script outlining the various workshop sessions. This included the aim of the workshop, presentations of data collected to support the development process (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023) Suggestions from all participants served as data to inform the development of a prototype of the DESIRE intervention. Analysis of data began in the workshops through a consensus-based decision making process where the entire research group participated in ensuring that all participants had a say in the process.…”

Section: Procedure Data Collection and Analysismentioning

confidence: 99%

“…To inform the development and refining of the DESIRE intervention, the data gathered from the research conducted to understand end users (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023) were used during four multidisciplinary workshops hosted by the first author in September, October, November and December 2022.…”

Section: Engaging Stakeholdersmentioning

confidence: 99%

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Shared decision making for patients with kidney failure to improve end‐of‐life care: Development of the DESIRE intervention

Buur,

Bekker,

Søndergaard

et al. 2024

Journal of Clinical Nursing

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AimTo describe the development of a shared decision making intervention for planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services.BackgroundEnd‐of‐life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End‐of‐life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end‐of‐life conversations. Health professionals report needing more skills to raise the issue of end‐of‐life care options within consultations and patients want to be able to discuss issues important to them about future care plans.MethodsThe development design was guided by the UK Medical Research Council's framework and a user‐centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved.ResultsAreas considered significant to a shared decision making intervention were training of health professionals, conversations about end‐of‐life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations.ConclusionAn intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria.Implications for practiceDESIRE is intended to support shared decision making about planning end‐of‐life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care.ImpactWhat problem did the study address?International guidelines recommend health professionals involve patients with kidney failure in making decisions about end‐of‐life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end‐of‐life care.What were the main findings?The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid.Where and on whom will the research have an impact?The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases.Reporting MethodThis intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist.Patient or Public ContributionPatients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript.

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