Understanding how and under what circumstances decision coaching works for people making healthcare decisions: a realist review

Background - Decision coaching is non-directive support delivered by a trained healthcare provider to help people prepare to actively participate in making healthcare decisions. This study aimed to understand how and under what circumstances decision coaching works for people making healthcare decisions. Methods - We followed the realist review methodology for this study. This study was built on a Cochrane systematic review of the effectiveness of decision coaching interventions for people facing healthcare decisions. It involved six iterative steps: (1) develop the initial program theory; (2) search for evidence; (3) select, appraise, and prioritize studies; (4) extract and organize data; (5) synthesize evidence; and (6) consult stakeholders and draw conclusions. Results - We developed an initial program theory based on decision coaching theories and stakeholder feedback. Of the 2594 citations screened, we prioritized 27 papers for synthesis based on their relevance rating. To refine the program theory, we identified 12 context-mechanism-outcome (CMO) configurations. Essential mechanisms for decision coaching to be initiated include decision coaches’, patients’, and clinicians’ commitments to patients’ involvement in decision making and decision coaches’ knowledge and skills (four CMOs). CMOs during decision coaching are related to the patient (i.e., willing to confide, perceiving their decisional needs are recognized, acquiring knowledge, feeling supported), and the patient-decision coach interaction (i.e., exchanging information, sharing a common understanding of patient’s values) (five CMOs). After decision coaching, the patient’s progress in making or implementing a values-based preferred decision can be facilitated by the decision coach’s advocacy for the patient, and the patient’s deliberation upon options (two CMOs). Leadership support enables decision coaches to have access to essential resources to fulfill their role (one CMOs). Discussion - In the refined program theory, decision coaching works when there is strong leadership support and commitment from decision coaches, clinicians, and patients. Decision coaches need to be capable in coaching, encourage patients’ participation, build a trusting relationship with patients, and act as a liaison between patients and clinicians to facilitate patients’ progress in making or implementing an informed values-based preferred option. More empirical studies, especially qualitative and process evaluation studies, are needed to further refine the program theory

Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids

Background: Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient–professional shared decision-making between dialysis and conservative management treatment pathways. Methods: We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. Results: PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name ‘conservative management’. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. Conclusions: PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice

The value of partnership in patient-driven as well as in researcher-driven projects

Plain English summary Health research often uses patients as either participants or partners. Patients running the research is less common, even though the outcomes might be more important to patients than to anyone else. A medical company started the Kidney Connect project, but invited patients to drive it. The main driving role was planning and conducting data collection and analysis of data for the project. In this commentary, patient representatives describe how they led the project’s work, what went well and what did not go so well for patients. It then compares the project’s results with those from similar work that involved patients as partners but had only researchers in charge. We found that certain things can limit research that is run only by patients, but it has similar results to a project with only researchers in charge

Musical Breaks—Live Music in a Hemodialysis Setting—A Qualitative Study on Patient, Nurse, and Musician Perspectives

The aim of this hermeneutic-phenomenological study was to explore the perspectives of 12 patients, 17 nurses, and 4 musicians on patient-tailored live music interventions in a hemodialysis setting. Twenty-six semi-structured interviews were collected—17 with patients, 9 with nurses. Furthermore, 18 moderate participation observations, whilst 1 semi-structured group interview with 3 nurses and 3 musicians, and 13 reflective journals from musicians were collected. Within the analysis—based on Ricoeur’s theory of interpretation—two overall themes emerged: (1) the inner space and (2) the participating space, followed by five subthemes: (1a) Entering a calm and enjoyable pause bubble; (1b) Resting in a thought-free state of mind; (1c) Traveling in the past and catching the moment through heartfelt music; (2a) Bringing positive changes into life; (2b) The artistic quality mediating a magnificent and beautiful experience. We found that patient-tailored live music was a meaningful break, influencing mental and physical well-being, time perception, community, work environment, and artistic approach. The artistic quality of the music was essential—together with the musicians’ social awareness, empathy, and ability to interact with the patients—in creating meaningful moments for patients and staff. Overall, the music interventions were a welcome change in a predictable world of stressful routines and repetitive treatments.publishedVersio

The experiences of patients with amyotrophic lateral sclerosis of their decision‐making processes to invasive home mechanical ventilation—A qualitative study

Abstract Aim To explore and gain knowledge of the experiences and needs among patients with amyotrophic lateral sclerosis (ALS) of their decision‐making processes whether to choose invasive home mechanical ventilation or not. Design A qualitative study. Methods A phenomenological‐hermeneutic approach influenced by Ricoeur's interpretation theory was used. Seven patients with ALS were interviewed. The Consolidated Criteria for Reporting Qualitative Research checklist was used for reporting. Results Three themes were evident in patients' accounts of the decision‐making process: (1) being taken care of directly after receiving the diagnosis, (2) living in uncertainty about what the future would bring and (3) doubt causing patients with ALS to change their minds. Patients with ALS were burdened with everyday life challenging decision‐making processes about future treatment and doubt caused patients to change their minds about their future treatment. It is necessary to support patients in their decision‐making processes using shared decision‐making. Patient or Public Contribution No Patient or Public Contribution

Guidance and/or Decision Coaching with Patient Decision Aids: Scoping Reviews to Inform the International Patient Decision Aid Standards (IPDAS)

Introduction In 2005, the International Patient Decision Aid Standards (IPDAS) collaboration identified guidance and decision coaching as important dimensions of patient decision aids (PtDAs) and developed a set of quality criteria. We sought to update definitions, theoretical rationale, and evidence for guidance and/or decision coaching used within or alongside PtDAs for the IPDAS update 2.0. Methods We conducted 2 scoping reviews on guidance and decision coaching, including systematic searches and a hand search of the Cochrane Review on PtDAs. Eligible studies were randomized controlled trials (RCTs) on guidance or decision coaching used with/alongside PtDAs. Data, including conceptual models, were summarized narratively and with meta-analyses when appropriate. Results Of 1022 citations, we found no RCTs that evaluated guidance in PtDAs. The 2013 definition for guidance was endorsed, and we made minimal changes to the description of guidance. Of 3039 citations, we identified 21 RCTs on decision coaching informed by 5 conceptual models stating that people exposed to decision coaching are more likely to progress in making informed decisions consistent with their values. Compared to usual care, decision coaching with PtDAs led to improved knowledge mean difference [MD], 19.5/100; 95% confidence interval [CI], 10.0-29.0; 5 RCTs). Compared to decision coaching alone, PtDAs led to a small improvement in knowledge (MD, 3.6/100; 95% CI, 1.0-6.3; 3 RCTs). There were variable effects on other outcomes. We simplified the decision coaching definition slightly and defined minimal decision coaching elements. Conclusion We found no evidence on which to propose changes in guidance in IPDAS. Decision coaching is continuing to be used alongside PtDAs, but there is inadequate evidence on the added effectiveness compared to PtDAs alone. The decision coaching definition was updated with minimal elements