How participatory action research changed our view of the challenges of shared decision-making training

Ammentorp, Jette; Wolderslund, Maiken; Timmermann, Connie; Larsen, Henry; Steffensen, Karina Dahl; Nielsen, Annegrethe; Lau, Marianne Engelbrecht; Winther, Bodil; Jensen, Lars Henrik; Hvidt, Elisabeth Assing; Hvidt, Niels Christian; Gulbrandsen, Pål

doi:10.1016/j.pec.2017.11.002

Cited by 18 publications

(25 citation statements)

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“…Although the missing information might give some patients hope, it may also prevent the ability to reflect upon the consequences of the course of the disease and thereby also hinder decisions that take the reality into account . If health care professionals are to help patients in this process, they need to have a clear understanding of the patient's suffering as it is experienced by the patient and not as assessed by the health care professionals .…”

Section: Discussionmentioning

confidence: 99%

“…Denial of death can be self‐preservation and can help patients manage existential crises . However, it can be a challenge for health care professionals to relate to and to talk about existential issues if they are not used to relating to and talking about their own feelings with regard to, for example, their own death . Consequently, one of the main challenges when involving patients in treatment‐related decisions close to end of life seems to be the health care professionals’ ability to adjust the information and communication about the treatment and cure at a time when the patient is going through an existential crisis.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, it could be beneficial to include health care professionals’ experiences with decision‐making in future research. In addition to exploring health care professionals’ experiences through qualitative methods, the next step approaching whole person care in treatment decision‐making could be intervention studies working with health care professionals’ existential issues via self‐reflection exercises and coaching .…”

Section: Discussionmentioning

confidence: 99%

“…The recent literature on SDM suggests that medical decision‐making in the future should focus more on the person and the entire process of decision‐making and not on a single medical encounter itself . Furthermore, the literature reveals that one of the main barriers is that many health care professionals often struggle with addressing existential issues and that implementing shared decision‐making requires helping doctors to acknowledge these existential issues .…”

Section: Introductionmentioning

confidence: 99%

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What matters in clinical trial decision‐making: a systematic review of interviews exploring cancer patients’ experiences

Gregersen

Birkelund

Wolderslund

et al. 2019

Scandinavian Caring Sciences

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Background Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life‐prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. Aim To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision‐making process. Method A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. Results Eleven full‐text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment‐related decisions close to the end of life? This review has shown that existential matters are important in the decision‐making and that addressing these might be of great importance in medical decision‐making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. Conclusion This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients’ decision‐making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals’ experiences when going in depth with decision‐making, with a focus on the existential matters and uncertainties of the health care professionals.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

What matters in clinical trial decision‐making: a systematic review of interviews exploring cancer patients’ experiences

Gregersen

Birkelund

Wolderslund

et al. 2019

Scandinavian Caring Sciences

Self Cite

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“…There are a number of well-documented barriers to SDM, such as time constraints, resource limitations, clinicians' attitudes, and lack of understanding about the relevance and applicability of SDM [21,24,25,[27][28][29][30]. Furthermore, in addition to a lack of knowledge, many clinicians have not been trained with the relational and communication skills required for SDM [13,[31][32][33][34]. SDM requires high-level communication that involves tailoring information to the individual patients' needs, empowering and coaching patients in constructing a treatment preference, and dealing with patients' emotions [29,31,33,35,36].…”

Section: Introductionmentioning

confidence: 99%

Training Interventions to Equip Health Care Professionals With Shared Decision-Making Skills: A Systematic Scoping Review

Coates

Teena

2020

J Contin Educ Health Prof

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Despite numerous initiatives to increase SDM worldwide, SDM has not yet been widely implemented in clinical practice. A key barrier to SDM is that many health professionals have not been trained with the relational and communication skills required for SDM. To support the development and implementation of SDM training programs, this paper maps the evidence in relation to SDM training programs for health professionals and students, in terms of training design and content as well as evaluation outcomes. Method:Using a systematic scoping review methodology, quantitative and qualitative evidence were systematically considered to map the literature in relation to SDM training. To identify studies, the databases PubMed, Medline and CINAHL were searched from 2009 to 2019 and reference lists of included studies were examined. Articles were reviewed for inclusion by both authors, and data was extracted using a purposely designed form. Results:The review identified 49 studies evaluating 36 unique training programs, of which 18 were for health professionals in tertiary settings, 10 in primary care and 8 for students. Most programs were evaluated descriptively, mostly using mixed methods, and there were 18 RCTs. There was considerable variation in terms of the design and duration of programs. Most programs included an overview of SDM theories and key competencies, and included SDM skill development through role plays. Few or no programs provided training in reflective practice, in identifying and working with patients' individually preferred decision-making style, or in relation to SDM in a context of medical uncertainty or ambiguity. Overall training was feasible, well received, and improved participants' knowledge and skills, but limited in its impact on patients. Conclusion:While given the diversity in training programs and evaluation methods used this review is limited in its ability to comment on which types of training programs are more effective than others, there remains a need for longer-term and more in-depth training to embed SDM in practice. Eligibility criteria As per Table 1, studies relevant to the implementation and effectiveness and of training interventions were included (see Table 1).Insert Table 1: Inclusion and Exclusion.Table 1: Inclusion and exclusion criteria Inclusion criteria Exclusion criteria Studies about the implementation and/or evaluation of SDM training for health professionals and/or students/trainees/residents, including interventions in the use of decision aids Studies about SDM training for patients only, or the implementation of SDM without a specific training program Studies in relation communication training programs that include SDM as a core component Studies in relation to communication training more broadly, without a SDM component Primary qualitative, quantitative (descriptive and analytic) and mixed method studies Literature reviews, opinion pieces Published in peer reviewed journals Non-peer reviewed studies, conference papers and study protocols Published between 2009 and March...

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Improvising in Research: Drawing on Theater Practices

Larsen,

Nielsen

2024

Contributions to Management Science

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How participatory action research changed our view of the challenges of shared decision-making training

Abstract: Before integrating new communication concepts such as SDM in communication training, research methods such as PAR can be used to improve understanding and identify the needs and priorities of both patients and health professionals.

Cited by 18 publications

References 50 publications

What matters in clinical trial decision‐making: a systematic review of interviews exploring cancer patients’ experiences

What matters in clinical trial decision‐making: a systematic review of interviews exploring cancer patients’ experiences

Training Interventions to Equip Health Care Professionals With Shared Decision-Making Skills: A Systematic Scoping Review

Improvising in Research: Drawing on Theater Practices

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