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      The intricacy of interactions: qualitative exploration of preferences and perceptions of advance care planning among healthcare professionals, patients and those close to them

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          Abstract

          Objectives:

          Advance care planning (ACP) is a way of documenting preferences in case of a change or decline in health via verbal discussion and may include a written document. ACP relates not only to treatment preferences but to all aspects of future care such as place of death, plans for dependents and spiritual beliefs. Research has shown that ACP can have a positive impact but needs further understanding to enhance communication and increase uptake. This article focusses on the importance and intricacy of interactions and why a preference-based approach may be beneficial for the future.

          Methods:

          This article reports two separate, but related, pieces of qualitative research. First, focus groups to evaluate perspectives of healthcare professionals (HCPs) following their attendance at a North Wales ACP training workshop. The second study comprised interviews exploring the views of patients, those close to them and HCPs regarding ACP.

          Results:

          ACP interactions are complex and intricate. There is an association with end of life rather than changes in health among patients and HCPs often view discussions as akin to ‘breaking bad news’. Good communication between patients, loved ones and HCPs is essential to reduce distress and ensure preferences are understood. Trust between patients and HCPs is of high importance and often a patient will have a preferred HCP who they feel comfortable discussing ACP with.

          Conclusion:

          A preference-based approach to ACP has potential to widen participation in ACP, relieve anxiety and ease burden for patients and carers. Further research is needed to identify ways to increase inclusivity.

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          Most cited references13

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          Using framework-based synthesis for conducting reviews of qualitative studies

          Framework analysis is a technique used for data analysis in primary qualitative research. Recent years have seen its being adapted to conduct syntheses of qualitative studies. Framework-based synthesis shows considerable promise in addressing applied policy questions. An innovation in the approach, known as 'best fit' framework synthesis, has been published in BMC Medical Research Methodology this month. It involves reviewers in choosing a conceptual model likely to be suitable for the question of the review, and using it as the basis of their initial coding framework. This framework is then modified in response to the evidence reported in the studies in the reviews, so that the final product is a revised framework that may include both modified factors and new factors that were not anticipated in the original model. 'Best fit' framework-based synthesis may be especially suitable in addressing urgent policy questions where the need for a more fully developed synthesis is balanced by the need for a quick answer. Please see related article: http://www.biomedcentral.com/1471-2288/11/29.
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            Advance care planning conversations with palliative patients: looking through the GP’s eyes

            Background Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences. Methods Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis. Results Four themes were identified: ACP and society, the GP’s perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a ‘hot topic’. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy. Conclusions ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP’s focus on the patient’s direction and the right not to know can be difficult, ACP has to be tailored to each individual patient. Electronic supplementary material The online version of this article (10.1186/s12875-018-0868-5) contains supplementary material, which is available to authorized users.
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              Patient experiences of nurse-facilitated advance care planning in a general practice setting: a qualitative study

              Background Advance care planning (ACP) can offer benefits to patients and their families, especially when delivered in outpatient settings, but uptake remains low. Common barriers for health professionals include a perceived lack of time and adequate training, experience, and confidence in conducting ACP. Patient-reported barriers include a lack of awareness of ACP or discomfort initiating or engaging in discussions about end-of-life. Methods We aimed to explore patients’ perspectives of an ACP intervention designed to address common barriers to uptake in the general practice setting. We provided training and support to doctors and general practice nurses (GPNs) to initiate and lead ACP discussions at their respective practices (2014 to 2015). Following the intervention, we conducted interviews with patients to explore their experience of engaging in ACP in the general practice setting. Thematic analysis was used to inductively code transcripts and identify key themes from semi-structured interviews with patients. Results Six major themes relating to patient experiences of GPN-facilitated ACP were identified: working through ideas, therapeutic relationship with nurses, significance of making wishes known, protecting family from burden, autonomy in decision-making, and challenges of family communication. The patients valued the opportunity to speak about issues that are important to them with the GPN who they found to be compassionate and caring. The patients felt that ACP would lead to significant benefits not only to themselves but also for their family. Despite encouragement to involve other family members, most patients attended the ACP discussions alone or as a couple; many did not see the relevance of their family being involved in the discussions. Some patients felt uncomfortable or reluctant in communicating the results of their discussion with their family. Conclusions With adequate training and support, GPNs are able to initiate and facilitate ACP conversations with patients. Their involvement in ACP can have significant benefits for patients. Psychosocial and relational elements of care are critical to patient satisfaction. Our findings show that some patients may feel uncomfortable or reluctant to communicate the results of their ACP discussions with their family. A future larger study is required to verify the findings of this pilot study.
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                Author and article information

                Contributors
                Role: Data curationRole: Formal analysisRole: InvestigationRole: Project administrationRole: Writing - original draftRole: Writing - review & editing
                Role: Data curationRole: Formal analysisRole: InvestigationRole: Writing - review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: Writing - review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Writing - review & editing
                Role: ConceptualizationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Writing - review & editing
                Journal
                Palliat Care Soc Pract
                Palliat Care Soc Pract
                PCR
                sppcr
                Palliative Care and Social Practice
                SAGE Publications (Sage UK: London, England )
                2632-3524
                30 November 2022
                2022
                : 16
                : 26323524221139879
                Affiliations
                [1-26323524221139879]Bangor Institute of Health and Medical Research, Bangor University, Cambrian 2, Wrexham Technology Park, Wrexham LL13 7YP, UK
                [2-26323524221139879]Betsi Cadwaladr University Health Board, North Wales, UK
                [3-26323524221139879]Betsi Cadwaladr University Health Board, North Wales, UK
                [4-26323524221139879]Bangor Institute for Health and Medical Research, Bangor University, Wrexham, UK
                [5-26323524221139879]Betsi Cadwaladr University Health Board, North Wales, UK
                [6-26323524221139879]Bangor Institute for Health and Medical Research, Bangor University, Wrexham, UK
                Author notes
                Author information
                https://orcid.org/0000-0002-2112-1368
                Article
                10.1177_26323524221139879
                10.1177/26323524221139879
                9716444
                36466760
                d01329de-d449-488f-a33b-95971eec022b
                © The Author(s) 2022

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 27 May 2022
                : 31 October 2022
                Funding
                Funded by: Betsi Cadwaladr University Health Board, FundRef https://doi.org/10.13039/100013483;
                Categories
                Original Research
                Custom metadata
                January-December 2022
                ts1

                advance care planning,health interactions,health personnel,palliative care

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