Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers

Hutchison, Lauren; Raffin-Bouchal, Donna S; Syme, Charlotte Ann; Biondo, Patricia; Simon, Jessica

doi:10.1177/1742395316675023

Cited by 22 publications

(58 citation statements)

References 29 publications

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“… 236 288 289 Family members felt ACP was necessary as a means to protect patients. 290–292 At the end of life, maintaining control was a struggle with respect to autonomy and dignity. 134 136 205 251 Patients based their dialysis withdrawal or non-acceptance decision on having lived a full life, on nature taking its course, on their fear of being a burden for their families, their bodies being invaded and dialysis accelerating death.…”

Section: Resultsmentioning

confidence: 99%

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies

et al. 2018

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IntroductionChronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT).MethodsSystematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories.ResultsSearches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem.ConclusionsBeing a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers’ lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients’ trajectories and contribute towards a better illness experience for those living with CKD.PROSPERO registration numberCRD42014014547.

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Section: Resultsmentioning

confidence: 99%

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies

et al. 2018

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“…Due to the sensitive nature of these topics, both healthcare providers and cancer patients consider readiness for ACP an important factor when deciding whether or not to engage in an ACP conversation. Some studies have defined readiness as being prepared for action [17] or being willing to engage in a discussion about one's values and wishes with one's family and HCP [16,18,19]. Studies of ACP based on these definitions often consider readiness as a prerequisite for a conversation.…”

Section: Introductionmentioning

confidence: 99%

Unraveling patients’ readiness in advance care planning conversations: a qualitative study as part of the ACTION Study

Zwakman

Milota

Heide

et al. 2020

Support Care Cancer

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Purpose Patients’ readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals’ uncertainty about patients’ readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients’ readiness is expressed and develops throughout an ACP conversation. Methods A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. Results All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. Conclusion Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

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“…9 The barriers and facilitating actions that nonprofits identified in our study as 'most important' were also found to be important in studies focusing on the perspectives of the public. 12,[17][18][19][20][21][22] As we developed the options in the survey from the literature, it makes sense that our findings supported the existing literature. A 2019 survey of the Canadian public, with provincial breakdowns, resulted in similar 'top' barriers and facilitating actions for British Columbia;…”

Section: Discussionmentioning

confidence: 74%

“…The question about barriers to ACP included a list of 15 items representing the most frequently mentioned barriers in recent Canadian literature from a patient/ caregiver perspective. 10,[16][17][18][19][20][21][22][23][24] For details about this literature search, please see Appendix SA. We restricted our search to Canadian literature to maximize its applicability to our population.…”

Section: Survey Designmentioning

confidence: 99%

Part of the solution: A survey of community organisation perspectives on barriers and facilitating actions to Advance Care Planning in British Columbia, Canada

Siden

Carter

Barwich

et al. 2021

Health Expectations

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Background: Despite the established benefits of Advance Care Planning (ACP), engagement remains low in British Columbia. Since 2016, a growing number of community-based nonprofits have offered ACP education. To date, no study has focused on the perspectives of nonprofits on ACP in British Columbia.Objective: This study aimed to identify barriers and facilitating actions to ACP as perceived by British Columbian nonprofits.Design: A mixed-methods design was used. Data were collected through online surveys and telephone interviews.Setting and Participants: Staff and volunteers from British Columbian nonprofits that are providing or interested in providing public education on ACP were recruited for this study. Results:The lack of public awareness of ACP, the emotional difficulty of the conversation, the complicated ACP process, the belief that ACP is synonymous with completing a medical order form, the challenge of introducing ACP in different cultural contexts and the siloed approach to ACP education were rated as the most important barriers to ACP engagement. The most important facilitating actions were developing clear messages, improving ACP literacy, reframing ACP as part of life planning, simplifying ACP documentation and transfer, integrating ACP conversations into clinical practice and better collaboration between the health system and nonprofits.Discussion: This study identifies numerous opportunities to improve ACP engagement in British Columbia from a community lens. To maximize ACP engagement, community-led ACP education should be offered in coordination with the health system. Conclusion:Community-led ACP education as well as collaboration and consultation with nonprofits are part of the solution to the low ACP engagement in British Columbia.

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Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers

Cited by 22 publications

References 29 publications

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies

Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies

Unraveling patients’ readiness in advance care planning conversations: a qualitative study as part of the ACTION Study

Part of the solution: A survey of community organisation perspectives on barriers and facilitating actions to Advance Care Planning in British Columbia, Canada

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