Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

Pollock, Kristian; Bulli, Francesco; Caswell, Glenys; Kodba-Čeh, H.; Lunder, Urs̆ka; Miccinesi, Guido; Seymour, Jane; Toccafondi, A.; Delden, Johannes J. M. van; Zwakman, Marieke; Rietjens, Judith; Heide, Agnes van der

doi:10.1080/13576275.2022.2107424

Cited by 7 publications

(4 citation statements)

References 57 publications

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“…Furthermore, our results showed that the relatives found the conversation valuable in regard to talking about other important matters relating to EOL. This finding is supported by the study by Pollock et al (2022), who found that ACP conversations could provide an opportunity for a dialogue between the patients and their relatives and help them make decisions for the future.…”

Section: Discussionmentioning

confidence: 64%

“Gives peace of mind” – Relatives’ perspectives of end-of-life conversations

Smith,

Brøchner,

Nedergaard

et al. 2023

Pall Supp Care

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Objectives Planning for end-of-life (EOL) and future treatment and care through advance care planning (ACP) is being increasingly implemented in different healthcare settings, and interest in ACP is growing. Several studies have emphasized the importance of relatives participating in conversations about wishes for EOL and being included in the process. Likewise, research has highlighted how relatives can be a valuable resource in an emergency setting. Although relatives have a significant role, few studies have investigated their perspectives of ACP and EOL conversations. This study explores relatives’ experiences of the benefits and disadvantages of having conversations about wishes for EOL treatment. Methods Semi-structured telephone interviews were held with 29 relatives who had participated in a conversation about EOL wishes with a patient and physician 2 years prior in a variety of Danish healthcare settings. The relatives were interviewed between September 2020 and June 2022. Content analysis was performed on the qualitative data. Results The interviews revealed two themes: “gives peace of mind” and “enables more openness and common understanding of EOL.” Relatives found that conversations about EOL could help assure that patients were heard and enhance their autonomy. These conversations relieved the relatives of responsibility by clarifying or confirming the patients’ wishes, and they also made the relatives reflect on their own wishes for EOL. Moreover, they helped patients and relatives address other issues regarding EOL and made wishes more visible across settings. Significance of results The results indicate that conducting conversations about wishes for EOL treatment and having relatives participate in those conversations were perceived as beneficial for both relatives and patients. Involving relatives in ACP should be prioritized by physicians and healthcare personnel when holding conversations about EOL.

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Section: Discussionmentioning

confidence: 64%

“Gives peace of mind” – Relatives’ perspectives of end-of-life conversations

Smith,

Brøchner,

Nedergaard

et al. 2023

Pall Supp Care

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show abstract

“…This was also found in other studies, in which patients or family carers did not want to distress or alarm each other. [46][47][48] Interestingly, our study showed the persons with amyotrophic lateral sclerosis and family carers also tried to protect themselves from burdensome emotions by not talking about the future which often manifested itself in living by a "day-by-day attitude," prioritizing current care management and quality of life over longterm planning. It was observed that some family carers experienced increasing anxiety over time, particularly when unable to share their concerns with others, highlighting the importance of involving them in advance care planning conversations.…”

Section: Interpretation Of the Main Findingsmentioning

confidence: 86%

“…This was also found in other studies, in which patients or family carers did not want to distress or alarm each other. 46 –48…”

Section: Discussionmentioning

confidence: 99%

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers

Vandenbogaerde,

Van den Block,

Deliens

et al. 2024

Palliat Med

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Background: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. Aim: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers—and if, when, how, and why these experiences change over time. Design: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. Setting/participants: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. Results: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. Conclusion: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals’ thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

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“…The ACTION qualitative study explored patient and family experience of receiving the ACTION RC ACP intervention and their perspectives on ACP (Pollock et al, 2022 ). This present paper reports on how taking part in the ACTION RC ACP intervention may support hope as one of the secondary objectives of the ACTION qualitative study.…”

Section: Methodsmentioning

confidence: 99%

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial

Kodba-Čeh

Lunder

Bulli³

et al. 2022

European J Cancer Care

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Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods:In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question.Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion:Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice.

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Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

Cited by 7 publications

References 57 publications

“Gives peace of mind” – Relatives’ perspectives of end-of-life conversations

“Gives peace of mind” – Relatives’ perspectives of end-of-life conversations

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial

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