40 ‘ACP, what’s that?’ Exploring public perceptions of advance/anticipatory care planning in research, among citizens and online

Canny, Anne; Mason, Bruce; Atkins, Clare; Patterson, Rebecca; Moussa, Lorna; Boyd, Kirsty

doi:10.1136/spcare-2021-mcrc.40

Cited by 3 publications

(5 citation statements)

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“…The largest proportion of the sample 44% was aged under 50 years (12) with 22% aged between 50-59 (6) and 33% (9) aged between 60 and 84. Over half of the sample was employed (56%) whilst 26% were retired (7). Demographic data were missing for one of the included participants (see Table 2).…”

Section: Resultsmentioning

confidence: 99%

“…(5) Recent research exploring knowledge and public attitudes towards ACP found just 28.5% of participants had heard the term and only 7% had engaged in ACP. (6) Barriers to engagement in ACP discussions have been found to include topics such as death and dying are considered a social taboo, posing an increased risk of distress for loved ones; and (6) a misconception that ACP is only for those at the end of life rather than future planning (7) Therefore, there is a need for a public health approach to ACP to enable and support individuals to engage in conversations about their wishes and make decisions surrounding their future care.…”

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confidence: 99%

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Building public engagement and access to palliative care and advance care planning: a qualitative study

Black,

Hasson,

Slater

et al. 2023

Preprint

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Background Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement is viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. Methods Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. Results Three themes were generated from the data: “Visibility and relatability”; “Embedding opportunities for engagement into everyday life”; “Societal and cultural barriers to open discussion”. Evidence of interaction across all five social ecological model levels were identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. Conclusions Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggest an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

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Section: Resultsmentioning

confidence: 99%

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confidence: 99%

Building public engagement and access to palliative care and advance care planning: a qualitative study

Black,

Hasson,

Slater

et al. 2023

Preprint

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“…Despite advance care planning being embedded in national guidance and having a long history, it is not widely taken up, even amongst older patients and those who have recently been in hospital [24]. This is due to a lack of knowledge and awareness about ACP, and when coupled with misunderstandings and mistrust in the system may particularly impact uptake amongst diverse communities [25]. Advance research planning is a far less familiar concept, and as such it has yet to be fully implemented -even in countries where much rigorous preparatory work has been undertaken with a range of stakeholders, such as in Australia [10,22,26,27].…”

Section: Advance Planning For Health and Carementioning

confidence: 99%

‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE)

Shepherd,

Hood,

Wood

2024

Preprint

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Background Health and care research involving people who lack capacity to consent requires an alternative decision maker to decide whether they participate or not based on their ‘presumed will’. However, this is often unknown. Advance research planning (ARP) is a process for people who anticipate periods of impaired capacity to prospectively express their preferences about research participation and identify who they wish to be involved in future decisions. This may help to extend individuals’ autonomy by ensuring that proxy decisions are based on their actual wishes. This qualitative study aimed to explore stakeholders’ views about the acceptability and feasibility of ARP and identify barriers and facilitators to its implementation in the UK. Methods We conducted semi-structured interviews with 27 researchers, practitioners, and members of the public who had participated in a preceding survey. Interviews were conducted remotely between April and November 2023. Data were analysed thematically. Results Participants were supportive of the concept of ARP, with differing amounts of support for the range of possible ARP activities depending on the context. Six main themes were identified: 1) Planting a seed – creating opportunities to initiate/engage with ARP; 2) One part of the puzzle – using preferences expressed through ARP to inform decisions; 3) Finding the sweet spot – optimising the timing of ARP; 4) More than a piece of paper – finding the best mode for recording preferences; 5) Not shutting the door on an opportunity – minimising the risk of unintended consequences; and 6) Navigating with a compass – principles underpinning ARP to ensure safeguarding and help address inequalities. Participants also identified a number of implementation challenges, and proposed facilitative strategies that might overcome them which included embedding advance research planning in existing future planning processes and research-focused activities. Conclusions This study provides a routemap to implementing ARP in the UK to enable people anticipating impaired capacity to express their preferences about research, thus ensuring greater opportunities for inclusion of this under-served group, and addressing the decisional burden experienced by some family members acting as proxies. Development of interventions and guidance to support ARP is needed, with a focus on ensuring accessibility.

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“…Further work is needed to explore how these new insights can be built on to promote more opportunities for open conversations that are helpful rather than burdensome to both older adults and their families [11].…”

Section: Implications For Futurementioning

confidence: 99%

“…Whilst there has been increasing take up of palliative care from people of ethnic minorities, advance care planning remains unpopular [11,12]. Concerns remain about how to honour individual end-of-life preferences and reduce distress and confusion among surrogate decision makers [12,13].…”

Section: Introductionmentioning

confidence: 99%

Living and Dying between Cultural Traditions in African & Caribbean Heritage Families: A Constructivist Grounded Theory

Souza,

Gillett,

Salifu

et al. 2023

Preprint

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Background Ethnic differences influence end-of-life health behaviours and usage of palliative care. Advance care planning is not widely utilised in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage, a voice not well represented in the current debate on improving end-of-life outcomes. Methods Using Charmaz’s constructivist grounded theory approach, a purposive sample of elders, adult children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted, analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. Results Elders (n = 4), adult children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created with the following constructs: a) Preparing for death but not for dying b) Complexity in traditions crosses oceans c) Living and dying between cultures and traditions d) There is culture, gender and there is personality e) Watching the death of another prompts conversations. f) An experience of Hysteresis. Discussion Preparation for after-death processes is celebrated in African and Caribbean cultures resulting in early exposure and opportunities for discussion of these processes. Migration results in reforming of people’s habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and decisions that need to be made. Conclusions Recognising the role of family and the impact of migration on the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families facing serious illness. A public health approach focused on enabling adult children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

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40 ‘ACP, what’s that?’ Exploring public perceptions of advance/anticipatory care planning in research, among citizens and online

Cited by 3 publications

References 0 publications

Building public engagement and access to palliative care and advance care planning: a qualitative study

Building public engagement and access to palliative care and advance care planning: a qualitative study

‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE)

Living and Dying between Cultural Traditions in African & Caribbean Heritage Families: A Constructivist Grounded Theory

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40 ‘ACP, what’s that?’ Exploring public perceptions of advance/anticipatory care planning in research, among citizens and online

Cited by 3 publications

References 0 publications

Building public engagement and access to palliative care and advance care planning: a qualitative study

Building public engagement and access to palliative care and advance care planning: a qualitative study

‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE)

Living and Dying between Cultural Traditions in African &amp; Caribbean Heritage Families: A Constructivist Grounded Theory

Contact Info

Product

Resources

About

Living and Dying between Cultural Traditions in African & Caribbean Heritage Families: A Constructivist Grounded Theory