Peer education for advance care planning: volunteers’ perspectives on training and community engagement activities

Background Peer education by volunteers may aid attitudinal change, but there is little understanding of factors assisting the preparation of peer educators. This study contributes to conceptual understandings of how volunteers may be prepared to work as peer educators by drawing on an evaluation of a training programme for peer education for advance care planning (ACP). Objectives To report on volunteers’ perspectives on the peer education training programme, their feelings about assuming the role of volunteer peer educators and the community engagement activities with which they engaged during the year after training. To examine broader implications for peer education. Design Participatory action research employing mixed methods of data collection. Participants Twenty‐four older volunteers and eight health and social care staff. Data collection methods Evaluative data were gathered from information provided during and at the end of training, a follow‐up survey 4 months post‐training; interviews and focus groups 6 and 12 months post‐training. Findings Volunteers’ personal aims ranged from working within their communities to using what they had learnt within their own families. The personal impact of peer education was considerable. Two‐thirds of volunteers reported community peer education activities 1 year after the training. Those who identified strongly with a community group had the most success. Conclusion We reflect on the extent to which the programme aided the development of ‘critical consciousness’ among the volunteers: a key factor in successful peer education programmes. More research is needed about the impact on uptake of ACP in communities.     

Willingness to complete advance directives among low‐income older adults living in the USA

This study explored low‐income older adults' willingness to (i) complete advance directives, legal documents, whereby an individual designates decision‐makers in the event that they cannot make their own decisions about end‐of‐life treatment preferences, and (ii) the role of social support and other predictors that impact their willingness. This study was conducted as part of a larger study exploring behaviours of advance care planning among low‐income older adults. Out of a total of 255 participants from the original study, this study included 204 participants who did not complete an advance directive for data analysis. A cross‐sectional study using probability random sampling stratified by ethnicity was used. Older adults residing in two supportive housing facilities or who were members of a senior centre in San Diego, California, USA, were interviewed in person between December 2010 and April 2011. Hierarchical logistic regression analysis revealed that the majority of participants (72.1%) were willing to complete advance directives and the factors significantly predicting willingness to complete included self‐rated health, attitudes towards advance decision‐making and social support. Participants with a poorer health status (OR = 1.43, 95% CI = 1.07–1.90) were more willing to complete advance directives. Conversely, participants with higher positive attitudes (OR = 1.18, 95% CI = 1.00–1.39) and greater social support (OR = 1.07, 95% CI = 1.00–1.15) were also more willing to complete advance directives. The findings suggest the importance of ongoing support from healthcare professionals in end‐of‐life care planning. Healthcare professionals can be a source of support assisting older adults in planning end‐of‐life care. Initiating ongoing communication regarding personal value and preference for end‐of‐life care, providing relevant information and evaluating willingness to complete as well as assisting in the actual completion of advance directives will be necessary.     

Consensus views on advance care planning for dementia: a Delphi study

The uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three‐round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty‐two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of ‘certain possibilities’. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not.     

Advance care planning for Māori,Pacific and Asian people: the views of New Zealand healthcare professionals

Despite the benefits of advance care planning (ACP), international research has suggested that in pluralistic and multicultural societies such as New Zealand, significant differences exist in the uptake of ACP between European‐based populations and other cultural groups [Crawley (2005)]. The purpose of this study was to therefore explore the views of generalist palliative care providers in both the community and hospital settings regarding the barriers to ACP adoption as well as methods to increase knowledge about ACP among Māori, Pacific and Asian cultural groups within New Zealand society. Eleven individual interviews, two joint interviews and three focus groups were conducted with health and social care professionals with a wide range of knowledge and experience in palliative care. Challenges were related to a number of issues based on culture, including family decision‐making style, a need to ‘do everything’ and a reluctance to discuss issues surrounding dying and death. Suggestions to increase the knowledge of ACP included techniques to improve information access and the utilisation of shared norms and values to assist with discussions between Māori, Pacific and Asian health professionals and their patients and families/whānau. Findings indicate a need for more family/whānau‐centred models of ACP, addressed much earlier in the healthcare process and within the community setting.     

Conducting an advance care planning group among older adults living in residential care homes: An initiative of social workers in Hong Kong

This study aimed to examine the effects of an advance care planning (ACP) group which was developed by social workers in Hong Kong for older adults. A quasi-experimental study was conducted. Participants were recruited from 14 residential care homes. The ACP intervention group included 59 participants for analyses, and the control group 58. Three major outcomes were measured at two time points: (a) Quality-of-life concerns, (b) End-of-life preference and (c) Advance directive (AD)-related outcomes (awareness of AD, AD completion, willingness to complete AD and communication with family members about AD). Findings indicate that the ACP group enhanced participants’ awareness of AD compared with the control group. Participants were also more willing to complete AD, and more participants communicated with family members about AD after participating in the ACP group. No significant difference was found in other outcomes. This study demonstrates the efforts of social workers in promoting ACP in Hong Kong and the effectiveness of an ACP group for enhancing older adults’ awareness of AD. Findings support the role of social workers in promoting ACP for deprived groups, like frail older adults. The ACP group could be considered a first step in enhancing older adults’ awareness of and willingness to discuss end-of-life issues. Further follow-up is required to develop individualised ACP for older adults.     

LGBT people's knowledge of and preparedness to discuss end‐of‐life care planning options

Despite the devastating impact of HIV/AIDS, end‐of‐life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under‐researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end‐of‐life care. The focus of this paper is their preparedness to discuss with healthcare providers any end‐of‐life care plans. The results highlight that while the majority of respondents were aware of three of the four key end‐of‐life care planning options available in New South Wales – enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives) – a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end‐of‐life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end‐of‐life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients.     

Exploring the cost-effectiveness of advance care planning (by taking a family carer perspective): Findings of an economic modelling study

Advance care planning is considered an important part of high-quality end-of-life care. Its cost-effectiveness is currently unknown. In this study, we explore the cost-effectiveness of a strategy, in which advance care planning is offered systematically to older people at the end-of-life compared with standard care. We conducted decision-analytic modelling. The perspective was health and social care and the time horizon was 1 year. Outcomes included were quality-adjusted life years as they referred to the surviving carers. Data sources included published studies, national statistics and expert views. Average total cost in the advance care planning versus standard care group was £3,739 versus £3,069. The quality-adjusted life year gain to carers was 0.03 for the intervention in comparison with the standard care group. Based on carer's health-related quality-of-life, the average cost per quality-adjusted life year was £18,965. The probability that the intervention was cost-effective was 55% (70%) at a cost per quality-adjusted life year threshold of £20,000 (£30,000). Conducting cost-effectiveness analysis for advance care planning is challenging due to uncertainties in practice and research, such as a lack of agreement on how advance care planning should be provided and by whom (which influences its costs), and about relevant beneficiary groups (which influences its outcomes). However, even when assuming relatively high costs for the delivery of advance care planning and only one beneficiary group, namely, family carers, our analysis showed that advance care planning was probably cost-effective.     

Challenges to developing diabetes self‐management skills in a low‐income sample in North Carolina,USA

High rates of diabetes diagnosis and poor diabetes outcomes are particularly significant in low‐income, socially disadvantaged populations. Although many social and economic predictors of poor self‐management outcomes are known, few studies have examined how these elements impact the ability to develop self‐management capacities in low‐income populations. This article presents new insights into low‐income women's challenges and successes to becoming more adept self‐managers. Interview data were collected in 2012 with a sample of low‐income, middle‐age women with type II diabetes recruited from a non‐profit medical clinic serving low‐income clients in North Carolina, United States. Data were analysed using a grounded theory approach. Developing self‐management skills within disadvantaged life contexts involved negotiating three related, overlapping sub‐processes: negotiating access to care systems, negotiating disruptions to diabetes self‐management patterns, and negotiating self‐care knowledge. Developing diabetes self‐management skills is a long and arduous process. Data and analysis presented here help explain how disadvantaged life contexts can impact self‐managers' efforts to develop self‐management skills and why continued support is important for reducing and preventing future problems. These initial findings suggest that future studies and intervention development on the topic are warranted.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

Cultural adaptation of a community‐based advance serious illness planning decision aid to the Quebec context involving end‐users

IntroductionTraditional advance care planning focuses on end‐of‐life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the ‘death’ outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision‐makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French‐speaking Canadian province.MethodsWe engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified.ResultsWe engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating ‘getting the medical care that''s right for you’ when referring to the PWG''s goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term ‘machines’ to describe life‐sustaining treatments was also deliberated.ConclusionOur collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user‐friendly this French adaptation of the PWG is in various Canadian French‐speaking environments requires further study.ContributionWe organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.     

Optimizing the role of social workers in advance care planning within an academic hospital: an educational intervention program

Advance Care Planning (ACP) promotes communication to help patients express future health-care preferences and goals for their medical care. Social workers (SWs) are trained to facilitate complex conversations and assist in various ACP tasks across clinical settings. This three-part mixed-method interventional study implemented a comprehensive education and training program for SWs of a large academic hospital, which used pre- and post-training evaluations, chart review, and qualitative data from debrief sessions to examine ACP skills and confidence, and assess the number of ACP conversations initiated with patients. Self-reported level of preparation to facilitate ACP conversations improved significantly (n = 26; pre 36% versus post 82%; p < .05). A 4-month post-intervention chart audit showed an 8.69 fold increase in the number of initiated ACP conversations. Qualitative analysis identified key themes regarding barriers and enablers of initiating ACP conversations during standard care from the perspective of SWs.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.