Compassionate communities interventions: a scoping review

Introduction

The compassionate communities (CC) movement is a public health approach to palliative care (PHAPC) that has developed against the backdrop of growing medicalisation and the perception of death as a failure or threat to public health policy (1). The CC movement advocates for death, dying, loss, and caregiving to be reclaimed as phenomena fundamental to the human condition, and to overturn the current compartmentalisation of the medical model which has taken death out of people’s homes and the community (1). Influenced by the World Health Organisation’s Ottawa Charter [1986] (2) which embraced a “holistic definition of health as an empowered lifestyle which is more than the mere absence of illness” (3), Kellehear argued that “by inadvertently omitting the idea of living with dying from health promotion discourse, it has contributed to an old medical idea that the prospect of death disqualifies one from legitimate health care attention and interest”. He envisaged a complementary relationship between health promotion, palliative care, and community which seeks to “enhance a sense of control and support for those living with a life-threatening illness” through shared responsibility. In so doing, the CC movement has pivoted away from contemporary discourse, policy, and practice that reduces palliative care to the medical concerns in the weeks and days before death. Instead, it has embraced a broader conceptualisation of palliative care that includes meeting the needs of those living with chronic and life-limiting illness, caregivers, and the bereaved (4) through the combined efforts of professional specialists, the experiential expertise of social networks, and the voluntary sector (5).

Kellehear (6) has gone on to develop the Compassionate City Charter which serves to invite cultural and social sectors into palliative care and was designed to be employed over significant geo-political areas, such as cities or towns. As such, the charter requires commitment from local government or community leaders and partnerships with local services (such as palliative care, bereavement support, care for older persons) to enact change. Thus, it typically operates as a top-down approach to behavioural and social change where “a community development strategy is usually employed alongside but after the initial decisions are taken by the leadership” (7). The charter therefore speaks to policy and programme development across a range of integral institutions (such as schools, workplaces, and prisons), community and religious groups, and hospices and care homes that are often developed and implemented in tandem. On the other hand, CC are not bound, but are often guided, by the charter to inform incremental local action which serve to showcase the social value of specific actions within their respective communities (6). Kellehear anticipated and welcomed this kind of incremental social action, arguing pragmatically that such an approach affords organisations latitude to develop relatively low-risk policies and programmes that serve their communities whilst simultaneously contributing to a growing body of evidence evaluating the efficacy and impact of CC interventions. Indeed, many communities, cities, and countries have responded to Kellehear’s call to develop more CC and cities; what this looks like in practice is the focus of this scoping review.

But first, throughout this article the term ‘intervention’ is used to describe the projects, programmes, initiatives, and services identified. Cognisant that for many, ‘intervention’ has become synonymous with the randomised controlled trial we pause briefly to clarify the definition used in this paper. The holistic nature of palliative care (8), and the commitment of CC to identify, design, and deliver initiatives using participatory and emancipatory practices (1), warranted a broad and inclusive definition of ‘intervention’. The definition proffered by Clark et al. (9), which positions intervention as “organised responses to end of life issues” was embraced as it provided legitimacy to the multitude of aims, designs, and methods employed in the field that merit attention. Whilst simultaneously excluding empirical research concerned with naturally occurring networks (i.e., research exploring how end of life is currently experienced without external intervention) which fell outside the remit of this review having been captured in previous reviews (10,11).

Indeed, a number of researchers in the field have produced reviews that demonstrate the advancements in the field over time and further our understanding of how CC are conceptualised and operationalised through intervention. Early systematic reviews in the field (10,11) highlighted there was a growing interest in, and discussions around developing CC and presented tentative evidence for their effectiveness. However, given that the field was in its infancy when the searches of these reviews were performed, they yielded very few interventions and therefore also incorporated conceptual papers (11) and empirical research investigating the characteristics of naturally occurring networks of support which did not include any form of external intervention (10) thereby limiting their ability to respond to their research questions. Other reviews have focused on CC interventions concerned with civic engagement (12); area-based programmes (13); and health system outcomes (14) respectively which have enriched our understanding of the field. For example, Quintiens et al. (13) present a robust investigation which identified the key similarities and differences between area-based CC with regards to their contextual and developmental characteristics and called for more rigorous research to gauge intervention efficacy. While Collins et al.’s (14) search permitted the inclusion of any public health care intervention that measured an aspect of end-of-life experiences or care they focused their paper on five studies that specifically measured a health system outcome. Perhaps unsurprisingly then, the authors conclude that the empirical data in the field is limited and predominantly in the conceptual stage of implementation. On the other hand, D’Eer et al.’s (12) review yielded 34 interventions which when taken together indicated that civic engagement within the context of life-limiting illness, death and loss can elicit positive impact(s), caveated by the recommendation that more research is required to unpack the mechanisms for efficacy.

The valuable insights afforded by these reviews notwithstanding, it is contended that this review provides unique contributions in four significant ways. First, this review was born out of the first author’s doctoral research which was concerned with the lived experiences of people participating in a bereavement-focused CC intervention within extra care housing. While the research aligned with the PHAPC, there exists considerable definitional ambiguity and multiple paradigms within this broader framework (15). In response, this review was motivated by a narrower focus on interventions aligned specifically with Kellehear’s CC movement as an exemplar of the PHAPC. Second, in previous reviews (10,11) there was a tension between the research questions, systematic review methodology, and the heterogeneity of studies in the field. It is argued that the scoping review methodology employed in this review is a useful way of mapping fields of study that may otherwise be difficult to visualise, and is particularly suited to responding to broader topics where a range of designs is anticipated (16). Third, this review sought to present the landscape of interventions undertaken in the field of CC rather than focus on individual intervention functions [see (12-14)]. Fourth, health and social care systems have faced unprecedented challenges supporting the bereaved and those at the end of life during the Covid-19 pandemic and are looking to movements such as CC to direct future support efforts (17,18). This is therefore an opportune time to collate and synthesise what is currently known about the characteristics and efficacy of CC interventions. We present this article in accordance with the PRISMA-ScR reporting checklist (19) (available at https://apm.amegroups.com/article/view/10.21037/apm-22-867/rc).

Methods

This review was conducted by the first author (Roleston C) who followed the six-phase scoping review framework outlined in Arksey and O’Malley’s (16) original paper, supplemented by the recommendations and insights that have contributed to the refinement and enhancement of scoping review methodology since its publication (20-23). The integration of these sources, adapted from The Joanna Briggs Institute Manual for Evidence Synthesis (24) guided this review (The integrated Scoping Review Framework endorsed by the Joanna Briggs Institute: https://jbi-global-wiki.refined.site/space/MANUAL/4687752/11.1.3+The+scoping+review+framework). There is no published protocol for this scoping review.

Stage one: identifying the research question

This review aims to address two key questions: (I) what is known from the existing literature about the design of CC interventions (e.g., the population, setting, scale, methods); and (II) what are the core components of CC interventions, and which are most effective and therefore valuable to include in future interventions?

Stages two and three: identification and selection of studies

Electronic databases

The first author searched for English language publications in the following electronic bibliographic databases: Cochrane, PubMed, Scopus, and Web of Science. Grey literature was searched from ProQuest Dissertations and Theses. The search term “compassionate community/communities” within the fields of “article title, abstract, keywords” was executed on all databases. No limits (e.g., date of publication, document type) were applied to the search.

Inclusion criteria

The ‘Participants, Concept, Context’ framework (22) served to operationalise the active components of the research questions in the search strategy. The ‘concept’ of “compassionate communities” was the primary indicator driving inclusion in this review, specifically, interventions that had been informed by, or inform the CC movement. Papers which framed CC as a public health approach to end-of-life care (including death, dying, bereavement, or palliative care) concerned with community responsibility and building partnerships between the community and services, and reported an intervention aligned with this approach, were included. In an effort to map the landscape of interventions in the field, no limits were imposed regarding the core component(s) of the intervention (e.g., education, volunteer mobilisation, area-based interventions), nor was it a requirement for the intervention to have been developed in consultation with the Compassionate Cities Charter (6). Neither ‘participants’ nor ‘context’ per se determined inclusion for this review. However, those data were gathered to describe the characteristics of CC interventions.

The types of evidence sources permitted for inclusion included primary research articles, review studies (e.g., systematic, scoping, narrative reviews), evaluation reports, and book chapters. Documents were included irrespective of design (e.g., randomised controlled trial, before and after studies, prospective and retrospective cohort studies, cross-sectional studies) or methods employed to evaluate the intervention (e.g., quantitative, qualitative, or mixed methods).

Exclusion criteria

Papers were excluded based on the following: (I) reference to “compassionate communities” in a context outside of the area of interest; (II) full text not available (including presentation, conference, or meeting abstracts); and (III) not available in English.

Hand-searching

Three journals (Annals of Palliative Medicine, BMC Palliative Care, and Progress in Palliative Care) were identified as key because of the volume of included studies published in them and were screened. Citation chaining of the included studies was also performed.

Quality assessment

Not performing a formal quality appraisal of the evidence included in a scoping review has been identified as one of its defining (16,22,25), and most contentious (26) features. Nevertheless, it is argued that eschewing prescriptive and restrictive notions of evidence hierarchies and quality concerns liberates the scoping review, permitting the inclusion and dissemination of evidence from a range of different methods and study designs (16). While individual paper quality assessments were not performed as part of this review, Yardley’s (27) four principles of good quality research, ‘sensitivity to context’, ‘commitment and rigour’, ‘transparency and coherence’, and ‘impact’, were used to inform more generic critical evaluations of the state of the evidence overall.

Stage four: data charting

A summary of each of the included papers recorded: the author(s), year of publication, country of study, organisation(s) implementing the intervention; study setting; study population(s); core component(s) of intervention; intervention comparator (if any); duration of intervention; method(s) of data collection; method(s) of data analysis; sample size and demographic details; and key findings. In alignment with the iterative sensibility of the scoping review methodology (16), we later added level of community involvement (e.g., community engagement, community development, community consultation, etc.) to the data charting form.

Stage five: collating, summarising, and reporting the results

As recommended by Arskey and O’Malley (16), two levels of analysis were performed. First, to establish the nature of the evidence base, a basic numerical analysis of the key features of included studies (e.g., country of study, setting, population) was performed with a view to identify trends, and potentially isolate gaps in the literature. The second, a thematically orientated (organised by intervention type) narrative synthesis of the findings identified the efficacy and value of CC interventions.

Stage six (optional): consultation exercise

Time and resource constraints prohibited consultation with stakeholders.

Results

The search, last performed in May 2022, yielded 310 titles and abstracts (see ‘Identification of studies via databases, Figure 1); duplicates (n=110) were immediately removed leaving 200 records. Through screening, 168 records were excluded as: irrelevant (n=138); full text unavailable (n=27); duplication (n=2); and not available in English (n=1). Consequently, 32 records were retained for inclusion. As summarised in Figure 1 (‘Identification of studies via other methods), a further 1,572 records were identified through a combination of reference (n=982) and citation searching (n=180) of the 32 records retained for inclusion, journal hand searching (n=271), reviewing the studies included in review papers (n=125), and reviewing Kellehear’s book (28) (n=14) which had been identified through our original search strategy. Of these, 335 were duplicate records and 106 were obviously irrelevant (e.g., bibliography, back matter, etc.) and were immediately removed, leaving 1,131 records. Screening excluded 1,101 records as: irrelevant (n=1,045), full text not available (n=24), and not available in English (n=32). Consequently, 30 additional records were retained for inclusion bringing the total to 62 included studies.

Figure 1 PRISMA flowchart of the search and screening process.

Key characteristics of CC interventions

A total of 62 empirical studies were included in this review (see Table S1); it is noted that some CC interventions yielded multiple studies. For example, the Healthy End-of-Life Project (29,30); End-of-Life Social Action Study (31,32); All With You (33,34); Caring Community in Living and Dying (Landeck) Project (35-37); Cheshire Living Well Dying Well (38,39); End-of-Life Care in First Nations Communities (40,41); Good Neighbour Partnership (42,43); Heidi’s Have a Go Project (44,45); Last Aid Courses (46-49); Nav-CARE (50-53); and the Pallium Project (54,55).

Since 2013 there has been a rapid rise in publications about CC interventions, particularly in Europe (n=33), specifically in the United Kingdom (31,32,38,39,56-66); Austria (35-37,67); Spain (34,68-70); Ireland (42,43,71); Sweden (72,73); Germany (46); Poland (74); Portugal (75); and across (European) country comparisons (47,48). A large proportion of studies were conducted in Canada (n=12) (29,40,41,50-55,76-78), and Australia (n=9) (30,44,45,79-84), but also in Taiwan (n=1) (85), India (n=1) (86), Hong Kong (n=1) (87), Mexico (n=1) (88), and through cross continent collaboration (n=4) (33,49,89,90).

The vast majority (n=28) of the included interventions were designed and implemented by palliative care teams/organisations based in the UK (31,32,38,57-59,62-64); Europe (34,39,42,46,49,70,71,74); Canada (50-53,55,76); Australia (44,45,79,84,89); or through multi-agency (often including palliative care) collaboration (n=21) (29,33,35,36,43,54,60,65-69,73,77,78,82,83,85-88). Single interventions were implemented by primary care (56); a children’s charity (72); community group (61); and a dementia care centre (81). Nine studies (30,37,40,41,47,48,75,80,90) did not specify who had deigned and/or implemented the intervention.

The level of community involvement in the intervention differed across studies. The majority of interventions were designed, delivered, and evaluated at an organisational level and partnered with community organisations to support interventions in their communities (n=16) (33,35,36,37,39,42,54,55,59,60,67,68,70,73,82,85); involved community members in a consultancy capacity to provide feedback on the programme (n=8) (38,46-49,62,71,80); or recruited them as community volunteers (n=16) (31,32,34,43,50-53,56,57,65,66,76,77,79,87). Interventions were also developed in response to needs identified from within the community (n=11) (29,30,40,41,58,61,63,64,69,74,86); activities were co-constructed (n=6) (44,45,75,78,81,89); or emerged from communities themselves (n=3) (83,88,90); and in two studies community involvement was not an explicit goal (72,84). The language used to describe community involvement was applied inconsistently across studies.

The population under study predominantly fell under one of three categories: residents or organisations within a particular community or region (n=23) (29,33,35-42,46,55,60,61,63,68-71,75,83,85,87); specific patient groups including people identified to be at the end of life, living with advanced chronic illness, or else identified as vulnerable (31,32,43-45,50-53,56,58,74,76,77,79,80,86), the informal caregivers/family members of someone at the end of life (57), both patient and informal caregiver (34,65), people living with dementia (67,81), and the bereaved (64,66,72,78,88); and the general public (n=9) (47-49,59,62,82,84,89,90). The three remaining studies (30,54,73) did not state the study population.

The majority (n=46) of included studies stated no intervention comparators, however, more robustly designed interventions including pre- and post-intervention comparisons (n=9) (38,52,56,58,62,71,81,84,87), and (non-)randomised controlled studies (n=7) (31,32,34,43,65,76,79) were included.

To generate data the included studies employed mixed methods (n=21) (31,40,41,42,43,44,45,46,47,48,49,52,54,62,65,68,70,74,75,79,81); qualitative method(s) (n=21) (29,30,35-37,50,51,53,63,64,66,67,69,72,77,78,80,82,83,86,90); and quantitative method(s) (n=12) (32,34,38,55,56,58,71,76,84,87-89). Of these, a small number of included studies (n=5) (31,32,34,76,87) employed psychometric scales to evaluate intervention efficacy. However, most had not yet completed data collection prohibiting direct comparison. Finally, a sizeable number of the included studies do not name their methods for data collection (n=8) (33,39,57,59-61,73,85) and/or data analysis (n=23) (30,33,35,36,39,42,54,56-62,64,67-69,73,74,76,81,85).

What do evaluation findings contribute to our understanding of the efficacy and value of CC interventions?

In order to present the findings of the included studies in a cohesive narrative they were mapped onto the taxonomy of interventions at the end of life developed by Clark et al. (9) (see Table S2) based on the overarching aim(s) and the core components of the intervention. Clark et al. themselves acknowledge that these categories are not to be viewed as discrete or exhaustive but rather intend them to serve as a “road map” to organise, strengthen, and deepen our understanding of end-of-life interventions. In summary, the included studies were identified as educational (n=17); service (n=20); clinical (n=3); cultural (n=4); and multi-dimensional (n=18). The subsequent sections will expand on the implementation, findings, and learnings of each of these categories, respectively. See Table S1 for a summary of the main findings of the included studies.

Educational interventions

Seventeen education-based interventions were included. The majority aimed to provide information and raise awareness about end-of-life care (38,46-49,55,60,62,63,75,84), and to provide attendees with skills and tools to encourage further conversations (and other actions) about death, dying, loss, and care (38,47-49,55,62). A smaller number of studies had more specific aims: to support and empower couples to navigate the changes and challenges of dementia (81); to provide workshop discussions for pharmacists to better understand the needs of people with dementia and their carer (67); to scale-up learning and development in rural, remote, and other resource-constrained settings (54); to assess the educational needs of First Nation communities in Canada (40); and to provide psychoeducation on topics related to grief and loss in combination with discussion-focused sessions (72,88). The majority were one-off educational events that could be completed within a couple of hours (38,46-49), a single day (55,67,75), or a flexible delivery over the course of a few days or sessions (55,62,72,81,84); five were delivered online (47,49,55,62,84), the others were delivered in-person. Half of the included studies report on small-scale pilot study/studies (60,62,63,67,72,75) with the remainder (38,46-49,54,55,88) reporting on ongoing educational events.

Findings from cross-sectional studies (46-49,55,62) evaluated course content favourably, and the majority (99–100%) of respondents recommended the course to others (48,49). While educational interventions have shown to be effective at ‘continuing the conversation’ (84) they have had limited success in encouraging participants to ‘take action’, such as making a will (38), with only two participants having done so at follow-up. Overall, attendees welcomed the opportunity to discuss their experiences of death, dying, and loss and to connect with others through shared experience (38,72,75,81).

Most studies reported on the evaluation of developed and implemented programmes, however, Paul et al. (63) and Prince et al. (40) focused on the educational needs of specific communities, primary school children and First Nations communities, respectively. Both emphasised the importance of holistic but tailored educational initiatives that connect with, and serve, all members of the community and health care systems. Implementation and evaluation of these initiatives was forthcoming at the time of publication.

Evidence from the included interventions suggest educational interventions effectively provide attendees with an opportunity to gain information and provide space to discuss topics pertaining to illness, dying, and bereavement. However, given that evaluation of the included studies [excepting (38,72)] took place on the day of the intervention, the impact of these interventions beyond the classroom is unknown. Furthermore, it is suggested that the included studies were influenced by participation bias; with attendees being disproportionately retired, educated women from the least deprived areas (38,84) who were demonstrably ‘death-positive’ prior to the intervention (38,81,84). It is unfortunate that studies drawing from broader populations, such as Martins Pereira et al. (75) and Plunger (67) provided limited insight of the perspectives, attitudes, and experiences of attendees despite employing potentially data-rich methods such as semi-structured interviews, focus groups, and participatory observation. In future education-based interventions, a more concerted effort is required to recruit participants beyond healthcare professionals and those with a vested interest in death, dying, and bereavement.

Cultural interventions

In an effort to facilitate a death-positive discourse among the general public, a small number of included studies (n=4) focused on cultural events, namely Café Conversations (71), Death Cafés (90), Twitter discussions (89), and combining arts-based activities with “weaving conversations” to cultivate a community garden (83). In one study, the #PallANZ hashtag was used to create a safe space for discussion and information provision during the Covid-19 pandemic (89). Analysis of these Twitter discussions elicited conversations between 25 participants and generated almost 750,000 impressions, with a second discussion a month later generating greater engagement indicative of ongoing, and perhaps growing, engagement.

Furthermore, using the Death Café model McLoughlin et al. (71) reported significant post-intervention improvements in understanding the importance of talking about the topics under consideration, although respondents’ perceived difficulty talking about death, dying, loss, and care did not reach significance. Richards et al. (90) had a wider orientation, conducting an international exploration of Death Café organisers’ experiences which challenged UK-centric findings. For example, globally, organisers and attendees were more diverse than had previously been reported. Nevertheless, they contend that both organisers and attendees were predominantly women, and in the case of organisers, the majority were healthcare, mental health, or death industry professions. Notwithstanding geographical, cultural, political, and religious differences, participants spoke of the prevalence of death avoidance and the outsourcing of death to professionals within their respective countries. Against this backdrop, participants were emphatic that people needed a ‘safe space’ to talk about death and believed this was “a good thing in and of itself”. Marsh et al. (83) likewise reported that ‘death talk’ was seldom permitted as part of the everyday and so participating in the community garden was a “cathartic emotional experience” as it provided a much-needed opportunity to deliberately discuss death and dying. Moreover, while some organisers suggested that conversations could extend to other spheres, such as making practical plans or carrying on the conversation with their loved ones, others cautioned against the over-emphasis on tangible evaluative outcomes as this ran counter to the central ethos of the Death Café movement (90).

In summary, findings suggest there is a growing counter-cultural appetite to engage in death-positive discourse (71,83,89,90), and that cultural events can elicit significant changes in attitudes (71) and encourage continued action in other aspects of life (90). Given the paucity of research focused on end-of-life cultural interventions conclusions are tentative, more research in this field would be welcome.

Service interventions

Within the context of CC, service interventions (n=20) adopted a broadly equivalent approach; community volunteers were trained and matched with vulnerable older people (and/or their carer) with the aim of providing ongoing support and advice, and mobilising community networks to provide appropriate support (31,32,34,43,50-53,56-58,65,66,76,77,79,87). While these were often implemented by palliative care organisations, or allied professionals, there was an emphasis on redirecting care away from clinicians and into the capable hands of the community. Notable exceptions developed services to rehabilitate prisoners through hospice volunteerism (74); provide online bereavement support for people during the Covid-19 pandemic (78); and provide peer-led bereavement support group for carers of someone at the end of life (64). Five of the included interventions (31,34,43,76,79). had not yet concluded, therefore these papers report no findings.

Findings indicate that being supported by a volunteer reduced total visits to GP practice, total phone calls to family doctor, total accident and emergency (A&E or emergency room) admissions, total unplanned hospital admission, and total calls to/visits by out-of-hours palliative care services (56,58); with an increase only in planned hospital visits (58). However, randomised controlled studies that compared ‘volunteer intervention’ to ‘usual care’ on a battery of measures, including quality of life, loneliness, social support, and coping strategies reported no statistically significant differences between comparator groups at any time points (32,65). Although the authors cautiously assert there was a positive trend in favour of the intervention group. Given that the effect size of these interventions was small, both suffered from being insufficiently powered.

Qualitative research with clients has reported high levels of satisfaction. Benefits included increased confidence asking for help, having access to someone knowledgeable, provision of resources, and knowing there was back up when needed (51), particularly when clients had previously felt “invisible” (77). Clients also shared humorous and uplifting anecdotes with the volunteer; such experiences “altered the qualitative nature of their experience, even if it did not change the medical trajectory” (52). Additionally, stakeholders argued that writing personal health goals “empowered [clients] to improve their social connections and personal wellbeing through intentional connections to community activities” (77). The authors claim clients echoed these benefits but provided no direct excerpts from clients to support this. Volunteer experience however was marked by ambivalence, with volunteers asserting their lives had been equally enriched through the programme, yet role ambiguity challenged their ability to gauge their performance and contribution (52). This was ameliorated somewhat over time as volunteers refined their understanding of the role to include the significance of emotional as well as instrumental support.

Furthermore, three of the included studies focused on supporting people bereaved by, or during the Covid-19 pandemic (50,66,78). Bruce et al. (50) and West et al. (66) both emphasised the unique challenges endured by bereaved people during the Covid-19 pandemic, including being denied the opportunity to be with their loved one at the end of their life (50); the loss of the usual rhythms of life (50), and the absence of forward momentum (66); the acute pain of grieving alone (66), and thwarted efforts to hold remembrance events for their loved one(s) (66). For those at the end of life, forced isolation led to sadness and regret as opportunities to connect with others was lost (50). Nevertheless, participants identified affordances nurtured through pandemic grief, such as developing new activities and hobbies (50); dwelling more deeply in life (50); the re-collectivising of bereavement through collective mourning and memorialisation (50,66); and welcome respite from “mandatory happiness” (66).

Moreover, a number of the included studies reflected on their experience implementing the intervention which offer critical insights for future programmes and research. First, the single best predictor of successful implementation was having trusted community leaders (58) with the right characteristics, beliefs, and attitudes to take ownership of and carry forward the intervention (51). However, organisational capacity, disruption, and resistance of the respective partners often undermined the efforts of community leaders and volunteers and threatened programme success and sustainability (51). Specifically, authors reflected on the unanticipated challenge of instilling the ideals and practice of community-volunteer end-of-life services within clinical teams (57), which led to a disappointing number of professional referrals that inhibited the recruitment of clients to the respective studies (51,65). Walshe et al. (65) for example, hypothesised clinics may not be the most suitable recruitment location for non-clinical interventions and argued that alternative recruitment strategies, such as social and traditional media advertising, could be utilised in the future as it is more “congruent with the mutuality of a peer mentor intervention”. Abel and Townsend (57) likewise acknowledged a tension operating within a risk-averse corporate understanding of volunteering and the principles of community participation and engagement which, perhaps unduly, influenced intervention implementation. Furthermore, they pointed out that referrals often occurred late in the patient’s illness which limited the possibilities for emotional support and network development and therefore the efficacy of the intervention.

Clinical interventions

A small number of the included studies delivered clinical interventions (n=3), in many ways these were similar to ‘services’ but were more overtly orientated within, and delivered by, professional or clinical teams. For example, Aoun et al. (80) described a pilot study testing the acceptability of an adapted version of the Carer Support Needs Assessment Tool (CSNAT)—which seeks to identify unmet carer needs—to be administered in a paediatric context. Through qualitative interviews, parents commended the comprehensiveness of the CSNAT in that it “highlighted issues that might otherwise have been forgotten, especially in a stressful situation” and provided validation of their needs. Furthermore, parents reported it had improved communication with clinical teams, and empowered them to seek additional sources of support in response to their needs.

The other two included studies (44,45) report on the programme “Heidi’s Have a Go” which facilitated palliative care patients to “have a go” at something they had longed to do. It is a model of care that features no predetermined programme activities, rather, it is a collaborative approach that responds to the unique wishes of each individual and their family. Activities included, but are not limited to, learning how to make cheese (the eponymous Heidi’s elected activity), cuddling a koala, and shooting a gun. These two papers report on qualitative semi-structured interviews with staff and volunteers engaged with the programme. Participants reflected the informality of the programme “created a personalised space within the clinical world where humanity was shared” (44) which in turn provided welcome respite from the typically medicalised focus of care (45) and redistributed the balance of power in care relationships that “empowers a sense of control for patients who may have relinquished a lot of choice to those guiding their care and treatment”. Furthermore, activities had the power to “nurture intimate moments” (45) within families that “witnessed and supported an experience of emotional processing, nurturing the foundation of a deeper, connected relationship between this family and staff”.

Multi-dimensional interventions

There were 18 interventions that are perhaps better understood as Compassionate Cities. They describe multi-phase protocols and, in some cases, preliminary findings, that apply the Compassionate Cities Charter (6) into practice in their respective city or region (29,30,33,35-37,39,41,42,59,61,68-70,73,82,85,86). Their aims were ambitious, striving to shift cultural attitudes to normalise death, dying, and bereavement, and to enrich society by bridging community, social, spiritual, psychological, and medical resources for (amongst others) those with advanced illness, caregivers, and the bereaved. Consequently, these interventions were multi-faceted, multi-phased, multi-agency initiatives that embraced a multi-dimensional approach by incorporating three or more intervention categories from Clark et al.’s (9) taxonomy.

While the complexity of these interventions is acknowledged, there are nevertheless taxonomical trends observed across the included studies, which include a combination of: ‘research’ into the current needs of the communities under study (30,36,39,61,68,69,73), or surveying pertinent literature and theory to inform policy and practice (30,33,42); ‘education’ through the development and dissemination of pertinent resources and information activities (30,33,35,36,39,42,59,61,68,69,82,85); driving changes in ‘policy’ (33,35,42,59,82); ‘services’ such as community volunteer programmes to supplement and mobilise existing support networks for people at the end of life or bereaved people (30,33,36,39,42,68,69,82,85); ‘cultural’ events, such as art exhibitions, Death Cafés, and remembrance festivals (35,42,59,61,68,69,73,82,85); and ‘advocacy’ efforts including, community and organisational outreach, engagement, and partnership (29,33,35,36,39,42,59,61,68,69,82,85,86). A small proportion of included studies focused on the development of palliative care to communities that had previously had little to no access and/or provision (41,86). These studies employed equivalent implementation techniques, but focused on establishing palliative care systems, cultivating trust between healthcare professionals and community members, and attending to issues pertaining to cultural competency and security.

While overall there is a paucity of methodological and analytical detail related to evaluation strategies, the preliminary findings indicate that positive outcomes had been achieved. The level of community and organisational engagement with events and training, and commitment to establishing and maintaining partnerships demonstrates an appetite to engage with a Compassionate Cities approach to death, dying, and bereavement (33,39,42,61,68,69,85,86). Hasson et al. (69) for example have reached over 7,400 people through workshops, conferences, Death Cafés, and training courses over a four-year period. There is also evidence (38) that public education sessions can produce change in perceptions about death and dying. In particular, attendees reported recognition of the individual and social aspects of death and dying in addition to the medical, although others have reported discussion to be too difficult and painful (61).

Furthermore, a small number of studies reflected upon the learning and challenges they have experienced implementing CC interventions. These include but are not limited to: social norms around offering and accepting help which may be unhelpful and potentially undermine community capacity (30,61); a lack of public knowledge about palliative care (33); healthcare professionals and/or organisations struggling with the concept of public health end-of-life care and consequently resisting CC programmes (39,59,82); social norms, politics, and local culture and religions relating to death and dying (41,85,86); limited funding opportunities and poorly linked resources creating significant barriers to sustainability (33,39,61); and the breadth of the CC agenda and concerns over efficacy (59,61,70,82). Reflecting on their experience, Wegleitner and Schuchter (35) eschew the conceptualisation of CC as something that can be ‘implemented’ using standardised techniques and measurements. Instead, they propose CC to be “a type of framing, mutual care philosophy, which has to be translated into concrete, localised practices in collaboration with the community”.

Discussion

The magnification of the experiences and support needs of the bereaved and those at the end of life during the Covid-19 pandemic is likely to have amplified (17,18) an already growing interest in and development of CC interventions (1). This review sought to map the core characteristics of CC interventions and synthesise what is currently known about their efficacy and value. Given the heterogeneity of fields in their infancy, a scoping review methodology was employed as it permitted greater latitude for inclusion than traditional systematic review procedures (16).

By mapping out the core characteristics of the field this review has identified distinct trends, as well as notable absences within the current literature. Most notably, the vast majority (n=39) of the included studies were designed and implemented by and within palliative care organisations. Given the CC movement is rooted in palliative care practices and traditions, it follows that this emerging field of work would initially be driven by palliative care priorities and/or settings. However, several of the included studies discuss the challenges inherent in developing community-centred programmes within medically orientated environments (51,57,65). Specifically, authors noted that a lack of public knowledge about palliative care (33); tensions operating within risk averse institutions (57); and healthcare professionals’ resistance to the de-professionalisation of palliative care (39,59,82) limited the efficacy of intervention implementation.

The professional and medical dominance in palliative care was identified by Kellehear (1) to be the single greatest challenge to any public health approach, warning that, “anger and pique is the usual reaction towards new ideas by those who are the guardians of the old ones”. Unfortunately, while Kellehear aptly identified these potentially significant cultural and organisational barriers to the implementation of CC interventions, he offers few strategies or solutions to overcome them. It is then imperative that future publications in the field continue to reflect upon, and where possible, share their experiences and strategies to overcome, or mitigate these obstacles, as well as developing community-led initiatives outside of palliative care.

As Kellehear anticipated (6), this review identified interventions that implemented the Compassionate Cities Charter (n=17) in addition to interventions with a narrower focus (educational (n=17); service (n=20); clinical (n=3); cultural (n=4). Irrespective of intervention function, the vast majority of interventions articulated a commitment to community development to “enable as much resource as possible to exist within the community, without always involving health and social care services” (56), often through participatory action research approaches (29,30,35-37,40,41,64,78,83). That being said, most of the interventions were designed to “extend or transcend current service offerings” (1) through formal direct services as opposed to bottom-up grassroots initiatives. Drawing upon Kellehear’s (1) four implementation models, we argue that while the “healthy cities model” employed by multi-dimensional interventions and the “community development model” adopted by service and educational interventions are certainly legitimate approaches, we welcome and encourage future programmes to use the “community activist model” in an effort to move beyond organisationally orientated services.

The second aim of this review was to synthesise the most efficacious intervention functions to cultivate CC. Preliminary findings indicate there is public appetite to attend cultural and educational events (38,39,42,46-49,55,60-62,68,71,72,75,84,88), and that attendance can precipitate further conversation and action (38,61,72). Additionally, there is accumulating evidence that being supported by a community volunteer can contribute to reduced emergency hospital admissions of those identified at risk (56,58), as well as positively influence quality of life, social connectedness and cohesion, and illness experience for those at the end of life (44,45,51,52,64,83) and during bereavement (50,66,78). However, the two randomised controlled trials included in the review (32,65) reported no statistically significant benefits to receiving volunteer support than ‘usual care’. At this stage, the mechanisms contributing to the observed effects of CC interventions remains unclear, in part because interventions appear to be “based on implicit common-sense models of behaviour” with “no formal analysis of either the target behaviour or the theoretically predicted mechanisms for action” (91). Further to this, interventions were largely cross-sectional meaning there was no mechanism to assess whether the intended behaviour change has occurred. Consequently, the most efficacious approach(es) for implementing CC remains elusive, and more theoretically driven research is needed to be able to identify the most efficacious components for change.

There were limitations to the literature included in the review. Methodological detail was missing in a sizeable proportion (n=22) of the included studies. It is acknowledged that the inclusion of varied sources of evidence (such as book chapters where there is potentially less emphasis placed on describing intervention protocols and methods rigorously) is likely to have contributed to this. It may also be expected that interventions initiated by communities are conducted without reference to theoretical or methodological background and so these features cannot be reported, at least in the ways we have come to expect in scientific journals. Nevertheless, Yardley’s (27) ‘transparency’ criterion speaks to the expectation that research (of any kind) is reported thoroughly. It is a fundamental requirement in research to describe what work has been done and how, and this has not been met in a sizeable proportion of the included interventions. Consequently, the trustworthiness of their claims is significantly undermined, a critique echoed in other reviews (10,11).

In addition, there are limitations in the conduct of the review. First, limited resources precluded engagement with the (optional) consultation exercise advocated within the scoping review methodology (16,20,21), and restricted eligibility to literature written in English. Second, while the search terms employed (‘compassionate community/communities’) yielded a greater volume of eligible studies than other reviews that employed more comprehensive search terms (11) it is possible that some literature was missed. Third, although this review was conducted systematically and meticulously, it is acknowledged that reviews conducted by a single researcher are open to criticism (21,92).

Conclusions

In conclusion, this review identified 62 articles that describe CC intervention(s), the majority of which were published within the last five years, indicative of a movement gaining traction. The CC movement seeks to radically reorient how we think about, talk about, and act towards death, dying, and bereavement. Interventions aim to change cultural and societal attitudes about death, dying, and bereavement; to facilitate fruitful partnerships between, and within public, private, and third sectors to better serve individuals at the end of life; and finally, to raise social capital through the mobilisation of community volunteers. Success against such ambitious objectives is perhaps to some extent an impossible standard to meet, and yet, the emergent findings of this review do demonstrate an appetite at both organisational and individual levels for a shift in how we conceptualise, discuss, and support those at the end of life and their families. However, marrying the philosophy of community development to improve the quality of life of people with life limiting illness with the medical dominance within palliative care remains a challenge. Nevertheless, the clinical interventions included in this review demonstrate that these two philosophies can work together to elicit meaningful (80) and memorable (44,45) experiences when facing life limiting illnesses. There is also emerging evidence that interventions informed by the CC movement can elicit change in attitudes and behaviour, as well as improve the quality of life of those living with advanced illness. Finally, the surge in (non)randomised controlled trial protocols published (34,43,76,79) is promising as evidence from robustly designed and evaluated studies will soon be forthcoming. It is imperative going forward that published works demonstrate greater methodological transparency and rigour to engender greater trust in the efficacy and value of their findings.

Acknowledgments

We would like to thank all reviewers for their constructive and insightful comments. This scoping review has been published as an Appendix in the PhD thesis of Caity Roleston (titled “We are all dropping off like flies… it’s a fact: A hermeneutic-phenomenological exploration of a bereavement focused Compassionate Communities intervention in extra care housing”).

Funding: None.

Footnote

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-22-867/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-22-867/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-22-867/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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