Conference Agenda

Background: Advocates for a community-centric approach to palliative care have highlighted the pivotal contributions of informal community networks, arguing that a substantial part of the end-of-life care and support is rooted in community interactions. These networks, often consisting of friends, family, and neighbors, are instrumental in providing both emotional and practical support to those facing serious illnesses and loss. Nevertheless, societal taboos surrounding end-of-life discussions impede openness, confining many of these conversations to professional care environments. A recent groundswell of movements and organisations is rising in Flanders, Belgium, stimulating engagement with serious illness, death, and bereavement. Although there has been a positive development in relation to the taboo surrounding loss and grief in public settings, there is still limited understanding of how people perceive and use places of solace.

Objectives: Our study aims to delve into the lived experiences of people using places of solace when faced with serious illness, death, or grief. The main research questions guiding this inquiry are: 1. What meaning do individuals attribute to places of solace? and 2. What role do these places fulfill within a neighborhood?

Design: Through a mixed-methods approach, existing out of 6 focus groups and an online survey for visitors and a subsequent survey was tailored for the coordinators.

Results: The results illuminate their role as sanctuaries for peace, mediums for the reciprocal exchange of solace, and arenas for normalizing discussions on death and loss. Places of solace foster community ties, enhancing public discourse and social cohesion around end-of-life issues. Findings suggest these sites serve both personal reflection and collective experience, challenging societal norms and promoting resilience.

Conclusion: This study serves as a clarion call for the acknowledgement of the importance of places of solace and integrate them into their initiatives and policies. It beckons policymakers, organizations, and communities to integrate these spaces into their frameworks, fostering environments rich in care, compassion, and collective well-being, particularly during life's most challenging moments, such as times of serious illness, caregiving, dying, and loss.

Background: Life limiting illness is managed in the context of complex social networks, with social support and connectivity linked to positive health outcomes. Yet those living with life limiting illness often experience the breakdown of personal relationships, social isolation and the loss of community mobility. This disturbance ripples out, impacting the relationships and networks that the person with life limiting illness is situated within. In response, a Scottish hospice has been supporting a Compassionate Communities approach in several ways; from developing community-led cafes; employing a team of professionals; supporting volunteer befrienders, and through asset-based community development activity. Yet little is known about how, and to what affect, this approach is experienced by those affected by life limiting illness and informal and formal caregivers.

Aims: The objectives of this doctorate study are twofold; to understand how life limiting illness impacts relationships and connectivity to community, and to explore what a Compassionate Communities model in the context of a Scottish Hospice can offer to those relational experiences.

Methods: A qualitative multimethod case study approach was adopted. Methods of individual interviews, dyadic interviews, and the creative method of photovoice were used with those living with life limiting illness and their self-selected relational network. Group interviews were also conducted with Hospice staff.

Findings: Within case and across case analysis show that illness impacts participants notions of what it is to be living (giving help, having purpose, and maintaining independence). This in turn impacts one’s ability to access and maintain social connectivity to social networks. Compassionate Communities activities reinstates elements of what it is to be living; by building confidence and allowing participants to engage in positive altruistic roles. Suggestions of future improvements of Compassionate Communities, such as addressing the relational dynamics between volunteers and those they support.

Conclusion: This doctoral research captures the personal and relational complexity of living with life limiting illness in Scotland today. In the context of this research, a Compassionate Communities approach is not without its challenges, yet it offers a variety of relational mechanisms which provide those living with life limiting illness and their relational network a means to re-construct the social self.

Background

A medical management of death is becoming increasingly widespread, due to several emerging factors. Furthermore, the Covid pandemic has brought about a reduced focus on a bio-psycho-social approach to death. The essential role of the Community has been decreasing, while current Palliative Care Services cannot address all the needs brought by sick people and their relatives due to the high prevalence of patients with palliative care needs.

Compassionate communities/'caring communities' (C.C) have been proposed as a Public Health response to the management of serious illness, death, dying, and bereavement.

In this project we describe the Mapping phase (discover, asses, focus, and commit) of a project called “InVita!”.

Objectives

1.To identify the needs and resources of involved stakeholders, families, citizens

2.Identify potential beneficiaries and components of future intervention.

Design

Prospective observational study

Methods

Needs, resources, and interventions related to the end of life have been mapped. Community stakeholders were involved to actively participate in the co-design of the project. Twenty-two semi-structured interviews with InVita! stakeholders (healthcare and social services, voluntary and cultural associations) were conducted; three Focus groups with caregivers of deceased persons were developed together with participants and they will be co-conducted.

A survey of local citizens belonging to the local context will be carried out.
NVivo software was used for qualitative thematic analysis. Triangulation of the data will be realized from the different types of resources.

Results

Eight themes arose from the interviews’ analysis: 1) Needs and Challenges; 2) Resources 3) Facilitators to the realization of C.C.; 4) Projects relating to end of life in the past; 5) The stories/description of the associative realities; 6) Potential actors to be involved; 7) Expectations; 8) Motivations to participate in InVIta!

The data from focus groups and survey will be triangulated with the interviews to identify further themes.

Conclusions

The data collected from this study will allow to identify intervention/interventions for the design and implementation of a sustained C.C.

Funding

The project was partially funded by MANODORI Foundation and Azienda USL-IRCCS Reggio Emilia.

Wider social networks are increasingly recognised in supporting people with care needs. Health promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs. This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed, and what determines this willingness. We applied a cross-sectional survey design and distributed 4,400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner. A total of 2,008 questionnaires were returned (45.6%). Average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company lowest. Factors associated with higher willingness included optimistic outlook about receiving support from others, family caregiving experience, and prior volunteering around serious illness or dying. People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience around illness, death or dying. This suggests a potentially large informal support network which is available to all. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning.

Background: In 2020, we developed two Compassionate Neighbourhoods in Sint-Kruis and Herzele to promote neighbourhood participation in matters of serious illness, death, and loss. Existing literature describes reasons for initiating such initiatives and highlights ongoing activities but falls short in exploring contextual barriers and facilitators to their development.

Aim: To explore the contextual factors that facilitate or hinder the development of a Compassionate Neighbourhood in Sint-Kruis

Design: Between January 2020 and September 2023, we implemented and evaluated two compassionate neighbourhoods, of which Sint-Kruis was one. We conducted a qualitative process evaluation.

Methods: The process evaluation consisted of observing meetings and actions (n=102) and conducting interviews and group discussions (n=57) with stakeholders, including social partners, local merchants and the neighbourhood police. We conducted a reflexive thematic analysis, employing a mix of inductive and deductive coding based on the Consolidated Framework for Implementation Research.

Results: We identified the city as the project initiator as a key contextual factor. This facilitated the project by anchoring it in a structure consisting of a steering group of social partners, and by appointing a project leader and a neighbourhood worker who were mandated to coordinate the project. However, while this structural anchoring was beneficial, it also hindered the project. Social partners expressed concerns that excessive time was devoted to developing these structures rather than implementing actions in the neighbourhood. The decision to appoint an external neighbourhood worker hindered the sense of ownership among social partners since some of them already had neighbourhood workers present in the area. Redistributing the responsibilities of the neighbourhood worker to the social partners, facilitated a greater sense of responsibility towards the project and motivation to continue. Pre-existing collaborations between the city and social partners facilitated bringing partners together but impeded the involvement of more unconventional social partners (e.g. neighbourhood police and local merchants).

Conclusion: The city's role in initiating the project laid a strong foundation through structured leadership and organisation. Finding a balance between structure and empowerment of the participants is found pivotal to creating sustainable Compassionate Community initiatives.