IJNHCR Journal

Introduction

Advance Care Planning (ACP) is a process for helping individuals to express their wishes, understand, plan and make decisions about their future healthcare, particularly regarding end-of-life care [1,2]. The quality of care provided at the end-of-life has been widely acknowledged as a critical element of comprehensive health and social care [3]. Canada’s Palliative Care Framework (2018) emphasises ACP, community-based care, and the role of family caregivers, and encourages public discussion about end-oflife care and decisions [4]. In the UK, several guidelines have been published regarding how health and social care professionals can provide person-centred end-of-life care [5-7]. In Ireland, ACP has gained increasing attention within national policy and healthcare reform, yet a coordinated and standardised approach remains limited. The Department of Health in Ireland published the National Adult Palliative Care Policy, highlighting the importance of delivering integrated, person-centred care, including care at the end of life [8].

ACP has been proven to improve the quality of end-of-life care, and increase patients and family satisfaction [9]. While the value of ACP is widely acknowledged, many individuals remain reluctant to engage in such conversations, often due to emotional discomfort, or an assumption that it is only relevant in the final stage of life.

There is a perception that the topic is ‘upsetting’ [10] or could raise ‘negative’ issues [11]. Despite the barriers, research suggests that adults and individuals with frailty would benefit greatly from early and open discussion about end-of-life care, yet often lack the opportunities or safe spaces to do so [3]. Research findings suggest that between 61% and 91% of older people were willing to discuss their end-of-life care [12,13]. Older people felt that by having such discussions, their wishes would be respected, and they had the opportunity to express their preference for care and treatment before becoming cognitively impaired [3,14]. In addition, avoiding ACP and conversations about death and dying could leave families feeling overwhelmed, unprepared, and uncertain when making important decisions. At the health system level, the absence of such planning may result in care that does not reflect the patient’s values, leading to unnecessary or non-beneficial treatments and inefficient use of resources [15]. Promoting open conversations around death and dying supports better outcomes for individuals and families, while also contributing to more effective and personcentred healthcare delivery.

Traditionally, ACP has been included within palliative care, with healthcare professionals expected to have ACP conversations with patients. However, with the rapidly growing ageing and frail population, it becomes less feasible for palliative care sectors alone to carry the responsibility of initiating ACP conversations [16]. Although healthcare professionals felt it is important to have these conversations as part of their responsibilities, there are pressures with seeing increasing numbers of patients and the time required to have these conversations [17,18].

Communities and local led initiatives help address these gaps by creating supportive, open environments where conversations about death and dying are normalised and encouraged outside of clinical settings. Findings from the use of the compassionate communities model emphasise the role of local networks, such as schools, workplaces, and voluntary organisations, in promoting awareness of end-of-life issues and fostering a shared sense of responsibility for caring for people at the end-of-life [19]. By shifting ACP beyond the clinical settings and into everyday life, communities play a vital role in ensuring that individuals’ voices are heard and their choices are respected as they approach the end of life. Community environments provide a relaxed and safe place for individuals to have open conversations about death and dying, fostering preparedness and reducing the stigma surrounding mortality. Research suggests that such discussions enhance emotional wellbeing and ensure well-planned care is delivered, while also equipping families to make informed decisions during difficult times [20]. For families, such conversations could deepen relationships by surfacing unspoken concerns and encouraging honest dialogue about personal values and wishes [21].

Social prescribing links people to non-clinical, community-based supports such as arts workshops, and evidence suggests it can help reduce loneliness, enhance mental health, and encourage more holistic, health-promoting behaviours [22]. Specifically, within the end-of-life care settings, creative expression has emerged as a meaningful approach for facilitating sensitive conversations about death and dying. For instance, songwriting has been used to help individuals communicate their emotions and reflect on their experiences [23]. Arts-based methods have also been incorporated into healthcare professional education, recognised for their ability to lower stress, foster positive emotional states, and support reflective practice, which may contribute to improved wellbeing for both patients and practitioners [24].

The ‘Art of Life’ project, implemented in 2024-2025 through Ireland’s Shared Island initiative, was designed to address the gap in public engagement with end-of-life discussions by applying creative methods in a community-based format. This cross-border project brings together socially engaged artists and community organisations to co-deliver workshops that support reflection, conversation, and planning around death and dying. The artists use non-verbal and metaphorical tools to facilitate these conversations, providing a novel form of engagement for participants who may be less responsive to traditional dialogue or clinical settings. To evaluate the social value and effectiveness of the project, a Social Return on Investment (SROI) framework was adopted. SROI is a participatory, mixed-methods approach that captures both qualitative and quantitative outcomes and translates these outcomes into an estimate of the social value generated [25]. A key element of this process is stakeholder engagement, which ensures that the perspectives of those involved in or affected by the intervention are captured and inform the evaluation design.

Therefore, the aim of this phase of the study was to explore stakeholders’ perceptions of the project’s value, identify anticipated and experienced outcomes, and develop a Theory of Change (ToC) to inform the full SROI analysis.

Method

In line with the SROI approach [25], the evaluation began by clarifying how and why change is expected to occur as a result of the project’s activities. The ToC framework served as a tool to map the logical sequence from inputs and activities through to short-, medium-, and long-term outcomes [26]. Stakeholder engagement is central to this process, helping to identify the conditions necessary for change, understand relationships, and ensure that the resulting evaluation framework reflects the experience of those directly involved.

Participants

Participants in this study were selected to reflect the diverse range of stakeholders involved in the project’s design, delivery, and workshop experience. Individuals invited included creatives involved in delivering workshops, representatives from partner organisations (e.g. Irish Hospice Foundation, Compassionate Communities, Cavan Age Friendly, South West Age Partnership, Libraries Northern Ireland, and Cavan Library Service), and workshop participants. Inclusion criteria focused on individuals who had either directly contributed to or engaged with the workshops, ensuring that both practitioner and participant voices were represented. Stakeholders were contacted via email by the project team (Creative Ireland Cavan) and invited to take part in the evaluation study and given the option to take part in the focus group in person or online via Zoom. Participants were provided a Participant Information Leaflet. Formal consents were received from participants prior to the focus group. Ethical approval for the study was granted by the Royal College of Surgeons in Ireland Research Ethics Committee (REC Reference: 202410011).

Data collection and analysis

Three semi-structured focus groups were conducted in the present study to inform the development of the ToC. The focus group discussions followed a flexible topic guide, allowing key themes to emerge naturally while ensuring that core questions were consistently addressed. Two in-person focus group interviews with project partners and workshop participants were conducted in Cavan, Co. Cavan, Republic of Ireland (RoI) and Irvinestown, Co. Fermanagh, Northern Ireland (NI). In addition, one online focus group with the creatives was conducted via Zoom, in December 2024. The sessions explored participants’ experiences with the project, perceived changes and benefits, challenges encountered, and expectations for long-term impact. The focus groups were facilitated by members of the research team from the Faculty of Nursing and Midwifery, RCSI. For in-person focus groups, one researcher led the interview as facilitator and another took notes during the session. The online focus group discussion was conducted via Zoom and recorded for transcription. Data were analysed using thematic analysis, following Braun and Clarke’s six-step approach [27]. The analysis was conducted by the lead researcher, with themes and interpretations reviewed collaboratively by the research team to ensure rigour and reflexivity. The notes from in-person focus groups and transcripts from online focus group recording were read line by line, and initial codes were applied to capture key ideas. Once the data was initially coded, codes were sorted into potential themes, and relevant coded data extracts were collated into themes. The themes were then reviewed at two levelslevel one was reviewing the coded data extracts, and level two was reflecting on the entire dataset. Finally, the themes were defined and further refined for analysis. An example of the coding process is provided in Table 1.

Table 1: Coding process examples.

Results

Three focus groups were conducted in December 2024. The first in-person focus group discussion was held in Cavan, Co. Cavan, RoI (FG1), with (n = 6) participants attending, and (n = 6) participants took part in the second focus group in Irvinestown, Co. Fermanagh, NI (FG2). One online focus group discussion with the creatives was conducted via Zoom (N = 8) (FG3). The focus group discussions lasted approximately 60-90 minutes. Key themes identified from the focus group discussions are provided in the following sections.

Key themes from focus group discussion with participants

Theme 1: Creative activities delivered in the ‘Art of Life’ project

Theme 1 presents the workshops and activities delivered as part of the ‘Art of Life’ project.  Participants took part in sessions that included poetry, dancing, reminiscence therapy, memory box creation, etc. Participants shared that memory box creation was meaningful and particularly as it allowed them to reflect on their legacies and leave behind something memorable for their families.

Participant 2 (FG2) shared, “Making a memory book - put anything you liked in it, things important to you, the story of your life - as part of the process of preparing for end of life… what made you think about your legacy”.

“When the family is emotionally upset, they cannot remember my wishes where if it is written in a book they will remember. At time of stress the mind goes funny.” “I hope to use it when the time comes so that there will be unity in my family”, Participant 1 (FG2). 

Poetry, drumming and singing were other significant activities mentioned by participants, bringing therapeutic and communal benefits and enabling participants to explore different journeys in life. Participant 3 from FG1, who attended the poetry workshop, finding the process deeply reflective, said: “…death is not the end but maybe the start of something new, boarding a ship and leaving this shore behind and going to another shore and meeting those people gone before you”.

Participant 5 (FG1) emphasized the artistic components in workshops, “…(I) felt the artistic side of the programme gave people an outlet to tell their stories”. Participants also expressed how these activities allowed them to enjoy, and offered emotional release and connection with others. Participant 4 (FG1) said, “I couldn’t sing, but I could dance. I went to the singing group, and I lost myself in it”.

Theme 2: Stakeholder expectations and desired outcomes from the ‘Art of Life’ project

Participants, including workshop facilitators, project partners, and end users, expressed a range of expectations for the ‘Art of Life’ workshops. A common desire was to develop a better understanding of end-of-life planning and to grow more confidence in initiating open conversations with families and communities. The workshops were widely seen as providing a safe, supportive environment to explore sensitive but important topics that are often avoided, such as personal wishes for end-of-life care and the emotional burden placed on loved ones.

“… celebrate instead of mourning – workshop enabled this, provided a space to have conversations about losses we have had and think about what you would like for your own death,” Participant 2 (FG1).

Participants highlighted the importance of preparing in advance and ensuring that personal preferences are documented to avoid misinterpretation by family members. For example, Participant 1 (FG1) noted, “Families have other ideas and don’t think about what the person was like, and so it is important to write it down.”

Creative approaches such as reminiscence therapy, poetry, and drumming were seen as effective tools for enabling conversations and lowering emotional barriers. Participant 6 from FG1 shared that: “Reminiscence therapy sparked those conversations-felt easier through the art,” while others noted that engaging in the workshops led to increased communication with friends and family. Participant 2 (FG2) said that the workshops encouraged deeper family discussions, noting, “… because of this book, I’ve talked to my children a lot about things...”. In addition to fostering dialogue, the workshops encouraged practical preparation. Stories of people who had pre-arranged funeral details or used the journalmaking activity to document life stories and wishes highlighted the value of blending reflective and practical approaches. “The journal to me is the ideal opening because it shows the journey of my life and also my wishes might be the final chapter. It’s good to have conversation with even small children because it helps them.” (Participant 3, FG2).

Theme 3: Emotional and wellbeing outcomes

Participation in the ‘Art of Life’ workshops was associated with positive emotional and mental wellbeing outcomes. The creative and reflective nature of the sessions provided a safe environment for emotional expression, enabling participants to process experiences of loss and consider future-oriented themes such as legacy and hope. As one participant reflected, “Having a ‘what matters’ conversation... it brings you out of yourself” (Participant 4, FG2).

Art-based activities, including reminiscence therapy and journalmaking, helped reframe discussions around death from a source of fear to an opportunity for meaningful reflection. These exercises facilitated both internal insight and interpersonal connection, as expressed by Participant 2 (FG1): “…it did open other conversations. It opened up the idea of what I would put into the box we made and how my children would feel about it.”

For many, this shift led to a more proactive and positive outlook on end-of-life. Participant 6 (FG1) noted, “It changed the focus to a more positive outlook rather than a negative worry about being left behind or leaving a significant other behind.” Similarly, Participant 3 from FG2 shared: “The journal is the ideal opening, it shows the journey of my life and my wishes as the final chapter.”

Creatives also observed the emotional depth of participants’ engagement. One noted that the workshops allowed people with various limitations, including mobility, cognitive, or emotional barriers, to participate meaningfully through small adjustments: “We found that with small adjustments, they could contribute meaningfully” (Participant 6, FG3). Another reflected on the emotional release that occurred during sessions: “You could see the energy shift in the room. People letting go of things they didn’t know they were holding” (Participant 4, FG3).

Theme 4: Collaboration and professional growth among creatives

The workshops were widely perceived as transformative experiences, not only for the end users but also for the creatives who facilitated them. Creatives described how their involvement in the ‘Art of Life’ project had a profound impact on both their personal growth and professional development.

Involvement in the project led some creatives to re-evaluate personal values and priorities. One participant (Participant 1, FG3) commented on the reprioritization that emerged from this reflective work: “I reprioritize things…we are not going to live forever... it’s important to do things for others, but also to do what you need for yourself.” The project also encouraged innovation and inclusivity in creative practice. For example, one creative (Participant 4, FG3) adapted dance sessions to be accessible for individuals in wheelchairs or those with limited mobility. They observed remarkable changes in participants: “It is unbelievable how people change so quickly… at the end everybody was dancing, everybody was singing so (the) experience was unreal, including some of the occupational therapies they say.”

Moreover, the project appeared to deepen the creatives’ connection to others and enhance their practice. As one participant (Participant 8, FG3) described, “I have found myself making definitely a stronger connection with people…  this (project) has definitely informed me and has strengthened my delivery of what I do as (it) helps me engage with people.” The creatives expressed how the project offered an opportunity to break the solitary nature of their practices and work together across different art forms. Participant 7 (FG3) shared, “I was at a point where I was looking to collaborate with other people... this is a lovely marriage”. Creatives also highlighted the value of professional development embedded in the project, including shared learning and hands-on experience during delivery. Participant 5 (FG3) said, “(This experience) may be an opportunity to cherry-pick (ideas) and meet other people and see whether we’re all singing off the same page”. Several creatives also highlighted how the project affirmed their professional identity. The recognition they received was interpreted as a meaningful sign of respect. One creative emphasized, “Respecting artists’ time and paying us is a huge demonstration of respect-it means a lot and shows this project values what we bring,” and reflected on this signified a turning point in their career: “Professionally, I think it’s going to reshape the direction of my socially engaged work... I’m seeing this through line and how different aspects of me are coming together and clicking together.” (Participant 6, FG3)

Theme 5: Challenges and lessons learned

The findings showed the necessity of sensitive facilitation, transparent framing, and the integration of both emotional and practical components to support participants. According to the participants, the workshops encountered several implementation challenges, most notably societal discomfort with discussing endof-life matters. Some individuals expressed initial resistance, perceiving the topic as distressing or inappropriate. As one facilitator shared, “I was told I was bringing death to her door, and a few others rejected it when they heard what it was about” (Participant 5, FG2). Despite these reactions, some facilitators observed that even hesitant participants often remained engaged and ultimately found the experience meaningful. Misunderstandings about the workshops’ purpose also presented a barrier. Participant 1 (FG2) noted, “Initially, (we were) unaware why we were there… the way it was presented was piecemeal,” suggesting a need for clearer communication about aims and content.

From the creatives’ perspective, logistical and contextual factors presented unique challenges, particularly in care home environments. Facilitators noted limited participant access due to health conditions, medication routines, or staff assumptions about residents’ capabilities. Participant 6 (FG3) observed, “Staff often assumed residents couldn’t participate, but we found that with small adjustments, they could contribute meaningfully.” Another creative (Participant 4, FG3) shared that institutional factors sometimes limited resident engagement: “They were allowed to attend an activity but... because of the medication or maybe the illness... they are not allowed anymore to come back into the sitting room.” Despite concerns over small group numbers in some settings, creatives generally reported that more intimate group sizes fostered deeper connection and individualized engagement.

One creative practitioner noted, “We were a little bit concerned about the numbers that signed up but the small groups that we had - it really benefited the people in those groups… we had the time to talk to people and move around and chat individually as well as everybody chatting as a group, everybody felt really comfortable” (Participant 3, FG3).

Another lesson was the necessity of balancing emotional exploration with practical content in the workshops. While creative activities facilitated safe and reflective dialogue, participants expressed appreciation for advice related to ACP. One project partner (Participant 5, FG2) emphasized the value of integrating professional expertise into the sessions, noting, “People like practical stuff… funeral directors might be useful to get involved.” Several expressed a desire to continue learning about end-of-life care frameworks, such as participating in a full ACP workshop.

Finally, the project prompted discussions around participant demographics. Several creatives suggested expanding the age range to include younger adults. Participant 2 (FG3) noted, “We have mainly elderly people… I think it would be really good to have people from 40s or 30s up,” arguing that earlier engagement could normalize discussions around death and dying across generations. Another participant added that younger attendees might also engage their parents, potentially fostering intergenerational dialogue (Participant 1, FG3).

Development of Theory of Change

The development of a ToC offers a structured approach for articulating how an initiative’s activities are expected to lead to desired outcomes [28]. This process typically begins by defining intended impacts, identifying key activities, and exploring the contextual factors that may shape implementation and effectiveness. A ToC model was created to identify the expected changes experienced by the ‘Art of Life’ workshops (Table 2).

Table 2: Narrative summary of the ToC for the ‘Art of Life’ Project.