Bridging inequities in palliative and end-of-life care: The role and experiences of community connectors

Description of the intervention

This study focused on evaluating the acceptability and feasibility of a ‘Community Connector’ intervention within cancer, palliative, and end-of-life care pathways. The intervention was introduced in response to an investigation into health-related inequalities, which highlighted significant gaps in patient and community experiences, particularly among seldom-heard populations in cancer care. ²⁴ One of the key recommendations from the review was the establishment of new ‘Community Connector’ roles aimed at improving access to cancer and end-of-life care for ethnically diverse communities. These roles were designed to address the unique challenges faced by underrepresented groups and ensure that their needs are met within the healthcare system. The Community Connector’s role involves building and sustaining relationships within local populations, facilitating conversations around cancer symptom recognition, risk factors, treatment access, care pathways, end-of-life care, good death, loss, bereavement, and offering information about palliative care services.

In this study, Community Connectors are embedded within South Asian, Pakistani and Bangladeshi; Eastern European; and Black African and Caribbean communities in an urban setting with significant ethnic diversity and economic deprivation in the Southeast of England. These localities, while distinct, share characteristics of ethnic diversity and social challenges. ²⁵ Some urban areas experience high levels of deprivation, with diverse groups residing in conditions that impact health access and outcomes.

Participants

The participants in this study were four Community Connectors with diverse backgrounds, aligned to the largest minority groups across the region: Community Connector A (CCA), a female from a South Asian background; Community Connector B (CCB), a female from a Black Caribbean background; Community Connector C (CCC), a male from a South Asian background; and Community Connector D (CCD), a male from an Eastern European background. These individuals were purposively selected, having been specifically recruited for the Community Connector role, with three employed by local councils and one by a local hospice in a crowdfunded position. They were appointed to carry out community engagement work as part of a funded programme, and their participation in the research followed as part of an embedded evaluation requested by the funder. All Community Connectors were invited to take part in the study; no inclusion or exclusion criteria were applied. Nobody declined to participate or withdrew during the course of the study. Ethical approval for the study was granted by the University of Bedfordshire’s Institute for Health Research Ethics Committee (REF IHR1004) in June 2023. Before collecting any data, informed consent was obtained from all participants. Community Connectors were given clear information about the study, including its purpose and their right to take part voluntarily. All interviews and diary entries were anonymised, securely stored, and managed in line with GDPR and the university’s data protection policies.

Data collection began approximately 6 months after the recruitment of the Community Connectors, although not all participants started their roles at the same time. While all interviews were conducted at the same time, the participants’ experiences differed based on when they began their roles. CCA started in October 2022, CCB began in May 2023, CCC started in June 2023, and CCD began in November 2022. The timing of their roles meant that their experiences and reflections during data collection were influenced by how long they had been in the role, providing a range of perspectives on the intervention’s implementation at different stages.

Procedure and data analysis

Data collection for this study involved a combination of longitudinal-linked interviews and diary entries. The interviews were conducted at multiple points to track the evolving experiences of the Community Connectors over time. The initial interviews focused on understanding their roles, rewards, challenges, and any changes in their practice. Following the initial interviews, participants were asked to complete weekly diary entries, reflecting on significant events and their feelings, insights, and future actions. These diaries allowed for deeper personal reflection on their experiences in the role. Follow-up interviews were conducted to explore how the roles and experiences had changed since the initial interview and to gather further details based on the reflections captured in the diaries. A summary of the interview and diary schedules is provided in Supplemental File 2, which includes the specific questions and prompts used during data collection. This combination of interviews and diaries provided a rich, longitudinal dataset to assess the impact and cultural appropriateness of the intervention.

The Community Connector interviews were conducted by the lead researcher, J.W., a female Research Fellow with a doctorate in education and expertise in qualitative methods, including interviews. J.W. established a trusting relationship with the participants by ensuring they understood the study’s goals and that all data would remain anonymous. She also clarified that the study was a quality improvement research project commissioned by the funder, aimed at assessing the feasibility, acceptability, and cultural appropriateness of the Community Connector intervention. Participants were able to contact the researcher via WhatsApp messages, email, or telephone if they had any questions or concerns throughout the study. The interviews took place face-to-face in July and November 2023, with the final interview conducted online in April 2024. Each Community Connector took part in three interviews throughout the study period, allowing for a comprehensive exploration of their experiences over time. The interviews averaged 1 h in length and were audio recorded, or video recorded for transcription and subsequent analysis, ensuring accurate data capture and facilitating a detailed examination of the participants’ perspectives. Field notes were also taken during the interviews to capture additional contextual observations and reflections, further enriching the analysis.

As the researcher, J.W. acknowledged her potential biases, assumptions, and interests in the topic, particularly her commitment to improving access to culturally appropriate healthcare for marginalised communities. With a strong background in qualitative research, J.W.’s interest in the study stemmed from her long-standing focus on social equity and healthcare access for diverse populations. She ensured that these interests did not influence the data collection process by maintaining a reflexive approach throughout the study, continually reflecting on her role and the potential impact of her perspectives on the research process. This approach helped mitigate any biases, ensuring the validity and trustworthiness of the findings.

In addition to the interviews, a total of 38 diary entries were submitted by the participants, capturing their ongoing reflections and experiences throughout the study period. Some participants preferred to submit diary entries on a weekly or fortnightly basis, while others opted for quarterly reports. Not all Community Connectors provided the same number of diary entries, which reflects individual preferences for reflection frequency and the varying demands of their roles. This variation highlights the flexibility of the data collection approach and provides insight into the differing ways participants engaged with the study. These diary entries provided valuable insights into the day-to-day realities of the Community Connector role, complementing the interview data and contributing to a comprehensive understanding of the intervention’s implementation.

The data collected from interviews and diary entries were analysed using reflexive thematic analysis, as outlined by Braun and Clarke, ²⁶ a widely used qualitative research method that supports flexible, in-depth exploration of experiential data. This approach enabled the identification, analysis, and interpretation of patterns across the dataset while remaining attentive to the situated contexts and subjectivities of both participants and researchers.

We followed Braun and Clarke’s six-phase process to guide the analysis. First, data familiarisation involved repeated reading of transcripts and diary entries to gain a deep understanding of the content. Second, initial codes were generated inductively across the entire dataset using NVivo 12 software. ²⁷ Third, codes were organised into candidate themes that captured key elements of the Community Connectors’ experiences. Fourth, these themes were reviewed against the coded data and the full dataset to ensure coherence and relevance. Fifth, themes were defined and refined to ensure distinctiveness and alignment with the study aims. Finally, the sixth phase involved producing the report and integrating representative extracts.

Analysis was conducted by J.W., who coded and developed case studies for each Community Connector before comparing findings across participants to identify shared and divergent experiences. To enhance trustworthiness and rigour, the analysis followed a reflexive approach that acknowledged researcher positionality and maintained an audit trail throughout coding and theme development. Regular peer debriefing within the research team supported critical reflection and credibility checking. While there were no major discrepancies in theme identification, interpretative differences were discussed collaboratively to ensure transparency and coherence. A COREQ checklist is included as Supplemental File 1 to support methodological transparency.

The role of a community connector

A Community Connector must be a trusted and integral part of the community to gain acceptance. Many communities are initially cautious, making trust-building essential before individuals feel comfortable sharing their experiences. Effective communication skills, passion, and cultural familiarity are key attributes.

Integrity, you have to be a key member of that community because they are very reserved. So, for them to accept something or learn something completely different, it’s easier if they trust you. (CCC)

Not until you’ve built a relationship and people know who you are, they will not let out their story. But you have to have that relationship. Trust. (CCA)

These quotes reflect the importance of lived experience and embeddedness within the community. Trust and relationship-building emerged as foundational to the effectiveness of the role, especially in communities where disclosure of personal health experiences is rare or culturally discouraged.

Evolving job expectations

Initially, Connectors expected a role focused on raising awareness through marketing and presentations. However, they found that much of the work involved direct conversations and research. While the lack of initial materials caused frustration, the introduction of a website and leaflets helped clarify their responsibilities. The evolving nature of the role was ultimately seen as beneficial.

It’s not just presentations; it’s having a conversation. (CCC)

There is now much more clarity in terms of our role and what we’re expected to achieve. (CCB)

These statements illustrate how Connectors moved from an initial assumption of a one-way communication role to a more dialogic and adaptive approach. The evolution of expectations and clarification of purpose over time was viewed positively and contributed to increased confidence.

Building networks and engagement

Networking has been crucial in establishing relationships with other organisations. Over time, instead of actively seeking opportunities, Connectors began receiving invitations to events, reflecting progress in relationship-building.

Now, people are inviting us instead of us seeking them out. That’s progress. (CCB)

As trust grew, community engagement increased, with more individuals approaching Connectors for support.

A lot more engagement. People are more open to having conversations because they are comfortable speaking with someone from their community. (CCC)

These reflections show progress in relational capital. The shift from outreach to invitation signals increased visibility and legitimacy, while greater openness among community members suggests that sustained presence-built familiarity and lowered barriers to engagement.

Communication strategies and community engagement

Various strategies have been used to reach communities, including translated materials, social media, and traditional media like radio. Ensuring people understand how to access available services has been a priority.

Our job is to make them understand that they can get the right support. (CCD)

Feedback was overwhelmingly positive, with strong engagement at events and growing collaboration with organisations to address health concerns. The role has facilitated discussions around sensitive health topics such as cancer, mental health, and end-of-life care.

The feedback was amazing; we certainly created a difference. (CCA)

Opportunities to speak to the audience and speakers were revealing. If we were able to change patterns of behaviour, motivate people to think about how cancer can impact their lives, then what an accolade. (CCB)

These quotes show how Connectors tailored their messaging through a mix of strategies. The feedback indicates resonance with audiences, particularly when communication addressed emotional and cultural dimensions of care. Community events also served as key platforms for both dialogue and impact.

Challenges and constraints

Managing workload within limited hours has been difficult, with many Connectors expressing the need for a full-time role. Time constraints and workload pressures were recurrent concerns, making it difficult to balance responsibilities.

Limited time for preparations. (CCA)

This role should be at least a full-time role or 30+ hours, as I have been working beyond my contracted hours. (CCA)

Challenges included cultural sensitivities, language barriers, and overcoming stigma around cancer. Although Community Connectors had strong roots in their communities, they did not necessarily represent all subgroups. Many communities were linguistically and culturally diverse, with members speaking a range of languages and dialects that the Connectors did not always share. This created difficulties in communication and required tailored approaches to build trust. In some cases, stigma around cancer or reluctance to discuss end-of-life issues added to the complexity of engagement. Building trust within first-generation communities, particularly where past experiences with healthcare were negative or communication needs unmet, required persistence and sensitivity.

The difficult bit is getting people to talk to you. Some have had very traumatic experiences. (CCB)

Maintaining work–life balance was also a challenge, as work remained on their minds even during time off.

I am on annual leave this week, but work is still at the back of my mind. (CCB)

These quotes capture both practical and emotional pressures. Limited hours restricted planning and delivery, while emotional demands, especially when working with people affected by trauma or serious illness, contributed to role strain. Connectors’ deep commitment sometimes blurred work–life boundaries, underlining the need for formal support structures.

Development of the role

Strong management support enabled Connectors to shape the project, gain confidence, and establish valuable connections. There was a growing excitement as the project gathered momentum.

I was able to steer this project with the help and guidance of my manager. (CCA)

I have developed a good understanding of my role and my purpose throughout this year. (CCC)

The momentum is gathering now, and I am excited. (CCB)

These reflections demonstrate increased ownership and professional growth. As confidence grew and responsibilities became clearer, Connectors described a sense of momentum and agency, suggesting a maturing of both role and identity within the project.

Measuring impact and personal learning

Success is measured through increased diversity in hospice patients, stronger community connections, and greater awareness of available services. Key indicators include trust, engagement, and positive feedback.

If we can get people to talk, that’s the biggest achievement. (CCD)

Connectors also highlighted the importance of understanding their audience and adjusting their approach accordingly.

I learnt to value the audience. I will go away and adjust my presentation to reflect this. (CCB)

Connectors assessed impact less through metrics and more through relational change. Facilitating dialogue in contexts of silence or stigma was considered a significant success. Their reflections also show adaptive learning, where feedback informed future practice.

Rewards and support

Despite the challenges, Connectors found the role rewarding, both personally and professionally. They valued the relationships built, the skills learned, and the ability to make a difference. A supportive and collaborative environment further enhanced their experience.

Making connections and developing relationships has been really rewarding. (CCB)

It feels like a big family now, where we can work together and put our skills to use. (CCA)

These final quotes reflect the intrinsic satisfaction derived from the role. Positive peer dynamics and the ability to contribute meaningfully to their communities reinforced a strong sense of purpose and motivation, even amidst challenges.

Overall, the findings illustrate the evolving nature of the Community Connector role, the positive impact on community engagement, and the need for ongoing support and resources to sustain its effectiveness.

Feasibility and acceptability of the community connector role

Findings from this study indicate that the Community Connector model is a feasible and acceptable approach to improving engagement with cancer, palliative, and end-of-life care services within diverse communities. Community Connectors played a vital role in bridging cultural and structural barriers, facilitating access to information, and fostering trust between healthcare providers and marginalised groups. These findings align with previous research highlighting the disparities in cancer treatment and access to palliative care among ethnic minority and socioeconomically disadvantaged groups.^2,10,14 As highlighted in the Introduction, ethnic minority populations in the United Kingdom are significantly less likely to access hospice care, often due to mistrust, limited cultural awareness among providers, and inadequate community engagement.^4,5,9 This study reinforces those patterns and provides evidence that Community Connectors offer a practical route to reducing these disparities.

The longitudinal-linked interviews and reflective diaries highlighted how Community Connectors successfully embedded themselves within their communities, leveraging existing relationships and cultural knowledge to support individuals navigating complex care pathways. However, challenges such as workload intensity, emotional strain, and the need for ongoing training were identified, suggesting areas for further development to enhance role sustainability. Community Connectors emphasised the importance of trust and clear role expectations in ensuring the success of the model, yet many expressed the need for full-time positions to manage their workload effectively. This reflects the broader challenges identified in engaging ‘seldom-heard’ groups ¹³ and ensuring sustainable interventions.

Impact on community engagement and awareness

Community Connectors were found to increase awareness of cancer symptoms, care pathways, palliative services, and end-of-life planning within diverse communities. Their culturally sensitive approaches helped reduce stigma and foster open dialogue on topics that are often considered taboo. Community members reported feeling more confident about accessing services, and the presence of a trusted intermediary helped address fears and challenge misinformation, particularly around hospice care. While the model was effective in improving engagement, barriers such as institutional mistrust and language difficulties continued to affect access. These findings support the value of community-led engagement strategies but also highlight the need for broader systemic changes to improve equity in care.

The work of Community Connectors aligns with national efforts to reduce health disparities and advance culturally responsive care. Their ability to build trust and facilitate open conversations contributes to improved service awareness and may help to address the long-standing underuse of hospice and palliative care among ethnic minority communities. This reflects wider goals set out in the NHS Long Term Plan and the Core20PLUS5 framework, which advocate for inclusive, locally rooted solutions to health inequality.

Challenges and barriers

While the Community Connector model showed promise, several challenges emerged. The emotional demands of the role, particularly when supporting individuals facing terminal illness and bereavement, were significant. Community Connectors reported the need for emotional resilience training and structured peer support to mitigate burnout. Additionally, institutional constraints, such as limited funding and inconsistent organisational support, posed barriers to long-term programme sustainability. Addressing these challenges requires a structured framework that includes tailored training on emotional resilience, cultural competence, and managing difficult conversations around illness and bereavement. Connectors would also benefit from regular clinical supervision, peer learning opportunities, and protected time for debriefing. In addition, clear role definitions and integration into multidisciplinary teams could reduce ambiguity and support more sustainable working practices within healthcare infrastructures. Despite these difficulties, Community Connectors felt supported by their teams and valued the opportunity to engage with their communities. These findings align with previous research indicating that community-driven approaches require sustained institutional backing to be effective. ¹⁵

Policy and practice implications

The findings align with national health equity initiatives, including the Core20PLUS5 framework, which emphasises targeted interventions for deprived and marginalised populations. The Community Connector model represents a scalable strategy for addressing health inequalities by embedding trusted individuals within communities to facilitate access to services. The NHS’s commitment to addressing disparities in end-of-life care^7,8 provides a policy framework within which Community Connector initiatives could be further developed. Policymakers and healthcare organisations should consider integrating Community Connectors into broader public health initiatives, ensuring adequate training, supervision, and financial support to maximise impact.

In particular, there is scope to embed Community Connectors earlier in the care continuum, engaging with communities before individuals present with advanced illness. Their involvement in health promotion, early cancer awareness campaigns, and culturally tailored education could build trust and reduce stigma over time. Commissioners and health systems might consider formalising these roles within primary care networks or integrated care systems to facilitate proactive, not just reactive, outreach. Investment in training should be based on the specific challenges Connectors identified, including trauma-informed approaches, managing emotionally charged conversations, and navigating cultural taboos. Support mechanisms could include structured mentorship, regular supervision sessions, and inclusion in community of practice networks to strengthen retention and reduce burnout.

Strengths and limitations

A key strength of this study is its longitudinal qualitative design, which enabled detailed exploration of how the role evolved and how Community Connectors engaged with their communities over time. The use of multiple data sources, including interviews and reflective diaries, contributed to the richness and credibility of the findings. The inclusion of a COREQ checklist further supports transparency in reporting.

There are also limitations. The small sample size of four Community Connectors limited the breadth of the findings but allowed for deep, case-based comparison. In this sense, the small number of participants was both a strength and a limitation. The Connectors were selected for their community knowledge and trusted status, which may have positively influenced outcomes. These factors were considered through reflexive practice, and peer debriefing was used throughout the analysis to support rigour and reduce the influence of individual bias.

Future research directions

Further research is needed to evaluate the long-term impact of the Community Connector model on health outcomes and service utilisation. Comparative studies across different healthcare settings and populations could provide deeper insights into best practices for implementation. Additionally, exploring digital and hybrid models of community engagement may enhance the reach and sustainability of the Community Connector approach. Given the persistent disparities in palliative care access,^10–12 future research should also focus on how Community Connectors can be embedded into existing health service infrastructures to ensure long-term effectiveness. Future studies could also evaluate the effectiveness of early, preventative community engagement compared to late-stage intervention, helping to identify the most impactful points for Connector involvement.