Abstract
Background:
Despite policy and health service imperatives for public involvement to be embedded within palliative care research, this practice is not commonplace. Few empirical studies have sought to explore and evaluate models of public involvement for palliative care.
Aim:
To explore experiences of public involvement within palliative care, and to identify enablers for successful models of involvement.
Design:
An exploratory qualitative design was utilized. Semi-structured interviews were conducted via zoom or telephone, and interview transcripts were subjected to inductive thematic analysis.
Setting/participants:
Purposive sampling of 23 participants with experience of public involvement in palliative care or related areas, across different health institutions in Australia and the United Kingdom, including public members and public involvement program coordinators.
Results:
Twelve public members and 11 program coordinators described their experience with public involvement in a palliative or related healthcare setting. Three themes emerged relating to successful involvement (1) Relationship building and maintenance: opportunities to enhance team familiarity, early involvement, consistent point of contact, and inclusion of more than one public member. (2) Clarity around goals of involvement: flexible roles and processes, ongoing communication, formal recognition of public input. (3) Training and support: mentoring opportunities, upskilling for public members and researchers. These enablers promoted a collegial atmosphere that enhanced personal and collective experiences of public involvement.
Conclusions:
This study reveals enablers that potentially shape the extent and effectiveness of public involvement in palliative care. Integrating these enablers has implications for future models of public involvement in palliative care and potential for enhanced research outcomes.
Public involvement can improve the quality and relevance of health research.
There is limited understanding of the optimal strategies for public involvement in palliative care research.
Public involvement in palliative care research is enhanced through relationship building and maintenance, clarity around goals of involvement and training and support.
There are important differences in the motivations and expectations of public members and program coordinators regarding public involvement.
There is a need to balance the personal and relational elements of involvement with formalized processes.
Future public involvement models should focus on creating flexible, collaborative frameworks, that allow for ongoing dialogue and two-way learning between public members and researchers.
Background
There is widening acknowledgment that patient and public involvement can improve the quality, relevance, and impact of health research. 1 Public involvement (elsewhere referred to as consumer and community involvement) has been defined as research that is carried out ‘with or by members of the public, rather than to, about or for them’. 2 While varying definitions exist, broadly public involvement requires an active partnership between researchers and public members who have a lived experience relevant to the phenomenon under study. 3 The term ‘public members’ encompasses patients, potential patients, caregivers, individuals who use health or social services as well as people from organizations who represent service users. 2 The terms ‘engagement’ and ‘involvement’ are often used interchangeably, but growing consensus suggests that ‘involvement’ is more reflective of the active and authentic contributions of public members.4,5 Most research funding in the UK is conditional on public involvement,3,6 and this is increasingly the case in other international jurisdictions including Australia. 7
Public involvement closely aligns to the provision of holistic person-centered care, which is a core goal of palliative care.8,9 Yet, compared to other disciplines, there is limited research investigating the nature of public involvement in palliative care.10,11 While the features of involvement are not dissimilar to other fields, issues stemming from power dynamics, diversity, and emotional cost may be uniquely complex in this setting. 12 People with palliative care needs may be considered ‘vulnerable’, both as research participants and research partners. 13 Recruitment of public members is therefore delicate, given the emotional nature of the research subject, and the potential for causing distress. 14 The same is true of the nature and level of involvement. Flexibility and accessibility have been identified as key priorities for public members who could not meet regularly or long term, 12 as well as accommodations for other commitments, including treatment and caring responsibilities. 12 Indeed, the potential emotional complexity has resulted in reluctance to engage with public members. 12
At present, there is limited evidence outlining optimal strategies for public involvement in palliative care research, and even less demonstrating how to effectively measure impact. One review found eight main themes central to enhancing involvement: definitions and roles; values and principles; organization and culture; training and support; networking and groups; perspectives and diversity; relationships and communication; emotions and impact. 12 Other themes derived from a qualitative interview study of participants involved at a single research institution in the UK included: building and maintaining relationships; flexibility of involvement; and finding the ‘right’ people. 6 Further research is warranted to understand how the facilitators of optimal public involvement apply across different research contexts and settings, and to identify key factors in the development of new public involvement programs relevant to palliative care.
This study sought to explore the experiences of people involved in existing public involvement programs specific or related to palliative care across different health research institutions, and to explore perspectives on successful public involvement strategies in palliative care. This was conducted with a view to identify core features of optimal public involvement in palliative care, as a preliminary step in the development and implementation of a novel public involvement strategy for palliative care in Australia.
Methods
Design
In keeping with the study’s exploratory aims, this study utilized an exploratory qualitative design, to gain in-depth insights into participant’s experiences and perceptions of public involvement and enablers to successful public involvement. An interpretative phenomenological approach was adopted to understand participants’ personal perceptions and experiences of public involvement. 15 This approach facilitated the consideration of public involvement strategies through the lens of individual experience and meaning.
Co-design procedures
The study was co-designed with two public members who each have a lived experience of palliative care and palliative care-related public involvement projects.16,17 Slattery et al. 18 define co-design as ‘meaningful end-user engagement in research design’ that ‘includes instances of engagement that occur across all stages of the research process and range in intensity from relatively passive to highly active and involved’. Co-design encompasses many different strategies for involving public members in research. The present study utilized a collaboration approach, whereby there was an ongoing partnership between two public members (CH, AP) and members of the research team. The public member co-investigators attended fortnightly investigator meetings for the duration of the project and provided oversight and guidance that informed all stages of the project. Specifically, public co-investigators: contributed to the study design and protocol development; co-developed and piloted interview guides; advised on recruitment channels; reviewed participant-facing information; attended three additional meetings to discuss and validate data interpretation and reviewed and edited the final manuscript.
Participants
Participants were people currently involved in established public involvement programs specific to palliative care or a related healthcare field (e.g. oncology). Public involvement programs encompassed differing levels of involvement, including consultation, collaboration, and user-controlled research. 2 Participants were ‘public members’ (eligible participants included people with malignant or non-malignant disease, informal caregivers and family members) or program coordinators (eligible participants included public involvement experts, researchers, clinicians, educators). Sampling focused on existing programs within an Australian context, and, to explore models from more established settings, one internationally recognized public involvement palliative care program in the UK. All participants were adults (>18 years), fluent English speakers, and able to provide informed consent. Written consent was completed via REDCap survey and verbal consent was recorded at the beginning of each interview.
Recruitment and data collection
Program coordinators were purposively recruited via email, initially via networks of the project team and expanded via snowball sampling generated through interviews with other coordinators. Two coordinators were recruited from the UK, as representatives from an established public involvement palliative care program. Public members were identified and purposively sampled through palliative care peak bodies and research or health institutions across Australia. All public members were Australian.
Participants took part in semi-structured interviews conducted between December 2021 and April 2022 and were given the option to undertake these by telephone or Zoom. Interview questions were developed by two public members (CH, AP) and two researchers (SP, AC), to explore participants’ experiences in existing public involvement programs, enablers to successful involvement, perspectives on the evaluation of public involvement programs, and recommendations for future programs (see Appendices 1 and 2). The semi-structured designed allowed for flexibility and responsiveness, to explore participants’ unique experiences while ensuring key topics were covered. 19
Data analysis
Qualitative interviews were transcribed verbatim, and transcriptions were checked against audio recordings to determine accuracy. Data were subject to inductive thematic analysis, 20 underpinned by an interpretative phenomenological framework. 15 The framework allowed for an in-depth description of individual participant’s perceptions and interpretations of their own experiences, while accurately reflecting experiences across the entire dataset. NVivo 14 was used for data management and analysis. 21 Analysis was conducted concurrently with data collection and collection ceased when data saturation was reached.
As outlined by Braun and Clarke, 20 the process of inductive thematic analysis was conducted as follows: (1) data familiarization was undertaken by two researchers (SP and MW) and involved repeated transcript readings and note-taking for individual cases. (2) Initial codes were generated from each transcript and were subsequently discussed in regular investigator team meetings (CH, AP, MW, AC, JP). Initial codes emerged directly from the data and were not pre-determined. (3) Following these initial discussions, codes were manually grouped into themes that reflected both individual experience and broader patterns. The public member and program coordinator datasets were grouped separately and then compared to identify areas of convergence and divergence. Emergent themes and sub-themes were consistent in both datasets. (4) Themes were reviewed, and through further discussions, were validated by public member co-investigators (CH, AP) and three researchers (MW, AC, JP). Any differences in interpretation were resolved through discussion until consensus was reached. There were no notable disagreements to highlight. (5) Final themes were titled by the co-investigators. (6) Quotes were re-read, and the most illustrative quotes extracted as exemplars.
Ethics
Ethical approval was obtained from the Human Research Ethics Committee at St Vincent’s Hospital Melbourne (HREC/78232/SVHM-2021-281016). Reporting followed the COREQ criteria for qualitative research. 22
Results
Participant characteristics
A total of 23 participants participated in interviews (28–98 min), including 12 public members (eight female, four male) and 11 program coordinators (all female). All public members were previous or current carers for a person with advanced illness (cancer or dementia) who had received palliative care. Public members had a vast range of experience in public involvement activities, including membership on advisory boards and project steering committees, short-term consultations on aspects of research project development, consultation for website content, development and testing, graduate training sessions, community volunteering and the facilitation of carer support groups (Table 1).
Characteristics of program coordinators and public members.
Overview
Three overarching themes emerged as shared enablers to successful public involvement in palliative care: relationship building and maintenance; clarity around goals of involvement; training and support. The associated sub-themes identified specific techniques and strategies to achieve each overarching theme. The themes and sub-themes (Table 2) demonstrated what was working well in some contexts and raised areas for improvement in others. While the themes and sub-themes were consistently found in both the public member and program coordinator datasets, there were some differences in the ways that participants made sense of certain themes. Put simply, the reported experiences were broadly similar, but the meanings attributed to these experiences differed by cohort.
Themes and subthemes.
Although experiences of public involvement were overwhelmingly positive, when these themes were not well addressed, public members sometimes perceived their involvement was inauthentic or curtailed. Involvement felt like ‘box-ticking’ when consultations were brief, at the end of research projects, or when public members felt dismissed by researchers. The latter produced power imbalances between public members and other members of the research team, leading to frustration, decreased confidence, and disengagement of public members, thus limiting the effectiveness of involvement.
“I think whenever you put [public members] in with highly trained professionals, there's a power imbalance. And depending on those people's personalities, they can either wreck your first experience or support it.” (Public member 10)
Program coordinators also noted the potential imbalances in public involvement, however, their focus remained on the strategies that could prevent these imbalances, rather than the personal impact of them.
Theme 1. Relationship building and maintenance
All participants highlighted the role of relationships in facilitating productive, collaborative partnerships between public members and researchers. While co-design and early public involvement were emphasized throughout the interviews, they contributed to the broader theme of relationship building, as they strengthened a sense of camaraderie between members of the research team. Stronger relationships were fostered by opportunities to enhance team familiarity, consistent points of contact, inclusion of more than one public member, and timing of involvement.
1a. Opportunities to enhance team familiarity
Public members spoke often of the importance of ‘getting to know’ the research team, but the mechanisms by which this occurred were sometimes unclear. Personal familiarity with the researchers increased team bonding and development, which, in turn, raised public members’ sense of ownership and investment in the project. Coordinators echoed the importance of a relational atmosphere but attributed this primarily to group size. The size of a research group shaped group dynamics and the level of familiarity between researchers and public members. Smaller groups were reported to create an environment that was more conducive to collaboration, open communication, and stronger connections between the team.
“I knew the group much better because it was only about 10 people. So, 10 versus 80. . . And so, the relationships were slightly different.” (Program Coordinator 07)
1b. Consistent point of contact
Similarly, both participant cohorts discussed the importance of establishing a point of contact who could facilitate dialog between researchers and public members. This person, usually a chairperson or coordinator, was familiar to all team members, and accessible outside of scheduled meeting times. During meetings, this person would ensure that public members felt confident to speak up, and all voices were heard and valued. When there was staff turnover and the coordinator or chairperson changed frequently, public members were more likely to feel disconnected from the team and project.
“Usually, the chairs are very proactive in saying, "Phil or John, what do you think of this?" So, they're actually respecting that you are there. They know that you can't provide the clinical information and the technical and the data information, but they make you feel engaged by specifically asking you about areas or if you have a comment to make.” (Public Member 05)
1c. Inclusion of more than one public voice
Relationship dynamics were strengthened by a more balanced ratio of public members to researchers, or at the very least, the involvement of more than one public member. When the public member was the only public representative, they were more likely to perceive power imbalances within the research team with associated reduced ability to influence decisions made.
“I’m on a couple of committees in the local health district where I’m the only [public member]. . . And you feel that your voice won’t be heard as well or as much. And you tend to be more reluctant to say things.” (Public Member 05)
In contrast, with the inclusion of more than one public member, public members could ‘bounce off’ one another with increased confidence. Witnessing the contributions of other public members activated new ideas and modes of involvement. Similarly, program coordinators recognized their role in facilitating collaborative discussions between public members, rather than solely between public members and researchers. One coordinator described best practice as involving at least two public members.
“The fact that [the public members] all know each other and it's a small group is helpful. They all bring forward their experiences to share with each other, so they're learning from each other.” (Program Coordinator 01)
1d. Early involvement of public members
Relationships and project investment were improved by co-design strategies and early public involvement, for example, at the project design phase. When public members were brought into a research project at a later stage (i.e. dissemination of results) and for a predetermined purpose (i.e. meeting grant guidelines), involvement felt less genuine. Comparatively, when public members had the opportunity to inform the research in its early stages (i.e. supporting ethics applications, co-designing outcome measures), they felt more invested.
“The main problem with people working with [public members] is that they bring them in too much at the end. . . They've already got their answer, and they're sort of just wanting to say that that people are giving their answers. So, if you are wanting it to be real, you've got to get them in early.” (Public Member 02)
Theme 2. Clarity around goals of involvement
2a. Clear, yet flexible role parameters
Public members found their involvement to be most effective when they had a clear idea of why the researchers were seeking public involvement, the intended outcome of involvement, and the expectations around their role. This was often framed as a barrier by the public cohort, who admitted to feeling confused or misled about the parameters of involvement.
“Because there isn't a lot of clarity around the role, I probably go in a bit more cautiously than I should. I hold back a little.” (Public Member 06)
While participants wanted clear role parameters, they also valued a degree of flexibility. Given the nature of palliative care, flexibility was crucial to accommodate personal commitments and the changing needs of patients and carers. Flexibility in recruitment processes was also emphasized by both cohorts, with consideration of the changing nature of illness and grief.
“In palliative care particularly, the timing's important. Because the grief period can be very long. It's a bit hard to approach someone who recently lost someone who's been through palliative care, to see what they'd like to contribute.” (Public Member 05)
2b. Opportunities for ongoing feedback regarding involvement
Role clarity was strengthened by ongoing feedback and communication between public members and researchers, outside of scheduled meetings. Interestingly, while both cohorts emphasized the value of feedback, they highlighted disparate reasons for its importance. Coordinators saw feedback as an opportunity to keep public members informed about the status of the research project. Feedback was also an opportunity to open dialog about the nature of public involvement, and why public member recommendations were taken on board, or not. This helped to clarify role parameters and manage expectations.
“So, it's a whole process that we want to bring them along the whole way. Even if they're not participating in all activities, we're letting them know everything that's going on with the project.” (Program Coordinator 10)
For public members, feedback was portrayed as a method of gaging impact. When researchers acknowledged public contributions, they felt that their input had made a difference. In this sense, ongoing and constructive feedback also counteracted potential barriers to involvement, such as perceptions of involvement as inauthentic.
2c. A personal approach to remuneration
While coordinators did see feedback as an opportunity to recognize public input, they preferred formalized recognition, usually through remuneration. Paying public members for their input was mentioned frequently by coordinators, who considered remuneration to be a key process in standardizing role parameters. Payment could also alleviate power imbalances, ensuring that all team members were appropriately reimbursed for their time.
“. . . to really reiterate to our [public members], yes, you want to give back, but you should not be the only person in the room not paid to be there. Just because you want to give back, doesn't mean you have to volunteer every aspect of your life. Your time is your time.” (Program Coordinator 01)
In contrast, remuneration mentioned less frequently by public members. The recognition that public members sought was through feedback that acknowledged their contributions as useful and meaningful. For some public members, in fact, payment could be uncomfortable as it did not reflect their motivation for involvement.
“I know a lot of people feel that they need to give people money for their time or some sort of remuneration, but I've never felt that I wanted that. Like, I do it because I want to contribute.” (Public member 10)
Theme 3. Training and support
All participants found public involvement-specific training to be helpful, as it could alleviate perceived power imbalances between public members and other members of the research team. Participants recognized the need for training that ideally addressed several facets of involvement, including public speaking, media training, research and health literacy, and informal mentoring with other public members.
3a. Peer mentoring and support
Public members frequently discussed the value of being around other public members in an informal mentoring context. This allowed public members to build rapport and also facilitated learning from someone who had relevant and valuable experience. Although not formalized training, public members reported increased confidence after working with other public members. Program coordinators similarly recognized the advantages of buddy systems and informal learning between public members.
“But just that confidence that you get. . . if someone buddies up with you who has a bit more experience than you, that's encouraging.” (Public Member 07)
3b. Training for public members
Both informal mentoring and formal induction sessions were most valuable when embedded early. When training occurred at the beginning of involvement, public members felt better equipped to perform the tasks expected of them and to contribute in the most meaningful way. Further, this helped to clarify role parameters and goals of involvement.
Informal upskilling was another helpful method to embolden public members and provide them with the appropriate tools to engage effectively. Rather than spending time and resources on large, formal training sessions, program coordinators discussed the utility of informal one-to-one sessions for relevant projects.
“I did an informal one-to-one session with her, talking about coding and all that sort of thing. . . And I think that’s probably one of the most common ways that we do that upskilling. . . is in response to needs on particular projects, and what people are interested in and want to get involved with.” (Program Coordinator 04)
3c. Training for researchers
Participants emphasized the utility of researcher training and upskilling. Participants felt that researcher training was critical to ensure that researchers (a) understood the value of embedding lived experience in research, (b) were kept up to date with best practices of public involvement, and (c) had the tools to engage with public members in a sensitive and appropriate way.
“We actually get regular clinical supervision to be able to talk through some, how we help, how we deal with the [public members]. That's what really, really helped us. With what we learned from that clinical supervision, we can put into practice when we speak to some of those [public members].” (Program Coordinator 11)
Discussion
Main findings
The current study explored experiences and enablers of successful public involvement from the perspective of public members and program coordinators presently involved in research programs in Australia and the UK. Three key enablers emerged, with corresponding strategies: relationship building and maintenance; clarity around goals of involvement; training and support.
What this study adds
This study identified some divergence in the perspectives of program coordinators and public members, that should be considered in future public involvement models. For example, while coordinators expressed a desire to systematize and formalize involvement processes, public members often prioritized the personal and relational aspects of involvement. The desire to systematize public involvement likely stems from the motivation to legitimize and promote the frequency of involvement in research (e.g. public involvement as a funding requirement). This may reflect an attempt to efficiently and rationally manage complex human activity as well as protect the public members via formal organizational processes. 23 However, such processes may diminish the creative opportunities that arise from genuine collaboration. In a commentary on the learning outcomes of public involvement, Staley and Barron argue that public involvement should not be treated as an ‘intervention’ needing an evidence base, but rather, as ‘conversations that support two-way learning’. 24 They suggest that attempts to standardize involvement processes ‘as ‘methods’ and to objectify the outcomes “may be akin to forcing a square peg in a round hole’”. An overly systematized approach to public involvement may inadvertently result in inflexible processes that undermine the rich human elements of authentic involvement. There is a need therefore to balance the personal motivations of public members with the formal processes that underpin involvement. Public involvement cannot be a strictly top-down, fixed process; rather, it should be characterized by ongoing dialog and two-way learning, to progressively refine and enhance the involvement model.
This study underscored the critical importance of trusted relationships across all members of the research team.6,25 –27 For public members, sharing deeply personal and emotional stories relating to one’s lived experience requires trust. Genuine relationships were characterized by a sense of equality amongst team members, and mutual investment in research projects. However, in interviews with researchers and public members, Green and Johns found that equal relationships and ‘sharing power’ were often incompatible with the hierarchical nature of academic environments. 28 They revealed that public members were often slotted into a ‘pre-existing structure’, rather than having autonomy over the scope of their own involvement. This experience was echoed by public members in the present study. Here, we note a tension between relationship building and clarity around goals of involvement. While clarity is important, the goals and scope of involvement should be collaboratively negotiated between team members and not predetermined by coordinators or institutions. 29 As Pearce suggests, guidelines that truly wish to fulfill the aim of genuine relationship building must also acknowledge ‘how choice, agency and identity are relationally formed’. 30
Future directions
The themes and sub-themes raise several practical approaches for the development and implementation of future models of public involvement in palliative care. Building on our findings and existing public involvement guidelines, we have extrapolated a set of suggested approaches, presented in Table 3. These are preliminary and practical steps that may be considered from both institutional/strategic and individual/relationship levels (e.g. early recruitment and induction, consistent points of contact). These suggested approaches were co-developed and refined with our public member co-investigators and have been mapped to published public involvement guidelines and frameworks for health research (including NIHR, 25 INVOLVE, 2 and recommendations from the RAPPORT study 3 ). However, they remain an interpretative synthesis of the present findings rather than formally validated guidance. To ensure rigor and acceptability across diverse settings, we recommend that future projects formally validate and refine these suggested approaches through staged stakeholder engagement, structured consensus methods (e.g. Delphi) and local co-design activities. As Greenhalgh et al. 17 have suggested, a single, one-size fits all framework for public involvement may be less useful than resources and principles that have been locally co-designed.
Suggested approaches for effective public involvement in palliative care.
Strengths and limitations
A notable strength of this study was its co-design approach, involving an ongoing partnership of public members and palliative care researchers. This methodology ensured that the lived experience perspective was embedded at all stages of the project.
Despite advertising through multiple organizations, all public members were carers, and no public members with a lived experience as a patient or person living with a malignant or non-malignant disease were recruited for the study. The unique demands and experiences of patients with palliative care needs involved in public involvement projects are essential to fully understanding optimal public involvement. The research teams personal experiences with public involvement (as both researchers and public members) and familiarity with the subject matter, could have inadvertently shaped data interpretation and interview directions. To mitigate this potential bias, an inductive thematic approach was employed to ensure that themes emerged directly from the data. Additionally, the suggestions and enablers raised by participants in this study were collected from two international settings with well-developed palliative care services, and as such, may not be generalizable to other less resourced settings. The suggested approaches are preliminary and will require further developmental work and evaluation including acceptability, feasibility and utility.
Conclusions
This study identifies enablers to successful public involvement in palliative care. Instead of making assumptions about the vulnerability of those with palliative care needs, researchers should strive to create flexible and accommodating involvement parameters that enable diverse, individualized levels of involvement. Future programs should allocate time and resources to relationship building, co-designed goals, and support systems.
Footnotes
Appendix 1
Appendix 2
Acknowledgements
We would like to thank all participants who contributed to the study, particularly the public members who generously shared their personal experiences. We would also like to extend our thanks to our co-authors CH and AP, whose lived experience and ongoing involvement has ensured that this research has relevance and utility for patients and the public.
Ethical considerations
The study received ethics approval from the Human Research Ethics Committee at St Vincent’s Hospital Melbourne (HREC/78232/SVHM-2021-281016).
Consent to participate
All participants provided written and verbal consent. Participants were informed that the interviews were being conducted to inform the development of a new public involvement strategy in palliative care in Australia. They were made aware that this research was part of a broader initiative to enhance public involvement in palliative care research, services, and policy.
Author contributions
All authors made contributions to the conception and design of the study (AC, SP, CH, AP, JP, MW, PH) including the protocol development (AC, SP, CH, AP), obtaining funding (AC, PH, JP) and ethics approval (AC, SP). Recruitment and data collection was undertaken by SP, a female palliative care researcher (PhD). Transcripts were analyzed by MW and SP, with input on interpretation from CH, AP, JP and AC. The manuscript was drafted by MW, AC and JP, with review and approval from SP, CH, AP and PH.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was conducted under the auspices of the Palliative Care Research Network, funded by the Department of Health and Human Services, Victoria, Australia. AC is supported by an NHMRC Emerging Leader Fellowship.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data management and sharing
Data from this study are not currently available online.