Abstract
Globally there is acceptance by government bodies, policy makers, research funding bodies and researchers for service users, especially healthcare services, to be actively involved in research and public service design (Gillard et al., 2012; Greenhalgh et al., 2019; Ottmann et al., 2011). Debate surrounds how service users should be included. Within many jurisdictions, the ideals of participation envisaged by visionaries such as Sherry Arnstein (1969, 2019) in her ladder of citizenship participation are relegated to reference groups or consultations and often after the initiation or commencement of a proposed change or research proposal. Arnstein notes (2019): Participation without the redistribution of power is an empty and frustrating process for the powerless (p. 24). Participatory methods that reflect Arnstein's (2019) “Degrees of citizen power” (p. 25) promote collaborative governance between people at the center of a challenge, design process, research study, or service system, and researchers, policy makers, clinicians, and influential decision makers (Jagosh et al., 2011). This extends to the inclusion of mental health family carers and service users in research, service design and system reform work (Banfield et al., 2018; Productivity Commission, 2020; State of Victoria, 2021). While growing evidence of mental health family carer perspectives and leadership in research exists, study numbers remain low, with few reflecting on or espousing best practice, with noted difficulties identifying the epistemological impact on the research process and outcomes (Bowness et al., 2023; Gillard et al., 2012; Walters & Petrakis, 2022).
In their systematic review of published frameworks supporting patient and public involvement in health-related research, Greenhalgh et al. (2019, p. 787) identified 65 frameworks, with most scoring highly on the Canadian Centre for Excellence on Partnerships with Patient and Public evaluation tool. Thirty of the frameworks—13 power-focused (changing or disrupting traditional power relationships) and 17 partnership-focused—were reviewed by the lead author, CW, to identify underlying principles that would support mental health family carers partner in research. The power-focused frameworks were developed by academically led teams to challenge power-differentials between “researcher-lay partnerships” (Greenhalgh et al., 2019). Critical theories, including Foucault, Habermas, and Arnstein, were considered in developing power related responses within the frameworks including access to knowledge and resources, group dynamics (structural, relational, and individual), cultural fit, the nature of the design, and outcomes such as individual and community capability and power-relations (Gradinger et al., 2015; Greenhalgh et al., 2019). Principles that promoted partnership included public-led governance, transparent processes, clear communication, accountability, discussion about roles, reimbursement (fairness of opportunity), respect, responsiveness, support, training, and capacity building (Greenhalgh et al., 2019).
Arnstein (1969) addresses levels of participation for citizens aligned to control and power differentials, with the three top levels being partnership, delegated power, and citizen control. This article reflects upon feminist informed principles of power and partnership (see Table 1), which were adapted from the works of the National Institute for Health and Carer Research (2021) and Gradinger et al. (2015), and guided the planning of participatory processes within a coproduced study exploring mental health family carers’ experiences during COVID-19 (Petrakis & Walters, 2022; Walters, McDonald et al., 2024; Walters, Solich et al., 2024; described in more detail below).
Principles Relating to Power and Partnership for Coresearch Along a Continuum of the Research Process.
The principles were considered in relation to the phases of the research process and in addressing barriers for participation including systemic (funding, resourcing, and the invisibility of family carers within the mental health system), contextual (the COVID-19 pandemic, and unique challenges for mental health family carers), and individual (family carer challenges in accessing resources, lack of confidence in ability, lack of financial resources and time, and exhaustion) alongside phases of the research process (Chisholm et al., 2018).
Coproduction as a participatory method has been proposed as leading to benefits through relationships between the participants that are transparent and accountable. Identified as a contested term, coproduction within health systems is seen as bringing together “citizens, communities, patients, and/or service users with those working in health and social care research, policy, and practice, and attempting to form equitable partnerships” (Beresford et al., 2021, p. 5). Partnership extends to setting agendas, aims and objectives, and drawing on everyone's knowledge, skills, experience and abilities to inform strategic and procedural decision making.
Within the Australian context, governments emphasize opportunities for more active forms of citizenship, including within health care systems, and in recognizing transformational ways of engagement such as coproduction (Dunston et al., 2009). Coproduction in research, which includes people at the heart of the research interest, has distinct advantages in creating more appropriate recruiting, compassion for the experiences of participants, ensuring the process is supportive, content meaningful, and also study success (Ennis & Wykes, 2013; Simblett et al., 2021). The resulting benefits of the sharing of power and knowledge have been suggested as improving health services and outcomes through increased attunement and appropriateness of programs to cultural and logistical contexts, empowered communities and the facilitation of knowledge translation into practice (Jagosh et al., 2011; Macaulay et al., 2011).
Context of Study
In June 2021, the Australian National Mental Health Commission funded 10 projects investigating the impact of the COVID-19 pandemic on potentially vulnerable populations and communities in Australia. Informal/unpaid family carers who supported people with mental health challenges were one population group identified in the National Mental Health Pandemic Plan (National Mental Health Commission, 2020).
The National Mental Health Consumer and Carer Forum (NMHCCF), an advocacy and representative body for service users and mental health family carers in Australia, engaged two academics from the Social Work Innovation and Transformation in Health Research Group, at Monash University, to be research partners for the project through a tendering process. From commencement, the project was codesigned and coproduced with mental health family carers and consumers to include their expertise in understanding experiences and methods that would best explore evidence to the benefit and wellbeing of family carers. The academics and the NMHCCF Project Steering Group (PSG) became partners, working together over a 9-month period to codesign and coproduce the research project including understanding the literature, formulating the research question, preparing the ethics application, developing mixed methods research protocols and resources, gathering and analyzing data, and writing the final report and articles for knowledge dissemination (Petrakis & Walters, 2022; Walters, McDonald et al., 2024; Walters, Solich et al., 2024).
Through seven state focus groups and a national survey, the project investigated the significant impact on mental health family carers, their overall experiences, levels of distress, unmet needs and caring responsibilities due to and during the COVID-19 pandemic, in Australia. In August 2022, the final report was submitted to the funding body and forwarded to National Government representatives. Ongoing advocacy work through conference presentations, peer reviewed articles, and a national online launch, stand testament to the success of this project and the 10 recommendations that arose through the research findings (Petrakis & Walters, 2022). This article reflected on the coproduction process to identify principles that promote family engagement in research.
Aim
This article aimed to explore which principles of participatory research engaged and elevated family carer expertise within mental health system advocacy and change, through reflecting on the key learnings from the coproduced study (Walters, McDonald et al., 2024; Walters, Solich et al., 2024). Ways in which this coproduction approach to understanding family carer experiences might bring particular benefits in data collection, the experience of participants, and the engagement of academic partners were considered.
Research Question
What principles of participatory research methods engage and elevate family expertise in mental health system advocacy and change?
Method
The ontological perspective of this study was transformative, informed by feminist theory, and addressed issues of power to determine research approaches and questions (Mertens, 2009). This exploratory qualitative study utilized a narrative approach to illustrate people's reflections upon their participation within a coproduction process for knowledge generation (Creswell & Creswell, 2023). The choice to explore people's experiences through a group focused-conversation enabled points of shared interest and value to become prominent. This approach also paid homage to the collegiality that arose through the feminist ideology, including the process of research being as important as the research outcome (Liamputtong, 2016). The academic researchers (CW and MP), both with their own active family carer experience, were accepted by and became part of the group. Feminist theory and methodology support this approach, where academic researchers are able to share their experiences with other family carers, coresearchers, and participants (Liamputtong, 2016; Sprague, 2016). Adopting a transformative epistemology recognized the value of close collaboration between the academic researchers and the NMHCCF coresearchers in establishing processes that were sensitive, aware, empowering and achieved through the language and ways of knowing familiar to the community central to the focus of the research (Mertens, 2009).
Study Design
Members of the PSG were invited to participate in one of two focused-conversations (Fritzen-Pedicini et al., 2019; Stanfield, 2000) alongside the academic researchers to reflect upon the coproduction process in the study. Two university academics (MM, MG), independent of the study, facilitated the online focused-conversations via the Zoom platform. The focused-conversation explored project member experiences and reflections upon the coproduction research processes from initiation to dissemination including coauthoring the report and peer-reviewed publications (Table 2). The discussions were recorded on the Zoom platform and transcribed using Otter. The first author (CW) checked the transcriptions, deidentified them, and returned the transcription of the attended focused-conversation to participants for consideration and analysis.
Questions for Focused-Conversation.
Participants
A purposive sample of PSG members and cofacilitators of the original study focus groups were invited via email to participate in a focused-conversation to share their experiences about the research process. Five members of the PSG, one focus group cofacilitator, and the two academic researchers attended the first focused-conversation, and six PSG members and the two academic researchers attended the second focused-conversation.
The participants from the PSG and academic researchers brought a diversity of experiences and skills, including a compilation of lived-experience, from both service user and carer perspectives, including different caring experiences across the lifespan. Group members included people who led family carer organizations, worked in grassroots organizations, had academic and research skills, represented rural and regional geographic areas, and were from diverse cultural communities. Participants were living in the states of Queensland, New South Wales, Victoria, South Australia, Australian Capital Territory, and Western Australia. Both women (10) and men (2) participated in the conversations and there was a diversity of work and support roles represented. The coresearchers were given an opportunity to reflect on how the diversity informed the process and the project.
Research Ethics
The Monash University Human Research Ethics Committee was satisfied that the study met the requirements for the National Statement on Ethical Conduct in Human Research and granted approval (Project ID: 31516). Participation in the research was voluntary, participants were provided information in an explanatory statement, and invited to ask questions prior to and at the commencement of the focused-conversation. Verbal consent was provided at the commencement and participants asked not to reveal information discussed outside the group. If participants attended outside a paid role, they received an honorarium in recognition of their time and expertise. Detailed demographics are not supplied to maintain confidentiality.
Data Analysis
The lead author (CW) reviewed and corrected the transcripts, uploading them to Nvivo 14 for data management. An experiential thematic analysis, to note the initial semantic codes was undertaken by CW, grounding meaning within the expression of the participant's experiences (Braun & Clarke, 2022). The initial codes were discussed with MM and grouped to form early themes, answering research questions including the one for this article. The themes were further explored and refined with the other academic researchers (MP and MG). PSG members, who participated in the focused-conversation, were provided with a copy of their meeting transcription and a template to guide reflections and analysis. Members were asked to identify key quotes and why selected, alongside key messages from the transcript they would want people to know or learn. The reflections of the PSG members were compared with the themes identified by the academic researchers, to identify shared meanings and principles of value. The reflections on the valued elements of the coproduction principles are reported on in the findings utilizing the illustrative narratives of the participants within the focused-conversations.
Results
Themes across the transcripts included reflections on valuable elements of the coproduction principles and processes. Five thematic principles were identified that drew from reflections on the unique aspects of the process, experiences of the process, what participants brought to the process, challenges, benefits and outcomes of the project, and ways of working. The principles, generated from the thematic analysis, were seen as key to guiding working with mental health families in future coproduction in research. The quoted statements are by authors of this article who have agreed to the inclusion of their name.
Thematic Principles
Family Carer Leadership and Inclusion From the Beginning
The NMHCCF were able to choose the research partner through the direct approach and funding from the Australian Government to understand vulnerable groups that may be experiencing extra challenges from the COVID-19 pandemic. Decision-making opportunities were one way for power dynamics of knowledge production to be broken down, including decisions about research questions. The National Mental Health Commission approached us (NMHCCF) and I was in the carer co-chair role at the time and asked if there was a research project that the forum might be interested in doing around COVID and around different cohorts within COVID vulnerable groups … we put in an application for the funding, … received the grant funding, … my engagement has been from the very initiation of the project right through … involved in the different stages of the project and in the advisory group and steering group … right through to presenting at WA Carer conference, the findings, and involved in the launch process and in converting some of that data into communications, so that we can get a greater level of buy in and use of the report. (Hayley) … the other benefit from genuine codesign is that you find out stuff, that you didn't know at the beginning, because you actually undertake genuine processes of asking and finding out … you have to be able to backtrack, because you can start investigating what you think the problem and the solution might be. But if you get the feedback, when you start the process that's not answering or asking the right question … I think that this process did demonstrate an ability to go back and fix that up. (Jonathan)
I would find it profoundly disrespectful … not to listen closely and respectfully and be led by the people who are experiencing whatever condition or issue we might be planning to investigate and understand. I really appreciate what H was saying about things being instinctual or intuitive; I think our intellect is led by our intuition or by our sense of things rather than the other way around if we're really paying attention. … this EOI (expression of interest) process was very generous … from the Forum. Experiencing the depth of knowledge, expertise, reach, connections, but it was just very humbling. Caroline and I came from a position of being honoured to be participants. And to try and work out what it was we would bring that would be useful, rather than us leading. And I think if people can do that more, because I thought other people understood that that's what codesign is, reducing your power, so others could take up that space who already have that knowledge. But I have seen that people don't quite understand what codesign is. (Melissa)
Power Sharing Within Research Partnerships
Having an alignment of ways of working between the research partners was an important part of the selection and process of working. To give a bit of context, the forum works in a codesign model. So, we have shared power in all of our decision-making processes within the Forum. We're very used to being comfortable in working in coproduction, and codesign. But we're not very used to working in an extended partnership with other organizations and with a research team in that way. And so for us, we were very keen to engage with Monash because we understood that the research team work from that space and had the required understanding of carers and of consumers in the whole space. So, for us, it was vitally important that this whole process reflect what the Forum is about and how we operate. (Hayley) I had seen Melissa present findings from one of her research projects … I could see an integrity of wanting to tell the story of the data, and wanting to reflect with real authenticity, the experiences of the people that she had connected with. So that showed me a commitment to the storytelling that's required, that we needed to have through this process. So that gave me my inkling … I guess part of it is intuition, isn't it? My sense of her as a person, and in her work was a high level of regard for that. (Hayley) We had a timeframe. We had some things that we had no say over whatsoever. But what we could codesign, we did. So it's looking at what are the deliverables? And then how do we do them in the most informed, respectful way? That brings in the variety of perspectives rather than presuming perspectives, and thinking we know what we don't know … And if somebody's coming from a dogmatic, rigid place, or a more directive, authoritarian kind of style, there isn't that room for that. Whereas when you respect the expertise that's in the room, and hold that we're all equal in this. I think that freed up the development in a way that might not have happened if we had used a different methodology for the research. (Eileen) That it was great initiative from National Mental Health Consumer and Carer Forum as well, great work the Monash University team gave, it was real codesign and coproduction, codesign in the sense that was very creative process. And working together. In the coproduction. It's seeing everyone individually. That is my real feeling. And seeing me as an active contributor to my own experience. Altogether, all voices were heard, but not just heard, worked with to understanding of that vocal expression, and extending that in writing, asking again and again, and clarifying. And being sure that is real understanding and a real message that goes on the paper and in words …. At the end, it's great outcome for everyone. And for me, is just that this situation is brought through the science. It's not just stories, individual stories, it's the collective stories, that they are brought in the science, … it's not only about building the knowledge and awareness, but a working together … the more clinicians will hear those voices and in the collective outcome. (Nevena)
Researching With People and Not on or About Them
A conscious decision was made to create a partnership across all phases of the research. The academic partners brought technical expertise and research resources to support the direction and decisions set by the NMHCCF. Members of the PSG noted the ethos and epistemological underpinnings were of researching with. I appreciated the way that Melissa and Caroline worked, because it's so easy to get on the bureaucratic research driven bandwagon of timelines, targets, to meet reports to milestones to reach on time, etc. And, you know, the incredible patience that was shown by Caroline and Melissa, I think, has actually led to a much better outcome translational wise as well. And whereas it could quite readily have been another research group just pushing the agenda, I think it's becoming a bit tokenistic because you know, this somewhat false imperative to just keep things going in a direction. So, it got there without that loss of ownership by the Forum. Because there is a, you know, actual working with rather than just coming from the research, context of milestones, imperatives, pressures. (Sharon)
When the Forum put out the expression of interest, I think the response from Monash really shone and stood out. They said, we will work it out together about how we'll do this research. But also, something that really, I saw as a strength is that not only did they have vast experience, you know, Melissa and Caroline have vast experience as researchers. Their research was also informed by their lived-experience expertise and their active engagement with mental health carer networks that just really stood out for me. And what I loved when we started working with Monash is that they said, you know, we shouldn't assume that mental health carers are experiencing distress, we'll let the research results. You know, we'll let that unfold. And even though we knew it, it had been identified by the National Mental Health Commission, we let the results of the focus groups and surveys provide the evidence of that. And so, I remember initially, the Forum called it the Carer Distress project, but within I think the first meeting, Melissa and Caroline influenced us to change the name of the research project to Mental Health Carers’ Experience of COVID. And just you know that alone. Yeah, that alone, I think it was very important because it showed that we, you know, that we didn't want any bias within the research, we wanted the research results to speak for themselves. (Carli)
Valuing the Process of Coproduction in Research Through Time and Resource Allocation
The participants in the focused-conversations recognized the value of time being spent together to discuss and refine aspects of the research process, especially in relation to the use of language. Where researchers may be trained to ensure questions are not biased or leading, the expertise of the PSG members lay in utilizing language and questioning that was free of stigma and more importantly not blaming the service user for the family carer's distress. I guess my lasting reflection was the approach gave the time to really work through all of the issues. I mean, it was quite a lengthy process. And when each of the areas of the survey was discussed, it really went into a lot of detail. A lot of discussion, line-by-line, question-by-question. Questioning the language, the tone, the assumptions, that were in the question. So that was just that level of each individual question, let alone some of the more sort of overarching approaches; should it be a survey? Who should be involved? But getting down to actually what was being asked and how it was being asked to ensure that it was respectful. And that it was really based on what was important and relevant for people living through COVID, supporting someone with a mental health condition. (Tony)
Recognizing and Valuing Lived-Expertise and Coresearchers Within Research Processes
Coresearchers appreciated and felt it added value to the project that people's expertise was recognized through remuneration. It was seen as an acknowledgement of the time spent, similar to researchers being paid for their time working on a project, but more importantly signaling that experience and expertise are valued. Often there's a lot said about valuing lived-experience expertise, and I just wanted to highlight that many carers and family members are unpaid. And one really practical thing that was done was when people participated in the focus groups, they received a voucher to acknowledge their time and to value their expertise. And that is really important. I remember, when from a consumer perspective I started working in mental health 15 years ago, everything was expected to be voluntary. And they sort of emphasize that you should be grateful for being invited to be involved. And I don't know if that's the same experience for carers, but I think it would have made a big difference to those people that participated in the focus group that, you know, that voucher signals to them that their experiences and expertise was valuable. And it was something that was acknowledged. And I don't want to underestimate the importance of that. (Carli)
Discussion and Application to Practice
The process of coproduction experienced in this project resulted in; people feeling active contributors of their own experiences and skills, recognizing the power of the collective stories alongside the power of a national lens, and an enhanced sense of coming together as equals. Similar to Gillard et al. (2012), in undertaking a reflexive review of lived-experience inclusive research, this study found that there was additional knowledge gained through experience, and also the process of research was changed to a point proposed as “knowledge production becoming more socially accountable” (p. 1127). However, there are challenges to coproduction. Within academic realms—in determining what is and counts as “good science”—emphasis is often placed on the objective measurement of predetermined areas of interest with little accounting for nuance or individual experiences of phenomena (Gillard et al., 2012). Further challenges to coproduction include tokenism and barriers to true inclusion, such as funding resources, academic institutional procedures, a lack of evidence of effectiveness, and importantly a lack of understanding of academic researchers knowing how to involve service users in research (Ennis & Wykes, 2013; Gillard et al., 2012; Ni She & Harrison, 2021; Worsley et al., 2022).
The initiation of the project by the NMHCCF enabled them to choose research partners that aligned with their values and goals for the research and for group members to be part of the whole project from commencement to dissemination. This led to the knowledge and outcomes being more relevant and translational. Coresearchers valued principles that led to the coming together in extended partnership and remaining true to codesign despite time pressures. As in Gillard et al. (2012), there was recognition that the contributions of members, being contextually and socially situated, added to the doing of “good science” in situating knowledge claims within the exploration and articulation of different voices. The addition of diverse voices and perspectives helped frame the final research approaches and documents to “hold carers” and to not stigmatize service users.
In reflecting on the principles of the research, the authors suggest a number of aspects assisted with overcoming power differentials and creating successful partnerships within the project. These aspects included principles around:
Family carer leadership and inclusion from the beginning; Power sharing within the research partnerships; Researching with people and not on or about them; Valuing the process of coproduction in research through time and resource allocation; and Recognizing and valuing lived-expertise and coresearchers within research processes.
Similar to the findings of King and Gillard (2019), members of the PSG and the academic researchers found the coproduction process to be transformational with learnings on how the sharing of power and governance through the research relationship enabled a sensitivity and responsiveness in approaches to knowledge creation. The process was at times referred to as therapeutic, highlighting the presence and knowledge of people with similar experiences being able to hold spaces safely and recognizing the need for appropriate use of language in drafting research questions. Similarly, the coresearchers actively took on the research role, bringing their own knowledge to combine with others to develop advocacy pieces through their writings and presentations. King and Gillard (2019) referred to this as a democratizing process to create meaningful and authentic knowledge through supporting those not experienced in research by modeling, communicating, and providing technical support.
Limitations
All members of the PSG were invited to participate, and an honorarium was offered for attendance at the focused-conversations, however, funding was not available to pay people to assist with the writing stage of this manuscript. Twelve members of the 23-member PSG attended across the two meetings, representing most states, and family carer and service user perspectives. However, they may not represent all members, or all family carer coresearchers experiences within coproduction. The final report from the COVID-19 study was submitted in August 2021. Due to the busyness of reform and policy changes, and the time taken for government review and the availability of government representatives, the public launch of the report was in August 2022. Subsequently, the reflections occurred sometime after the completion of the research process and the launch of the report, and aimed to incorporate all aspects including the dissemination of findings. It may be that the time that elapsed since the project ended meant the reflection did not capture all the necessary components of the process. Creating opportunities for reflection and feedback during the process of codesign may present additional perspectives through clearer recall and identifying early impacts upon coresearchers. The two academics who facilitated the focused-conversation, were known to the academic researchers and had not openly identified as having a family carer perspective, and this may have influenced the environment created and the analysis.
Conclusion
Reflections on the coproduction process of the experiences of mental health family carers during the COVID-19 pandemic study indicated principles for overcoming power differentials and promoting partnerships between university and community partners. Participants were active coresearchers through the NMHCCF receiving the funding to initiate the project, which placed in their hands the ability to choose partners who they determined would honor and assist elevating their perspectives to instigate policy and service change. If academic partners join without preconceptions and with curiosity, through mutual respect, shared goals and vision, and recognizing the strengths, an authentic partnership is possible. The university academic partners became supporters of the NMHCCF—providing research knowledge, skills, and work time—to enable elevating lived-experience and expertise recognition, making the research more authentic and relevant. The NMHCCF partners reported increased agency and research capability, connections and outcomes for family carers. The five identified principles enabled the process, which was spoken of as therapeutic, supportive, and relational with resultant ongoing trust, relationships, and future work plans.
Relevance to Clinical Practice
This article identifies participatory principles valued by mental health family carers in generating evidence that is relevant and authentic. These principles can be operationalized by academic researchers to facilitate family engagement through:
Practices that consider governance frameworks that enable lived-experience leadership; Sharing roles and information to reduce power differentials; Practitioners and research partners providing technical knowledge and skills to work with people with lived-experience supporting a project to successful completion; and Working collaboratively so all people's knowledge, ways of working, strengths, and abilities are recognized.
Implications for social work practice include that social workers are well placed to engage in such cocreation of knowledge given the discipline's core values of respect for persons, social justice, importance of human relationships, integrity, and professional identity (Australian Association of Social Workers, 2020; National Association of Social Workers, 2021).
Footnotes
Acknowledgements
We would like to acknowledge and thank the project steering group from the National Mental Health Consumer and Carer Forum (Australia), who gave their time to coproduce the process, participate in the collection and analysis of the data, and drew upon their experiences to enable the completion of this study, including Emma Coughlan (Mental Health Australia), Katrina Armstrong (Mental Health Carers Australia), Ben Tisserand (Arafmi), Gabrielle O’Kane (National Rural Health Alliance), Nicola Ballenden (MIND Australia), Lynda Watts (MHLEEN), Vicki McKenna (The National Aboriginal and Torres Strait Islander Lived Experience Centre—Black Dog Institute), Amaya Alvarez (Tandem), and Rachel Earl and Isabella Bishop (National Mental Health Commission). We would also like to thank the family and supporters who participated in the Australian study about their experiences during the COVID-19 pandemic, and acknowledge the individual and collective expertise of those with a living or lived experience of supporting people with mental health, alcohol, and other drug challenges. We recognize their vital contribution at all levels and value the courage of those who share this unique perspective for the purpose of learning and growing together to achieve better outcomes for all. We would also like to acknowledge the Lord Mayor's Charitable Foundation, Eldon & Anne Foote Trust Donor Advised Program, which has enabled additional academic engagement with the family carer expertise of the NMHCCF, to cosynthesize this research and develop recommendations for engagement with family carers in research.
Consent to Participate
Members of the Project Steering Group were provided an explanatory statement at the commencement of the research and advised participation in the research was voluntary. At the commencement of the meetings for the focused-conversations, participants were asked if they consented to participation, that they could withdraw at any time, and if they consented to the meeting being recorded and transcribed and deidentified for analysis.
Data Available on Request due to Privacy/Ethical Restrictions
The datasets generated during and/or analyzed during the current study are not publicly available due to privacy or ethical restrictions but may be available from the corresponding author on reasonable request.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Ethics Approval Statement
The Monash University Human Research Ethics Committee was satisfied the study met the requirements for the National Statement on Ethical Conduct in Human Research and granted approval (Project Id 31516).
Funding
This research was supported by an Australian Government Research Training Programme (RTP) scholarship for first author Caroline Walters. Funding was received from Mental Health Australia, through a grant from the National Mental Health Commission, Australia, to the National Mental Health Consumer and Carer Forum. The first and final authors additionally thank the Lord Mayor's Charitable Foundation, Eldon & Anne Foote Trust Donor Advised Program, which has enabled additional academic engagement with the family carer expertise of the NMHCCF, to cosynthesize core principles in research and mental health system change.
