Abstract
Inclusive research, which emphasises the active involvement of people with disabilities in the research process, is increasingly recognised as vital for enhancing research quality. Despite its importance, there is a significant gap in the literature regarding implementing inclusive research within doctoral studies in health and wellbeing. This paper has addressed this gap by providing a practical model of how the first author conducted PhD research with two health service consumer advisors with Down syndrome. The consumer advisors participated in eleven meetings lasting up to 2 hours, with a tailored involvement plan that considered their specific needs. The paper has drawn on reflections and feedback from both the PhD student and the advisors, using sources from reflective journals, email exchanges, and meeting notes. The consumer advisors remained engaged throughout the project, offering valuable insights relating to the design, data collection, interpretation and dissemination of the findings. The study highlighted that inclusion can be adapted to fit specific circumstances, even within the constraints of higher degree research and limited resources. It has underscored the importance of consumer advisor involvement for the success of doctoral research. The paper concludes by stressing the need for universities to support PhD students in fostering inclusive research practices.
Keywords
Introduction
Inclusive research describes the process by which people with disabilities are not merely seen as research subjects or participants but are actively engaged in the research process itself (Garratt et al., 2022; O'Brien, 2023; Walmsley, 2001). Although various terms are used to describe the involvement of people with disabilities in the research process, this paper has adopted the term inclusive research, as it is considered the overarching term for this practice (Frankena et al., 2015). The notion of inclusive research has aligned closely with broader movements to democratise science by involving people with lived experience of the research topic in the research process (Greenhalgh et al., 2019). These individuals are often referred to as lived experience researchers (Gupta et al., 2023). Additionally, it has resonated strongly with the disability rights movement, which advocates for equal rights, accessibility, and social inclusion for all people (Durell, 2016; Walmsley, 2001). This approach is aligned with the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006), which has emphasised the right of people with disabilities to be involved in issues that affect them.
Inclusive research has emerged in response to the long-standing exclusion of people with disabilities, particularly those with intellectual disabilities, from the research process—even as research participants. Historically, people with intellectual disabilities have been excluded due to concerns about accessibility, vulnerability, and both conscious and unconscious discrimination (Hollomotz, 2018; Kroll, 2011). However, since the 1980s, attitudes have shifted, and there is increasing recognition that people with intellectual disabilities both want to and should participate in research that affects their lives (Conroy et al., 2021; Hollomotz, 2018; Perry, 2004). Although including people with intellectual disabilities as research participants remains challenging due to difficulties with design, consent procedures, limited resources, and a lack of necessary skills, there has been a conscious shift towards improving the participation of this community in knowledge generation (Bishop et al., 2024).
Although progress has been made in including people with intellectual disabilities as participants, much work is still needed to ensure the research process itself is fully inclusive. People with Down syndrome remain significantly underrepresented and are often excluded from meaningful involvement (Hendrix et al., 2021). Researcher reported barriers to involving the broader public in research are well documented. These have included a lack of funds to compensate or reimburse people, a lack of time to meaningfully involve people, and a lack of support or capacity to effectively engage lived experience researchers in the process (Anderst et al., 2020; Ayton et al., 2022; Ryan et al., 2024). Involving people with intellectual disabilities, such as those with Down syndrome, may present further challenges, particularly with communication and cognitive barriers, requiring additional adjustments (Frankena et al., 2019). These include difficulty articulating roles and expectations, language, difficulties with abstract thinking and memory, a tendency to give socially desirable answers, insufficient accessible information, and the diversity within this group (Frankena et al., 2015). More research is needed to identify effective ways to support their full inclusion in the research process for studies focusing on their health and wellbeing.
It is widely acknowledged within academia that integrating lived experience researchers into the research process is ideal (Arnstein, 2019; Bigby et al., 2014). Involving lived experience researchers leads to more relevant, impactful, ethical research and is a better use of resources (Beighton et al., 2019; Jackson et al., 2020; Minogue et al., 2018; Modigh et al., 2021). It also allows for greater transparency and accountability in the research process (Modigh et al., 2021; Ocloo & Matthews, 2016). Additional advantages related to inclusive research are the acknowledgment, nurturing, and illustration of the fact that people with intellectual disabilities possess the ability to contribute meaningfully to the research about them (McDonald et al., 2016; Walmsley et al., 2018). Inclusive research allows people to develop valued skills, widen their social network, and access meaningful, paid employment (Nind, 2017; Walmsley et al., 2018). Whilst inclusive research cannot be regarded as a panacea for incorporating the perspectives of people with intellectual disabilities in the research process, engaging people with intellectual disabilities in the research process not only enhances the quality of the project but serves as a means to confront ableism, fostering tangible improvements in well-being outcomes (Bigby et al., 2014).
Despite the acceptance of integrating lived experience researchers in the research process, the academic community has grappled with translating this concept into meaningful, practical applications (Bigby et al., 2014; Sergeant et al., 2022). Bigby et al. (2014) proposed three distinct approaches to including people with intellectual disabilities in the research process, each indicative of the distribution of power among co-researchers: 1) people with intellectual disabilities engaged in providing advice to researchers, 2) people with intellectual disabilities assuming leadership roles in the research process, and 3) a collaborative approach wherein people with intellectual disabilities and researchers work to share power equitably. However, implementing these approaches can vary significantly (Frankena et al., 2015) due somewhat to the nature of power dynamics, which are complex and multifaceted (Foucault, 1980). This makes it difficult to clearly understand what happens when researchers collaborate with people with intellectual disabilities, increasing the risk of tokenistic engagement (Ocloo & Matthews, 2016). Tokenistic engagement is when lived experience researchers are involved superficially or symbolically rather than genuinely valuing their input or integrating their perspectives meaningfully (Ocloo & Matthews, 2016).
Efforts have also been made to establish standardised methods for engaging lived experience researchers in the research process. Tools, such as the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) list, have been developed to facilitate collaborative knowledge generation (Staniszewska et al., 2017). Although GRIPP2 has been critiqued for its complexity and not addressing power dynamics, it is the most current and accepted tool for standardising and improving the transparency of involving lived experience researchers in the research process (Scholz & Bevan, 2021; Staniszewska et al., 2017). There are also more specific instruments for researchers through the development of guidelines for inclusive research, particularly in domains such as health (Frankena et al., 2016). However, there is no universally recommended method of involving people with intellectual disabilities in the research process. Each project is unique, and researchers with lived experience are not a homogenous group; they have varying experiences, needs and motivations when considering their involvement in the research process (McCarron et al., 2019; McDonald et al., 2016; Safari et al., 2023). Consequently, researchers must openly share and critically reflect on the methods they employ to engage people with intellectual disabilities in their research. This is essential for promoting transparency, learning, ethical conduct, inclusivity, and community engagement in the research process.
Doctoral projects present further complications when incorporating an inclusive approach, although this is an under-researched area (Cox et al., 2023; Durell, 2016). It has been asserted that the doctoral framework does not fit easily with more nuanced definitions of inclusive research (Bjornsdottir & Svensdottir, 2008). For example, Walmsley and Johnson (2003) argued that the disability community directly affected by the research should have ownership of the research problem and exert some control over the research process. Proponents of an inclusive approach claim that disability communities asserting ownership and control over the research process ensures that the research reflects their priorities, prevents misrepresentation, promotes equity, and produces more relevant and impactful outcomes to their needs (Walmsley & Johnson, 2003). However, implementing this suggestion poses challenges within a doctoral framework due to the complex concepts of intellectual ownership and limitations on control, as doctoral students are ultimately required to submit their own original work (Bjornsdottir & Svensdottir, 2008).
Doctoral students, who are frequently confronted with constraints in terms of time and funding and are developing the necessary skills for conducting research, could encounter similar or heightened challenges when considering an inclusive approach for their doctoral work (Cox et al., 2023; Tomlinson et al., 2019; Zaagsma et al., 2022). It has also been suggested that Australian universities are not adequately equipped to support students wishing to adopt an inclusive approach, as they frequently lack the resources and processes necessary to facilitate such work (Ayton et al., 2022; Cox et al., 2023). In addition, there is no assurance that a doctoral student’s advisory team will possess the requisite resources, skills, and capacity to effectively support the student throughout the inclusive research process, given some experienced academics may be unfamiliar with this approach (Anderst et al., 2020; Kyriazis et al., 2023). This assertion may hold particular relevance within the Australian context (where this PhD was undertaken) since the involvement of the public in the research process is perceived to be less advanced compared to countries such as the United Kingdom (Garratt et al., 2022; Greenhalgh et al., 2019; Zirnsak et al., 2024). There is a growing expectation that academic literature must delineate strategies to surmount these barriers. This paper further supports the need to enhance research environments that foster engagement in this critical aspect of scientific inquiry for both the research community and doctoral students.
An alternative view is that inclusive research may be easier for doctoral students, as they often have less power and authority than senior academics. This relative lack of status can lead to more balanced power dynamics, fostering greater inclusivity and collaboration when partnering with lived experience researchers (Cox et al., 2023; Durell, 2016). Therefore, doctoral students must also share how they have incorporated inclusive approaches into their PhD journeys and their experiences of this process to facilitate the potential learning for those outside the doctoral realm in forging effective partnerships.
There is a notable gap in the literature providing insight into how PhD students navigate inclusive research practices with limited resources. This lack of research leaves an incomplete understanding of the challenges and strategies employed by early-career researchers in fostering inclusive participation while managing constraints such as time, funding, and institutional support. This paper has provided understanding by detailing how a non-disabled PhD student successfully pursued a PhD using an inclusive approach while navigating the limitations inherent in a doctoral framework, highlighting the significance of such practices in shaping more equitable and collaborative research environments.
Background
Project Overview
The doctoral research project provided the foundation for the examples, reflections, and recommendations discussed in this paper. The reflections were drawn from the PhD student’s reflective journal (Ortlipp, 2015) and from the consumer advisors, whose insights were shared verbally during meetings and documented in Easy Read minutes or via email correspondence.
This qualitative project aimed to explore patient-led recordings of hospital clinical encounters for people with Down syndrome and their support people as nominated by the person with Down syndrome (family, friends, and paid support workers). Patient-led recording is when a patient (or their family, friend or carer) uses their smart device to undertake an audio recording, video recording, or photograph during their clinical encounter. The recording is stored on the patient’s device rather than the hospital system (Prictor et al., 2021). Semi-structured interviews with 12 people with Down syndrome and 12 support people were undertaken. The study aimed to understand experiences and attitudes to recording a clinical encounter, the perceived ease of use and usefulness of recordings, and the factors influencing the acceptance of recording.
The project adopted a critical realist approach, which served as both a theoretical framework and an ontological paradigm (Craig & Bigby, 2015). Critical realism allowed for a comprehensive understanding of the complex dynamics in social contexts (Craig & Bigby, 2015). For example, it facilitated the exploration of the attitudes and experiences of people with Down syndrome while examining how these are shaped by internal factors, social networks, and hospital structures, uncovering both visible and underlying mechanisms. Ethical approval was obtained from the University of Queensland Human Research Ethics Committee (HREC, 2022/HE002296).
Inception
The inception of this research topic stemmed from the PhD student’s role as a hospital social worker and researcher with a background in the disability sector. Through her work exploring patient-led recording within the ‘general’ patient population (Ryan et al., 2023), the PhD student questioned the potential positive impacts of recordings for people with intellectual disabilities. Despite indicators of the potential benefits of recording for people with intellectual disabilities, including those with Down syndrome (Ryan et al., 2022a), this had not previously been studied.
Considering an inclusive approach, the PhD student started learning about people with Down syndrome’s research interests and priorities (Walmsley et al., 2018). The PhD student discovered Down Syndrome Australia’s (DSA) proactive efforts to enhance hospital clinical encounters for people with Down syndrome in Australia. DSA offers support, disseminates information, and provides resources to people with Down syndrome and their social networks. While it may be contended that they only encompass some of the community, DSA serves as a valuable avenue for understanding the primary priorities and requirements of the community. On this basis, it became evident that there was an imperative for the community to address inequitable issues surrounding the provision of health services. This was observed via their establishment of a Health Ambassador’s Program, which educates professionals about how best to include people with Down syndrome (Down Syndrome Australia, 2022) and the development of a mobile health application to support people with Down syndrome to monitor their health and communicate this with health professionals and family (Down Syndrome Australia, 2024). Acknowledging the issue of poor quality hospital clinical encounters for people with Down syndrome (van den Driessen Mareeuw et al., 2019) and the ongoing efforts to ameliorate this situation by the Down syndrome community (Down Syndrome Australia, 2022, 2024; Global Down Syndrome Foundation, 2020), it seemed fitting for the PhD student to undertake this project in conjunction with existing community work in this domain. An inclusive approach was also preferred (Arnstein, 2019; Bigby et al., 2014).
Methods
Stakeholder Consultation
Despite the perceived alignment between the researcher’s intentions and community action, additional consultation with key stakeholders was deemed necessary to ensure the project garnered genuine acceptance and endorsement from the community. This study defined key stakeholders as people with Down syndrome, their social network, the related community, and the healthcare community. Therefore, the PhD student engaged in early consultations about the topic of this project and potential research design ideas with professionals at Down Syndrome Queensland (DSQ) (a state association within DSA), members of the DSA’s Health Ambassador program (consisting of people with Down syndrome), as well as other key local stakeholders, such as the Director of the University’s Down Syndrome Research Program, and a local health service’s Health Access and Equity Department. The PhD advisory team were also consulted as experts in researching topics relating to health and disability.
Consultations took the form of informal discussions and correspondence. The outcome of these early discussions was that a study on this topic would be of interest and value to key stakeholders, as it aimed to improve clinical encounters in hospitals for people with Down syndrome. Further endorsement came from DSQ and DSA, who committed to supporting the PhD student in relevant aspects of the project. With this community endorsement, the student felt confident about progressing to more in-depth discussions about the project with people with Down syndrome. Additionally, the student was able to leverage the resources of these organisations—including their network of people with Down syndrome, access to social media, and professionals with expertise in this area—to support an inclusive research approach.
A Consumer Advisory Approach
The decision regarding how people with Down syndrome should be involved in this project presented a significant challenge. For a PhD student with limited funds (the university did not have dedicated funds for this purpose) and understanding how to proceed, the next step for the PhD student was to explore how other doctoral students had involved people with intellectual disabilities in their work. There is limited research describing inclusive research at the doctoral level. Some doctoral students had access to greater resources (Tomlinson et al., 2019; Zaagsma et al., 2022). For example, in one doctoral research study into the experiences with an online support service of people with intellectual disabilities living independently, the research partner with intellectual disabilities was offered a part-time employment contract (Zaagsma et al., 2022). Alternatively, others had made inclusive research the focus of their PhD topic, meaning they had access to associated resources and support (Cox et al., 2023; Dawson et al., 2020).
This situation raised questions about the implications for the PhD student’s project, which was caught in a trichotomy. First, there was the option of engaging in less frequent or meaningful involvement, potentially perpetuating oppressive practices or tokenism. Second, there was the possibility of excluding people with Down syndrome in the design and execution of the research project. Third, there was the choice to not proceed with this topic at all. The decision to adopt an advisory approach was deemed a satisfactory compromise, influenced by several factors. The overarching research priorities dictated that people with Down syndrome could not assume or share control of the project, as the doctoral process mandates the student to lead and conduct independent work. Funding limitations prevented remuneration for a more inclusive approach. Lastly, it was considered preferable to proceed with this project, based on community consultations indicating its value to the community and some level of involvement rather than excluding people entirely.
Two people with Down syndrome were recruited to the research team and were referred to as ‘consumer advisors’. It was deemed the most suitable descriptor for their role, given their role as consumers of health services and the advisory role they played (Bigby et al., 2014). The term ‘health service consumer’ reflects the Australian practice of involving lived experience researchers who use health services in the health research process (National Health and Medical Research Council, 2016).
The International Association of Public Participation (IAP2) spectrum has outlined various levels of engagement in public participation processes (The International Association for Public Participation (IAP2), 2014). The “Involve” domain is where the public actively provides feedback, contributes ideas, and collaborates throughout the process (individually or as part of a group) (The International Association for Public Participation (IAP2), 2014). In this project, the decision to involve consumer advisors at key stages was guided by this principle, ensuring they contributed meaningfully to discussions and actively shaped decisions during critical phases.
Finally, the decision to involve two consumer advisors was based on the evidence that suggests that having at least two consumers on the research team leads to better representation, helps prevent intimidation and isolation (Anderst et al., 2020), and provides two people with the opportunity to benefit from their involvement in the project (Nind & Vinha, 2012; Walmsley et al., 2018).
Financial remuneration of approximately $2000 was secured to compensate the consumer advisors for their time and contributions. This funding came from two microgrants from Health Translation Queensland and additional university funds, which covered the advisors’ compensation and the cost of conference registration. Financially compensating lived experience researchers is considered best practice and supports meaningful consumer engagement by addressing power imbalances and ensuring equal opportunities for involvement (INVOLVE, 2015; Western Australian Health Translation Network, 2021). However, it is important to note that the university where the PhD student conducted her research does not allocate specific funds to support students in partnering with members of the public. This created challenges throughout the project, affecting its design and limiting opportunities for inclusive participation. Although one conference was willing to waive its fees to allow the consumer advisors to co-present, financial barriers still made it difficult to disseminate the findings in a truly inclusive manner.
The Consumer Involvement Plan
Consumer Involvement Plan: Meeting Content.
Though the plan was developed by the PhD student (in consultation with community stakeholders and her PhD advisory team), it is important to state that it was a ‘working document’ that was amended based on the needs and preferences of the consumer advisors. For example, one of the advisors expressed a keen interest in presenting at conferences and her enjoyment of this type of work. Consequently, this preference was considered when defining her role within the project.
Recruitment
To recruit advisors, DSQ circulated promotional material via social media and emails to their members, inviting expressions of interest. Prospective advisors were required to be over 18 years old, have Down syndrome, and possess some hospital experience without necessarily having prior research involvement. The advertisement provided essential project details, outlined the role and time commitment, and described that consumer advisors would receive a gift voucher or an honorarium of $40 per hour in line with local reimbursement recommendations (Health Consumers Queensland, 2018). Additionally, it specified that advisors could bring a support person to meetings for communication or emotional support.
The aim of advertising the positions was to promote equity of opportunity. However, it is acknowledged that people with limited technology literacy, English literacy, or insufficient support may have been inadvertently excluded from this process. All prospective advisors expressed interest with support from a family member. Interested parties were invited to an informal telephone or video conference interview to discuss the project and their potential roles. Following these interviews, two candidates were selected and offered positions as consumer advisors within the research team, both of whom accepted the opportunity.
Neither of the selected advisors had previous experience working in research teams. However, they brought various transferable skills from their involvement in committees, projects, or as research participants, along with a shared passion for improving healthcare for people with Down syndrome. They saw the project as personally relevant, which further motivated their participation. Understanding these motivations is crucial for defining their role in the project and improving their engagement and effectiveness (McCarron et al., 2019).
Strategies for Promoting Engagement and Wellbeing
Following each meeting, the consumer advisors received meeting minutes in an Easy Read format, optional follow-up tasks related to the project, and the opportunity to provide feedback on the meeting. The consumer advisors were invited to give feedback on the following three questions: 1) What did you like about today’s meeting? 2) What didn’t you like about today’s meeting? and 3) What would you change about today’s meeting? Additionally, midway through the project, a ‘mid-project check-in', was conducted by the PhD student. The meeting was used to reflect on what had been achieved, bolster the motivation and engagement of the consumer advisors, address any concerns, and express gratitude for their contributions.
Findings
This section details the outcomes of involving consumer advisors in the project. It describes the format of the meetings, how the advisors were engaged in various aspects of the project, including data analysis, and the strategies used to promote their engagement and well being. Additionally, it explains the role of support persons who assisted the advisors and how they contributed to the project.
The advisors were onboarded after securing funding, which occurred at the end of the first year of the PhD student’s candidature, coinciding with the student’s confirmation. As previously mentioned, the project was initially conceptualised and designed in collaboration with key community stakeholders. Once the consumer advisors were engaged, they had the opportunity to contribute to the research design before the ethics submission. However, a limitation was the lack of funding at the outset of the PhD, which restricted consumers from having a more significant role in shaping the initial conceptualisation and design of the project.
Format of Meetings
Both consumer advisors engaged in approximately eleven meetings with the PhD student, lasting up to 2 hours, with a break as needed. One of the consumer advisors requested shorter sessions due to difficulties with concentration, which was accommodated. While the timing of the meetings was manageable for the advisors to engage with aspects of the project, the interval between meetings meant that they needed some prompting and support to recall what had occurred in the previous sessions, especially concerning more complex concepts like data analysis. To address this, the PhD student created a system of reviewing and re-iterating what had been discussed in the previous meeting before continuing with any new content.
Individual meetings were conducted via Zoom at the advisors’ request, as logistical constraints made in-person gatherings impractical. Efforts were made to schedule meetings that both consumer advisors could attend together to foster social connections. However, finding a time when both advisors were available simultaneously, alongside the people who supported them, proved challenging due to scheduling issues. An advantage of this approach was that the PhD student could customise each meeting to cater to the specific communication needs of each advisor. While the materials used were generally similar, the PhD student made adjustments as necessary. This flexibility also allowed the PhD student to adapt and refine aspects of the meeting format based on feedback received or observations from one advisor, thereby enhancing the experience for the other advisor when similar issues were anticipated. On the advisors’ request, an agenda was sent out in an Easy Read format two weeks before each meeting, along with selected research materials. This allowed the consumer advisors to prepare for the meeting at their discretion. The PhD student took notes during the meetings, and minutes were also sent after each meeting in an Easy Read format, summarising what had been discussed and any actions.
Involvement and Impact
During the advisor meetings, the consumer advisors received education on various research processes and were provided with updates on the project’s progress. Advisors were also given the opportunity to provide feedback on all aspects of the research lifecycle. Specifically, they offered insights into research design elements such as using interviews, developing participant information and consent forms, story vignettes (Fatemeh et al., 2020), interview guides, recruitment strategies, and data analysis and interpretation. Examples of how the consumer advisors influenced the project included: • Recommending that promotional materials target support people in addition to people with Down syndrome to enhance recruitment efforts. • Piloting and restructuring the interview guide to improve its flow and coherence. • Proposing changes to the images used in the story vignettes to enhance comprehension and engagement among participants. • Actively participated in recruitment by disseminating advertisements through their networks and discussing the project in relevant community forums and within their network. • Interpreting various aspects of the data, translating participant accounts, and linking quotes to themes. • Co-presenting at conferences and contributing to manuscript preparation and an Easy Read version of findings.
When it came to analysing the data using thematic analysis (Wiltshire & Ronkainen, 2021), a modified version of the researcher-led method described by Locock et al. (2019) was used to educate the consumer advisors on the research process, introduce them to the data, and support them in analysis. This was accomplished through three meetings, each lasting 1 to 2 hours. The PhD student consulted with the advisors and presented them with options for providing input on the analysis process. Together, they agreed on the following approach: Initially, the PhD student shared selected participant quotes with the advisors, allowing them to offer their interpretations of the raw data. Subsequently, the advisors were encouraged to review themes developed by the PhD student. The PhD student facilitated the process by presenting the advisors with two quotes and asking if either aligned with a specific theme.
Data analysis posed several challenges. The PhD student had to strike a balance in selecting quotes that contained enough data to be meaningful for analysis yet were not overly dense to the point of becoming difficult for the consumer advisors to engage with. The consumer advisors found it challenging to distinguish between providing insights on what participants were expressing and offering their own opinions about the participant quotes. However, this difficulty was ameliorated through prompting. Throughout this process, eliciting the advisors’ perspectives without inadvertently guiding them proved challenging. Although the consumer advisors actively participated in the analysis, their interpretations were aligned with those of the PhD student and did not significantly change the direction of the analysis. However, it did serve to validate existing understandings. It remained uncertain whether additional time would have facilitated a deeper involvement or if the approach posed a hindrance.
The consumer advisors were given the option to contribute to disseminating research findings by co-presenting at a conference and co-authoring academic papers. For the co-authoring process, the PhD student used excerpts from reflections provided by the consumer advisors during the project. The advisors were then invited to have the PhD student review the manuscript with them or choose someone they trusted to assist with reading it. They both decided to be supported by someone in their social network, enabling them to review the manuscripts in multiple stages. The advisors were asked to consider the following questions as they reviewed the manuscript: 1) Has anything important been missed? 2) Does anything need to be deleted? And 3) Does anything need to be changed?
A final example of impact pertains to the skills and capacity building of the PhD student and the consumer advisors. The PhD student needed to support the consumer advisors in developing their understanding of the research process, ensuring that information was communicated effectively and accessibly. The consumer advisors enhanced the PhD student’s comprehension of the research topic, improved her communication with people with additional needs, and instilled confidence in delivering conference presentations, leveraging the proficiency of one consumer advisor who excelled in this area. The consumer advisors demonstrated increased confidence and capacity in research skills. e.g., one advisor proposed an additional stage for the project, showcasing their initiative and understanding of the research process. The other advisor, who had not previously presented at a conference, volunteered for this role, indicating a newfound confidence and readiness to take on challenges in research dissemination.
Engagement and Wellbeing Outcomes
In response to the three questions—1) What did you like about today’s meeting? 2) What didn’t you like about today’s meeting? and 3) What would you change about today’s meeting?—no significant concerns were raised. The advisors highlighted their enjoyment of the project and appreciated the inclusive approach taken by the PhD student. During the ‘mid-project check-in', both consumer advisors expressed satisfaction with their experience and confirmed their desire to continue their involvement in the project. When asked if they were interested in greater involvement in the project (The International Association for Public Participation (IAP2), 2014), both declined and cited satisfaction with the current level of involvement or barriers to greater involvement, such as their busy schedules.
Another crucial aspect of promoting engagement and motivation in the project was the focus on relationship building between the PhD student and the consumer advisors. Emphasising the relationship is deemed vital for establishing a successful partnership (Zaagsma et al., 2022). Initial meetings were centred around getting to know each other, and time was dedicated to exchanging personal updates at the start of each meeting. Additionally, the PhD student sent cakes to the advisors during the ‘mid-project check-in' as tokens of appreciation for their contributions. These gestures helped foster the formation of high-quality and effective partnerships.
The Role of the Support People
A support person accompanied the advisors during meetings—one a parent and the other a paid support worker. Both were experienced in providing communication support to the respective consumer advisors. These support people were not compensated for their time (except for the support worker, who was remunerated for her service). Their role primarily focused on facilitating communication between the PhD student and the consumer advisors. Despite their communication support role, the support people inadvertently contributed to the project’s direction by making suggestions during meetings and influencing how the consumer advisors responded to research team queries. For example, one of the support people, along with the consumer advisor, suggested modifying the promotional material to target support networks, not just people with Down syndrome, to improve recruitment efforts. Given the project’s emphasis on patient-led recording for people with Down syndrome and their support people, this additional input proved invaluable.
Exclusion
Although the consumer advisors played a crucial role throughout the project, there were certain aspects that they were not involved in. These included the more complex theoretical and ontological considerations that underpinned the research. In disability studies, critical realism holds particular relevance as it facilitates the integration of individual meaning-making processes, such as the experiences of participants with Down syndrome, with considerations of external realities, such as the chromosomal condition (Craig & Bigby, 2015; Ton et al., 2021). Despite the usefulness of critical realism in disability studies, it is a complex and technical concept that people may not easily understand without a background in research methodology (Wiltshire & Ronkainen, 2021). Recognising this complexity, the PhD student found it challenging to support the consumer advisors with engaging with these aspects of the project in a manner that would be both meaningful and practical for them. Therefore, these specific theoretical and ontological considerations were not directly incorporated into the consumer advisors’ involvement in the project.
Discussion
This paper has outlined how a PhD student with limited access to resources can adopt an inclusive approach in their doctoral research. Overall, the consumer advisors played a valuable yet limited role in shaping aspects of the study, from design to dissemination, through their active participation in meetings and various research activities. The purpose of sharing this journey has been to provide an honest account of how partnerships were established with people with Down syndrome, showcasing the challenges encountered and the positive impacts that can arise from even limited involvement.
This paper aimed to convey that striving for some level of involvement is acceptable rather than feeling pressured to meet what can be seen as lofty academic standards (Walmsley et al., 2018). For instance, reporting guidelines for inclusive approaches often mandate that consumer advisors reflect extensively on their involvement in a project (Frankena et al., 2019; Staniszewska et al., 2017), which can then be reported upon. However, meaningful reflective practice can require significant time to develop, especially for people with intellectual disabilities. With limited funds, it becomes challenging to incorporate this aspect alongside all other research higher degree project requirements. This is especially pertinent in the absence of allocated funds and resources from the university to support PhD students in this endeavour (Cox et al., 2023; Tomlinson et al., 2019).
Suitable infrastructure is a key factor in supporting researchers and members of the public in partnering in research (Miller et al., 2017). Infrastructure encompasses various resources, including dedicated funding, support networks, a registry of consumers or members of the public, and policies developed to support engagement practices. These resources are essential for facilitating meaningful involvement activities (Miller et al., 2017). Without adequate infrastructure, it becomes challenging to undertake and sustain involvement initiatives effectively (Anderst et al., 2020). This was the case for this PhD student, who was compelled to adopt a less involved or inclusive approach due to the lack of adequate infrastructure, particularly in terms of funding accessibility.
It is crucial to recognise that having access to funds and additional resources does not automatically equate to a “higher level” of involvement (The International Association for Public Participation (IAP2), 2014). Researchers must collaborate with key stakeholders to determine the most suitable approach (Concannon et al., 2019). An advisory approach may be the best fit for a particular project (Bigby et al., 2014). With this PhD, for example, it was unclear whether more funded time during data analysis would have led to higher level engagement and interpretation of findings. However, opportunities for greater community control and involvement arise from the capacity to conduct thorough consultations and consider all levels of involvement. Therefore, PhD students need access to adequate infrastructure to undertake this work effectively (Cox et al., 2023; Tomlinson et al., 2019). Universities should explore ways to better support students in involving consumers and community members in their doctoral research.
Conclusion
Conducting inclusive research presents several challenges, including limited resources, lack of infrastructure, and insufficient know-how on effectively involving lived experience researchers. One major hurdle is compensating people for their time and contributions. This paper has shown that engaging in this work meaningfully is possible even with limited resources. While this approach may not fully embed the voices of lived experience researchers, it ensures that their perspectives still shape the research, which is preferable to excluding them entirely. It is hoped that by sharing this account, PhD students who feel daunted by the prospect of involving the public, including those with additional needs in their research will find reassurance. Despite the challenges, it is possible to conduct inclusive research incorporating diverse voices, even with limited resources, infrastructure, and expertise. Developing this skill set early on is crucial for researchers who wish to continue producing impactful, inclusive work.
Supplemental Material
Supplemental Material - Navigating Inclusive Research in PhD Studies: A Model for Limited Resource Environments
Supplemental Material for Navigating Inclusive Research in PhD Studies: A Model for Limited Resource Environments by Laura Ryan, Kathy Ellem, Robyne Le Brocque, Claire Mitchell, and Luka Langdon in International Journal of Qualitative Methods
Footnotes
Acknowledgements
We acknowledge and pay our respects to the people of the Yugambeh language region of the Gold Coast and their descendants, both past and present. We also recognise the many Aboriginal people from other regions, as well as Torres Strait and South Sea Islander people, who now live in the local area where this project took place. ChatGPT-4 and Grammarly were used to refine grammar, style, and coherence, though all ideas and content are entirely those of the authors. We thank Julie Mitchell and Monique Jennings for their support of our consumer advisors, who are named authors of this paper. Also, we wish to acknowledge Isabel Bowden and Yuka Yamaoka at Down Syndrome Queensland, who helped facilitate these partnerships. Our gratitude extends to the participants involved in this study. Finally, a special thanks goes to Emeritus Professor Jill Wilson, whose lasting influence and support were invaluable to this project.
Author Contributions
L.R., K.E., and R.Le.B. were involved in conceptualising the project. L.R. designed the project with guidance from K.E., R.Le.B., C.M., and L.L. L.R. collected the data. L.R., K.E., and R.Le.B. analysed the data. All the named authors contributed to the interpretation of the data. L.R. drafted the manuscript with input from K.E. and R.Le.B. All authors reviewed the manuscript and approved the final version.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
This research was made possible thanks to the Australian Government Research Training Program Scholarship with additional funding provided by two microgrants from Health Translation Queensland and University of Queensland.
Ethical Statement
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
