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Plain English summary Since the 1970’s, there has been a shift from research on disabled people to research with disabled people. This is often referred to as co-produced research. Co-production has a wide definition but includes disabled people working with academics to produce research and outcomes which neither group could achieve by working in...
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Experiences from practices-development research, as presented in Part II of this book, identify what we call wicked tensions and problems (Bentley J, Toth. Exploring wicked problems: what they are and why they are important. ArchWay Publishing, 2020). The experienced team from Sweden, Denmark, and Norway have collaborated for many years with early...
Citations
... For example, Toft et al. (2022) described how they assembled a group of young people who identified as autistic and LGBTQIA+ to better understand what aspects of their lived experiences they were interested in researching, emphasizing how they worked together to construct a shared research agenda. A second category of publications has focused on assessing and/or changing public policy (e.g., Montgomery et al., 2022) and perceptions, such as creating an online survey designed by disabled coauthors to challenge societal beliefs about learning disabilities (e.g., Chapko et al., 2020). A third category has focused on the ways author teams have worked to amplify disabled service user perspectives (e.g., Cameron, 2020) with the goal of improving their experiences when accessing services like healthcare (e.g., Caudill et al., 2022) and social work (e.g., Sarre et al., 2023). ...
While stakeholders provide invaluable perspectives about music therapy, particularly through the lens of their expertise as participants in music therapy encounters, their perspectives are rarely amplified in the context of full participation in research teams. In support of stakeholder participation in music therapy research, this article introduces and explores ethical considerations related to co-authorship. These ethical considerations are approached in three ways: (1) describing how co-authorship has been undertaken with music therapy stakeholders, specifically disabled children and adults, in a range of contexts, (2) Identifying ethical considerations related to our team’s own research project (Devlin, K., Johnston, M., & Johnston, C. [2024]. Making mistakes together: therapy participant, parent, and therapist perspectives on music therapy in two different settings. Music Therapy Perspectives) with two coauthors who are also stakeholders, and (3) providing guidelines for music therapists interested in coauthoring research with stakeholders. In doing so, the importance of co-authorship as an accessible, equitable research practice is emphasized.
Plain language abstract This article is about planning, doing, and writing research with people who are usually studied in music therapy research. We call this co-research. We talk about:
How to keep people safe How to make decisions together How to work and write as a team If we should use our real names
... For example, based on their systematic review on the involvement and experiences of co-researchers, Hewitt et al. (2023) emphasize the complexity of inclusive research. This complexity involves, amongst other issues, challenges in organizing appropriate support and training for co-researchers (Bigby et al. 2014;Montgomery et al. 2022) and the experience that funding for inclusive research is not always dependable. In addition, O'Brien et al. (2014) indicate that lack of time often remains a problem for co-researchers. ...
People with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author of this paper. He has worked as a researcher for almost six years. He is involved in various projects, all highly diverse in terms of subject, design, scope and collaboration with fellow researchers. In this paper, he looks back on his experiences in recent years. Together with colleagues, he reflects on his contribution to the various projects, his own development as a researcher and the impact of the work on his personal life. He finds that the essence of the motto ‘Nothing about us, without us’ has become increasingly intertwined with his life and identity through his work.
... Ongoing engagement with participants, their families and communities is critical toward understanding and accommodating their needs, building trust and rapport, and creating a more equitable participant experience. Integrating input from patients ("peers") and other stakeholders into study protocols can positively change these historically harmful power dynamics; patient-stakeholders become research partners, acknowledged as subject matter experts of their own needs, and work together with researchers to develop effective solutions addressing logistical barriers [26,27]. This is key in building an atmosphere, in which participants feel valued, heard, and able to honestly and timely voice emergent needs. ...
Introduction
Participant recruitment and retention (R&R) are well-documented challenges in longitudinal studies, especially those involving populations historically underrepresented in research and vulnerable groups (e.g., pregnant people or young children and their families), as is the focus of the HEALthy Brain and Child Development (HBCD) birth cohort study. Subpar access to transportation, overnight lodging, childcare, or meals can compromise R&R; yet, guidance on how to overcome these “logistical barriers” is sparse. This study’s goal was to learn about the HBCD sites’ plans and develop best practice recommendations for the HBCD consortium for addressing these logistical barriers.
Methods
The HBCD’s workgroups developed a survey asking the HBCD sites about their plans for supporting research-related transportation, lodging, childcare, and meals, and about the presence of institutional policies to guide their approach. Descriptive statistics described the quantitative survey data. Qualitative survey responses were brief, not warranting formal qualitative analysis; their content was summarized.
Results
Twenty-eight respondents, representing unique recruitment locations across the U.S., completed the survey. The results indicated substantial heterogeneity across the respondents in their approach toward supporting research-related transportation, lodging, childcare, and meals. Three respondents were aware of institutional policies guiding research-related transportation (10.7%) or childcare (10.7%).
Conclusions
This study highlighted heterogeneity in approaches and scarcity of institutional policies regarding research-related transportation, lodging, childcare, and meals, underscoring the need for guidance in this area to ensure equitable support of participant R&R across different settings and populations, so that participants are representative of the larger community, and increase research result validity and generalizability.
Background
Coproduction is a fast‐developing approach to patient involvement. It entails health and social care services users working as equals in partnership with providers and other public institutions to produce novel research and information, usually aimed at the improvement of service planning and delivery.
Methods
This paper presents two real‐life examples of attempted coproduction with a group of men with learning disabilities in England. The first case study concerns the piloting and assessment of a ‘user‐friendly’ version of a local authority's ‘vision statement’. The second explores an attempt to secure funding to develop and evaluate a community intervention with and for people with learning disabilities.
Findings
Together, these portraits capture two important and intertwined problems that afflict the field of coproduction: namely, the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way.
Conclusions
The paper concludes with some suggestions for how policy and practice might seek to address these issues in the future.
Purpose
In 2014, the Health Service Executive (HSE) in Ireland published its Safeguarding National Policy and Procedures (HSE, 2014). Under this policy, all agencies providing services through the social care directorate must ensure a robust culture of safeguarding is in place. Concurrent to this has been a move in social policy, practice and research to include the voice of the service user, both in terms of planning and reviewing services. (e.g. HIQA, 2012; Flanagan, 2020) This article examines whether service users with intellectual disabilities want to be involved in safeguarding plans and, if so, how that can be supported. Using focus groups service users demonstrated their knowledge of safeguarding as a concept, how they felt about the issues raised, and, crucially what they felt they would like to see happen next in addressing a safeguarding incident or concern. The focus groups took place in a large organisation providing residential services, day services, independent living supports and clinical supports. Engaging service users in planning and responding to safeguarding concerns is a fundamental principle of human rights legislation, both nationally and internationally. This study aims to highlight that it is both possible and desirable to engage fully with service users using a range of simple communication tools. For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time, human resources and will need champions to get on board with the necessary culture shift.
Design/methodology/approach
Qualitative research examined peoples’ “lived experiences” and knowledge of safeguarding. Focus groups were used with thematic analysis highlighting common themes throughout, as guided by Braun and Clarke (2006). There were two objectives: Objective 1: measuring participant’s understanding of the safeguarding process. Objective 2: compare the potential differences between safeguarding plans devised by the participants in the focus groups, versus plans devised by trained designated officers responsible for safeguarding within the service.
Findings
Four principal themes emerged – 1. participants understanding of safeguarding; 2. restorative justice; 3. consent; and 4. high levels of emotional intelligence and compassion. Participants demonstrated that they could and did want to be involved in safeguarding planning and showed little variation in the plans compared to those completed by trained staff.
Research limitations/implications
The study was completed with a small sample size in a single service in one area. It may not represent the lived experiences and knowledge of safeguarding in other services and indeed other countries. The video may have led to some priming; for instance, the Gardai in the footage being called may have resulted in the participants stating that contacting Gardai should be part of the plan. After the video was shown, there was a heightened awareness of safeguarding. This may indicate that participants are aware of safeguarding but unsure of the terminology or how to discuss it out of context.
Practical implications
For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time and human resources and will need champions in the safeguarding arena to get on board with the shift in culture required.
Social implications
While there did not appear to be many barriers to listening to participants, to progress this as a standard practice a very real shift in culture will be needed. It is important for practitioners to ask: Is the vulnerable person aware that this concern has been raised? What is known of the vulnerable person’s wishes in relation to the concern? To truly engage with service users in safeguarding plans these questions need to be more than a “tick box” exercise. This process needs to be fully embedded into a culture that promotes a person-centred, rights-based, inclusive approach as a standard rather than a one-off project. Some structural changes will be needed regarding the time given to designated officers, and what resources they can access (such as speech and language therapy). However, the real difference will be made by services operating authentic leadership that champions engagement on this scale, to fully answer the question posed by the researchers at the beginning of this report, “Whose safeguarding is it anyway?”
Originality/value
There appears to be little evidence of service user engagement in terms of planning and processing safeguarding responses, either in research or anecdotally.
