International Journal of Multiple Research Approaches

2014

DOI: 10.5172/mra.2014.8.1.15

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Uncovering marginalised knowledges: Undertaking research with hard-to-reach young people

Jennifer Rose Couch

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Cited by 15 publications

(16 citation statements)

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“…Case studies: Three in total including a US case study article on how to diversify participants in clinical research; a UK study presenting participatory action research between patients and emergency department staff to improve palliative care experiences . The third article presented three case studies from Australia highlighting learnings in research with highly marginalized young people Reflective articles: Three articles including a reflective article on developing and sustaining an emancipatory research project between Irish, Ugandan, Tanzanian and South African partners; a UK reflective article on co‐producing research with an intermediary community partner; a reflective article identifying methods to engage hard to reach patients in patient‐centred outcomes …”

Section: Resultsmentioning

confidence: 99%

“…The majority of papers and reference panels stressed that early engagement with community partners was a key enabler to shape the research process from the outset . The reference panel with Pavee Point reinforced this point.…”

Section: Resultsmentioning

confidence: 99%

“…Providing ongoing education to researchers that includes the active involvement of community partners was stressed. This was seen as important to enable a shared understanding of the broader contexts for which the research is being undertaken . 44 The use of innovative and flexible modes of engagement was also identified .…”

Section: Resultsmentioning

confidence: 99%

“…Being present with community partners and ensuring feedback is ongoing as agreed with community partners were identified in the reference panels. Ensuring engagement and outputs are flexible and innovative emerged in most of the literature and in the reference panels …”

Section: Resultsmentioning

confidence: 99%

“…This happened between academics who were working towards project timelines agreed by the grant funders and the desire of community partners, who wished to advance emancipatory work at their own pace . Developing guidelines/protocols were identified as a key mechanism to support diverse involvement, ensuring flexibility and clarity on data ownership and usage …”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

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et al. 2019

Health Expectations

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Objective Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. Methods A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007‐2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory‐based grid linking context to behaviour change policy categories. Main results From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6). Conclusions While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.

“…Case studies: Three in total including a US case study article on how to diversify participants in clinical research; a UK study presenting participatory action research between patients and emergency department staff to improve palliative care experiences . The third article presented three case studies from Australia highlighting learnings in research with highly marginalized young people Reflective articles: Three articles including a reflective article on developing and sustaining an emancipatory research project between Irish, Ugandan, Tanzanian and South African partners; a UK reflective article on co‐producing research with an intermediary community partner; a reflective article identifying methods to engage hard to reach patients in patient‐centred outcomes …”

Section: Resultsmentioning

confidence: 99%

“…The majority of papers and reference panels stressed that early engagement with community partners was a key enabler to shape the research process from the outset . The reference panel with Pavee Point reinforced this point.…”

Section: Resultsmentioning

confidence: 99%

“…Providing ongoing education to researchers that includes the active involvement of community partners was stressed. This was seen as important to enable a shared understanding of the broader contexts for which the research is being undertaken . 44 The use of innovative and flexible modes of engagement was also identified .…”

Section: Resultsmentioning

confidence: 99%

“…Being present with community partners and ensuring feedback is ongoing as agreed with community partners were identified in the reference panels. Ensuring engagement and outputs are flexible and innovative emerged in most of the literature and in the reference panels …”

Section: Resultsmentioning

confidence: 99%

“…This happened between academics who were working towards project timelines agreed by the grant funders and the desire of community partners, who wished to advance emancipatory work at their own pace . Developing guidelines/protocols were identified as a key mechanism to support diverse involvement, ensuring flexibility and clarity on data ownership and usage …”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

¹

,

²

,

³

et al. 2019

Health Expectations

View full text Add to dashboard Cite

Objective Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. Methods A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007‐2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory‐based grid linking context to behaviour change policy categories. Main results From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6). Conclusions While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.

Researching Within the Educational Margins

2020

Palgrave Studies in Education Research Methods

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The following chapter will address the many challenges faced when conducting research with the autistic community. In particular, the considerations, challenges and wicked problems that were encountered as the researcher worked towards obtaining ethical clearance for the research study 'Self-determination for the rest of my life: Young autistic adults' insights into the interaction between Queensland secondary school transition practices and post-school quality of life'. The question of why and how autistic people came to be marginalised within education and educational research, and the impact that this has for the people themselves and for research outcomes will be addressed. The specific and evolving strategies employed to address some of the challenges and wicked problems within this research project are shared, while considering the processes needed for developing effective, and at times innovative, strategies to effectively include this marginalised group. Throughout the chapter, concepts and approaches for further engaging the autistic community in communicating their experiences and articulating their voices are woven into the discussion, with the aim of supporting researchers, autistic people and the wider community to engage in reflective dialogues about effective educational research with the autistic community.Autism spectrum disorder (ASD) is a condition in which individuals display differences in how they engage in social communication. Rigid and repetitive interests and behaviours are also exhibited (Diagnostic and Statistical Manual 5 th edition [DSM 5], 2013). Contemporary understandings recognise one condition, autism spectrum disorder, with a strong emphasis on acknowledging the wide spectrum and levels of differences each individual experiences, and the supports required by each (DSM 5, 2013: Vaccaro, Kimball, Wells & Ostiguy, 2015.Thus, the use of the umbrella term 'autism' throughout the chapter is utilised, whilst acknowledging the significant variation that exists between individuals with the same diagnosis.The researcher has both a personal and professional interest in this topic, as both the parent of a young autistic adult, and as an educator who has worked for many years supporting autistic people within the Queensland education system in Australia. Both experiences have shown that education can, and often does, function as an agent of marginalisation for people with autism. Research supports this experience, finding that the majority of individuals with autism experience poor academic and social outcomes throughout school and poor post

Embracing the Ethical Possibilities of Researching About Autistic Individuals’ Transition to Post-School Opportunities in South West Queensland, Australia

¹

2020

Palgrave Studies in Education Research Methods

View full text Add to dashboard Cite

The following chapter will address the many challenges faced when conducting research with the autistic community. In particular, the considerations, challenges and wicked problems that were encountered as the researcher worked towards obtaining ethical clearance for the research study 'Self-determination for the rest of my life: Young autistic adults' insights into the interaction between Queensland secondary school transition practices and post-school quality of life'. The question of why and how autistic people came to be marginalised within education and educational research, and the impact that this has for the people themselves and for research outcomes will be addressed. The specific and evolving strategies employed to address some of the challenges and wicked problems within this research project are shared, while considering the processes needed for developing effective, and at times innovative, strategies to effectively include this marginalised group. Throughout the chapter, concepts and approaches for further engaging the autistic community in communicating their experiences and articulating their voices are woven into the discussion, with the aim of supporting researchers, autistic people and the wider community to engage in reflective dialogues about effective educational research with the autistic community.Autism spectrum disorder (ASD) is a condition in which individuals display differences in how they engage in social communication. Rigid and repetitive interests and behaviours are also exhibited (Diagnostic and Statistical Manual 5 th edition [DSM 5], 2013). Contemporary understandings recognise one condition, autism spectrum disorder, with a strong emphasis on acknowledging the wide spectrum and levels of differences each individual experiences, and the supports required by each (DSM 5, 2013: Vaccaro, Kimball, Wells & Ostiguy, 2015.Thus, the use of the umbrella term 'autism' throughout the chapter is utilised, whilst acknowledging the significant variation that exists between individuals with the same diagnosis.The researcher has both a personal and professional interest in this topic, as both the parent of a young autistic adult, and as an educator who has worked for many years supporting autistic people within the Queensland education system in Australia. Both experiences have shown that education can, and often does, function as an agent of marginalisation for people with autism. Research supports this experience, finding that the majority of individuals with autism experience poor academic and social outcomes throughout school and poor post

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