Performing the human subject: Arts-based knowledge dissemination in health research

Lafrenière, Darquise; Cox, Susan; Belliveau, George; Lea, Graham W.

doi:10.1386/jaah.3.3.243_1

Cited by 13 publications

(8 citation statements)

References 11 publications

(15 reference statements)

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“…10 Parsons and colleagues 236 argue that the impact of visual representations of qualitative research might be a 'subtle shift in viewers' perspectives'. Visual media lend themselves to an interactive, or dialectic, style of learning, [237][238][239][240][241][242][243][244][245] which can evoke, provoke and stimulate ideas. 239 They can be powerful because they facilitate emotional engagement beyond that from reading reports.…”

Section: Film Outputs From Qualitative Researchmentioning

confidence: 99%

A meta-ethnography of health-care professionals’ experience of treating adults with chronic non-malignant pain to improve the experience and quality of health care

Toye

Seers

Barker

2018

Health Serv Deliv Res

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Background People with chronic pain do not always feel that they are being listened to or valued by health-care professionals (HCPs). We aimed to understand and improve this experience by finding out what HCPs feel about providing health care to people with chronic non-malignant pain. We did this by bringing together the published qualitative research. Objectives (1) To undertake a qualitative evidence synthesis (QES) to increase our understanding of what it is like for HCPs to provide health care to people with chronic non-malignant pain; (2) to make our findings easily available and accessible through a short film; and (3) to contribute to the development of methods for QESs. Design We used the methods of meta-ethnography, which involve identifying concepts and progressively abstracting these concepts into a line of argument. Data sources We searched five electronic bibliographic databases (MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and Allied and Complementary Medicine Database) from inception to November 2016. We included studies that explored HCPs’ experiences of providing health care to people with chronic non-malignant pain. We utilised the Grading of Recommendations Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) framework to rate our confidence in the findings. Results We screened 954 abstracts and 184 full texts and included 77 studies reporting the experiences of > 1551 HCPs. We identified six themes: (1) a sceptical cultural lens and the siren song of diagnosis; (2) navigating juxtaposed models of medicine; (3) navigating the patient–clinician borderland; (4) the challenge of dual advocacy; (5) personal costs; and (6) the craft of pain management. We produced a short film, ‘Struggling to support people to live a valued life with chronic pain’, which presents these themes (see Report Supplementary Material 1; URL: www.journalslibrary.nihr.ac.uk/programmes/hsdr/1419807/#/documentation; accessed 24 July 2017). We rated our confidence in the review findings using the GRADE-CERQual domains. We developed a conceptual model to explain the complexity of providing health care to people with chronic non-malignant pain. The innovation of this model is to propose a series of tensions that are integral to the experience: a dualistic biomedical model compared with an embodied psychosocial model; professional distance compared with proximity; professional expertise compared with patient empowerment; the need to make concessions to maintain therapeutic relationships compared with the need for evidence-based utility; and patient advocacy compared with health-care system advocacy. Limitations There are no agreed methods for determining confidence in QESs. Conclusions We highlight areas that help us to understand why the experience of health care can be difficult for patients and HCPs. Importantly, HCPs can find it challenging if they are unable to find a diagnosis and at times this can make them feel sceptical. The findings suggest that HCPs find it difficult to balance their dual role of maintaining a good relationship with the patient and representing the health-care system. The ability to support patients to live a valued life with pain is described as a craft learnt through experience. Finally, like their patients, HCPs can experience a sense of loss because they cannot solve the problem of pain. Future work Future work to explore the usefulness of the conceptual model and film in clinical education would add value to this study. There is limited primary research that explores HCPs’ experiences with chronic non-malignant pain in diverse ethnic groups, in gender-specific contexts and in older people living in the community. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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Section: Film Outputs From Qualitative Researchmentioning

confidence: 99%

A meta-ethnography of health-care professionals’ experience of treating adults with chronic non-malignant pain to improve the experience and quality of health care

Toye

Seers

Barker

2018

Health Serv Deliv Res

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“…8 These approaches have been used to facilitate learning and to develop empathetic understanding. [9][10][11][12][13][14] Film can be a succinct, accessible and practical means of disseminating findings. 15,16 Existing reviews indicate a need for research to evaluate knowledge mobilised through artsbased research.…”

Section: Introductionmentioning

confidence: 99%

‘It makes you think’ – exploring the impact of qualitative films on pain clinicians

Toye

Jenkins

2014

British Journal of Pain

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Background: Researchers need to consider the impact and utility of their findings. Film is an accessible medium for qualitative research findings and can facilitate learning through emotional engagement. Aim: We aimed to explore the usefulness of a short film presenting findings from a published qualitative synthesis of adults' experience of chronic musculoskeletal pain for pain education. In particular, we were interested in the impact of the film on clinician's understanding of patients' experience of chronic pain and how this knowledge might be used for improved healthcare for people with pain. Methods: Focus groups with healthcare professionals enrolled in a pain management foundation course explored healthcare professionals' experience of watching the film. A constructivist grounded theory approach was adopted by the researchers. Findings: This article presents one thematic exemplar from a wider study. Participants reflected upon the pitfalls of judging by appearances and the value of seeing the person beneath his or her performance. Conclusion: There is a danger that the impact of qualitative findings is under-valued in clinical education. We present one exemplar from a study exploring knowledge mobilisation, which demonstrates that qualitative research, specifically qualitative films, can make us think about the care that we provide to people with chronic pain.

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“…ABHR projects also raise critical ethical issues about the ownership of new learnings and findings, and particularly of the artworks themselves 28 . This includes what licence individual participants, facilitating artists, project leads and researchers have over the use and sharing of information or artwork derived from any project 40,123 . There may be a requirement for new legal and contractual structures to support interdisciplinary research collaboration that acknowledges the rights of contributing artists and participants, over and above service or organisation‐level contracts.…”

Section: Ethical Considerations In Arts‐health Research With Adolescents With Acesmentioning

confidence: 99%

Ethical issues in participatory arts methods for young people with adverse childhood experiences

Pavarini

Smith

Shaughnessy

et al. 2021

Health Expectations

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Context Participatory arts‐based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective Using the current literature on arts‐based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in‐practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages.

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Performing the human subject: Arts-based knowledge dissemination in health research

Cited by 13 publications

References 11 publications

A meta-ethnography of health-care professionals’ experience of treating adults with chronic non-malignant pain to improve the experience and quality of health care

A meta-ethnography of health-care professionals’ experience of treating adults with chronic non-malignant pain to improve the experience and quality of health care

‘It makes you think’ – exploring the impact of qualitative films on pain clinicians

Ethical issues in participatory arts methods for young people with adverse childhood experiences

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