The importance of methodology to palliative care research: A new article type for Palliative Medicine

Steen, Jenny T. van der; Bloomer, Melissa; Pereira, Sandra Martins

doi:10.1177/02692163211069566

Cited by 10 publications

(8 citation statements)

References 23 publications

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“…46 The need for authentic voices, participatory methods, and approaches which satisfy the right of those dying to participate in research is noted elsewhere. 17…”

Section: Transformative Evaluationmentioning

confidence: 99%

“…46 The need for authentic voices, participatory methods, and approaches which satisfy the right of those dying to participate in research is noted elsewhere. 17 Transformative evaluation draws on emancipatory aims in defining what reality is and how to capture it. Questions about historical, economic, socio-political, and the moral climate need consideration to ensure marginal voices inform the research.…”

Section: Transformative Evaluationmentioning

confidence: 99%

“…In addition, there is a lack of research which explores the practicalities of palliative care and little is known about why outcomes are variable, 17 and the lived experiences of those using services. 6,18 An enduring issue is the concern of gatekeepers omitting people from research, due to ethical concerns.…”

Section: Introductionmentioning

confidence: 99%

“…1 Illness-centric measures are well established compared to concepts like autonomy, human connection, acceptance, comfort, and dignity which are often used in practice, but have underdeveloped metrics 13,14 Research must be able to capture diverse and holistic outcomes in naturalistic settings to accurately appraise palliative care. 15,16 In addition, there is a lack of research which explores the practicalities of palliative care and little is known about why outcomes are variable, 17 and the lived experiences of those using services. 6,18 An enduring issue is the concern of gatekeepers omitting people from research, due to ethical concerns.…”

Section: Introductionmentioning

confidence: 99%

“…19,21 Combing complexity focused approaches like realist evaluation, and participatory approaches like transformative evaluation, may provide an antidote to some of the current methodological challenges. 17 The following article critically introduces the two approaches and discusses their utility to resolve some of the current issues in palliative care. The complementary features of combining the approaches is illustrated with examples from one project, which aspired to understand how end of life volunteering works, for whom, in what circumstances and why.…”

Section: Introductionmentioning

confidence: 99%

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Combining realist evaluation and transformative evaluation to advance research in palliative care: The case of end of life companionship

et al. 2023

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Background: Palliative care requires innovative methods to understand what works, for whom, in what circumstances and why. Realist evaluation has become one prominent approach due to its preoccupation with building, and testing, causal theories to explain the influence of contextual factors on outcomes. Undertaking realist evaluation is not without challenges and may amplify issues of underrepresentation, disempower those working in palliative care, and produce results with poor ecological validity. Complementary approaches are needed which mitigate these challenges, whilst producing credible findings that advances knowledge. Purpose: In this article it is outlined how realist evaluation provides a toolkit to advance research to explain, and empirically test, the complex contours of palliative care. Moreover, it is proposed that transformative evaluation can provide a catalyst to engage and empower those within palliative care, create the opportunity for care transformation, and produce more informed and authentic theories. Discussion: Contemporary issues in palliative care pertain to the complexity of palliative care, the insufficiency of experimental designs alone, and the challenges of achieving inclusive research participation. In this article it is argued that theory led, participatory, opportunistic and naturalistic approaches can provide an antidote to the issues in the literature. The combination also mitigates many methodological critiques of the individual approaches, by increasing the transformative potential of realist evaluation, and explanatory potential of transformative evaluation.

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“…46 The need for authentic voices, participatory methods, and approaches which satisfy the right of those dying to participate in research is noted elsewhere. 17…”

Section: Transformative Evaluationmentioning

confidence: 99%

Section: Transformative Evaluationmentioning

confidence: 99%