Person-centred data collection methods to embed the authentic voice of people who experience health challenges

Prior, Sarah; Mather, Carey; Ford, Karen; Bywaters, Danielle; Campbell, Steven

doi:10.1136/bmjoq-2020-000912

Cited by 14 publications

(11 citation statements)

References 29 publications

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“…17 (p 1) There is also now a body of scholarship on person-centred research and on person-centred data collection methods such as interviews, photo elicitation and video-reflexive ethnography. 18 , 19 If measures are to embody the most full-bodied person-centredness they will capture ‘what matters’ to individuals and do so in terms that individuals personally identify with – what differences have any interventions made to their lives and how far have their interactions with services helped them to meet the purposes they had hoped for and/or expected? NHS England has, for example, run pilots to experiment with PCOMs.…”

Section: Introductionmentioning

confidence: 99%

Measuring with quality: the example of person-centred care

Cribb

Woodcock

2022

J Health Serv Res Policy

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Qualitative data analysis should be embedded in routine health service measurement, management and organizational practices. The rigorous use of such analyses should become an institutional norm, comparable to the routine use of quantitative data. Our case is intended to have general relevance, but we develop it by reference to person-centred care and patient-centred outcome measures (PCOMs). The increased use of qualitative data analysis of individualized PCOMs is a crucial complementary counterweight to steps towards the standardization of PCOMs. More broadly, our argument is that health care organizations cannot make confident judgements about whether they are offering appropriate care without collecting qualitative data on what matters to individual patients. Introducing properly supported and conducted qualitative data analyses is important in its own right, and also helps underpin the validity and usefulness of quantitative measurement.

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Section: Introductionmentioning

confidence: 99%

Measuring with quality: the example of person-centred care

Cribb

Woodcock

2022

J Health Serv Res Policy

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“…The use of creative methods enabled us to ensure that data collection and analysis were underpinned by person-centred principles that are an effective and acceptable way of capturing the experiences of participants [ 83 ] and of facilitating authentic collaboration [ 84 ].…”

Section: Resultsmentioning

confidence: 99%

Developing New Methods for Person-Centred Approaches to Adjudicate Context–Mechanism–Outcome Configurations in Realist Evaluation

Teeling

Dewing

Baldie

2022

IJERPH

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Realist evaluation provides a general method of evaluating the application of interventions including policy, legislation, projects, and new processes in social settings such as law enforcement, healthcare and education. Realist evaluation focuses on what about interventions works, for whom, and in what circumstances, and there is a growing body of work using realist evaluation to analyse interventions in healthcare organizations, including those using Lean Six Sigma improvement methodologies. Whilst realist evaluation facilitates the analysis of interventions using both qualitative and quantitative research, there is little guidance given on methods of data collection and analysis. The purpose of this study is to address this lack of guidance through detailing the use of innovative person-centred methods of data collection and analysis in a realist evaluation that enabled us to understand the contribution of Lean Six Sigma to person-centred care and cultures. This use of person-centred principles in the adjudication of identified program theories has informed novel methods of collecting and analysing data in realist evaluation that facilitate a person-centred approach to working with research participants and a way of making the implicit explicit when adjudicating program theory.

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“…Individual qualitative in-depth interviews are the preferred research method in order to gain an in-depth understanding of participants’ experiences, especially when these experiences are considered to cause someone to feel sensitive and vulnerable [ 51 ]. Accordingly, individual in-depth interviews were the obvious choice in this study, which included interviews with eight torture survivors who had received surgical treatment in various Norwegian healthcare contexts.…”

Section: Methodsmentioning

confidence: 99%

Torture survivors’ experiences of receiving surgical treatment indicating re- traumatization

Schippert,

Dahl-Michelsen,

Grov

et al. 2023

PLoS ONE

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Due to the invasive nature of surgical procedures and the involvement of medical personnel, torture survivors may experience re-traumatization during surgical treatment. This study aimed to explore torture survivors’ experiences of re-traumatization during surgical treatment as well as the process by which trauma-related emotions and responses are evoked during surgical treatment for torture survivors. Eight men, aged 45 to 72, from four different countries, who have lived in Norway for 6–40 years, were recruited. We assessed torture and surgical care experiences through in-depth interviews, and the data were analyzed using thematic analysis, resulting in five themes: (1) Interactions with healthcare providers, (2) Reactions during treatment, (3) Triggers causing re-experiences, (4) Avoidance, and (5) Suggestions to healthcare providers. In this study, survivors reported challenges receiving surgical treatment, indicating re-traumatization and difficulty returning to daily life following treatment. Participants reported little collaboration in care-related decision-making processes, lack of recognition of torture by healthcare providers involved in surgical care and experiencing healthcare professionals’ attitudes as a source of perplexity, frustration, and despair. Exacerbation of torture memories throughout treatment and re-experiencing of trauma symptoms aggravated these difficulties. Our findings suggest that surgical treatment can remind torture survivors of the traumatic aspects of torture, eliciting strong reactions and feelings like those experienced during torture.

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Person-centred data collection methods to embed the authentic voice of people who experience health challenges

Abstract: Person-centred data collection methods to embed the authentic voice of people who experience health challenges. BMJ Open Quality 2020;9:e000912.

Cited by 14 publications

References 29 publications

Measuring with quality: the example of person-centred care

Measuring with quality: the example of person-centred care

Developing New Methods for Person-Centred Approaches to Adjudicate Context–Mechanism–Outcome Configurations in Realist Evaluation

Torture survivors’ experiences of receiving surgical treatment indicating re- traumatization

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