The DIPEx Project: Collecting Personal Experiences of Illness and Health Care

Herxheimer, Andrew; Ziébland, Sue

doi:10.1002/9780470755167.ch7

Cited by 30 publications

(22 citation statements)

References 15 publications

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“…Here we report the experiences of the 20 women who had a mastectomy for screen-detected DCIS (see Table 1). Further analyses and extracts from the interviews are also disseminated on the Healthtalkonline website, a resource based on narrative interviews about people's experiences of health and illness (www.healthtalkonline.org, formerly DIPEx) 19 (see Table 2). …”

Section: Methodsmentioning

confidence: 99%

‘A Mastectomy for Something That Wasn't Even Truly Invasive Cancer.’ Women's Understandings of Having a Mastectomy for Screen-detected Dcis: A Qualitative Study

et al. 2011

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Objectives To explore women's understandings of having a mastectomy for screen-detected ductal carcinoma in situ (DCIS). Setting Participants recruited throughout the United Kingdom and interviewed in their own homes by an anthropologist. Methods Qualitative study using semi-structured interviews and thematic analysis. Thirty-five women with screen-detected DCIS were interviewed, of whom twenty had a mastectomy.Results A qualitative thematic analysis of women's understandings of having a mastectomy for DCIS identified four key themes: understandings of routine breast screening; uncertainty about DCIS and its natural progression; uncertainty about whether a mastectomy is justified for DCIS; information gaps and treatment decisions. Women were often concerned that a mastectomy for screen-detected DCIS was a 'drastic' treatment for an asymptomatic, precancerous condition of which they had been previously unaware. Some questioned why they were treated with such urgency, even suspecting that their clinicians were responding to targets. Conclusion Given the uncertainties about DCIS and its complexity, it is important that women have the information they need to make treatment decisions. Better information about the uncertainties and the rationale for using mastectomy as a treatment may help women to make better informed choices and feel more comfortable about their decisions.

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Section: Methodsmentioning

confidence: 99%

‘A Mastectomy for Something That Wasn't Even Truly Invasive Cancer.’ Women's Understandings of Having a Mastectomy for Screen-detected Dcis: A Qualitative Study

et al. 2011

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“…17 Our wider aim in this study was to explore the experiences of people bereaved by a traumatic death. 18 As is common practice in qualitative research, we examined themes that emerged during the data collection as well as those anticipated. 19 The issue of viewing the body was raised by the first person who was interviewed.…”

Section: Introductionmentioning

confidence: 99%

Viewing the body after bereavement due to a traumatic death: qualitative study in the UK

Chapple

Ziébland

2010

BMJ

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Objective Whether bereaved relatives should be encouraged to view the body after a traumatic death is uncertain. This analysis of narrative interviews interprets people’s accounts of why and how they decided whether to view the body and their emotional reactions to this, immediately and at a later stage.Design In depth interviews with qualitative analysis.Participants A maximum variation sample of 80 people bereaved because of suicide or other traumatic death.Setting Most people were interviewed in their homes.Results For those who had the option, decisions about seeing the body varied. Some wanted someone else to identify the body, because they feared how it might look or preferred to remember their relative as they had been in life. Those who had wanted to see the body gave various reasons beyond the need to check identity. Some felt they ought to see the body. Others felt that the body had not lost its social identity, so wanted to make sure the loved one was “being cared for” or to say goodbye. Some people wanted to touch the body, in privacy, but the coroner sometimes allowed this only after the postmortem examination, which made relatives feel that the body had become police property. Seeing the body brought home the reality of death; it could be shocking or distressing, but, in this sample, few who did so said they regretted it.Conclusions Even after a traumatic death, relatives should have the opportunity to view the body, and time to decide which family member, if any, should identify remains. Officials should prepare relatives for what they might see, and explain any legal reasons why the body cannot be touched. Guidelines for professional practice must be sensitive to the needs and preferences of people bereaved by traumatic death. The way that relatives refer to the body can be a strong indication for professionals about whether the person who died retains a social identity for the bereaved.

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“…47,48 For example, the Just for Us program was launched after identifying increased needs of elderly patients in low-income housing in Durham, North Carolina 49 , partnering primary care, county health departments, and housing agencies to bridge clinical medicine with public health and social services. Other bright spots that were highlighted include documenting patient experiences in the EHR 50 and supplementing monitoring patients' SDHs in the EHR, with social needs identified by community advisory councils. 51 Summit speakers and participants recognized the need to prioritize which SDH-related metrics are most critical to monitor, to develop replicable interventions for patients screening positive for SDHs, and to test payment models that enable SDH activities in primary care.…”

Section: Sdhs In Primary Carementioning

confidence: 99%

Revisiting Primary Care's Critical Role in Achieving Health Equity: Pisacano Scholars' Reflections from Starfield Summit II

Park

Coutinho²,

Doohan

et al. 2018

J Am Board Fam Med

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The second Starfield Summit was held in Portland, Oregon, in April 2017. The Summit addressed the role of primary care in advancing health equity by focusing on 4 key domains: social determinants of health in primary care, vulnerable populations, economics and policy, and social accountability. Invited participants represented an interdisciplinary group of primary care clinicians, researchers, educators, policymakers, community leaders, and trainees. The Pisacano Leadership Foundation was one of the Summit sponsors and held its annual leadership symposium in conjunction with the Summit, enabling several Pisacano Scholars to attend the Summit. After the Summit, a small group of current and former Pisacano Scholars formed a writing group to highlight key themes and implications for action discussed at the Summit. The Summit resonated as a call to action for primary care to move beyond identifying existing health inequities and toward the development of interventions that advance health equity, through education, research, and enhanced community partnerships. In doing so, the Summit aimed to build on the foundational work of Dr. Starfield, challenging us to explore the significant role of primary care in truly achieving health equity. (J Am Board Fam Med 2018;31:292-302.)

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The DIPEx Project: Collecting Personal Experiences of Illness and Health Care

Cited by 30 publications

References 15 publications

‘A Mastectomy for Something That Wasn't Even Truly Invasive Cancer.’ Women's Understandings of Having a Mastectomy for Screen-detected Dcis: A Qualitative Study

‘A Mastectomy for Something That Wasn't Even Truly Invasive Cancer.’ Women's Understandings of Having a Mastectomy for Screen-detected Dcis: A Qualitative Study

Viewing the body after bereavement due to a traumatic death: qualitative study in the UK

Revisiting Primary Care's Critical Role in Achieving Health Equity: Pisacano Scholars' Reflections from Starfield Summit II

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