Coming to Terms with the Risk of Breast Cancer: Perceptions of Women with Primary Relatives with Breast Cancer

Chalmers, Karen; Thomson, Kathryn

doi:10.1177/104973239600600207

Cited by 64 publications

(85 citation statements)

References 34 publications

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“…The impact of personal experience on risk perception has been described among persons who have a relative with cancer, 23,20 but the same does not hold true for diabetes or coronary artery disease. Those with a diabetic parent frequently underestimate their personal risk and know little about preventive strategies, such as diet and exercise.…”

Section: Discussionmentioning

confidence: 99%

“…Closeness to the affected relative underpinned the importance of emotional bonds to developing a sense of personal risk. The emotional impact of witnessing a relative' s illness and the nature of the disease itself were important determinants of risk perception, 20 with a strong negative impact leading to a higher sense of vulnerability. The emotional impact of a delayed diagnosis or sudden death probably refl ects similar affective pathways to developing a personal sense of disease risk.…”

Section: Discussionmentioning

confidence: 99%

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'Coming Down the Line'-- Patients' Understanding of Their Family History of Common Chronic Disease

Walter

Emery

2005

The Annals of Family Medicine

104

126

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PURPOSEThe family history is becoming an increasingly important feature of health promotion and early detection of common chronic diseases in primary care. Previous studies of patients from genetics clinics suggest a divergence between how persons with a family history perceive and understand their risk and the risk information provided by health professionals. This interview study aimed to explore how patients in primary care understand and come to terms with their family history of cancer, heart disease, or diabetes and how family history might affect consultations about disease risk and management.METHODS Thirty semistructured interviews were conducted with general practice patients who had a family history of cancer, heart disease, or diabetes. The transcript data underwent a qualitative constant comparative analysis. RESULTSWhat exactly constitutes having a family history of an illness varied among participants. The development of a personal sense of vulnerability to the illness in the family depended not only on the biomedical approach of counting affected relatives but also on a sophisticated interplay of other factors. The emotional impact of witnessing the illness in the family, particularly if the illness was sudden, premature, or fatal, and the nature of personal relationships within a family that determine a sense of emotional closeness and personal likeness with the affected relative, all contributed to the perception of disease risk. Different beliefs about the contributions of nature and nurture to disease can affect patients' views on the degree of control they can exert over their risk.CONCLUSION This study highlights potential differences between the way patients and medical professionals assess and understand familial risk of cancer, heart disease, and diabetes. Our previous systematic review fi ndings are enhanced by showing that personal experience of disease and the emotional impact can also infl uence familial risk perceptions. Eliciting the patient's perspective when discussing risk of chronic disease, particularly in the context of a family history, could inform a more patient-centered approach to risk assessment and communication and support patients to make informed decisions about the management of their disease risk.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

'Coming Down the Line'-- Patients' Understanding of Their Family History of Common Chronic Disease

Walter

Emery

2005

The Annals of Family Medicine

104

126

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“…This is a very different scenario to those women with a family history of the disease, who may carry the belief that they will one day develop breast cancer. 121 Therefore, rather than seeing two assessments (screening and follow-up tests) as giving increased reassurance of good health, women in the general population may view being recalled as undermining their belief in their good health. In the absence of qualitative interview evidence in the general population, this is, of course, speculative.…”

Section: Summary: Psychological Impact In the Family History Of Breasmentioning

confidence: 99%

Systematic review of the psychological consequences of false-positive screening mammograms

Bond

Pavey²,

Welch³

et al. 2013

Health Technol Assess

145

108

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Reports are published in Health Technology Assessment (HTA) if (1) they have resulted from work for the HTA programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors.Reviews in Health Technology Assessment are termed 'systematic' when the account of the search appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others. HTA programmeThe HTA programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care.The journal is indexed in NHS Evidence via its abstracts included in MEDLINE and its Technology Assessment Reports inform National Institute for Health and Clinical Excellence (NICE) guidance. HTA research is also an important source of evidence for National Screening Committee (NSC) policy decisions.For more information about the HTA programme please visit the website: http://www.hta.ac.uk/ This reportThe research reported in this issue of the journal was funded by the HTA programme as project number 09/145/01. The contractual start date was in March 2011. The draft report began editorial review in November 2011 and was accepted for publication in June 2012. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health. Background: In the UK, women aged 50-73 years are invited for screening by mammography every 3 years. In 2009-10, more than 2.24 million women in this age group in England were invited to take part in the programme, of whom 73% attended a screening clinic. Of these, 64,104 women were recalled for assessment. Of those recalled, 81% did not have breast cancer; these women are described as having a false-positive mammogram.

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“…The more complex and variable the illness trajectory, the greater the lived experience, and hence the greater the perceived importance of the family history. These issues were discussed in only 5 articles 23,25,29,30,32 but were implicit in others.…”

mentioning

confidence: 99%

Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research

Walter

Emery

Braithwaite³

et al. 2004

The Annals of Family Medicine

238

217

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PURPOSE Although the family history is increasingly used for genetic risk assessment of common chronic diseases in primary care, evidence suggests that lay understanding about inheritance may confl ict with medical models. This study systematically reviewed and synthesized the qualitative literature exploring understanding about familial risk held by persons with a family history of cancer, coronary artery disease, and diabetes mellitus.METHODS Twenty-two qualitative articles were found after a comprehensive literature search and were critically appraised; 11 were included. A meta-ethnographic approach was used to translate the studies across each other, synthesize the translation, and express the synthesis.RESULTS A dynamic process emerged by which a personal sense of vulnerability included some features that mirror the medical factors used to assess risk, such as the number of affected relatives. Other features are more personal, such as experience of a relative's disease, sudden or premature death, perceived patterns of illness relating to gender or age at death, and comparisons between a person and an affected relative. The developing vulnerability is interpreted using personal mental models, including models of disease causation, inheritance, and fatalism. A person's sense of vulnerability affects how that person copes with, and attempts to control, any perceived familial risk.CONCLUSIONS Persons with a family history of a common chronic disease develop a personal sense of vulnerability that is informed by the salience of their family history and interpreted within their personal models of disease causation and inheritance. Features that give meaning to familial risk may be perceived differently by patients and professionals. This review identifi es key areas for health professionals to explore with patients that may improve the effectiveness of communication about disease risk and management.

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Coming to Terms with the Risk of Breast Cancer: Perceptions of Women with Primary Relatives with Breast Cancer

Cited by 64 publications

References 34 publications

'Coming Down the Line'-- Patients' Understanding of Their Family History of Common Chronic Disease

'Coming Down the Line'-- Patients' Understanding of Their Family History of Common Chronic Disease

Systematic review of the psychological consequences of false-positive screening mammograms

Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research

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