Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

Nycum, Gillian; Avard, Denise; Knoppers, Bartha Maria

doi:10.1038/ejhg.2009.33

Cited by 61 publications

(61 citation statements)

References 37 publications

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“…The literature has overwhelmingly shown that women tend to be considered the “kin keepers” of family health history and as such, are seen as the responsible ones for disseminating health information within the family (Foster, Eeles, Ardern-Jones, Moynihan, & Watson, 2004; Koehly et al, 2009; Nycum, Avard, & Knoppers, 2009; Wiseman, Dancyger, & Michie, 2010). The findings from this study suggest that women's beliefs about cancer may be influenced by whether or not they have a family history of cancer.…”

Section: Discussionmentioning

confidence: 99%

What Women Think: Cancer Causal Attributions in a Diverse Sample of Women

Rodríguez

Gyure

Corona

et al. 2015

Journal of Psychosocial Oncology

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Women hold diverse beliefs about cancer etiology, potentially affecting their use of cancer preventive behaviors. To date, research has greatly focused on the causal attributions cancer patients and survivors hold about cancer, and studies have been conducted primarily with White participants. Less is known about causal attributions held by women with and without a family history of cancer from a diverse community sample. This study sought to identify cancer causal attributions of women with and without a family history of cancer, and explore its relation to socio-cultural factors. Diverse women (60% African-American) recruited at an urban, safety-net women's health clinic (N=471) reported factors they believed cause cancer. Responses were coded into nine attributions and analyzed using chi-squares and logistic regressions. Lifestyle-choices (63%), genetics/heredity (34%), and environmental-exposures (19%) were the top causal attributions identified. Women without a family history of cancer were more likely to identify genetics/heredity as an attribution for cancer than women with a history of cancer in their families. Women who identified as White, who had a higher educational attainment, and had commercial insurance were more likely to report genetics/heredity as a causal attribution for cancer. These findings suggest that socio-cultural factors may play a role in the causal attributions individuals make about cancer, which can, in turn, inform cancer awareness and prevention messages.

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Section: Discussionmentioning

confidence: 99%

What Women Think: Cancer Causal Attributions in a Diverse Sample of Women

Rodríguez

Gyure

Corona

et al. 2015

Journal of Psychosocial Oncology

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“…This raises ethical issues for health professionals and services, as their degree of responsibility for ensuring relatives' awareness of their risks -and the extent to which they should be proactive in this task -have long been debated in genetic health care. 16,17 Previous reviews have been published on the process and outcomes of communication of genetic information within families, [18][19][20] including the communication between children and their parents, 21 the factors influencing patterns of intrafamilial communication and awareness, 22,23 and on the analysis of the communication between genetic specialists and patients. 24 However, to our knowledge there has been no systematic review of studies that have analysed how family communication of information about genetic risks is addressed in genetic counselling practice.…”

Section: Introductionmentioning

confidence: 99%

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

et al. 2015

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Supporting consultands to communicate risk information with their relatives is key to obtaining the full benefits of genetic health care. To understand how health-care professionals address this issue in clinical practice and what interventions are used specifically to assist consultands in their communication of genetic information to appropriate relatives, we conducted a systematic review. Four electronic databases and four subject-specific journals were searched for papers published, in English, between January 1997 and May 2014. Of 2926 papers identified initially, 14 papers met the inclusion criteria for the review and were heterogeneous in design, setting and methods. Thematic data analysis has shown that dissemination of information within families is actively encouraged and supported by professionals. Three overarching themes emerged: (1) direct contact from genetic services: sending letters to relatives of mutation carriers; (2) professionals' encouragement of initially reluctant consultands to share relevant information with at-risk relatives and (3) assisting consultands in communicating genetic information to their at-risk relatives, which included as subthemes (i) INTRODUCTIONSupporting consultands of genetic services to effectively communicate information about genetic risks with their relatives is key to obtaining the full benefits of genetic health care. 1 Genetic health practitioners typically rely on the proband (or, for child probands, the parents) to inform relatives about their potential at-risk status. Passing on such information can be problematic, which may prevent relatives from making informed choices regarding risk management of the disease and life planning decisions. 2 Individual characteristics and patterns of family behaviour and relationships, disease characteristics and cultural factors may withhold or delay disclosure of genetic information to atrisk relatives, even when consultands see this as their personal responsibility. [3][4][5][6][7] Although guidelines recommend that professionals should not contact family members directly, that also state that professionals should actively encourage consultands to transmit relevant risk information to relatives and support them throughout the communication process; however, there is lack of clarity regarding how this should be done. 8,9 There has been some discussion on how to cascade information about genetic health risks to the relatives of patients with familial hyper-cholesterolaemia, including the active contacting of relatives directly by professionals, although this depends entirely upon information provided by the proband. 10 With genetic diseases increasingly treatable and preventable, some recommend a more proactive role of genetic professionals. 11,12

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“…While most studies and reviews report an overall adjustment in the first couple of years post predictive testing, [5][6][7][8] distress levels may start to rise again later, presumably as the time approaches to possible disease onset. 9 Further, individuals may experience difficulties in specific areas of their lives such as family communication 10,11 and discrimination at home and in the work place or with insurance. 12 How young adults choosing to test early cope with such challenges and to what extent pretest counselling provides adequate support and preparation, has not been fully explored.…”

Section: Introductionmentioning

confidence: 99%

Experiences of predictive testing in young people at risk of Huntington’s disease, familial cardiomyopathy or hereditary breast and ovarian cancer

et al. 2013

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While debate has focused on whether testing of minors for late onset genetic disorders should be carried out if there is no medical benefit, less is known about the impact on young people (o25 years) who have had predictive testing often many years before the likely onset of symptoms. We looked at the experiences of young people who had had predictive testing for a range of conditions with variable ages at onset and options for screening and treatment. A consecutive series of 61 young people who had a predictive test aged 15-25 years at the Clinical Genetic Service, Manchester, for HD, HBOC (BrCa 1 or 2) or FCM (Hypertrophic Cardiomyopathy or Dilated Cardiomyopathy), were invited to participate. Thirty-six (36/61; 59%) agreed to participate (10 HD, 16 HBOC and 10 FCM) and telephone interviews were audiotaped, transcribed and analysed using Interpretative Phenomenological Analysis. None of the participants expressed regret at having the test at a young age. Participants saw the value of pretest counselling not in facilitating a decision, but rather as a source of information and support. Differences emerged among the three groups in parent/family involvement in the decision to be tested. Parents in FCM families were a strong influence in favour of testing, in HBOC the decision was autonomous but usually congruent with the views of parents, whereas in HD the decision was autonomous and sometimes went against the opinions of parents/grandparents. Participants from all three groups proposed more tailoring of predictive test counselling to the needs of young people.

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Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information

Cited by 61 publications

References 37 publications

What Women Think: Cancer Causal Attributions in a Diverse Sample of Women

What Women Think: Cancer Causal Attributions in a Diverse Sample of Women

How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence

Experiences of predictive testing in young people at risk of Huntington’s disease, familial cardiomyopathy or hereditary breast and ovarian cancer

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