Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study

Rowland, Emma; Plumridge, Gill; Considine, A M; Metcalfe, Alison

doi:10.1016/j.ejon.2016.08.006

Cited by 15 publications

(37 citation statements)

References 38 publications

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“…Adolescent girls at general population‐risk for breast cancer did not demonstrate specific knowledge of BRCA1/2 genes, nor did females with a strong family history . From a small qualitative study there is some evidence that young people in families with a history of breast cancer may have limited understanding of their own health risks due to inhibited risk disclosure by parents, especially to male children in the family …”

Section: Resultsmentioning

confidence: 99%

“…Studies suggest that “younger” adolescents (11 to 13‐year olds in one study, and 14 to 17‐year olds in another) may know less about concepts related to genetics and genetic testing than “older” adolescents (older than 13 years, and 18 to 21‐year olds). Two studies suggest that females, compared to males, may have a more developed understanding of inheritance and genetic risk. Females from families with a history of breast cancer, compared to females at general population‐risk, may also demonstrate a more developed understanding of the heritability of breast cancer …”

Section: Resultsmentioning

confidence: 99%

“…Eight studies investigated children and young peoples' attitudes towards clinical genetic testing recommended for emerging adulthood/adulthood . Most young women with or without a family history of breast cancer expressed at least some interest in or positive attitudes towards genetic testing for breast cancer risk.…”

Section: Resultsmentioning

confidence: 99%

“…Most young women with or without a family history of breast cancer expressed at least some interest in or positive attitudes towards genetic testing for breast cancer risk. One study indicated that young women's interest in undertaking genetic testing for breast cancer risk may sometimes be driven by a desire for breast augmentation as part of prophylactic treatment . In many cases, positive attitudes were tempered by concerns, namely the potential for a negative psychological impact as a result of knowing one's genetic risk ( n = 5/8 studies; see Table ).…”

Section: Resultsmentioning

confidence: 99%

“…Although from a small number of studies, the results also point to specific groups of young people who may require more in‐depth counselling and/or information provision to ensure they accurately understand their personal risks; for example, adolescent and young adult males with a strong family history of breast cancer or where a predisposing mutation has been identified, and young people with SCD . Family‐based communication interventions may be particularly crucial in families where parents' ability to effectively communicate with their children about genetic risks and potentially life‐saving prophylactic procedures may be compromised by anxiety or guilt …”

Section: Discussionmentioning

confidence: 99%

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Children and young people's understanding of inherited conditions and their attitudes towards genetic testing: A systematic review

et al. 2018

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Children and young people are increasingly likely to receive information regarding inherited health risks relevant to their genetic relatives and themselves. We reviewed the literature to determine what children and young people (21 years and younger) understand about inherited conditions and their attitudes towards genetic testing. We screened 1815 abstracts to identify 20 studies representing the perspectives of 1811 children and young people between the ages of 6 and 21 years (1498 children or young people at general population-level risk from 9 studies, 313 affected/at risk from 15 studies). Children and young people at general population-level risk demonstrated a basic understanding that disease predisposition can be inherited within families. Those affected by or at risk of genetic conditions inferred their genetic status from observable, relational characteristics within their family and the results of personal genetic testing if it had occurred, but some misunderstandings of important genetic concepts were evident. Children and young people expressed interest in and a willingness to undertake personal genetic testing, but also articulated concerns about the limitations and risks of testing. Paediatric patients require developmentally-sensitive genetic counselling and support in navigating the unique landscape of their condition.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 3 more Smart Citations

Children and young people's understanding of inherited conditions and their attitudes towards genetic testing: A systematic review

et al. 2018

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Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

Young

Butow

Rhodes

et al. 2019

Journal of Genetic Counseling

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While family communication about a BRCA1 or BRCA2 (BRCA1/2) pathogenic variant can be a catalyst for the uptake of risk‐reducing measures in young adults, disseminating information within families and across generations is complex. This study aimed to explore how young adults and their families communicate about a BRCA1/2 pathogenic variant, from a family systems perspective. In‐depth family interviews and questionnaires (N = 67 individuals; 21 families) were completed at four metropolitan and regional genetic clinics in Australia. Data involved thematic analysis and interpretation based on family systems theory, including the use of standardized measures. Six key themes were identified and explored: (1) Responsibility to protect, (2) “It's a woman's problem,” (3) Family culture influences communication, (4) Adversarial growth and connection, (5) Key events can be relational turning points, and (6) Health professionals can help. Family identities were solidified through the incorporation of a pathogenic variant in family scripts, while members of the family who held differing views to their families expressed less agreeableness and openness to disseminate information. The collective family's experience and perspective toward a pathogenic variant can influence a young adult's decision‐making about genetic testing, risk‐management, and family planning. The utilization of family therapy skills in routine practice would be helpful in facilitating communication and the inclusion of standardized measures is beneficial to identify individuals needing ongoing psychological support. Understanding relationship difficulties that arise from family members holding divergent views can offer insight into future research inquiry and areas of further training and clinical support.

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The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer

Conley

Ketcher

Reblin

et al. 2020

Journal of Genetic Counseling

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Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black women disclose genetic test results and (b) if patterns of disclosure vary based on test result (e.g., BRCA1/2 positive, negative, variant of uncertain significance [VUS]). Black women (N = 149) with invasive breast cancer diagnosed age ≤50 years from 2009 to 2012 received free genetic testing through a prospective, population‐based study. At 12 months post‐testing, women reported with whom they shared their genetic test results. The exact test by binomial distribution was used to examine whether disclosure to female relatives was significantly greater than disclosure to male relatives, and logistic regression analyses tested for differences in disclosure to any female relative, any male relative, parents, siblings, children, and spouses by genetic test result. Most (77%) women disclosed their results to at least one family member. Disclosure to female relatives was significantly greater than disclosure to males (p < .001). Compared to those who tested negative or had a VUS, BRCA1/2‐positive women were significantly less likely to disclose results to their daughters (ORBRCA positive = 0.25, 95% CI = 0.07–0.94, p = .041) by 12 months post‐genetic testing. Genetic test result did not predict any other type of disclosure (all ps > 0.12). Results suggest that in Black families, one benefit of genetic testing—to inform patients and their family about cancer risk information—is not being realized. To increase breast cancer preventive care among high‐risk Black women, the oncology care team should prepare Black BRCA1/2‐positive women to share genetic test results with family members and, in particular, their daughters.

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Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study

Abstract: Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people's understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.

Cited by 15 publications

References 38 publications

Children and young people's understanding of inherited conditions and their attitudes towards genetic testing: A systematic review

Children and young people's understanding of inherited conditions and their attitudes towards genetic testing: A systematic review

Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer

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