Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review

Abstract

Understanding challenges in familial communication of cancer risk has informed genetic service delivery. Parent-child interactions have received considerable attention, but few studies focus on young adulthood experiences within BRCA1/2 families. Young adults are approaching, or at a life stage where awareness of hereditary cancer risk is vital for informed choice of risk management options. This review assesses family communication, risk perception and cancer knowledge held by 18-40 year old individuals who have a parent with a BRCA1/2 gene mutation or carry the gene mutation themselves. Thirteen papers met the inclusion criteria. One utilized a 'mixed methods' methodology and the remaining used a qualitative approach. Findings were synthesized into themes and reported narratively. In general, parents are communicating openly about genetic risk with young adult offspring, but there is evidence that some young adults are withholding information from their parents about their own test results. Risk perception is influenced by a family history of cancer, childbearing plans and health providers' advice. Misconceptions about genetic risk appear to be common and gaps in hereditary cancer knowledge are evident. It is unclear whether incorrect knowledge was passed from parents to offspring. Health providers need to provide developmentally appropriate services for emerging adults (18-25 years old), with particular support in navigating through risk management options.

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

“…As per the QualSyst scoring system, the total possible score for quantitative studies varies according to the number of items “not applicable” to the study (eg, random allocation of participants in observational analytic studies). Quality scores were defined as limited (<50%), adequate (50%‐70%), good (71%‐80%) or strong (>80%; see Table ) …”

“…Quality scores were defined as limited (<50%), adequate (50%-70%), good (71%-80%) or strong (>80%; see Table 1). 18,36…”

“…In the context of children and young peoples' understanding and knowledge it is important to consider the role of family communication. Recent reviews indicate that although parents hold largely positive attitudes towards childhood genetic testing, miscommunication and misinformation are common in families affected by genetic conditions . Parents may find it difficult to communicate openly with their children about the potential impact of a genetic condition, due in part to feelings of guilt .…”

“…Recent reviews indicate that although parents hold largely positive attitudes towards childhood genetic testing, 17 miscommunication and misinformation are common in families affected by genetic conditions. 18 Parents may find it difficult to communicate openly with their children about the potential impact of a genetic condition, due in part to feelings of guilt. 1 In children and young peoples' broader social context, information about disease, genetics and risk is increasingly present in the media and can influence personal knowledge and misinformation.…”

Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

“…There are several considerations unique to younger adults in this context. Risk‐reducing surgical or screening options are not available until after the age of 18, during a time‐frame when individuals are transitioning into adulthood, and are often concerned about their careers, marriage, and establishing a family (Young et al, ). At‐risk young adults have reported feeling compelled to marry and have children early before their sexuality and fertility are impacted by risk management strategies (Brunstrom, Murray, & McAllister, ; Werner‐Lin, ).…”