Psychosocial Adjustment and Perceived Risk Among Adolescent Girls From Families With <i>BRCA1/2</i> or Breast Cancer History

Bradbury, Angela R.; Patrick‐Miller, Linda; Schwartz, Lisa A.; Egleston, Brian L.; Henry‐Moss, Dare; Domchek, Susan M.; Daly, Mary B.; Tuchman, Lisa; Moore, Cynthia; Rauch, Paula K.; Shorter, Rebecca L.; Karpink, Kelsey; Sands, Colleen Burke

doi:10.1200/jco.2015.66.3450

Cited by 15 publications

(19 citation statements)

References 54 publications

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“…Parents’ coping styles influenced the family environment, how the family communicated about cancer risk, and the young adults’ reaction to a pathogenic variant in the family. A parent's emotional distress has previously been shown to influence offsprings’ anxiety (Bradbury et al, ), or to trigger a “protective” role in young adults who withhold information for fear of further parental distress. The latter is an example of “coalitions” (role‐reversals) according to Structural Family Theory (Minuchin & Lappin, ).…”

Section: Discussionmentioning

confidence: 99%

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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Section: Discussionmentioning

confidence: 99%

Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

Young

Butow

Rhodes

et al. 2019

Journal of Genetic Counseling

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“…To address the kinds of hopes and fears that adolescents and their parents may have about genomic research results, researchers ought to carefully counter misconceptions about the transformative potential of genomic risk information with the accumulating empirical evidence that recipients of genomic information are able to incorporate this information into their sense of self with minimal psychosocial impact (Bradbury et al, 2016; Fernandez et al, 2014; Fishman & McGowan, 2014; Kleiderman et al, 2014; Levenseller et al, 2014; Shkedi-Rafid, Dheensa, Crawford, Fenwick, & Lucassen, 2014; Wade, Wilfond, & McBride, 2010; Wakefield et al, 2016). Lessons from previous research and the current study also suggest that researchers enrolling adolescents in genome sequencing studies ought to be mindful of the ways in which they present the possibility of return of individual results.…”

Section: Discussionmentioning

confidence: 99%

Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences

McGowan

Prows

DeJonckheere

et al. 2018

Journal of Empirical Research on Human Research Ethics

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Opportunities to participate in genomic sequencing studies, as well as recommendations to screen for variants in 59 medically actionable genes anytime clinical genomic sequencing is performed, indicate adolescents will increasingly be involved in decisions about learning secondary findings from genome sequencing. However, how adolescents want to be involved in such decisions is unknown. We conducted five focus groups with adolescents (2) and parents (3) to learn their decisional preferences about return of genomic research results to adolescents. Discussions about decisional preferences centered around three themes: feelings about receiving genomic risk information, adolescent involvement and capacity to participate in decision-making, and recommendations for parental versus collaborative decision-making. We address the contested space between parental duties to act in their children's best interests when choosing which results to return and adolescents' desires to make autonomous decisions. A collaborative decision-making approach is recommended for obtaining consent from adolescents and their parents for genome sequencing research.

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“…4,16 Proposed disadvantages include the potential for psychological harm to the child and family, compromising the child's autonomy, and third-party discrimination. 4 Few studies have investigated the psychological impact of receiving cancer risk information on children and adolescents, and reported some evidence of elevated emotional distress, 17,18 but not necessarily clinical levels of depression and anxiety. 19 There are additional psychosocial challenges for families receiving information about genetic cancer risk in the context of their child's cancer diagnosis.…”

Section: Introductionmentioning

confidence: 99%

“I remember how I felt, but I don't remember the gene”: Families’ experiences of cancer‐related genetic testing in childhood

McGill

Wakefield

Vetsch

et al. 2019

Pediatric Blood & Cancer

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Background Genetic testing in children for hereditary cancer predisposition syndromes (CPSs) involves unique psychosocial and family‐systems considerations. This retrospective study explored the perspectives and emotional reactions of parents and young adults about cancer‐related genetic counseling and testing offered to children in the family. Methods Families were eligible if they had considered genetic testing for a child (≤18 years) within the family. Parents and young adults ≥16 years participated in semistructured interviews that we coded and identified key themes. We also quantitively assessed emotional distress, quality of life, impact of receiving genetic cancer risk information, and service‐related satisfaction. Results From 35 interviews (26 parents, nine young adults), we identified themes spanning families’ experiences from referral to genetic services to the longer term impact of receiving information about family cancer risk from testing of children. Supported by quantitative data, families generally described positive experiences of genetic services and reported benefits to genetic testing. Nevertheless, families faced unique emotional and relational challenges that changed over the family lifecycle. Those challenges differed according to whether the child was asymptomatic or had a cancer diagnosis at testing. Parents of children with cancer described genetic consultations as a secondary concern to the immediate stressors of their child's treatment. Conclusions We conclude that the successful integration of cancer genetics into pediatric cancer care requires specialist pediatric genetic counseling and psychosocial support services that are able to respond to families’ changing needs.

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Psychosocial Adjustment and Perceived Risk Among Adolescent Girls From Families With BRCA1/2 or Breast Cancer History

Cited by 15 publications

References 54 publications

Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

Talking across generations: Family communication aboutBRCA1andBRCA2genetic cancer risk

Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences

“I remember how I felt, but I don't remember the gene”: Families’ experiences of cancer‐related genetic testing in childhood

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