Table 1.
Qualitative Studies
| AuthorsRef. | Location | Design | Purpose | Sample | Primary findings | Scientific merit |
|---|---|---|---|---|---|---|
| Rowland et al.16 | United Kingdom | Interview with thematic analysis | Examine experiences of parents, children, and young people when discussing genetic risk in families affected by BRCA gene mutations, and how information shared impacts children and young people's views about future risk | Parents, children, or teens testing positive or at risk of carrying the BRCA 1/2 gene; N = 27 from 11 families; 13 children or young people (ages 10–21) and 14 parents | Most parents (primarily mothers) disclosed information. At 12–14 years, discussions primarily focused on how risk affected parent's health. At 15–17 years, focus was on risk to child's health. Discrepancy between parent perception of risk and amount of risk they convey to children sometimes resulted in knowledge gaps among children. Most young people wanted testing if risk info was communicated to them. Greater knowledge of BRCA mutation caused young people to consider the impact that breast cancer risk may have on future relationships and offspring; parents reported children expressing desire for genetic testing to better understand these risks. Males were less likely to perceive risk due to communication from the parents. All families believed it is parents' responsibility to communicate risk info. Themes: Family communication of risk information; selective communication of genetic risks information; children and young people's understandings of genetic risk info; and implications for future decision making. |
1.90 |
| Schultz et al.17 | United States | Qualitative/semistructured interview | Examine the influence of aspects of adolescence on the perspectives of parents regarding Li-Fraumeni testing and discussions of genetic cancer risk | Diagnosis: LFS; N = 46 parents from 39 families (32 mothers and 14 fathers); 92 children (not interviewed); 30 parents had children older than 13, ages of parents not reported | Parents felt the period of adolescence is an important time to discuss genetic testing and LFS. Aspects facilitating discussion: cognitive and developmental appropriateness; increased cancer risk and need for medical screening; genetic knowledge impacting behaviors and habits; preparation for transition to adult care; and reproductive risks. Aspects complicating discussion: negative emotional impact; misunderstandings; added burden; and negative impact on self-image and future planning. Parents felt informing adolescents was crucial to manage medical responsibility in the future. Parents discussed complexities of reproductive choices in the context of genetic risk. Themes: aspects of adolescence supporting or complicating LFS testing and discussions; importance of knowing tumor status in regard to health care decisions; relationship of LFS status and adolescent sexual behaviors; and relationship of LFS status and adolescent risk-taking behaviors. |
2.36 |
| Clarke et al.21 | Canada | Qualitative/semistructured interview | Examine experiences of BRCA1/2 women carriers in communicating genetic risk information to their children | Mothers testing positive for BRCA1/2; N = 24; mean age = 45.4 (SD not reported) | Three phases of disclosure: (1) pre-disclosure, where parents consider the impact the result has on them (fear of getting cancer, loss of future goals, anticipating child reactions, concern for daughters' future, and discrimination), thinking about the context of disclosure (e.g., age of child and emotions, and pressure to disclose), and consequences of not telling (unintentional disclosure and dishonesty); (2) disclosure, including a range of ways they disclosed, from a plan to disclosing unintentionally, emotionality of disclosure; (3) impact of disclosure, including fear of positive result for child, guilt about inheritance, and opinions about when to test; need to provide children with increased emotional support; and limited control over testing timeline for child after disclosure. | 2.18 |
| Bradbury et al.18 | United States | Qualitative/semistructured interview | Examine the content and method of genetic testing result disclosure, understanding and perceptions of hereditary risk, and psychosocial and health-related impact of this communication | Children of BRCA mutation carriers; N = 35; 22 kids (10 male and 12 female), median age = 26 (18–33); 13 parents (11 moms and 2 dads), median age = 48 (43–66) | Parents frequently disclosed to their children; parent with mutation shared result. Most had a good understanding initially, which improved over time; some sought additional information; some were frightened/scared about results; and about half reported their initial reaction after disclosure was different than parents perceived. Being female and older, and already having children were reasons for undergoing testing. |
2.18 |
| Alderfer et al.40 | United States | Qualitative/semistructured interview | Examine expectations of genetic testing | Families getting genetic testing for cancer; N = 12 (8 female and 4 male); mean = 17.8, SD = 4.82 (12–25) | Themes: perspectives on offering genetic testing to children, perceived advantages (allow for disease prevention) and disadvantages (negative emotions) of testing involving children in the decision to test, and psychosocial/behavioral impact of testing. | 2.55 |
LFS, Li-Fraumeni Syndrome; SD, standard deviation.