Family issues in a psychoeducation group for women with a <i>BRCA</i> mutation

Speice, Jenny; Sh, McDaniel; Pt, Rowley; Loader, Starlene

doi:10.1034/j.1399-0004.2002.620204.x

Cited by 44 publications

(63 citation statements)

References 15 publications

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“…Additionally, some family members either did not seem to understand the significance of the result (Bradbury et al, 2007;Costalas et al, 2003;Blandy et al, 2003), seemed to be in denial of its significance or were not convinced of the result's implications (Speice et al, 2002).…”

Section: On Family Relationshipsmentioning

confidence: 99%

Section: On Family Relationshipsmentioning

confidence: 99%

“…Both the genetic information and these reactions can have a longer-lasting impact on family relationships. The following will serve as a review of reports in the literature that describe initial reactions from family members and effects on family relationships.Some family members react to the news by feeling shocked, afraid, resentful, sad, guilty, angry, or blameful (Speice et al, 2002;Bradbury et al, 2007;Costalas et al, 2003). Anger or resentment could be because of the timing or the way in which information was given (Hallowell et al, 2005b) or, for family members preferring not to know, because the disclosure occurred at all (DudokdeWit et al, 1997).…”

mentioning

confidence: 99%

“…Anger or resentment could be because of the timing or the way in which information was given (Hallowell et al, 2005b) or, for family members preferring not to know, because the disclosure occurred at all (DudokdeWit et al, 1997). Strong emotions could manifest from concern about one's own 22 cancer risk or a family member's risk (DudokeWit et al, 1997) or because the grief or tension from a past loss of a family member is reactivated with this news (DudokeWit et al, 1997;Speice et al, 2002).Additionally, some family members either did not seem to understand the significance of the result (Bradbury et al, 2007;Costalas et al, 2003;Blandy et al, 2003), seemed to be in denial of its significance or were not convinced of the result's implications (Speice et al, 2002).This last reaction was most common when the result was negative, as some relatives, such as children of parents testing negative, were still convinced that their health was at stake (Hallowell et al, 2005a(Hallowell et al, , 2005b. Other family members interpreted a positive result not as upsetting but as an explanation for the strong family history of cancer (Bradbury et al, 2007).…”

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confidence: 99%

“…For instance, one research participant in WernerLin's study (2007) tested positive for a BRCA mutation, as did her older sisters; however she felt isolated from her sisters because they were all married with children while she was not. There can also be family discord, especially when family members disagree about the implications of the mutation for the family (Speice et al, 2002) or about who should be informed (Forrest et al, 2003).On the other hand, having the mutation in the family can have positive effects on some family relationships. For instance, one research participant stated that she had been feeling lonely after her breast cancer diagnosis but upon finding that she shared the BRCA gene with her family members she felt consoled, because it then became a problem the family could address together (Kenen et al, 2006).…”

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confidence: 99%

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The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Douglas¹,

Hamilton

Grubs³

2009

Journal of Genetic Counseling

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Individuals with a personal or family history of cancer can pursue testing for mutations in BRCA1 and BRCA2, breast and ovarian cancer susceptibility genes, in order to help them make decisions about cancer risk-reducing surgeries and other management options. However, this genetic testing can also have emotional consequences, not only for the tested individual but also for his or her relatives since testing can provide risk information for them as well. Thus, this study investigated the impact of BRCA testing on family dynamics and family relationships. A qualitative research design was employed, in which a secondary analysis was conducted on interview transcripts. In the initial study, two open-ended, tape-recorded interviews were performed using grounded theory methodology with each of 12 participants approximately three years apart. All participants had tested positive for a mutation in either BRCA1 or BRCA2.Thematic analysis of interview transcripts was conducted in the current secondary analysis to characterize family relationships after BRCA testing. Three main themes were identified: 1.That the first in the family to have testing or seek genetic counseling takes on a special family role that can be difficult for them; 2. That discussions in the family, especially those associated with BRCA testing, often change after genetic testing; and 3. That individuals may feel more or less connected to certain family members after genetic testing has occurred in the family. These changes in family dynamics seem to depend on the family history of cancer, prior relationships within the family, emotional coping strategies of relatives, value placed on particular iv communication patterns, and sharing or not sharing the family's BRCA mutation. The results of this study highlight the profound changes in family life that can occur after BRCA testing.Health professionals can use the insight they gain from this study in their management of patients considering BRCA testing. This work also has public health relevance since it describes how genetic testing for susceptibility to a common disease can influence family dynamics. Such an understanding will be important as the genetic basis of common disease becomes better understood and tests for additional susceptibility genes become available. PREFACEFirst and foremost, I would like to acknowledge all of the participants in this study for sharing their experiences so openly. These individuals were truly an inspiration to me and have greatly The preliminary interviews were supported by a research grant to Dr. Rebekah J.Hamilton from Sigma Theta Tau International. INTRODUCTIONIn the 1990s, the discovery of the BRCA genes offered an explanation for the clustering of ovarian cancer and early onset breast cancer in some families. In these families, it was found that individuals who inherited a mutated copy of a BRCA gene had a lifetime risk of cancer much higher than that of the general population, while those who did not inherit a gene mutation had no elevated risk (Ford et al., ...

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Section: On Family Relationshipsmentioning

confidence: 99%

Section: On Family Relationshipsmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Douglas¹,

Hamilton

Grubs³

2009

Journal of Genetic Counseling

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Family communication following a diagnosis of myotonic dystrophy: To tell or not to tell?

Taylor

Poke²,

Wake

et al. 2019

Journal of Genetic Counseling

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Family communication about genetic information enables informed medical and reproductive decision–making. The literature suggests that a significant proportion of genetically at‐risk family members remain uninformed about genetic risk information as a result of non‐disclosure. This study explored the experiences of New Zealand families communicating about a diagnosis of type 1 myotonic dystrophy (DM1). Eligible individuals were identified and recruited from the New Zealand (NZ) MD Prev study, a nationwide study which aimed to determine the prevalence, impact, and costs of genetic muscle disorders across the lifespan. Twelve qualitative semi‐structured interviews were conducted with 17 participants. The findings demonstrate diversity among and within families, with several distinct family narratives described. Most participants reported a motivation to tell relatives about their diagnosis to promote autonomy. Women were pivotal throughout communication processes and this was often tied to the concept of maternal responsibility and a desire to promote relatives’ reproductive autonomy. The diagnosis of DM1 and the subsequent family communication decisions altered relationships for many, with both positive and negative impacts described. The findings demonstrate that individuals require time to explore the impact of a diagnosis of DM1 on self, family and intimate partner relationships to anticipate unique communication challenges. Genetic counselors can use these findings to inform their approach to counseling families with DM1. Longitudinal genetic counseling may be beneficial as a way to provide individuals with life stage specific support as they communicate with their relatives about a diagnosis of DM1.

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Predictive genetic testing in minors for adult‐onset genetic diseases

Borry

Goffin

Nys

et al. 2008

Mount Sinai J Medicine

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This article analyses the ethical discussion of predictive genetic testing in minors for genetic conditions for which there is no phenotypic evidence for disease at the considered time of testing and for which there is currently no treatment available to prevent or forestall the development of the condition. After a presentation of the position of various professional guidelines, we discuss the position and arguments that have been advanced in a recent article that defends a position that is opposed to the professional recommendations. In the article, we discuss the position of voluntary choices and autonomous and informed decision-making in a context of open communication. Thereafter, we analyze the nonmedical benefits and harm related to this type of testing. Finally, we critically analyze 4 arguments: the potential provision of good news if a test is performed, the unbearability of knowing, identity and adjustment, and parental anxiety and uncertainty.

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Family issues in a psychoeducation group for women with a BRCA mutation

Cited by 44 publications

References 15 publications

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

Family communication following a diagnosis of myotonic dystrophy: To tell or not to tell?

Predictive genetic testing in minors for adult‐onset genetic diseases

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