Ambiguous Loss and Disenfranchised Grief: The Impact of DNA Predictive Testing on the Family as a System

Sobel, Susan; Cowan, C. Brookes

doi:10.1111/j.1545-5300.2003.00047.x

Cited by 78 publications

(65 citation statements)

References 36 publications

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“…In the current study, some family members who did not share the mutation felt left out or less connected to their family. To my knowledge, this has not been found previously in BRCA families, however, it has been noted in individuals testing negative for the gene for HD (Sobel and Cowan, 2003;Sobel and Cowan, 2000).…”

Section: Theme # 3: Feeling More or Less Connected To Family Membersmentioning

confidence: 46%

“…This has been seen several times before in BRCA families (Phelps et al, 2007;Speice et al, 2002) and in families with HD or FAP (Sobel and Cowan, 2000;Sobel and Cowan., 2003;Duncan et al, 2008). Specifically, the current study highlights that individuals who are the only ones in their family to test positive may be especially at risk of feeling isolated since their family may not be able to empathize and provide the support needed.…”

Section: Theme # 3: Feeling More or Less Connected To Family Membersmentioning

confidence: 68%

“…Notably, Sobel and Cowan (2003) described one individual who attempted suicide because her negative test result made her feel disconnected from her siblings, who were already displaying the signs of HD.…”

Section: Theme # 3: Feeling More or Less Connected To Family Membersmentioning

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: Theme # 3: Feeling More or Less Connected To Family Membersmentioning

confidence: 46%

Section: Theme # 3: Feeling More or Less Connected To Family Membersmentioning

confidence: 68%

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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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“…Indeed, intra-familial communication is a highly complex process, especially when an inherited genetic condition is involved, thus it is understandable that parents face the dilemma of when, how and what to tell their children about it. 23,24 On the other hand, appropriate communication of genetic risk information by parents to their children is highly desirable, since it has been shown to have longterm consequence in terms of informed reproductive decision-making and better family cohesion. 25 To achieve this, health professionals may have a role in both supporting parents and young people, but their involvement in parents' decisions to communicate genetic risk to young family members was found to be limited in both our search and previous reports.…”

Section: Discussionmentioning

confidence: 99%

Impact of presymptomatic genetic testing on young adults: a systematic review

et al. 2015

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Presymptomatic and predictive genetic testing should involve a considered choice, which is particularly true when testing is undertaken in early adulthood. Young adults are at a key life stage as they may be developing a career, forming partnerships and potentially becoming parents: presymptomatic testing may affect many facets of their future lives. The aim of this integrative systematic review was to assess factors that influence young adults' or adolescents' choices to have a presymptomatic genetic test and the emotional impact of those choices. Peer-reviewed papers published between January 1993 and December 2014 were searched using eight databases. Of 3373 studies identified, 29 were reviewed in full text: 11 met the inclusion criteria. Thematic analysis was used to identify five major themes: period befeore testing, experience of genetic counselling, parental involvement in decision-making, impact of test result communication, and living with genetic risk. Many participants grew up with little or no information concerning their genetic risk. The experience of genetic counselling was either reported as an opportunity for discussing problems or associated with feelings of disempowerment. Emotional outcomes of disclosure did not directly correlate with test results: some mutation carriers were relieved to know their status, however, the knowledge they may have passed on the mutation to their children was a common concern. Parents appeared to have exerted pressure on their children during the decision-making process about testing and risk reduction surgery. Health professionals should take into account all these issues to effectively assist young adults in making decisions about presymptomatic genetic testing.

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“…Although the loss has not yet occurred, a positive test result makes it imminent. An ambiguous loss induces disenfranchised or unacknowledged grief: 30 'a grief about a loss that is not or cannot be openly acknowledged, publicly mourned or socially Predictive testing for Huntington's disease M Decruyenaere et al supported', thus as if they have no right to mourn. The partner's current loss may be considered even more ambiguous and thus less socially recognised than the carrier's loss, which may lead to withdrawal and to a magnification of the negative feelings in the partner.…”

Section: Discussionmentioning

confidence: 99%

Partners of mutation-carriers for Huntington's disease: forgotten persons?

et al. 2005

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This study focuses on psychological distress and coping strategies in partners of tested persons 5 years after predictive testing for Huntington's disease. A total of 16 carrier-couples and 17 noncarrier-couples participated in the study. Self-report questionnaires were used, assessing depression level, anxiety, intrusive and avoidance thoughts and coping strategies. Partners of carriers have as much distress as carriers, and for some distress variables even more (Po0.05 -0.001). They clearly experience more psychological distress than noncarriers' partners, as expected (Po0.05-0.001). Regarding coping strategies, carriers' partners adopt more passive strategies (passive-regressive and avoiding reactions; Po0.05) and less active strategies (social support seeking and problem solving; Po0.05 -0.001), compared to carriers. For both carriers and partners, the adoption of more passive strategies for coping was associated with more distress and the use of more active strategies with less distress (for carriers: Po0.05 -0.001; for carriers' partners: Po0.05). The presence of children before predictive testing was an additional result-specific distress factor in carriers and their partners. In conclusion, carriers' partners have at least as much psychological distress as carriers, but partners have the tendency to draw back. The results suggest that the grief of carriers' partners may be 'disenfranchised', or not socially recognised, as if they have no right to mourn. We moreover interpreted the results referring to concepts such as anticipatory grief, psychological defences, dissonance processes and imbalanced partner relationship. Finally, we formulated some implications for genetic counselling.

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Ambiguous Loss and Disenfranchised Grief: The Impact of DNA Predictive Testing on the Family as a System

Cited by 78 publications

References 36 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

Impact of presymptomatic genetic testing on young adults: a systematic review

Partners of mutation-carriers for Huntington's disease: forgotten persons?

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