Family Disclosure Research Articles

Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics.

Disclosure of genetic information within families is one of the longstanding questions under scrutiny in the field of genetics. Most of the probands entrusted with family disclosure succeed in this task, but there are still many problematic cases where it proves difficult. How can professionals help probands disclose this information? What levers can they activate to foster the diffusion of genetic information within families? In the context of a new legal framework concerning this question in France, this paper offers a comprehensive view of the process of genetic counselling in a cancer genetics department. Based on an ethnographic study, it focuses on the interactions between professionals and probands during each step of the testing procedures in order to identify key times when the issue can be addressed. The results show that the question of family disclosure needs to be addressed before, during and after the test. Greater awareness of this continuum among professionals could help them foster family disclosure by supporting the probands at each stage of the testing procedure.

486: Is maternal non-disclosure of HIV serostatus to her family associated with postpartum depression?

ObjectiveTo determine whether maternal disclosure of her positive HIV serostatus to family members prior to delivery is associated with postpartum depression.Study DesignIn this retrospective cohort study, women who received obstetric care in a specialty perinatal HIV clinic (2007-2014) were dichotomized by whether they had disclosed their HIV status to at least one family member aside from sexual partner(s) prior to delivery. Postpartum depression was identified initially by a positive result on a validated depression screening tool (PHQ9 or EPDS) at the six-week postpartum visit and then confirmed by interview with a mental health professional. Postpartum depression rates in women who had disclosed were compared to those in women who had not disclosed. Multivariable logistic regression was performed to identify whether disclosure remained an independent risk factor for postpartum depression after controlling for potential confounders, including antenatal mental health disorders.ResultsOf the 215 women who received care in this time period, 83% (N=179) had a documented family disclosure status and constituted the analyzable sample. In this cohort, 42% (N=76) had disclosed their HIV status to at least one family member prior to delivery. Women who disclosed to their family were younger and had a longer-standing HIV diagnosis. They were also less likely to be a foreign-born or to have been diagnosed with HIV in the index pregnancy. There were no differences in race/ethnicity, marital status, employment status, insurance status, antenatal mental health disorders or substance abuse history between disclosers and non-disclosers. Disclosure to family was associated with lower rates of postpartum depression (11.4% vs 24.7%, p=0.033), which persisted after controlling for potential confounders (Table).Conclusion ObjectiveTo determine whether maternal disclosure of her positive HIV serostatus to family members prior to delivery is associated with postpartum depression. To determine whether maternal disclosure of her positive HIV serostatus to family members prior to delivery is associated with postpartum depression. Study DesignIn this retrospective cohort study, women who received obstetric care in a specialty perinatal HIV clinic (2007-2014) were dichotomized by whether they had disclosed their HIV status to at least one family member aside from sexual partner(s) prior to delivery. Postpartum depression was identified initially by a positive result on a validated depression screening tool (PHQ9 or EPDS) at the six-week postpartum visit and then confirmed by interview with a mental health professional. Postpartum depression rates in women who had disclosed were compared to those in women who had not disclosed. Multivariable logistic regression was performed to identify whether disclosure remained an independent risk factor for postpartum depression after controlling for potential confounders, including antenatal mental health disorders. In this retrospective cohort study, women who received obstetric care in a specialty perinatal HIV clinic (2007-2014) were dichotomized by whether they had disclosed their HIV status to at least one family member aside from sexual partner(s) prior to delivery. Postpartum depression was identified initially by a positive result on a validated depression screening tool (PHQ9 or EPDS) at the six-week postpartum visit and then confirmed by interview with a mental health professional. Postpartum depression rates in women who had disclosed were compared to those in women who had not disclosed. Multivariable logistic regression was performed to identify whether disclosure remained an independent risk factor for postpartum depression after controlling for potential confounders, including antenatal mental health disorders. ResultsOf the 215 women who received care in this time period, 83% (N=179) had a documented family disclosure status and constituted the analyzable sample. In this cohort, 42% (N=76) had disclosed their HIV status to at least one family member prior to delivery. Women who disclosed to their family were younger and had a longer-standing HIV diagnosis. They were also less likely to be a foreign-born or to have been diagnosed with HIV in the index pregnancy. There were no differences in race/ethnicity, marital status, employment status, insurance status, antenatal mental health disorders or substance abuse history between disclosers and non-disclosers. Disclosure to family was associated with lower rates of postpartum depression (11.4% vs 24.7%, p=0.033), which persisted after controlling for potential confounders (Table). Of the 215 women who received care in this time period, 83% (N=179) had a documented family disclosure status and constituted the analyzable sample. In this cohort, 42% (N=76) had disclosed their HIV status to at least one family member prior to delivery. Women who disclosed to their family were younger and had a longer-standing HIV diagnosis. They were also less likely to be a foreign-born or to have been diagnosed with HIV in the index pregnancy. There were no differences in race/ethnicity, marital status, employment status, insurance status, antenatal mental health disorders or substance abuse history between disclosers and non-disclosers. Disclosure to family was associated with lower rates of postpartum depression (11.4% vs 24.7%, p=0.033), which persisted after controlling for potential confounders (Table). Conclusion

Necessity of Systematic HIV Disclosure in HIV-infected Families: Committed Communities Development Trusts Approach and Intervention.

Due to greater access to antiretroviral therapy, telling adolescents that they are HIV-infected and/or affected has become an integral and intricate part of the treatment protocol. Despite growing treatment resources from public and private sectors, there is a lack of systematic disclosure for children and adolescents affected and living with HIV/AIDS. Committed Communities Development Trust, a non-government organization working with children and adults infected with and/or affected by HIV, conducted a mixed-methods, cross-sectional study with 33 families in their home-based care program to evaluate their current disclosure protocol. The findings indicate that these experiences implementing and fine-tuning this protocol provide useful lessons for other Indian non-government organizations working with HIV-positive families.

Self-Disclosure of College Students in Context to Their Gender, Educational Stream and Type of Family

In the present study an attempt has been made to study the effect of Gender, Educational stream and type of family of college students on their self disclosure. In order to pursue above objective Virendra Sinha's Self-Disclosure Inventory was used to collect data. The sample considered of 150 (75 male/75 female) College students selected from various colleges. 25 students were those who have Arts Stream 25 students were those who have commerce stream and 25 students were those who have science stream. Data were analyzed by 2X3 ANOVA, L.S.D. and t- test. Findings of the study revealed that there is no significant difference between self disclosure of male and female students. However there is significant difference found between educational stream on self disclosure of students as well as type of family and self disclosure of college students.

Two Sides of a Story: Mothers’ and Adolescents’ Agreement on Child Disclosure in Immigrant and Native Families

Research on immigrant families often has suggested that the process of immigration can lead to a distancing of adolescents and their parents. This study examined the actual agreement of immigrant and native mother-adolescent dyads in their reports on children's disclosure as an indicator for a trusting mother-child relationship. The research questions related to group-level differences (immigrant vs. native dyads) in mother-adolescent agreement, the prediction of interdyadic differences in mother-adolescent agreement, and the associations between mother-adolescent agreement and both family conflicts and adolescents' depressive symptoms. The sample was comprised of mother-adolescent dyads: 197 native German dyads (adolescents: mean age 14.7 years, 53% female) and 185 immigrant dyads from the former Soviet Union (adolescents: mean age 15.7 years, 60% female). Agreement was assessed using the intraclass correlation coefficient. The results revealed that mother-adolescent agreement was lower in immigrant dyads than in native dyads. In both samples, higher levels of adolescent autonomy predicted lower mother-adolescent agreement. Among immigrants, language brokering was an additional predictor of lower levels of mother-adolescent agreement. The interaction of language brokering and autonomy also turned out to be significant, indicating that if an adolescent was high in language brokering or autonomy, the effect of the other variable was negligible. In both groups, mother-adolescent agreement was negatively related to family conflicts. The study shows that processes in immigrant and native families are rather similar, but that in immigrant families some additional acculturation-related factors have to be considered for a full understanding of family dynamics.

Patients’ intentions to inform relatives about Type 2 diabetes risk: the role of worry in the process of family risk disclosure

Patients with Type 2 diabetes may play a role as intermediary between medical professionals and at-risk relatives to promote diabetes prevention in their family. This study aimed to further our understanding of factors that influence the decisional process of familial risk disclosure in patients with diabetes. In a cross-sectional study, patients with Type 2 diabetes (n = 546) filled in a questionnaire assessing family risk perception, worry, personal beliefs regarding diabetes prevention, diabetes-related family communication, intention and perceived ability to inform relatives about familial risk of diabetes. Data were analysed using hierarchical logistic regression and multiple mediation analyses. Sixty per cent of the patients were willing to inform their relatives about familial diabetes risk; 61% reported high family risk perception and 41% had positive control beliefs with regard to preventive options in relatives. A majority (69%) did not express serious concern about relatives developing diabetes. Worry about relatives, knowing what to tell, whom to notify, and communication about diabetes in general appeared to facilitate family risk disclosure. Unexpectedly, high family risk perception in itself did not significantly increase patients' intentions to inform relatives; rather, risk perception appeared to exert an indirect effect through worry and beliefs about diabetes prevention. Worry in patients with diabetes appears to be a key factor in the process of family risk disclosure. When professionals guide their patients in this process, they should not only provide risk information, but also address worries and emphasize opportunities for diabetes prevention.

Community-Based Rapid Oral Human Immunodeficiency Virus Testing for Tuberculosis Patients in Lima, Peru

Among tuberculosis patients, timely diagnosis of human immunodeficiency virus (HIV) co-infection and early antiretroviral treatment are crucial, but are hampered by a myriad of individual and structural barriers. Community-based models to provide counseling and rapid HIV testing are few but offer promise. During November 2009-April 2010, community health workers offered and performed HIV counseling and testing by using the OraQuick Rapid HIV-1/2 Antibody Test to new tuberculosis cases in 22 Ministry of Health establishments and their household contacts (n = 130) in Lima, Peru. Refusal of HIV testing or study participation was low (4.7%). Intervention strengths included community-based approach with participant preference for testing site, use of a rapid, non-invasive test, and accompaniment to facilitate HIV care and family disclosure. We will expand the intervention under programmatic auspices for rapid community-based testing for new tuberculosis cases in high incidence establishments. Other potential target populations include contacts of HIV-positive persons and pregnant women.

Daughter-in-law Standards for Mother-in-law Communication: Associations With Daughter-in-law Perceptions of Relational Satisfaction and Shared Family Identity

Toward further understanding of the relationship between standards and relational quality in mother-in-law/daughter-in-law relations, daughters-in-law (N = 624) reported on the following: standards for mother-in-law supportive communication, standards for mother-in-law family disclosure, perceptions of mother-in-law enactment of supportive communication and family disclosure, and perceived mother-in-law/daughter-in-law relationship quality (relational satisfaction and shared family identity). These variables were tested via three hypotheses: distressful ideals, unmet ideals, and discrepancy evaluations. Despite some support for all hypotheses, the associations between standards and relational quality varied slightly between the two communication behaviors. For supportive communication, the unmet ideals and discrepancy evaluations hypotheses yielded greater associations than the distressful ideals hypothesis. For family disclosure, the unmet ideals hypothesis resulted in the strongest associations. Results are discussed in regard to further inclusion of standards within the context of in-law relationships.

Adolescents and the right to health: Eliminating age-related barriers to HIV/AIDS services in Rwanda

Under international, regional, and domestic law, adolescents are entitled to measures ensuring the highest attainable standard of health. For HIV/AIDS, this is essential as adolescents lack many social and economic protections and are disproportionately vulnerable to the effects of the disease. In many countries, legal protections do not always ensure access to health care for adolescents, including for HIV/AIDS prevention, treatment, and care. Using Rwanda as an example, this article identifies gaps, policy barriers, and inconsistencies in legal protection that can create age-related barriers to HIV/AIDS services and care. One of the most pressing challenges is defining an age of majority for access to prevention measures, such as condoms, testing and treatment, and social support. Occasionally drawing on examples of existing and proposed laws in other African countries, Rwanda and other countries may strengthen their commitment to adolescents' rights and eliminate barriers to prevention, family planning, testing and disclosure, treatment, and support. Among the improvements, Rwanda and other countries must align its age of consent with the actual behavior of adolescents and ensure privacy to adolescents regarding family planning, HIV testing, disclosure, care, and treatment.

Challenges of genetic testing in adolescents with cardiac arrhythmia syndromes

The ability to sequence individual genomes is leading to the identification of an increasing number of genetic risk factors for serious diseases. Knowledge of these risk factors can often provide...

Self-Disclosure of HIV Seropositivity in Kenya by HIV-Positive Kamba Men and Their Families

Previous research across Sub-Saharan Africa indicates that HIV-positive men are significantly less likely than HIV-positive women to disclose their serostatus. Understanding issues surrounding men's disclosure of their HIV status can be a step toward developing more comprehensive social support for men living with HIV/AIDS and toward enabling effective self-disclosure. This study explores patterns of disclosure of men's HIV-seropositivity among the Akamba of Kenya. Data were collected through focus groups with HIV-positive men, individual in-depth interviews with family members of men living with HIV, and key informant interviews with community leaders. We discuss findings regarding the identity of family disclosure targets, response to disclosure, negotiation of privacy boundaries, and cultural factors encouraging and discouraging disclosure by HIV-positive Kamba men.

'Daddy ran out of tadpoles': how parents tell their children that they are donor conceived, and what their 7-year-olds understand

The present study explored the process of disclosure in gamete donation families in the UK. Interviews were conducted with 23 mothers and 15 fathers who had told their 7-year-old child about the nature of their conception. Twelve children were interviewed about what they understood and how they felt about their donor conception (DC). The majority of families had disclosed by the age of four and mothers were found to be the main disclosers. Although some parents expressed concerns about the disclosure, the majority did not experience difficulties. No child responded to disclosure in a negative way. Seven-year-old children showed little understanding of their DC, despite parents starting the process of disclosure before the age of four. In spite of mothers' concerns about disclosing DC to their children, children responded to disclosure in a neutral way and most parents did not find disclosure to be problematic.

Family disclosure of war trauma to children.

Measham T., Rousseau C. (2010). Family disclosure of war trauma to children. Traumatology, 16(2), 14-25. Original DOI: 10.1177/1534765610365915. This article has been retracted due to the republishing of this article in the December 2010 issue of Traumatology, 16(4). The republishing is due to the necessity of including this article as a part of a Special Issue on “Culture and Trauma” in 16(4), for which this article was originally picked by Special Issue Guest Editors Dr. Sandra Mattar and Dr. Boris Drožđek. Please find the republished article now in Traumatology, 16(4), 85-96. DOI: 10.1177/1534765610395664..

Family disclosure of war trauma to children.

Objective: This article presents results from an exploratory study looking at the relationship between family disclosure of war trauma to children and their children’s play. Creative play was hypothesized to be an indicator of children’s well-being. Method: A comparison was made between a community and clinical sample of children whose families had experienced war. Twenty-one children from West and Central Africa and Algeria were administered a directed sand tray and story-telling play interview. Parents were interviewed about their children’s functioning, development, migration, war history and experience of family separation. A comparison of the children’s play and the family’s approach to the discussion of traumatic events was performed to explore the way in which disclosure was related to the children’s play. Results: The timing and manner in which trauma was disclosed to children appeared to be associated with the children’s ability to play creatively. Creative play appeared linked to a family feeling of safety to discuss their experiences and to a family’s manner of transmitting information so that children could process it. Conclusion: It is hypothesized that the timing and manner in which disclosure occurs may be more important than the disclosure or nondisclosure of war trauma in and of itself. This may have clinical implications for the treatment of children and families from multicultural contexts who have experienced war trauma.

Don’t Ask, Don’t Tell: Coming Out in an Alcoholic Family

This article invites readers inside emotional and relational dynamics of coming out as gay in an alcoholic family system. Taking an interpretive approach to research, focused on how participants make sense of and make meaning from their lived experience, “Don’t Ask, Don’t Tell” offers a longitudinal and narrative ethnographic account of family secrecy and disclosure.

Disclosure to Parents About Everyday Activities Among American Adolescents From Mexican, Chinese, and European Backgrounds

Disclosure to parents and reasons for not disclosing different activities were examined in 489 Chinese, Mexican, and European American adolescents (M = 16.37 years, SD = 0.77). With generational status controlled, Chinese American adolescents disclosed less to mothers about personal and multifaceted activities than European Americans and less about personal feelings than other youth, primarily because these acts were considered personal, not harmful, or because parents would not listen or understand. Disclosure regarding prudential behavior was lower among Mexican American than among European American adolescents, primarily due to concerns with parental disapproval. Multigroup path analyses indicated that greater closeness to parents is associated with more disclosure for all youth and activities; associations between family obligation and disclosure varied by domain and ethnicity.

A Family Jigsaw Story

This autoethnographic narrative shows the complexity of family secrets and disclosure, and suggests that family stories — told and untold — are formed systemically, within a system — within a web of disclosures and reactions, trust and hurt, anger and understanding. This story illustrates the cyclical and holistic nature of family relationships; and discusses how family relationships develop through waves of understanding, reflection, pain, and forgiveness. In this narrative, I propose that in order to understand ourselves and our families, we must look at the big picture, within the context of all of our stories, intertwined and interconnected. Our puzzle has no beginning or end. It is part of a cycle of life, dropped in and looking backwards and forwards, reframing and recreating multiple meanings and identities. This paper also discusses the relational ethics of writing about family secrets in autoethnographic research.

A Systematic Review of Pediatric Adherence to Antiretroviral Therapy in Low- and Middle-Income Countries

Sustaining antiretroviral therapy (ART) adherence requires accurate, consistent monitoring, a particular challenge for low-income countries. The optimal strategy to measure pediatric adherence remains unclear. To conduct a systematic review of pediatric ART adherence measurement techniques, adherence estimates, and clinical correlates in low- and middle-income countries to inform ART adherence monitoring. We searched online bibliographic databases, including MEDLINE and EMBASE, using systematic criteria. Two reviewers selected all descriptive or interventional studies involving nonpregnant, HIV-positive individuals < or =18 years old that measured ART adherence in low- or middle-income countries as defined by World Bank criteria. Data were extracted regarding sample characteristics, study setting, measurement strategy, adherence estimate, and adherence correlates. The search yielded 1566 titles, of which 17 met selection criteria. Adherence measurement strategies included self- or proxy-report measures (14 studies), pill counts (4 studies), pharmacy records, drug levels, clinic adherence, and directly observed therapy (1 study each). The self- or proxy-report measures were heterogeneous, and few employed validation strategies. Caregiver-reported adherence was generally higher than self-report estimates. Pill counts revealed lower adherence estimates. Estimates of ART adherence ranged from 49% to 100%, with 76% of articles reporting >75% adherence. Factors related to family structure, socioeconomic status, disclosure, and medication regimen were all significantly associated with ART adherence. Pediatric HIV care programs in low- and middle-income countries use heterogeneous methods to measure ART adherence. Adherence estimates vary substantially, but most studies from low- and middle-income countries report >75% adherence, whereas most studies from high-income countries report <75% adherence.

Young Men's Perspectives on Family Support and Disclosure of Same-Sex Attraction

ABSTRACT Young men who have sex with men (YMSM) face myriad challenges when deciding to disclose their sexual orientation to family members. Key to this decision is consideration of how disclosure may influence the support they receive from family. This paper explores a diverse sample of YMSM's (N = 43) perspectives on disclosure of their same-sex attractions to key family members and its impact on family support. Several stages/categories of disclosure are described and some YMSM seemed to continue to move between categories. Additionally, relationships after disclosure included negotiations between the expression of their sexual orientation and the maintenance of family support.

Attitudes towards disclosure of conception mode in 899 pregnancies conceived after ICSI

Little is known about parents' attitude towards disclosure of the mode of conception within families conceived by IVF or intracytoplasmic sperm injection (ICSI) and whether parental disclosure influences the child's emotional adjustment. A questionnaire was sent to 1614 families with ICSI children aged 5–6 years, which included the Strengths and Difficulties Questionnaire (SDQ). Data from 899 families (55.7%) could be evaluated. 2.3% (21/899) of the parents had already disclosed the mode of conception. The mean age at disclosure was 4.5 ± 1.1 years. 65.6% (590/899) ‘intended’ to tell their child in future at a mean age of 11.8 ± 3.6 years. The most common reasons for not disclosing were the opinion about a low level of relevance for the child and the wish to ‘protect the child’. There was no evidence of an association between secrecy or disclosure and the emotional and behavioural adjustment of the child. Only a small minority of parents had disclosed the mode of conception by ICSI to their children at the age of 5.5 years. This is similar to what is known about disclosure in third-party reproduction families.