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A Study to Develop a Disclosure to Children Intervention for HIV-Infected Women
A Study to Develop a Disclosure to Children Intervention for HIV-Infected Women Tommie P. Nelms, RN, PhD Vicki L. Zeigler, RN, PhD One of the most difficult issues for an HIV-infected woman is the task of telling her children that she has HIV. Interventions are needed to support women in the distressing task of disclosing the diagnosis to their children and to give them directions based on the experiences of others. The purpose of this study was to develop an intervention to help and support women in disclosing a diagnosis of HIV to their children. Information was gathered from four sources: (a) women with HIV, some of whom had disclosed to their children and others who had not; (b) nurses, case managers, and counselors in HIV care; (c) the body of literature on knowledge and best practices related to disclosure of sensitive information to others, especially children; and (d) an expert in the psychology of mothering. The outcome of the project was an intervention, part of which was a printed brochure, to help HIV-infected women in the disclosure process. Key words: disclosure of HIV status, disclosure of sensitive information, HIV, HIV-infected mothers, mother-child relationships
Disclosing a diagnosis of HIV to their children is one of the most important yet most difficult issues for HIV-infected women (Murphy, Roberts, & Hoffman, 2003; Nelms, 2005; Sandelowski, Lambe, & Barroso, 2004; Sheckter, 2002). Results from phenomenological research regarding mothering issues experienced by HIV-infected women with children showed that a diagnosis of HIV presented a number of burdens to these women (Nelms, 2005). One of the burdens described by the women was the struggle
of whether or not to disclose the diagnosis to their children. Of the 16 women interviewed in that study, 11 had purposefully not revealed their HIV status to their children. Although some said they wanted to tell their children or thought they should tell, they said they were afraid of the children’s reactions and did not know how to disclose. The women reported that the main reasons for not disclosing the diagnosis to their children were the desire for their children to have a happy childhood and the stigma associated with HIV (Nelms, 2005). Given these results as well as literature that supported the notion that interventions were needed to support women in the distressing task of disclosing an HIV diagnosis to their children and to give them directions for how to do it (Black & Miles, 2002), further study was undertaken. The purpose of this study was to develop an intervention to facilitate and support women in disclosing a diagnosis of HIV to their children. Information to support the development of the intervention was gathered from several sources: (a) HIV-infected women who had both disclosed and not disclosed to their children were interviewed about their beliefs and experiences of disclosure; (b) counselors, case managers, and nurses in HIV care were interviewed about their experiences in working with women regarding the issue of disclosure to children; (c) Tommie P. Nelms, RN, PhD, is a professor at Kennesaw State University, WellStar College of Health and Human Services, WellStar School of Nursing, Kennesaw, Georgia. Vicki L. Zeigler, RN, PhD, is an assistant professor at Texas Woman’s University College of Nursing, Denton, Texas.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 19, No. 6, November/December 2008, 461-469 doi:10.1016/j.jana.2008.05.005 Copyright Ó 2008 Association of Nurses in AIDS Care
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literature was gathered regarding knowledge and best practices related to disclosure of sensitive information to others, especially children; and (d) an expert in the psychology of mothering was consulted about the topic. The outcome of the project was the development of a two-part intervention. One part of the intervention was a printed brochure with essential information about disclosure of a woman’s HIV diagnosis to her children. The second part was an ongoing support system that could be made available to women and their children during the disclosure process. The purpose of this report is to describe the research process that led to the development of the disclosure intervention and recommendations for its use.
Methods The methodological approach undergirding the original study was phenomenology. An overview of the lived experience of HIV-infected women’s mothering was explicated, part of which was their experience with disclosure of the diagnosis to their children. The current study sought to add depth to HIVinfected women’s experiences with disclosure to their children, and from that to develop an intervention to assist and support women with disclosure. Institutional review board approval for the study was obtained from Texas Woman’s University. Two groups who lived the experience, one directly and the other indirectly, were engaged in in-depth interviews about their experiences related to HIV disclosure. HIV-infected women who had disclosed their diagnosis to their children and others who had not disclosed were interviewed. HIV care nurses, case managers, and counselors were also interviewed about their experiences in working with women with regard to the issue of disclosure to their children. The knowledge and understandings gained from those two groups were combined with information gathered from the literature on disclosure of sensitive information to children as well as with input from an expert in the psychology of mothering to develop the intervention.
Data Collection and Results For ease of discussion, the study is described in phases according to the different data sources.
Results from the data gathered from the different sources are discussed with each phase to help the reader follow the development of the project.
Phase I In Phase I, 5 HIV-infected women with children were recruited for a study about experiences with disclosure to children and were interviewed by the primary researcher; an additional 3 women who had participated in the original study volunteered to be reinterviewed specifically about their experiences with disclosure. Data from these 8 women reaffirmed the experiences of disclosure to children that were gathered in the original study, and the researcher was able to determine that saturation had been reached and terminated further recruitment of HIV-infected women. Of the 8 women interviewed, 3 had disclosed to their children and 5 had not. Three of the women were White (1 had disclosed, 2 had not), 3 were African American (2 had disclosed, 1 had not), 1 was African (had not disclosed), and 1 was Hispanic (had not disclosed). All of the women were clients at a comprehensive AIDS Service Organization (ASO) in north Texas, where the primary researcher volunteered weekly. Clients seen at this ASO differed somewhat from HIV-infected mothers described in the literature by reflecting a higher socioeconomic status and less drug use. Most of these women worked to support themselves and their children or were supported by working husbands. Some had a history of illegal drug use, but none were using at the time of the interviews. All women signed voluntary informed consents before their interviews. The 1 White woman who had disclosed told her 8year-old daughter about the infection within weeks of learning her diagnosis, believing that being open about the diagnosis at such an early age would help the girl accept her mother’s condition. At the time of the interview, the daughter was 17 years old and had grown up knowing her mother was infected with HIV. The mother’s health had remained relatively good over the years, and she had never regretted her decision to disclose to the girl at such a young age. She said she and her daughter were very close and, although the mother was single, they had a strong family support system. The daughter had plans to
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attend medical school and become a doctor because of her mother’s diagnosis. One of the African American women who had disclosed had four children from two different marriages. Her three oldest children were grown, and she had informed them within hours to months of learning her diagnosis. Her youngest son, an adolescent who still lived at home, had just recently been told about his mother’s diagnosis. The mother had a number of health problems (lymphoma, diabetes, heart disease) in addition to HIV and believed the son should know the full extent of her health problems. She said her son had been very kind and concerned upon hearing her diagnosis, and she felt a great deal of support from him. The son’s father, an HIV-infected man who was in prison at the time of the interview, had pressured the woman not to disclose to anyone in their family. After disclosing to her son, the woman had attended a women’s retreat sponsored by the ASO. The education and encouragement she received and stories she heard from other HIV-infected women at the retreat regarding the benefits of disclosure also led her to disclose to two of her sisters. She was surprised at and grateful for the support and love she received from her sisters after she shared her diagnosis. The other African American woman who had disclosed told her five children and their children shortly after learning her diagnosis a number of years ago and continued to receive support and understanding from all of them. The Hispanic woman who had not disclosed to her two school-age daughters was seriously considering disclosing at the time of interview. She had recently completed an inpatient drug treatment program and remarried and was anxious to get her daughters home from living with their grandmother. At a women’s support group meeting attended by the primary researcher, this woman met the woman who disclosed to her 8-year-old daughter and was encouraged that she too could disclose to her daughters who were 8 and 9 years old. Not long after the interview, however, the woman began using drugs again and was lost to contact by members of the clinic staff. It is unlikely she disclosed her diagnosis to her children. The African woman in the study was adamant that she would never disclose to her three children (2 school age and 1 college age), ‘‘I’m not ready for my kids to be made fun of in this way.. It’s my fault.it’s
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not their fault, and I’m not going to mess up their lives because of a mistake that I did.’’ She believed there was far more to her as a mother and her mothering than her HIV status, and she was trying to live her life in such a way that if her children ever found out her diagnosis, they would understand why she had not disclosed to them by the way she had mothered them. This woman had been diagnosed for 1 year and had been in good health. Only her husband and his aunt knew the diagnosis, and the woman planned to keep the secret from all other family members, including her mother. One of the White women who had not disclosed had been diagnosed for 15 years. Her two children had been school age at the time of her diagnosis but were grown at the time of the interview. This woman had decided from the moment she learned her diagnosis that she would not disclose to her children or parents, and she had maintained that resolve in spite of encouragement from ASO nurses, case managers, and counselors. Although at the time of the interview the woman had been having more health problems related to her HIV status, she remained firm in her resolve not to disclose, fearing discrimination from her ‘‘very religious’’ family and the possibility she would be forbidden to see her grandchildren. The other White woman who had not disclosed had developed lymphoma since her first interview, and although she had disclosed the diagnosis of lymphoma to her parents and teenaged son, she still could not bring herself to disclose her HIV diagnosis. She was grateful for the love and support she had received from her family related to her lymphoma and said that at times she wanted to disclose her HIV status to her family and had come close to disclosing, but she just did not ‘‘have the courage.’’ The woman’s ex-husband, her son’s father, had died of AIDS when the boy was young, and she did not want him to fear she might also die of HIV. The African American woman who had not disclosed her diagnosis to her three school-aged children let them find out by default. She frequently took her children with her to the ASO clinic for appointments and to ASO-sponsored events such as Thanksgiving dinners and Christmas parties. The terms HIV and AIDS were used at the functions and on written materials. Because the children could read, the woman assumed they knew her diagnosis, although she had
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never spoken of it with any of them, nor had they mentioned it to her. The ASO counselor said she had offered to facilitate disclosure to the woman’s children many times, but the woman always refused. On one occasion the woman’s young daughter had witnessed her mother being taken from the clinic on a stretcher, put into an ambulance, and taken to the hospital because of a low hemoglobin level. Her uncle had to be called to take the child home, and still the mother said the incident was never discussed with the child. The researcher witnessed this incident and heard the child ask, ‘‘Is my mommy going to die?’’ as her mother was wheeled out. Interviews were transcribed verbatim and analysis revealed four patterns of disclosure: (a) some women decided early on that they would not disclose the diagnosis to their children and they were not swayed from that decision regardless of encouragement to do otherwise by HIV care providers or other HIVinfected mothers; (b) some women disclosed to their children soon after the diagnosis and were very satisfied with the decision and the support they received; (c) some women were influenced to disclose to children and other family members after hearing the stories of women who had successfully disclosed to their children and by discussions and dialogues about disclosure at support group activities sponsored by ASOs; and (d) some women did not verbally disclose to their children but allowed the diagnosis to be disclosed by exposing the children to the care and services the mother received at the ASO. Although there was diversity among the women interviewed, their experiences of disclosing and not disclosing were quite similar. Phase II In Phase II, interviews were conducted by the primary researcher with 6 HIV care providers (2 nurses, 2 counselors, and 2 case managers) in two different ASOs in north Texas. All care providers signed voluntary informed consents before the interview. The care providers said they supported women in the process of disclosure to children and other family members, although they agreed it was the mother’s and family’s decision and they did not advocate disclosure until the mother was comfortable with her diagnosis and the process. Care providers also agreed
that the mother’s reaction to her HIV diagnosis had a great deal to do with children’s and family’s reaction to disclosure of the diagnosis. If the mother was calm and matter-of-fact about the diagnosis, children would be also, but if the mother was emotional, crying, and fearful, children were likely to react that way too. All care providers who saw women at scheduled visits agreed that issues of disclosure were a topic of assessment and discussion at each meeting and that the women were to be assured that disclosure could be discussed at any time. All of the care providers who were interviewed agreed that disclosure to children and trusted family members was better than not disclosing, as long as it was the woman’s decision. The care workers made this philosophy known to their women clients. One counselor said she had never experienced a bad result from a mother’s disclosure of HIV to her children. She had, however, seen children, especially teenagers, who were angry at learning their mother had HIV, especially if the mother had died without sharing the information. Another counselor from an agency serving HIVaffected families in a large metropolitan area in north Texas said it was her agency’s philosophy to neither encourage nor discourage disclosure but rather to support the mother in whatever decision she made and to present a balance of potential advantages and disadvantages related to disclosure to children. She said each family case was different and, although she had seen disclosure to children bring families together, she had also seen it ‘‘set families apart.’’ When asked what negative reactions to disclosure she had seen, she noted children acting out in fear and anger with behavior problems such as skipping school, not listening to parents, and participating in risky behaviors, in addition to revealing the mother’s diagnosis to their classmates at school. This counselor said that when she educated HIV care providers about disclosure, she cautioned them to remember that the mother always knows her family better than the provider. Providers only saw the mother and/or family for an hour or two at a time and had limited information about family behaviors and family fears. Her final statement and her basic philosophy about disclosure to children was, ‘‘The best time to disclose is when the family is ready.’’ All care providers saw the issue of disclosure, for both disclosing mothers and nondisclosers, as an
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ongoing issue requiring support, communication, listening, education, and encouragement and said they offered to support women in disclosing to children in whatever ways women desired. Participants in this study offered women the following: (a) to sit with the woman and her children while the mother disclosed; (b) to tell the children the mother’s diagnosis while the mother was present or absent, depending on her preference; (c) to be available by telephone or in person when the mother disclosed to children; or (d) to meet with the children at a time after the disclosure as needed depending on their reactions and questions. The care providers believed nondisclosure to children was a stressor for HIV-infected mothers that could be avoided. Nondisclosure forced women to work to keep secrets they would not otherwise need to keep. One counselor noted that being ‘‘care givers’’ often caused women to ignore their own health needs while attending to family needs. She noted that this was not a good trait if a woman needed to focus on her own health care needs. Phase III Phase III of the study was a literature review. Literature in nursing, medicine, health care, sociology, social science, psychology, and psychiatry regarding best practices for disclosure of sensitive information to others, especially children, was reviewed. The following databases were searched for studies published between 2000 and 2005: CINAHL (Cumulative Index to Nursing and Allied Health Literature), Medline, PsychInfo, Cochrane Library, and the Psychology and Behavioral Sciences Collection. Search terms included disclosure, child, family health, mother, HIV, and serious illness. In all, 21 articles were found that specifically addressed disclosure of serious illness to children, including cancer, HIV, hemophilia, and death of a parent. Sources were reviewed on the topics of child growth and development, including cognitive and psychosocial development, as well as children’s conceptions of health and illness. The following paragraphs discuss the themes that emerged from the review of the literature. Ill parents disclosed sooner than healthier parents, and older children were disclosed to more often than younger children (Armistead, Tannenbaum,
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Forehand, Morse, & Morse, 2001). Other than these two factors, there seemed to be no difference between women who disclosed and those who did not. HIVinfected women disclosed more often than infected men, and daughters were disclosed to more often than sons, although over time this difference was minimal (Armistead et al., 2001). The majority of mothers who disclosed had no regrets about disclosure (Murphy et al., 2003). Given enough time, the majority of parents with HIV disclosed the diagnosis to their children. Therefore, according to some researchers, an intervention to foster and support disclosure to children would simply speed up a process that would likely happen naturally, in the United States at least (Lee & Rotheram-Borus, 2002). Studies reported that mothers needed to be ‘‘ready’’ to disclose to their children. Disclosure was best when the mother had dealt with her own emotions over the diagnosis before disclosing to children (Lee & Rotheram-Borus, 2002; Murphy et al., 2003). Mothers needed to plan what they wanted to say to their children before the disclosure discussion. They needed to educate themselves about HIV and have age-appropriate materials related to the disease available for the disclosure. Disclosure was more effective if it occurred when the mother was in a good frame of mind and feeling healthy and strong and not when she was ill, in a bad mood, angry, using drugs or alcohol, depressed, or when there were other family crises. Studies showed that disclosure needed to be performed in a calm and natural manner without shame to make the situation less stressful for children (Murphy et al., 2003). According to children who had been through the process of disclosure, parents needed to be honest, hopeful, positive, and prepared to answer children’s questions (Sheckter, 2002). Disclosing when children were 6 to 10 years old was best (Armistead et al., 2001; Parents of Kids with Infectious Diseases, 2005). Children needed to be encouraged to ask questions and told they could continue to ask any questions they had in the future (Vallerand, Hough, Pittiglio, & Marvicsin, 2005). Children needed emotional support and reassurance during and after disclosure, and additional support and education should be provided for children after the disclosure process, such as by a health care professional or counselor (Murphy et al., 2003). Mothers could also introduce their children to other women
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who have been infected with HIV for a number of years to enable the children to see the potential for long-term good health with the disease. Disclosure needed to take into account the child’s age, the family’s communication style, the parent’s beliefs regarding the illness, and the parent’s capacity to cope with children’s reactions and feelings (Barnes et al., 2000). Disclosure needed to be individualized and based on the child’s cognitive ability, developmental stage, and cultural sensitivities (Barnes et al., 2000). Given that mothers and children often interpreted disclosure consequences on child functioning very differently, interventions also needed to take into account the child’s conception of illness (Shaffer, Jones, Kotschick, Forehand, & the Family Health Project Research Group, 2001). Family nursing practice has recommended that nurses foster the knowledge and power that already reside within families through caring relationships that enhance family health and family functioning (O’Sullivan Burchard, 2005). Women therefore need to be empowered and reminded that they know their children and family situations best and thereby know best when, and if, to disclose to their children. Phase IV Phase IV of the project involved consultation with an expert in the psychology of mothering. At the time, the expert was a psychology faculty member at Texas Woman’s University and taught courses in the psychology of mothering. In discussions with the primary researcher, she expressed her expert opinion that keeping secrets within a family, such as a mother hiding an HIV diagnosis from her children, was an added stressor to the woman’s already stressful life, whereas disclosure of the secret could foster a closer, more open, and honest relationship between the woman and her children. Not disclosing to children also perpetuated the stigma associated with HIV, but early disclosure allowed a woman more time to educate, process with, and comfort her children while she was still in good health. Children often give HIV-infected women a reason to work to maintain their health; they also serve as a source of support and comfort. When and if the children discovered that their mother had kept such an important secret from
them, they could feel angry and betrayed and wonder what other secrets their mother had kept from them (M. Hook, personal communication, September 6, 2004).
Data Analysis The final phase of data analysis was the categorization of results from all data sources into a format that could be shared with women by caregivers to assist them in disclosure. Initial analysis was conducted independently by the researchers before shared-data analysis. Results were arranged in the following categories: (a) information to help women assess their readiness to disclose, (b) possible positive and negative aspects of disclosure to children, (c) preparations to complete before disclosure, and (d) strategies to use when disclosing based on the developmental age of the children, whether younger school-aged or adolescent. Following this categorization, the information was developed into a narrative directed to a woman contemplating disclosure of her HIV diagnosis to her children. The authors conceptualized that the narrative would be shared with women in a series of one-on-one or support group sessions with HIV care providers to provide ongoing support to women and their children throughout the process. As possible, women who had successfully disclosed to their children also needed to be involved as part of a disclosure support system. Results showed several critical points for women and children in the disclosure process where the availability of support from care providers might be necessary. The first point was before disclosure when women assessed their readiness to disclose and prepared to disclose. The second point was at the time of or shortly after disclosure to determine the nature of the disclosure process for women and children and whether or not further support was needed by the women or their children. The third critical point was several weeks or months after disclosure to determine how the women and children were adjusting to the disclosure. Depending on a child’s reactions to disclosure, ongoing periodic follow-up could be necessary. To facilitate sharing the disclosure information with women, both in person and in a format they could keep for future reference,
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it was determined that the narrative would be developed into a printed brochure.
Brochure Development At this point in the project, the primary researcher left Texas Woman’s University and relocated to Kennesaw State University, north of Atlanta, Georgia. Internal review board approval for continuation of the project was received from Kennesaw State University. The director of health research and a visual arts faculty member, both of whom had expertise in HIV research as well as in brochure development, were consulted about relevance and clarity of content and for recommendations regarding formatting of the narrative into a brochure. The narrative was also submitted for reading level assessment and rewritten to reflect a seventh-grade or lower reading level. The brochure was arranged into a four-column format and printed front and back. When folded, the user encountered the information within the brochure in logical order, beginning with assessment of readiness to disclose and progressing through strategies for disclosure. The brochure contained essential information for HIV-infected women and their care providers (see Table 1). Copies of the printed brochure were sent to the ASO in north Texas where the project began. Positive feedback was received from care providers in Texas about the thoroughness of the brochure’s content and practicality of its use. Care providers agreed to share feedback with the researcher when the brochure was used with HIV-infected women. ASOs within metropolitan Atlanta were also contacted and asked if they served HIV-infected women with children and whether they would be interested in using the brochure. There are large numbers of ASOs within metro Atlanta, and many do not serve women or they have small or infrequent populations of nondisclosing women. Brochures were taken to several ASOs in Atlanta that served women, and positive feedback was received about the comprehensiveness of the content and its potential benefit to women clients. Privacy issues made the ASOs reluctant to allow the researcher to contact women who were given the brochure by care providers, so it was not possible to obtain feedback about the women’s experiences using the brochure. One agency director arranged for the
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researcher to meet with a woman who had been diagnosed for 10 years and was seriously considering disclosing to her 8- and 18-year-old sons. When the woman read the brochure, she affirmed that the issues presented were those she had considered often in her struggle to get to the place of disclosing her diagnosis to her children. Conclusions The original phenomenological methodology, coupled with the combined data source method, worked well to gather the comprehensive knowledge base needed to develop the disclosure intervention. Data from the 8 HIV-infected study participants affirmed previously collected data regarding women’s struggles with disclosure. Triangulation of data from different sources showed data saturation and data overlap and affirmed both the process and the product of the project. Other processes that affirmed the trustworthiness of the process and product (Guba & Lincoln, 1989) were purposive sampling, independent data analysis by two researchers that showed commonality, and positive feedback from research experts and HIV care providers that the information captured HIV-infected women’s struggles with disclosure to children and provided the knowledge needed about the disclosure process. Brochure development required consultation and guidance from individuals with expertise in that area. Both the health research director and the visual arts faculty member who were consulted had expertise in HIV research as well as brochure development and met this function for the project. Positive feedback about the usefulness of the brochure format and clarity and the comprehensiveness of its content were also received from care providers in ASOs in Texas and Atlanta The intervention developed assumes the position that disclosure of a woman’s HIV diagnosis to her children is a good thing. Many women recognize that they should tell their children, but they are unsure how to go about the disclosure process and fear their children’s reactions. HIV care providers advocate women’s disclosure of the diagnosis to children early in the diagnosis, but they lack clear direction as to how women should go about making the disclosure happen. This intervention, built from knowledge
468 JANAC Vol. 19, No. 6, November/December 2008 Table 1.
Overview of Information in the Disclosure to Children Brochure
Brochure Section
Examples of Information in the Section
General information about disclosure
Telling your children about your HIV infection can be difficult for mothers. It is believed that keeping HIV a secret in the family causes mothers a lot of stress.
Questions to help you decide if you are ready to tell your children your HIV status
If you answer ‘‘yes’’ to the following questions you are probably ready to tell. Have you accepted your diagnosis? Do you think you can talk about your HIV in a calm, normal way, without feeling ashamed? Do you think you can let your children know it is OK to ask you questions any time about the disease? If you answer ‘‘yes’’ to one of the following three questions you probably are NOT ready to tell. Are you still angry, depressed, or ashamed about your diagnosis? Are you drinking or using drugs now? Are there other family problems going on now?
Good things about telling your children
Not keeping secrets in a family can be good for everyone and can help reduce stress. Telling your children may help lessen the stigma and shame that comes with HIV. Telling your children may make you feel closer to them and lead to a better, more honest relationship with them.
Bad things about telling your children
They may have anger, sadness, and depression about your disease. They may act up or misbehave to get more of your attention, however.. Acceptance grows over time, and any bad behavior your children express will get better!
Before you tell
Write down what you want to say or practice saying it so you will feel more comfortable. Decide who you can and cannot talk to about your diagnosis.
When you tell
You may want to begin by asking your children if they have heard about HIV. If yes, ask what have they heard or what they know.
Telling school-aged children (6 to 12 years)
School-aged children do not think like grownups but they can piece things together to understand a problem, such as their mother’s HIV. Don’t use medical terms. Keep answers to their questions very simple and positive.
Telling teenaged children
Although teenagers are learning to think like grownups, they are not grown up yet. Be prepared for your teenager to think only about how the disease will affect him or her personally.
NOTE: The complete brochure can be accessed at http://www.kennesaw.edu/col_hhs/files/Brochure.html
gained from the experiences of HIV-infected women with children, HIV care providers, an expert in the psychology of mothering, and literature regarding disclosure of sensitive information to children, has the potential to (a) empower women with the notion that the knowledge and strength they need to disclose to their children resides within them (O’Sullivan Burchard, 2005), (b) strengthen and enhance maternal-child bonds that will better the lives of women and their children (M. Hook, personal communication, September 6, 2004), (c) diminish the isolation and burden women experience with a diagnosis of HIV (Nelms, 2005), (d) decrease the stigma that
continues to pervade the HIV experience (M. Hook, personal communication, September 6, 2004; Nelms, 2005; Sandelowski et al., 2004), and (e) strengthen supportive partnerships between HIV-infected women, their children, and HIV care providers (O’Sullivan Burchard, 2005).
Limitations Although the HIV-infected women and HIV care providers who participated in this study were limited to one area of the country, their experiences were confirmed by the body of disclosure literature and
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general expertise regarding the psychology of mothering. The brochure and intervention were developed with the range of HIV-infected mothers in mind. In addition, until the brochure and intervention are used widely and systematically evaluated by HIVinfected women, their children, and HIV care providers, their efficacy cannot be judged adequately.
Clinical Considerations Keeping secrets in a family, such as a woman’s diagnosis of HIV, causes women added stress and limits both closeness to their children and the support and comfort their children could provide them. HIV-infected women often need directions as well as ongoing help and support with the difficult and distressing task of disclosing the diagnosis to their children. Maternal and child factors both need to be considered regarding disclosure of the mother’s diagnosis of HIV to her children. Education, support, and encouragement from HIV-care nurses can benefit women and children in the disclosure process. HIV-infected women need to be empowered to believe they have the best knowledge of themselves and their family and will know the best time to disclose to their children.
Acknowledgments This research was supported by funds from Sigma Theta Tau/Association of Nurses in AIDS Care Grant, American Nurses Foundation, Hyundai Motor America Grant ID #2004114, and Texas Woman’s University Research Enhancement Program.
References Armistead, L., Tannenbaum, L., Forehand, R., Morse, E., & Morse, P. (2001). Disclosing HIV status: Are mothers telling their children? Journal of Pediatric Psychology, 26, 11-20. Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A., & Stein, A. (2000). Qualitative interview study of communication be-
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tween parents and children about maternal breast cancer. British Medical Journal, 321, 479-482. Black, B., & Miles, M. (2002). Calculating the risks and benefits of disclosure in African American women who have HIV. Journal of Obstetric Gynecologic, and Neonatal Nursing, 31, 688-697. Guba, E., & Lincoln, Y. (1989). Fourth generation evaluation. Newbury Park, NJ: Sage Publications. Lee, M. B., & Rotheram-Borus, M. J. (2002). Parents’ disclosure of HIV to their children. AIDS, 16, 2201-2207. Murphy, D. A., Roberts, K. J., & Hoffman, D. (2003). Regrets and advice from mothers who have disclosed their HIV1 serostatus to their young children. Journal of Child and Family Studies, 12, 307-318. Nelms, T. (2005). Burden: The phenomenon of mothering with HIV. Journal of the Association of Nurses in AIDS Care, 16, 3-13. O’Sullivan Burchard, D. (2005). Ethos, ethics, and endeavors: New horizons in family nursing. Journal of Family Nursing, 11, 354-370. Parents of Kids with Infectious Diseases. (2005). Disclosing to our children: What the HIV experience has taught us. Retrieved October 28, 2005, from http://www.pkids.org/ fam_disclosing_kids.php Sandelowski, M., Lambe, C., & Barroso, J. (2004). Stigma in HIV-positive women. Journal of Nursing Scholarship, 36, 122-128. Shaffer, A., Jones, D. J., Kotschick, B. A., Forehand, R., & the Family Health Project Research Group. (2001). Telling the children: Disclosure of maternal HIV infection and its effects on child psychosocial adjustment. Journal of Child and Family Studies, 10, 301-313. Sheckter, L. (2002). How do you tell the kids? The challenges of disclosing HIV to children. Living18-10, March-April. Vallerand, A. H., Hough, E., Pittiglio, L., & Marvicsin, D. (2005). The process of disclosing HIV serostatus between HIV-positive mothers and their HIV-negative children. AIDS Patient Care and STDs, 19, 100-109.
Disclosing a diagnosis of HIV to their children is one of the most important yet most difficult issues for HIV-infected women (Murphy, Roberts, & Hoffman, 2003; Nelms, 2005; Sandelowski, Lambe, & Barroso, 2004; Sheckter, 2002). Results from phenomenological research regarding mothering issues experienced by HIV-infected women with children showed that a diagnosis of HIV presented a number of burdens to these women (Nelms, 2005). One of the burdens described by the women was the struggle
of whether or not to disclose the diagnosis to their children. Of the 16 women interviewed in that study, 11 had purposefully not revealed their HIV status to their children. Although some said they wanted to tell their children or thought they should tell, they said they were afraid of the children’s reactions and did not know how to disclose. The women reported that the main reasons for not disclosing the diagnosis to their children were the desire for their children to have a happy childhood and the stigma associated with HIV (Nelms, 2005). Given these results as well as literature that supported the notion that interventions were needed to support women in the distressing task of disclosing an HIV diagnosis to their children and to give them directions for how to do it (Black & Miles, 2002), further study was undertaken. The purpose of this study was to develop an intervention to facilitate and support women in disclosing a diagnosis of HIV to their children. Information to support the development of the intervention was gathered from several sources: (a) HIV-infected women who had both disclosed and not disclosed to their children were interviewed about their beliefs and experiences of disclosure; (b) counselors, case managers, and nurses in HIV care were interviewed about their experiences in working with women regarding the issue of disclosure to children; (c) Tommie P. Nelms, RN, PhD, is a professor at Kennesaw State University, WellStar College of Health and Human Services, WellStar School of Nursing, Kennesaw, Georgia. Vicki L. Zeigler, RN, PhD, is an assistant professor at Texas Woman’s University College of Nursing, Denton, Texas.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 19, No. 6, November/December 2008, 461-469 doi:10.1016/j.jana.2008.05.005 Copyright Ó 2008 Association of Nurses in AIDS Care
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literature was gathered regarding knowledge and best practices related to disclosure of sensitive information to others, especially children; and (d) an expert in the psychology of mothering was consulted about the topic. The outcome of the project was the development of a two-part intervention. One part of the intervention was a printed brochure with essential information about disclosure of a woman’s HIV diagnosis to her children. The second part was an ongoing support system that could be made available to women and their children during the disclosure process. The purpose of this report is to describe the research process that led to the development of the disclosure intervention and recommendations for its use.
Methods The methodological approach undergirding the original study was phenomenology. An overview of the lived experience of HIV-infected women’s mothering was explicated, part of which was their experience with disclosure of the diagnosis to their children. The current study sought to add depth to HIVinfected women’s experiences with disclosure to their children, and from that to develop an intervention to assist and support women with disclosure. Institutional review board approval for the study was obtained from Texas Woman’s University. Two groups who lived the experience, one directly and the other indirectly, were engaged in in-depth interviews about their experiences related to HIV disclosure. HIV-infected women who had disclosed their diagnosis to their children and others who had not disclosed were interviewed. HIV care nurses, case managers, and counselors were also interviewed about their experiences in working with women with regard to the issue of disclosure to their children. The knowledge and understandings gained from those two groups were combined with information gathered from the literature on disclosure of sensitive information to children as well as with input from an expert in the psychology of mothering to develop the intervention.
Data Collection and Results For ease of discussion, the study is described in phases according to the different data sources.
Results from the data gathered from the different sources are discussed with each phase to help the reader follow the development of the project.
Phase I In Phase I, 5 HIV-infected women with children were recruited for a study about experiences with disclosure to children and were interviewed by the primary researcher; an additional 3 women who had participated in the original study volunteered to be reinterviewed specifically about their experiences with disclosure. Data from these 8 women reaffirmed the experiences of disclosure to children that were gathered in the original study, and the researcher was able to determine that saturation had been reached and terminated further recruitment of HIV-infected women. Of the 8 women interviewed, 3 had disclosed to their children and 5 had not. Three of the women were White (1 had disclosed, 2 had not), 3 were African American (2 had disclosed, 1 had not), 1 was African (had not disclosed), and 1 was Hispanic (had not disclosed). All of the women were clients at a comprehensive AIDS Service Organization (ASO) in north Texas, where the primary researcher volunteered weekly. Clients seen at this ASO differed somewhat from HIV-infected mothers described in the literature by reflecting a higher socioeconomic status and less drug use. Most of these women worked to support themselves and their children or were supported by working husbands. Some had a history of illegal drug use, but none were using at the time of the interviews. All women signed voluntary informed consents before their interviews. The 1 White woman who had disclosed told her 8year-old daughter about the infection within weeks of learning her diagnosis, believing that being open about the diagnosis at such an early age would help the girl accept her mother’s condition. At the time of the interview, the daughter was 17 years old and had grown up knowing her mother was infected with HIV. The mother’s health had remained relatively good over the years, and she had never regretted her decision to disclose to the girl at such a young age. She said she and her daughter were very close and, although the mother was single, they had a strong family support system. The daughter had plans to
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attend medical school and become a doctor because of her mother’s diagnosis. One of the African American women who had disclosed had four children from two different marriages. Her three oldest children were grown, and she had informed them within hours to months of learning her diagnosis. Her youngest son, an adolescent who still lived at home, had just recently been told about his mother’s diagnosis. The mother had a number of health problems (lymphoma, diabetes, heart disease) in addition to HIV and believed the son should know the full extent of her health problems. She said her son had been very kind and concerned upon hearing her diagnosis, and she felt a great deal of support from him. The son’s father, an HIV-infected man who was in prison at the time of the interview, had pressured the woman not to disclose to anyone in their family. After disclosing to her son, the woman had attended a women’s retreat sponsored by the ASO. The education and encouragement she received and stories she heard from other HIV-infected women at the retreat regarding the benefits of disclosure also led her to disclose to two of her sisters. She was surprised at and grateful for the support and love she received from her sisters after she shared her diagnosis. The other African American woman who had disclosed told her five children and their children shortly after learning her diagnosis a number of years ago and continued to receive support and understanding from all of them. The Hispanic woman who had not disclosed to her two school-age daughters was seriously considering disclosing at the time of interview. She had recently completed an inpatient drug treatment program and remarried and was anxious to get her daughters home from living with their grandmother. At a women’s support group meeting attended by the primary researcher, this woman met the woman who disclosed to her 8-year-old daughter and was encouraged that she too could disclose to her daughters who were 8 and 9 years old. Not long after the interview, however, the woman began using drugs again and was lost to contact by members of the clinic staff. It is unlikely she disclosed her diagnosis to her children. The African woman in the study was adamant that she would never disclose to her three children (2 school age and 1 college age), ‘‘I’m not ready for my kids to be made fun of in this way.. It’s my fault.it’s
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not their fault, and I’m not going to mess up their lives because of a mistake that I did.’’ She believed there was far more to her as a mother and her mothering than her HIV status, and she was trying to live her life in such a way that if her children ever found out her diagnosis, they would understand why she had not disclosed to them by the way she had mothered them. This woman had been diagnosed for 1 year and had been in good health. Only her husband and his aunt knew the diagnosis, and the woman planned to keep the secret from all other family members, including her mother. One of the White women who had not disclosed had been diagnosed for 15 years. Her two children had been school age at the time of her diagnosis but were grown at the time of the interview. This woman had decided from the moment she learned her diagnosis that she would not disclose to her children or parents, and she had maintained that resolve in spite of encouragement from ASO nurses, case managers, and counselors. Although at the time of the interview the woman had been having more health problems related to her HIV status, she remained firm in her resolve not to disclose, fearing discrimination from her ‘‘very religious’’ family and the possibility she would be forbidden to see her grandchildren. The other White woman who had not disclosed had developed lymphoma since her first interview, and although she had disclosed the diagnosis of lymphoma to her parents and teenaged son, she still could not bring herself to disclose her HIV diagnosis. She was grateful for the love and support she had received from her family related to her lymphoma and said that at times she wanted to disclose her HIV status to her family and had come close to disclosing, but she just did not ‘‘have the courage.’’ The woman’s ex-husband, her son’s father, had died of AIDS when the boy was young, and she did not want him to fear she might also die of HIV. The African American woman who had not disclosed her diagnosis to her three school-aged children let them find out by default. She frequently took her children with her to the ASO clinic for appointments and to ASO-sponsored events such as Thanksgiving dinners and Christmas parties. The terms HIV and AIDS were used at the functions and on written materials. Because the children could read, the woman assumed they knew her diagnosis, although she had
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never spoken of it with any of them, nor had they mentioned it to her. The ASO counselor said she had offered to facilitate disclosure to the woman’s children many times, but the woman always refused. On one occasion the woman’s young daughter had witnessed her mother being taken from the clinic on a stretcher, put into an ambulance, and taken to the hospital because of a low hemoglobin level. Her uncle had to be called to take the child home, and still the mother said the incident was never discussed with the child. The researcher witnessed this incident and heard the child ask, ‘‘Is my mommy going to die?’’ as her mother was wheeled out. Interviews were transcribed verbatim and analysis revealed four patterns of disclosure: (a) some women decided early on that they would not disclose the diagnosis to their children and they were not swayed from that decision regardless of encouragement to do otherwise by HIV care providers or other HIVinfected mothers; (b) some women disclosed to their children soon after the diagnosis and were very satisfied with the decision and the support they received; (c) some women were influenced to disclose to children and other family members after hearing the stories of women who had successfully disclosed to their children and by discussions and dialogues about disclosure at support group activities sponsored by ASOs; and (d) some women did not verbally disclose to their children but allowed the diagnosis to be disclosed by exposing the children to the care and services the mother received at the ASO. Although there was diversity among the women interviewed, their experiences of disclosing and not disclosing were quite similar. Phase II In Phase II, interviews were conducted by the primary researcher with 6 HIV care providers (2 nurses, 2 counselors, and 2 case managers) in two different ASOs in north Texas. All care providers signed voluntary informed consents before the interview. The care providers said they supported women in the process of disclosure to children and other family members, although they agreed it was the mother’s and family’s decision and they did not advocate disclosure until the mother was comfortable with her diagnosis and the process. Care providers also agreed
that the mother’s reaction to her HIV diagnosis had a great deal to do with children’s and family’s reaction to disclosure of the diagnosis. If the mother was calm and matter-of-fact about the diagnosis, children would be also, but if the mother was emotional, crying, and fearful, children were likely to react that way too. All care providers who saw women at scheduled visits agreed that issues of disclosure were a topic of assessment and discussion at each meeting and that the women were to be assured that disclosure could be discussed at any time. All of the care providers who were interviewed agreed that disclosure to children and trusted family members was better than not disclosing, as long as it was the woman’s decision. The care workers made this philosophy known to their women clients. One counselor said she had never experienced a bad result from a mother’s disclosure of HIV to her children. She had, however, seen children, especially teenagers, who were angry at learning their mother had HIV, especially if the mother had died without sharing the information. Another counselor from an agency serving HIVaffected families in a large metropolitan area in north Texas said it was her agency’s philosophy to neither encourage nor discourage disclosure but rather to support the mother in whatever decision she made and to present a balance of potential advantages and disadvantages related to disclosure to children. She said each family case was different and, although she had seen disclosure to children bring families together, she had also seen it ‘‘set families apart.’’ When asked what negative reactions to disclosure she had seen, she noted children acting out in fear and anger with behavior problems such as skipping school, not listening to parents, and participating in risky behaviors, in addition to revealing the mother’s diagnosis to their classmates at school. This counselor said that when she educated HIV care providers about disclosure, she cautioned them to remember that the mother always knows her family better than the provider. Providers only saw the mother and/or family for an hour or two at a time and had limited information about family behaviors and family fears. Her final statement and her basic philosophy about disclosure to children was, ‘‘The best time to disclose is when the family is ready.’’ All care providers saw the issue of disclosure, for both disclosing mothers and nondisclosers, as an
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ongoing issue requiring support, communication, listening, education, and encouragement and said they offered to support women in disclosing to children in whatever ways women desired. Participants in this study offered women the following: (a) to sit with the woman and her children while the mother disclosed; (b) to tell the children the mother’s diagnosis while the mother was present or absent, depending on her preference; (c) to be available by telephone or in person when the mother disclosed to children; or (d) to meet with the children at a time after the disclosure as needed depending on their reactions and questions. The care providers believed nondisclosure to children was a stressor for HIV-infected mothers that could be avoided. Nondisclosure forced women to work to keep secrets they would not otherwise need to keep. One counselor noted that being ‘‘care givers’’ often caused women to ignore their own health needs while attending to family needs. She noted that this was not a good trait if a woman needed to focus on her own health care needs. Phase III Phase III of the study was a literature review. Literature in nursing, medicine, health care, sociology, social science, psychology, and psychiatry regarding best practices for disclosure of sensitive information to others, especially children, was reviewed. The following databases were searched for studies published between 2000 and 2005: CINAHL (Cumulative Index to Nursing and Allied Health Literature), Medline, PsychInfo, Cochrane Library, and the Psychology and Behavioral Sciences Collection. Search terms included disclosure, child, family health, mother, HIV, and serious illness. In all, 21 articles were found that specifically addressed disclosure of serious illness to children, including cancer, HIV, hemophilia, and death of a parent. Sources were reviewed on the topics of child growth and development, including cognitive and psychosocial development, as well as children’s conceptions of health and illness. The following paragraphs discuss the themes that emerged from the review of the literature. Ill parents disclosed sooner than healthier parents, and older children were disclosed to more often than younger children (Armistead, Tannenbaum,
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Forehand, Morse, & Morse, 2001). Other than these two factors, there seemed to be no difference between women who disclosed and those who did not. HIVinfected women disclosed more often than infected men, and daughters were disclosed to more often than sons, although over time this difference was minimal (Armistead et al., 2001). The majority of mothers who disclosed had no regrets about disclosure (Murphy et al., 2003). Given enough time, the majority of parents with HIV disclosed the diagnosis to their children. Therefore, according to some researchers, an intervention to foster and support disclosure to children would simply speed up a process that would likely happen naturally, in the United States at least (Lee & Rotheram-Borus, 2002). Studies reported that mothers needed to be ‘‘ready’’ to disclose to their children. Disclosure was best when the mother had dealt with her own emotions over the diagnosis before disclosing to children (Lee & Rotheram-Borus, 2002; Murphy et al., 2003). Mothers needed to plan what they wanted to say to their children before the disclosure discussion. They needed to educate themselves about HIV and have age-appropriate materials related to the disease available for the disclosure. Disclosure was more effective if it occurred when the mother was in a good frame of mind and feeling healthy and strong and not when she was ill, in a bad mood, angry, using drugs or alcohol, depressed, or when there were other family crises. Studies showed that disclosure needed to be performed in a calm and natural manner without shame to make the situation less stressful for children (Murphy et al., 2003). According to children who had been through the process of disclosure, parents needed to be honest, hopeful, positive, and prepared to answer children’s questions (Sheckter, 2002). Disclosing when children were 6 to 10 years old was best (Armistead et al., 2001; Parents of Kids with Infectious Diseases, 2005). Children needed to be encouraged to ask questions and told they could continue to ask any questions they had in the future (Vallerand, Hough, Pittiglio, & Marvicsin, 2005). Children needed emotional support and reassurance during and after disclosure, and additional support and education should be provided for children after the disclosure process, such as by a health care professional or counselor (Murphy et al., 2003). Mothers could also introduce their children to other women
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who have been infected with HIV for a number of years to enable the children to see the potential for long-term good health with the disease. Disclosure needed to take into account the child’s age, the family’s communication style, the parent’s beliefs regarding the illness, and the parent’s capacity to cope with children’s reactions and feelings (Barnes et al., 2000). Disclosure needed to be individualized and based on the child’s cognitive ability, developmental stage, and cultural sensitivities (Barnes et al., 2000). Given that mothers and children often interpreted disclosure consequences on child functioning very differently, interventions also needed to take into account the child’s conception of illness (Shaffer, Jones, Kotschick, Forehand, & the Family Health Project Research Group, 2001). Family nursing practice has recommended that nurses foster the knowledge and power that already reside within families through caring relationships that enhance family health and family functioning (O’Sullivan Burchard, 2005). Women therefore need to be empowered and reminded that they know their children and family situations best and thereby know best when, and if, to disclose to their children. Phase IV Phase IV of the project involved consultation with an expert in the psychology of mothering. At the time, the expert was a psychology faculty member at Texas Woman’s University and taught courses in the psychology of mothering. In discussions with the primary researcher, she expressed her expert opinion that keeping secrets within a family, such as a mother hiding an HIV diagnosis from her children, was an added stressor to the woman’s already stressful life, whereas disclosure of the secret could foster a closer, more open, and honest relationship between the woman and her children. Not disclosing to children also perpetuated the stigma associated with HIV, but early disclosure allowed a woman more time to educate, process with, and comfort her children while she was still in good health. Children often give HIV-infected women a reason to work to maintain their health; they also serve as a source of support and comfort. When and if the children discovered that their mother had kept such an important secret from
them, they could feel angry and betrayed and wonder what other secrets their mother had kept from them (M. Hook, personal communication, September 6, 2004).
Data Analysis The final phase of data analysis was the categorization of results from all data sources into a format that could be shared with women by caregivers to assist them in disclosure. Initial analysis was conducted independently by the researchers before shared-data analysis. Results were arranged in the following categories: (a) information to help women assess their readiness to disclose, (b) possible positive and negative aspects of disclosure to children, (c) preparations to complete before disclosure, and (d) strategies to use when disclosing based on the developmental age of the children, whether younger school-aged or adolescent. Following this categorization, the information was developed into a narrative directed to a woman contemplating disclosure of her HIV diagnosis to her children. The authors conceptualized that the narrative would be shared with women in a series of one-on-one or support group sessions with HIV care providers to provide ongoing support to women and their children throughout the process. As possible, women who had successfully disclosed to their children also needed to be involved as part of a disclosure support system. Results showed several critical points for women and children in the disclosure process where the availability of support from care providers might be necessary. The first point was before disclosure when women assessed their readiness to disclose and prepared to disclose. The second point was at the time of or shortly after disclosure to determine the nature of the disclosure process for women and children and whether or not further support was needed by the women or their children. The third critical point was several weeks or months after disclosure to determine how the women and children were adjusting to the disclosure. Depending on a child’s reactions to disclosure, ongoing periodic follow-up could be necessary. To facilitate sharing the disclosure information with women, both in person and in a format they could keep for future reference,
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it was determined that the narrative would be developed into a printed brochure.
Brochure Development At this point in the project, the primary researcher left Texas Woman’s University and relocated to Kennesaw State University, north of Atlanta, Georgia. Internal review board approval for continuation of the project was received from Kennesaw State University. The director of health research and a visual arts faculty member, both of whom had expertise in HIV research as well as in brochure development, were consulted about relevance and clarity of content and for recommendations regarding formatting of the narrative into a brochure. The narrative was also submitted for reading level assessment and rewritten to reflect a seventh-grade or lower reading level. The brochure was arranged into a four-column format and printed front and back. When folded, the user encountered the information within the brochure in logical order, beginning with assessment of readiness to disclose and progressing through strategies for disclosure. The brochure contained essential information for HIV-infected women and their care providers (see Table 1). Copies of the printed brochure were sent to the ASO in north Texas where the project began. Positive feedback was received from care providers in Texas about the thoroughness of the brochure’s content and practicality of its use. Care providers agreed to share feedback with the researcher when the brochure was used with HIV-infected women. ASOs within metropolitan Atlanta were also contacted and asked if they served HIV-infected women with children and whether they would be interested in using the brochure. There are large numbers of ASOs within metro Atlanta, and many do not serve women or they have small or infrequent populations of nondisclosing women. Brochures were taken to several ASOs in Atlanta that served women, and positive feedback was received about the comprehensiveness of the content and its potential benefit to women clients. Privacy issues made the ASOs reluctant to allow the researcher to contact women who were given the brochure by care providers, so it was not possible to obtain feedback about the women’s experiences using the brochure. One agency director arranged for the
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researcher to meet with a woman who had been diagnosed for 10 years and was seriously considering disclosing to her 8- and 18-year-old sons. When the woman read the brochure, she affirmed that the issues presented were those she had considered often in her struggle to get to the place of disclosing her diagnosis to her children. Conclusions The original phenomenological methodology, coupled with the combined data source method, worked well to gather the comprehensive knowledge base needed to develop the disclosure intervention. Data from the 8 HIV-infected study participants affirmed previously collected data regarding women’s struggles with disclosure. Triangulation of data from different sources showed data saturation and data overlap and affirmed both the process and the product of the project. Other processes that affirmed the trustworthiness of the process and product (Guba & Lincoln, 1989) were purposive sampling, independent data analysis by two researchers that showed commonality, and positive feedback from research experts and HIV care providers that the information captured HIV-infected women’s struggles with disclosure to children and provided the knowledge needed about the disclosure process. Brochure development required consultation and guidance from individuals with expertise in that area. Both the health research director and the visual arts faculty member who were consulted had expertise in HIV research as well as brochure development and met this function for the project. Positive feedback about the usefulness of the brochure format and clarity and the comprehensiveness of its content were also received from care providers in ASOs in Texas and Atlanta The intervention developed assumes the position that disclosure of a woman’s HIV diagnosis to her children is a good thing. Many women recognize that they should tell their children, but they are unsure how to go about the disclosure process and fear their children’s reactions. HIV care providers advocate women’s disclosure of the diagnosis to children early in the diagnosis, but they lack clear direction as to how women should go about making the disclosure happen. This intervention, built from knowledge
468 JANAC Vol. 19, No. 6, November/December 2008 Table 1.
Overview of Information in the Disclosure to Children Brochure
Brochure Section
Examples of Information in the Section
General information about disclosure
Telling your children about your HIV infection can be difficult for mothers. It is believed that keeping HIV a secret in the family causes mothers a lot of stress.
Questions to help you decide if you are ready to tell your children your HIV status
If you answer ‘‘yes’’ to the following questions you are probably ready to tell. Have you accepted your diagnosis? Do you think you can talk about your HIV in a calm, normal way, without feeling ashamed? Do you think you can let your children know it is OK to ask you questions any time about the disease? If you answer ‘‘yes’’ to one of the following three questions you probably are NOT ready to tell. Are you still angry, depressed, or ashamed about your diagnosis? Are you drinking or using drugs now? Are there other family problems going on now?
Good things about telling your children
Not keeping secrets in a family can be good for everyone and can help reduce stress. Telling your children may help lessen the stigma and shame that comes with HIV. Telling your children may make you feel closer to them and lead to a better, more honest relationship with them.
Bad things about telling your children
They may have anger, sadness, and depression about your disease. They may act up or misbehave to get more of your attention, however.. Acceptance grows over time, and any bad behavior your children express will get better!
Before you tell
Write down what you want to say or practice saying it so you will feel more comfortable. Decide who you can and cannot talk to about your diagnosis.
When you tell
You may want to begin by asking your children if they have heard about HIV. If yes, ask what have they heard or what they know.
Telling school-aged children (6 to 12 years)
School-aged children do not think like grownups but they can piece things together to understand a problem, such as their mother’s HIV. Don’t use medical terms. Keep answers to their questions very simple and positive.
Telling teenaged children
Although teenagers are learning to think like grownups, they are not grown up yet. Be prepared for your teenager to think only about how the disease will affect him or her personally.
NOTE: The complete brochure can be accessed at http://www.kennesaw.edu/col_hhs/files/Brochure.html
gained from the experiences of HIV-infected women with children, HIV care providers, an expert in the psychology of mothering, and literature regarding disclosure of sensitive information to children, has the potential to (a) empower women with the notion that the knowledge and strength they need to disclose to their children resides within them (O’Sullivan Burchard, 2005), (b) strengthen and enhance maternal-child bonds that will better the lives of women and their children (M. Hook, personal communication, September 6, 2004), (c) diminish the isolation and burden women experience with a diagnosis of HIV (Nelms, 2005), (d) decrease the stigma that
continues to pervade the HIV experience (M. Hook, personal communication, September 6, 2004; Nelms, 2005; Sandelowski et al., 2004), and (e) strengthen supportive partnerships between HIV-infected women, their children, and HIV care providers (O’Sullivan Burchard, 2005).
Limitations Although the HIV-infected women and HIV care providers who participated in this study were limited to one area of the country, their experiences were confirmed by the body of disclosure literature and
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general expertise regarding the psychology of mothering. The brochure and intervention were developed with the range of HIV-infected mothers in mind. In addition, until the brochure and intervention are used widely and systematically evaluated by HIVinfected women, their children, and HIV care providers, their efficacy cannot be judged adequately.
Clinical Considerations Keeping secrets in a family, such as a woman’s diagnosis of HIV, causes women added stress and limits both closeness to their children and the support and comfort their children could provide them. HIV-infected women often need directions as well as ongoing help and support with the difficult and distressing task of disclosing the diagnosis to their children. Maternal and child factors both need to be considered regarding disclosure of the mother’s diagnosis of HIV to her children. Education, support, and encouragement from HIV-care nurses can benefit women and children in the disclosure process. HIV-infected women need to be empowered to believe they have the best knowledge of themselves and their family and will know the best time to disclose to their children.
Acknowledgments This research was supported by funds from Sigma Theta Tau/Association of Nurses in AIDS Care Grant, American Nurses Foundation, Hyundai Motor America Grant ID #2004114, and Texas Woman’s University Research Enhancement Program.
References Armistead, L., Tannenbaum, L., Forehand, R., Morse, E., & Morse, P. (2001). Disclosing HIV status: Are mothers telling their children? Journal of Pediatric Psychology, 26, 11-20. Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A., & Stein, A. (2000). Qualitative interview study of communication be-
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tween parents and children about maternal breast cancer. British Medical Journal, 321, 479-482. Black, B., & Miles, M. (2002). Calculating the risks and benefits of disclosure in African American women who have HIV. Journal of Obstetric Gynecologic, and Neonatal Nursing, 31, 688-697. Guba, E., & Lincoln, Y. (1989). Fourth generation evaluation. Newbury Park, NJ: Sage Publications. Lee, M. B., & Rotheram-Borus, M. J. (2002). Parents’ disclosure of HIV to their children. AIDS, 16, 2201-2207. Murphy, D. A., Roberts, K. J., & Hoffman, D. (2003). Regrets and advice from mothers who have disclosed their HIV1 serostatus to their young children. Journal of Child and Family Studies, 12, 307-318. Nelms, T. (2005). Burden: The phenomenon of mothering with HIV. Journal of the Association of Nurses in AIDS Care, 16, 3-13. O’Sullivan Burchard, D. (2005). Ethos, ethics, and endeavors: New horizons in family nursing. Journal of Family Nursing, 11, 354-370. Parents of Kids with Infectious Diseases. (2005). Disclosing to our children: What the HIV experience has taught us. Retrieved October 28, 2005, from http://www.pkids.org/ fam_disclosing_kids.php Sandelowski, M., Lambe, C., & Barroso, J. (2004). Stigma in HIV-positive women. Journal of Nursing Scholarship, 36, 122-128. Shaffer, A., Jones, D. J., Kotschick, B. A., Forehand, R., & the Family Health Project Research Group. (2001). Telling the children: Disclosure of maternal HIV infection and its effects on child psychosocial adjustment. Journal of Child and Family Studies, 10, 301-313. Sheckter, L. (2002). How do you tell the kids? The challenges of disclosing HIV to children. Living18-10, March-April. Vallerand, A. H., Hough, E., Pittiglio, L., & Marvicsin, D. (2005). The process of disclosing HIV serostatus between HIV-positive mothers and their HIV-negative children. AIDS Patient Care and STDs, 19, 100-109.