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Parents Sharing Information With Their Children About Genetic Conditions

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Parents Sharing Information With Their Children About Genetic Conditions
Agatha M. Gallo, PhD, APN, CPNP, FAAN, Denise Angst, DNSc, RN, Kathleen A. Knafl, PhD, FAAN, Emily Hadley, MS, RN, & Carrol Smith, PhD(c), RN
ABSTRACT Introduction: Nurses are in an ideal situation to help families share information with their children about genetic conditions. While many factors contribute to this decision making, little is known about how parents decide when and how to convey this information to their children. The purpose of this qualitative analysis was to examine parents’ beliefs and strategies related to sharing information about a genetic condition with their affected and unaffected children. Method: One hundred thirty-nine parents participated in this study. Narrative analysis and fundamental qualitative description were employed to identify approaches and strategies that parents used to share information with their children.

Results: Parents’ information sharing approaches and strategies were grounded in the goal of promoting the child’s adaptation to the genetic condition. Parents shared information based on their assessment of the child’s developmental readiness and interest and described information sharing as an unfolding process that continued throughout childhood. Discussion: The approaches and strategies contribute to understanding the processes associated with information sharing between parents and their children and between health care professionals and parents. J Pediatr Health Care. (2005) 19, 267-275.

Agatha M. Gallo is Professor, Department of Maternal Child Nursing, College of Nursing, University of Illinois, Chicago, Illinois. Denise Angst is Director, Advocate Center for Pediatric Research, Advocate Health Care, Park Ridge, Illinois. Kathleen A. Knafl is Elisabeth N. Gray Distinguished Professor and Senior Associate Dean for Research and Faculty Affairs, School of Nursing, Oregon Health and Sciences University, Portland, Oregon. Emily Hadley is Project Director, University of Illinois, Chicago, Illinois. Carrol Smith is Research Assistant, University of Illinois, Chicago, Illinois. The project described was supported by Grant No. HG02036 from the National Human Genome Research Institute (NHGRI), Ethical Legal and Social Implications (ELSI) Research Program. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NHGRI. Reprint requests: Agatha M. Gallo, PhD, APN, CPNP, FAAN, Department of Maternal Child Nursing, College of Nursing, University of Illinois at Chicago, 845 S Damen Ave (m/c 802), Chicago, IL 60612; e-mail: agallo@uic.edu. 0891-5245/$30.00 Copyright © 2005 by the National Association of Pediatric Nurse Practitioners. doi:10.1016/j.pedhc.2005.05.008

Nurses are in an ideal situation to help families share information with their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about when and how to convey information to their children. While it is assumed that many factors (ie, family rules, boundaries, history, culture, personal beliefs, attitudes, and values) all contribute to this decision making (McCubbin, Thompson, & McCubbin, 1996), little is known about how parents decide when and how to convey this information to their children. The purpose of this qualitative analysis, which is part of a larger ongoing study identifying family information management styles in a variety of childhood genetic conditions, was to examine parents’ beliefs and strategies related to sharing information about a genetic condition with their affected and unaffected children.

LITERATURE REVIEW Disclosure of a Diagnosis Past research on sharing information has highlighted disclosure of a chronic illness to a child (American Academy of Pediatrics [AAP], 1999; Mellins & Ehrhardt, 1994; Nehring, Lashley, & Malm, 2000; Thorne, Newell, & Peckhan,
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2000; Waugh, 2003). Disclosure guidelines have emphasized the importance of taking the child’s level of cognitive development and psychosocial maturity into account (Bibace & Walsh, 1980; Woodard & Pamies, 1992). In general, younger children should be given simple explanations about the condition and the everyday tasks of management. Older, more mature children and adolescents should be more fully informed of the nature and consequences of their condition and their roles in caring for themselves (AAP, 1999). Some reasons given by parents of children with serious conditions

disclose (Wiener, Battles, Heilman, Sigelman, & Pizzo, 1996). The outcomes of disclosure are not well known in the variety of childhood chronic illnesses because studies are not available. However, studies in children with cancer and HIV/ AIDS have found that children exhibited better coping skills and fewer psychosocial problems when information about the condition and consequences were disclosed (Katz & Jay, 1984; Lipson, 1993, 1994; Slavin, O’Malley, Koocher, & Foster, 1982; Spinetta & Maloney, 1978; Wiener et al., 1996).

Some reasons given by parents of children with serious conditions (eg, HIV/AIDS and cancers) for nondisclosure include concerns for the child’s emotional health and fears that the knowledge will negatively affect a child’s will to live.
(e.g., HIV/AIDS and cancers) for nondisclosure include concerns for the child’s emotional health and fears that the knowledge will negatively affect a child’s will to live. For parents of children with HIV/AIDS, reasons for nondisclosure include a parent’s sense of guilt about transmitting the infection to the child, potential child anger for parental transmission of the condition, and fear of inadvertent disclosure to others. Disclosing to others may lead to stigma, discrimination, or ostracism of the child or other family members. For some parents who also have the condition, disclosure may be difficult for them as they cope with their own condition (AAP, 1999; Mellins & Ehrhardt, 1994; Nehring et al., 2000; Thorne et al., 2000; Waugh, 2003). Disease severity is also likely to influence disclosure because as the child gets sicker, there often is a greater need to
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Disclosure of Genetic Testing Results In recent years, concerns have arisen related to genetic carrier testing of children younger than 18 years. These concerns focus on the psychological or social harm of genetic information, the fact that minor children are not autonomous, and the potential inability of children to fully assess the potential risks and benefits of genetic information (McConkie-Rosell & Spiridigliozzi, 2004). Current guidelines recommend that carrier testing of children only be done when there is clear medical or psychosocial benefit to the child (American Society of Human Genetics/American College of Medical Genetics, 1995; National Society of Genetic Counselors, 1995; Report of the Working Party of the Clinical Genetics Society, 1994). Usually, medical benefits of testing are determined based on early diagnosis

and treatment resulting from newborn and early screening or genetic testing of children. Identification of the psychological benefits of genetic testing in children is more complicated and not well understood. There is little research on the consequences of testing in childhood and the long-term psychological effects of genetic information on children (Fanos, 1997; McConkie-Rosell & Spiridigliozzi, 2004; Ross & Moon, 2000). Because of the difficulty in determining psychological benefit, the focus of genetic carrier testing of children is on who has the right to make the decision (McConkieRosell et al., 1999) and whose right to autonomy is endangered: parent or child. Debates and discussions have focused on the potential concerns and benefits of genetic testing. Potential concerns include changed self-perceptions in the child, parents, and family; possible feelings of unworthiness and difficulties integrating with peers; stigma and discrimination; loss of confidentiality; prevention of autonomous decision making; and the right of the child not to know about the genetic condition (Clarke, 1998; Clarke & Flinter, 1996; Fanos & Johnson, 1995; Wertz, Fanos, & Reilly, 1994). Potential benefits of testing include helping children adjust to the information before they need to make choices about reproduction and marriage, enhancing communication, respecting an adolescent’s autonomy, and resolving parents’ concerns about carrier status (Elger & Harding, 2000; McConkie-Rosell et al., 1999; Michie & Marteau, 1996; Richards, 1998; Robertson & Sasvulescu, 2001). Sharing Genetic Information Within a Family Context Families are the context in which parents have rights and responsibilities to care for, nurture, and teach their children to love and develop into social beings (Donaldson, 1993; Nelson & NelJournal of Pediatric Health Care

son, 1995; Smith, 1993). Families are characterized by love, obligation, traditions, and goals; they are defined by the collectivity of the group, favoritism, and sharing of identity, history, and future (Boss, 1988; Day, 1995; Nelson & Nelson, 1995; White & Klein, 2002). Through this shared identity, families develop notions of what makes life good and give their members a sense of belonging and direction (McConkie-Rosell & Spiridigliozzi, 2004). In the context of genetic conditions, parents need to establish an environment that allows their children to grow, cope, and adjust to relevant genetic information as part of their roles in nurturing their children into social beings (McConkie-Rosell & Spiridigliozzi). Despite this prior work addressing disclosure of a diagnosis and genetic carrier testing results to children, little research has been conducted on parental preferences or the process that parents use to inform their children about the genetic condition or the possibility of inherited risk. The purpose of this qualitative analysis is to examine parents’ beliefs and strategies related to sharing information about a genetic condition with their children. The unique aspect of the present analysis is that parents were asked to discuss how they shared information with their children about the condition and its management and also about the genetic nature of the condition.

sity and the clinical sites approved the larger study. Drawing from the principles of naturalistic inquiry (Lincoln & Guba, 1985), and fundamental qualitative description (Sandelowski, 2000), we explored parents’ beliefs and strategies around sharing information with their children about genetic conditions. The present analysis focuses on how parents responded to specific interview questions that addressed information sharing with children: what parents told the child with the genetic condition and healthy siblings about the condition and how the condition is passed on in the family, how parents decided to tell their children about the condition, at what age the child should be told about the condition and its inheritance, and advice that parents received from health care professionals about sharing information with children. Sample The sample of 139 parents and primary caregivers were recruited from three clinical sites in Chicago and surrounding suburbs. The total sample consists of 86 families of children with various genetic conditions resulting from single gene mutations including phenylketonuria, sickle cell disease, cystic fibrosis, sickle cell disease, neurofibromatosis, hemophilia, thalassemia, Marfan syndrome, and Von Willebrand disease. These conditions were selected based on their known genetic inheritance patterns, varying modes of transmission, clinical features and incidence in ethnic groups, association with normal/ near normal cognitive functioning, and expected survival into adulthood. In selecting these genetic conditions, the goal was to capture the diversity and range in parents’ information sharing experiences. Inclusion criteria for the sample required that at least one parent participate and understand and speak English and that the target child with the genetic condition be school age, biological for at least one parent, the

oldest with a genetic condition in the family if more than one child is affected, and no more than 2 years in age for grade in school. No limitations were placed on the sample in regard to demographics such as ethnicity, socioeconomic status, or race. Measures and Data Collection Procedures The primary data collection measure was a 37-question semistructured interview guide developed for the larger study that contained specific questions for this analysis. The interview guide was adapted from a measure used by the authors in their prior studies of family response to chronic illness (Knafl, Breitmeyer, Gallo, & Zoeller, 1996). Insights from the literature on information management were considered in the guide’s development. The five questions from the guide used for this specific analysis include: What have you told/not told your child about the condition and how it is passed on in the family? What have you told/not told other children in the family? How did you decide this? Has anyone given you any advice about how to tell your children about how the condition is passed on in the family? At what age do you believe a child should be told about how the condition is passed on? The project director contacted parents regarding their interest in participating in the study, either through direct contact at the clinical site or after they had expressed interest after receiving a letter from the site’s clinic director. Once parents agreed to participate, project staff set up a convenient time and place for their interviews. After obtaining informed consent, semistructured interviews were conducted in the family’s home or in a quiet room at the university or clinical site. The project director, research assistant, principal investigator, or an advanced practice nurse interviewed all participants individually. Interviews were digiSeptember/October 2005 269

METHOD Study Design This analysis on how parents share information with their children is part of a larger data set from a study of 86 families that used a mixed methods design to expand and refine the family management style framework (Knafl & Deatrick, 2003) to include family information management (Gallo, Knafl, & Angst, 2001). The institutional review boards of the univerJournal of Pediatric Health Care

tally recorded and lasted from approximately 60 to 120 minutes. Each participant received $50 for the time and travel involved in this study. Data Analysis Digitally recorded interviews were transferred to a computer, transcribed verbatim, and processed using the Atlas.ti software (4.2 version) program designed to store and retrieve coded data (Muhr, 1997). The project director or a research assistant compared each transcript to the digital recording for content accuracy. The digital recordings were then deleted based on the project’s institutional review board approval. Members of the research team double-coded 98 transcripts (70%); the remaining 41 transcripts (30%) were single-coded by one member of the team. Case summaries and analysis matrices were then developed to compare within and across families (Miles & Huberman, 1994) and to identify the overall approach used by parents in sharing information with their children. FINDINGS Sample Characteristics All participants (N 139) were either parents or caregivers who were involved in the everyday management of children with various single gene conditions (see Table). For simplicity, the word “parent” is used throughout this manuscript to reflect both parent and caregiver participants. Four study participants (three aunts and one sister) were eliminated from this analysis because their responses were limited. The children with the genetic conditions were school-agers or adolescents at the time of the interview and were within 2 years of their regular classroom by age. The parents reflected a range of ages from 22 to 57 years (M 40.23 years) and varied educational backgrounds. More than half
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TABLE. Sample characteristics
Characteristics n %

Child’s condition Sickle cell disease Phenylketonuria Cystic fibrosis Neurofibromatosis Hemophilia Thalassemia Marfan syndrome Von Willebrand Parent’s education Grade school Some high school High/vocational school Some college College Some graduate school Graduate/professional Parent’s ethnicity Asian African-American/Black Hispanic or Latino White Mixed Other Annual family income Less than $10,000 $10,000—$19,999 $20,000—$29,999 $30,000—$49,999 $50,000—$74,999 $75,000—$99,999 $100,000 Parents’ religious preference Catholic Protestant Muslim Jewish No preference Other Age Parents (range: 22—57 years) Child with genetic condition (range: 3.7—15.9 years)

86 29 16 15 11 6 4 4 1 2 5 33 46 29 4 20 4 38 4 83 5 5 10 9 13 9 30 27 25 52 47 4 4 15 16 M 40.23 10.1

100% 33.7 18.6 17.4 12.8 7.0 4.7 4.7 1.2 1.4 3.6 23.8 33.1 20.9 2.9 14.4 2.9 27.3 2.9 59.7 3.6 3.6 7.2 6.5 9.4 6.5 28.8 19.4 18.0 37.7 38.8 2.9 2.9 10.8 11 SD 7.17 3.18

the sample was White (n 83; 59.7%), and most were either Protestant (38.8%) or Catholic (37.7%). The children with genetic conditions ranged in age from 3.7 years to 15.9 years; 45 (52.3%) of these children were female. The healthy siblings ranged from ages 4 months to 34 years, and some of the older siblings did not reside in the household. Of the 123 parents who reported income, 19 (13.7%) reported incomes of less than $20,000 and 25 (18.0%) reported incomes in excess of $100,000. Fif-

teen (17.4%) of the families had at least two living children with the genetic condition. Information Sharing: A Developmental Approach The findings are discussed related to the specific themes derived from the interview questions related to parents’ information telling: Parents’ approaches and goals for information sharing, assessing children’s readiness and interest, reframing strategies regarding the condition and its management,
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parents sharing genetic information with children, and advice from health care professionals. Parents’ approaches and goals for information sharing. Of the 139 parents, almost half openly shared information about the condition and its inheritance with their children with the genetic condition (n 68; 49%). Fiftyseven parents (41%) selectively shared information with these children, nine parents (6%) did not share information with these children, and five parents (4%) used conversations between parent and health care professionals to inform these children. Whereas 47 parents (43%) openly shared with healthy siblings, 48 (44%) selectively shared information, 12 (11%) did not

differently; and actively cooperate in managing the condition. As one mother of a 6-year-old son remarked about following his phenylketonuria diet, “[He’s doing this] to be healthy, strong, and smart.” Most parents believed that their children needed to know this information as soon as they began to understand in order to accept the condition and its management and to avoid shock or disappointment. Parents who selectively shared information with their children consciously did not share information that they thought would unnecessarily frighten or worry their children, such as the possibility of a shortened life in life-threatening conditions and uncertainty about future symptoms or problems (eg,

Initially, parents focused information sharing on the management of the condition. They wanted to maintain a positive attitude about managing the condition and not dwell on the potential negative consequences of the condition or its inheritance.
share information, and 3 (3%) used clinic conversations to share information with siblings. Even though many of the parents had a generally open approach towards sharing information, most parents carefully considered when to share information with their children, what information their children could handle, and how much information their children needed to know. Initially, parents focused information sharing on the management of the condition. They wanted to maintain a positive attitude about managing the condition and not dwell on the potential negative consequences of the condition or its inheritance. They wanted their affected children to live normal, healthy lives; not worry or be treated
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neurofibromatosis progression; infertility in cystic fibrosis). While these parents intended to be truthful in their explanations to their children, they took into account the child’s age and clinical condition and waited for their children to ask specific questions. As one father of a 9-year-old son with Marfan syndrome explained, “I don’t want to put a lot of weight on his shoulders. He is active and normal. I want him to live without worrying. I’ll give him information . . . but not so early that they can’t be kids.” Another parent of a child with cystic fibrosis who was perceived to have few symptoms reasoned, “We haven’t necessarily let her know that it is terminal or that it is something that children die

from and that they die from young. If there is a story on the news, actually, we’ll try to turn it off because then they give the statistics. And she is healthy, and we don’t know how her disease will go, and at this point, we haven’t wanted her to realize that yet. We want her to be able to live her day-to-day life not having to worry since she is so healthy.” Parents who did not share information tended to evaluate their children as “too young” or immature to understand information. All these children were younger than 8 years and most were younger than 5 years. In one exception to this finding, a grandmother of a 15-year-old girl with neurofibromatosis did not share information because she was not well informed and did not know how to explain the condition or its inheritance to her granddaughter. In some families, parents spoke of the value of conversations between parents and health care professionals during clinic visits as a means of sharing information with their children. One mother reported that she “told nothing” to 6-year old son with sickle cell disease, but she knew that her child was learning because the child listened to health care professionals talk to her about the condition at clinic visits. However, not all parents approved of this informationsharing strategy. Several parents indicated that they wanted to be the ones to share information about the condition and inheritance with the child. As one mother of a 5-year-old child with neurofibromatosis stated, “We give her appropriate information that she can process, and that won’t be too anxiety provoking. That’s where I am struck by how flip they were at the pediatrician’s office, like this would be something that we would be having conversation with her at 5 [years old].” Assessing children’s readiness and interest. Although the chronologic age of the children
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varied in each approach, most parents wanted to be open and honest based on their assessment of the children’s level of understanding. They determined when their children were ready for the information based on their children’s maturity and unique cues for readiness, such as the child showing interest in learning by asking questions about the condition, its management, and inheritance. Parents wanted to go at the child’s pace and “go with the flow” and “not force something” that the child “doesn’t need to know.” As a father of a 13-year-old child with neurofibromatosis said, “I don’t believe there’s a best way to tell children. You do it when the time is right—when you feel the child needs to know.” Using a developmental framework, parents viewed

year-old stepdaughter with phenylketonuria, “Thank God you are not diabetic. You might have to have your blood tested more than once a month.” Another mother alerted her two children with hemophilia that “they were blessed [because they] can be worse off, they can have cancer.” Other parents of children with sickle cell disease made downward comparisons to more severe cases of the disease, including those that required more frequent transfusions or those where strokes had occurred. In some families, parents also tried to simplify and normalize the care that was required using analogies such as vegetarian diet for understanding the PKU diet, and the pain of arthritis for understanding the pain of a sickle cell crisis.

Parents who did not share information tended to evaluate their children as “too young” or immature to understand information.
information sharing as a continuum, a learning process that evolved throughout childhood and adolescence. They also believed that children should not be overwhelmed with too much information at once. As one mother of a 7-year-old child with PKU (and 5and 9-year-old healthy siblings) said so eloquently, “[There should] never be a startling moment; each child is different and each child has a different capacity to receive information.” Reframing strategies re: the condition and its management. A number of parents talked about using reframing strategies to downplay the illness or its management. In some cases this meant comparing the child’s condition to a perceived more serious condition. A stepmother told her 11272 Volume 19 • Number 5

Parents sharing genetic information with children. Like general information about the condition, most parents determined that their children were ready for information about the genetic aspects when children demonstrated curiosity and began asking questions. As two fathers commented, “When they need to know more, they ask more. . .[we] just continue to talk about it, just have conversations” at the level of their understanding. Many parents introduced the concept of inheritance in preschool or early school-age years by telling children that they were “born with it,” and that the condition was passed down from one or both parents (depending on the inheritance of the condition). Many parents used examples of inheriting other features, such as eye or

hair color, earlobe shape, or freckles, as ways to help explain the concept of inheritance. In one family, where the condition was thought to be a spontaneous neurofibromatosis mutation, the father told his son, “It just happened” and followed this by telling his son how much his parents loved him. Many parents thought their children began to understand inheritance as early as 8 years of age, whereas others thought it occurred later at the time when they were learning about inheritance in science and sex education classes at school. As one father said, “He doesn’t know about the ‘birds and the bees,’ he needs biology to understand reproduction.” A few parents wanted to tell their children about the inheritance “before others told” their children. Some parents found that even though they shared information about the inheritance based on their children’s questions, their children did not seem interested, or as one father observed, that [his son’s eyes] “glazed over” when they talked to him about genetic inheritance. These parents interpreted their children’s responses as demonstrating that the child was not ready for the information. In other families, concerns about potential blame and future consequences influenced decisions about information sharing. One father of two school-aged children with Marfan syndrome worried about talking about inheritance with his children for fear of blame for the condition. As he revealed, “Most of the conversations that we have are how to maintain good health. We really don’t get into how it is passed on and things like that. I think at this stage, it is probably too much information. It’s probably where almost like you’re saying this person or that person is to blame for why you are like you are. And I don’t wanna give them a negative attitude because negativity takes up space in your heart and in your head that
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you can use for positive things.” Other parents of children with sickle cell disease specifically talked with their children about the choice of a future mate in order for them to avoid having future children with sickle cell disease. As one mother exclaimed, “As long as I’m living, I am going to make sure this [birth of a child with sickle cell disease] doesn’t happen. If I have to go and check their spouse’s background myself . . . I don’t want to put the burden on [them].” Advice from health care professionals. Of the 114 parents who reported on advice provided by health professionals to tell children about genetic inheritance, 23 parents (20%) indicated that they were given advice by health professionals; most was verbal advice

having any adverse psychological reactions related to the condition. Some parents indicated that resources were available to them when and if they needed them. A few parents said that it was “their decision” about when to inform their children about inheritance and genetic aspects of the condition and they did not seek advice from professionals. DISCUSSION Whereas previous research has generally examined how parents disclose the diagnosis to their children with chronic illness, this work has not explored information sharing related to the genetics of these conditions. The findings of the present study illustrate that parents’ approaches to sharing information

In some families, parents spoke of the value of conversations between parents and health care professionals during clinic visits as a means of sharing information with their children.
or written information related to treating and managing the condition. Ninety-one parents (80%) reported not receiving any advice from health professionals on how to talk with children about genetic inheritance. Whereas some parents did not make known their specific information needs, other parents wanted information so that they could better understand the inheritance of the condition in order to share genetic information with their children. As one parent of a child with Marfan syndrome revealed, “[There was] not a lot of information along the way. . . .” Other parents revealed that they did not ask for information because their children were not ready for information, or the children were healthy and were not
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with children were grounded in the goal of promoting the child’s adaptation to the genetic condition. They shared information based on their assessment of the child’s developmental readiness and interest and described information sharing as an unfolding process that continued throughout the course of childhood (Ledlie, 1999). Whether parents fully or selectively shared information with their children or did not share information at all, the majority wanted to normalize their children’s lives, probably based on the children’s current clinical situation. Families who use a normalization framework recognize the condition as potentially threatening their lifestyle, while continuing to view their children

and families as unchanged in important ways (Deatrick, Knafl, & Murphy-Moore, 1999; Knafl & Deatrick, 2002). They engage in parenting behaviors and family routines that set the stage for managing condition-related demands in a way that sustains usual patterns of family and child functioning (Knafl & Deatrick, 2002). Parents in this current study focused on the normalcy of their situation by adopting a flexible approach to information sharing that emphasized incorporating the condition into the usual routines of the family and the child (Gallo & Knafl, 1998). Life-threatening or life-shortening conditions, such as cystic fibrosis or sickle cell anemia, were more likely to cause parents to selectively share information related to death and dying. In this study, the majority of parents reported not receiving information about how to share genetic information with their children. It is possible that parents were well informed about the genetic aspects of the condition and felt well equipped to translate this information to their children. On the other hand, this finding may indicate that health professionals who interact most with these families may not recognize this as an important area of discussion. Parents need a thorough understanding of the nature of the condition, its management, and its genetic aspects so that they can accurately and confidently share information with their children. Because most discussions between health professionals and parents around genetic aspects of the condition occur at diagnosis and information sharing with children occurs many years later, health professionals should review these concepts with parents so that the resultant information sharing is both accurate and sensitive to the child.
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. . . most parents determined that their children were ready for information about the genetic aspects when children demonstrated curiosity and began asking questions.
Health professionals need to actively partner with parents to identify ways to promote healthy integration of information into the child’s self-concept and facilitate positive adaptation of the family (McConkie-Rosell & Spiridigliozzi, 2004). Professionals need to be aware that information sharing is a process that will continue throughout a child’s lifetime. This lifelong process of information sharing provides an opportunity for health protalk with children. This can include a discussion on introducing general information about the condition and then providing other information based on the children’s questions and interest. After developing a comfortable exchange with parents, professionals can address parents’ beliefs, concerns, and strategies for sharing information with children. Other important components to explore with parents over time include the parent’s

of this study is that the sample was culturally diverse, included a variety of single gene conditions, and incorporated both mothers’ and fathers’ perspectives. As such, it provides a more complete description of the information-sharing process within these families. The study is limited in that parents were interviewed at only one point in time and children’s perspectives were not included. Future studies should examine how information sharing changes over time and should explore the perspectives of the children themselves, so that we have a better understanding of how this information is experienced by children. We thank the parents who generously gave of their time to complete the study.

REFERENCES
American Academy of Pediatrics. (1999). Disclosure of illness status to children and adolescents with HIV infection. Pediatrics, 103, 164-166. American Society of Human Genetics/ American College of Medical Genetics. (1995). Report: Point-to-consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57, 1233-1241. Bibace, R., & Walsh, M. E. (1980). Development of children’s concept of illness. Pediatrics, 66, 912-917. Boss, P. (1988). Family stress management (Vol. 8). Newbury Park, CA: Sage. Clarke, A. (Ed.) (1998). The genetic testing of children. Washington, DC: BIOS Scientific. Clarke, A., & Flinter, R. (1996). The genetic testing of children: A clinical perspective. In T. Marteau & M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 15-29). New York: Cambridge University Press. Day, R. D. (1995). Family-systems theory. In R. D. Day, K. R. Gilbert, B. H. Settles, & W. R. Burr (Eds.), Research and theory in family science (pp. 91-111). Pacific Grove, CA: Brooks/Cole Publishing. Deatrick, J., Knafl, K., & Murphy-Moore, C. (1999). Clarifying the concept of normalization. Image: The Journal of Nursing Scholarship, 31, 209-214. Donaldson, R. (1993). Morally privileged relationships. In D. T. Meyers, K. Kipnis, & C. F. Murphy (Eds.), Kindred matters: Rethinking the philosophy of the family

In this study, the majority of parents reported not receiving information about how to share genetic information with their children.
fessionals to dialogue with parents about their views and attitudes related to sharing information, including the genetic aspects, with their children and adolescents. Encouraging parents to talk with professionals about sharing information with their children and discussing children’s cues for readiness are exceptional ways to take into account the child’s abilities and respect parents’ viewpoints. Parents need to know that they have an important role in the developmental process of information sharing with their children. Moreover, through discussion with parents over time, a comfortable dialogue can develop where both parents and professionals begin to understand each other (Lipson, 1993, 1994). Health professionals also can help parents develop strategies to
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understanding (eg, the nature and severity of the condition, its treatment, and its inheritance); the parent’s interpretation of the child’s views and understanding of the condition; the parent’s perceived benefits and risks of sharing information with children; the parent’s plan to share information about the condition, its treatment, and genetic inheritance with children; the child’s response to prior information sharing; what parents have found to be helpful and not helpful in sharing information with child; and further information or input that parents want from health professionals (McConkie-Rosell & Spiridigliozzi, 2004). The present analysis provides direction to guide discussions with families whose children have genetic conditions. A primary strength

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