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1.
Tluczek A Koscik RL Modaff P Pfeil D Rock MJ Farrell PM Lifchez C Freeman ME Gershan W Zaleski C Sullivan B 《Journal of genetic counseling》2006,15(4):277-291
Newborn screening (NBS) protocols for cystic fibrosis (CF) are the first regional population-based programs to incorporate DNA analysis into their procedures. Research about these programs can inform policy and practice regarding how best to counsel families with abnormal NBS results. The grounded theory method guided interviews with 33 families whose infants had abnormal CF NBS results. A dimensional analysis of these interviews provided a theoretical framework describing parents’ preferences regarding counseling during their infant's sweat test appointment. This framework describes the contexts and characteristics of the two main dimensions of parents’ preferences: factual information and emotional support. Factual information included learning about the probability of a CF diagnosis, CF disease facts, sweat test procedure, and CF genetics. Social support consisted of offering parents a choice about the timing and amount of CF information, showing empathy for their distress, instilling hope, personalizing counseling, and providing hospitality. This framework also explains the consequences of counseling that matched versus mismatched parental preferences in these domains. Counseling that matched parents preferences reduced parents’ distress while mismatched counseling tended to increase parents’ worry about their infant. 相似文献
2.
Melissa Noke Alison Wearden Sarah Peters Fiona Ulph 《Journal of genetic counseling》2014,23(5):701-707
International carrier testing guidelines discourage testing in childhood to preserve autonomous decision making and prevent detrimental psychosocial consequences. Despite the discouragement of autosomal recessive carrier testing during childhood, some sickle cell disease (SCD) or cystic fibrosis (CF) carriers are incidentally identified through UK and international newborn screening (NBS). This creates a scenario where parents may have knowledge of their newborn’s, but not older child’s carrier status. In addition, there is wide variation in the identification of CF and SCD carriers due to the screening technologies implemented by different NBS programs. The current and future availability of childhood testing are determined to some extent by the impact of testing on children and parents (whether this is beneficial or detrimental to wellbeing). However empirical research informing carrier guidance and practice is conflicting. Echoing previous calls, this discussion highlights the need for further qualitative and longitudinal research with children to consider the psychosocial impact of carrier testing on children and role of disclosure from parents on adaptation to results. It is recommended that professionals aim to minimize harms resulting from carrier identification by providing support for parents and children following NBS. Support for non-genetics specialists from genetic counselors to enable discussion of carrier results with children is suggested. 相似文献
3.
Tluczek A Zaleski C Stachiw-Hietpas D Modaff P Adamski CR Nelson MR Reiser CA Ghate S Josephson KD 《Journal of genetic counseling》2011,20(2):115-128
This article describes the development of a tailored family-centered approach to genetic counseling following abnormal newborn
screening (NBS) for cystic fibrosis (CF). A genetic counseling consortium reviewed research literature, selected theoretical
frameworks, and incorporated counseling psychology micro skills. This innovative intervention integrated theories and empirically
validated techniques. Pilot testing and parent feedback confirmed satisfaction with and feasibility of the approach designed
to (a) minimize parents’ distress, (b) facilitate parents’ understanding, (c) increase parents’ capacities to use genetic
information, and (d) enhance parents’ experiences with genetic counseling. Counselors engage in a highly interactive process
of evaluating parents’ needs and tailoring assessments and interventions that include a therapeutic environment, the family’s
emotional needs, parents’ informational needs, and a follow-up plan. This promising new model is the first to establish a
theory-driven, evidence-based standard for genetic counseling in the context of NBS for CF. Additional research will evaluate
the model’s efficacy in clinical practice. 相似文献
4.
The objective of this study was to explore parents’ communication about risk with siblings of children affected by an inherited
genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured
interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic
conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families.
Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects
of family communication. Interviews with 33 families showed that siblings’ information and support needs go largely unrecognized
by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents,
others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms
and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk.
When siblings were fully informed about the condition and included in family discussion, they had a better understanding of
their role within their family, and family relationships were reported to be more harmonious. The information and support
needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition
may require support from health professionals to understand and respond to their unaffected children’s need for more information
about the genetic condition and its implications for the children’s own future health and reproductive decision-making. 相似文献
5.
Dimensions of martial conflict, children's emotional security regarding interparental conflict, and parenting style were examined
as mediators between parental dysphoria and child adjustment. A community sample of 262 children, ages 8–16, participated
with their parents. Behavioral observations were made of parents’ interactions during marital conflict resolution tasks, which
children later observed to assess their emotional security. Questionnaires assessed parents’ dysphoria, parenting, and children's
adjustment. Structural equation modeling indicated that parental dysphoria was linked with child adjustment through specific
and distinct mediating family processes, including marital conflict and parenting. Children's emotional security in the context
of particular marital conflict styles also mediated relations between parental dysphoria and child adjustment problems, with
similar pathways found for mothers and fathers. These pathways remained significant even after significant parenting contributions
were considered. 相似文献
6.
S. J Quigley B. Linnane S. Connellan A. Ward P. Ryan 《Journal of genetic counseling》2018,27(3):589-596
Significant gaps have been identified in parental understanding of CF newborn screening and the consequences of carrying an altered CF gene. Seven potential causes of psychosocial adversity arising from false positive newborn screening for CF have been identified. The current study aimed to increase parents understanding of CF, reduce their levels of stress, and investigate psychosocial adversity arising from false-positive screening. This national study was run over one year in the Republic of Ireland. Parents were recruited for the study following a diagnostic sweat test confirming their child carried a single altered CF gene. Parents were randomly assigned into a control and intervention group, with those in the intervention group receiving a carefully designed information pack. All parents took part in semi-structured interviews. Parents (n = 16) who received an information pack had significantly higher CF knowledge scores than parents (n = 16) in the control group. 66% of parents in the control group misunderstood the health implications of carrying an altered CF gene, no parents in the intervention group had the same misunderstanding. There was no significant difference in stress scores between the groups. Parents of infants who had more than one sweat test due to insufficient sweat quantity had higher overall stress percentiles (50%), than parents of infants who had one sweat test (30%), indicating greater parental stress. The combination of written and audio-visual information contained in the information pack successfully increased parents comprehension of CF. The study also evaluates the potential for psychosocial adversity following false positive newborn screening for CF. 相似文献
7.
When a child is identified with a genetic condition, some parents want to know the carrier status of their other children. There has been little exploration of why parents want this information. To address this question, semi-structured interviews were conducted with parents of 32 children with cystic fibrosis, haemophilia, and Duchenne muscular dystrophy who wanted to know the carrier status of their other children. Data was analyzed using inductive content analysis. Parents expressed a range of reasons for desiring their child’s carrier status, which fell into two broad categories: 1) benefit for the parents and 2) perceived benefit to the child. Parents discussed the desire for certainty and peace of mind derived from having knowledge of their child’s status. The most commonly expressed reason for wanting to know their child’s carrier status was in order to communicate the information to their child to provide them with the ability to make informed reproductive decisions. These reasons suggest parents are seeking their children’s carrier information both as a coping strategy and to communicate carrier information as part of their role as a parent. This has important implications for genetic counseling practice, especially as international guidelines generally recommend against carrier testing in children. 相似文献
8.
Parental approaches to communicating information about genetic disorders to their children may be an important determinant
in how the children manage stress as well as their adjustment and adaptation to that information. We explored communication
patterns through structured interviews with 46 parents of daughters who learned about their genetic risk status as minors.
Three different levels of knowledge about fragile X syndrome were explored: 1) informing that it has been diagnosed in the
family and is an inherited disorder, 2) informing about the possibility of a daughter being a carrier, and 3) if testing had
been done, informing the daughter of her actual carrier status. Additionally, parental perceptions of their daughter’s understanding
of the information were explored along with frequency of discussions. We found that communication about genetic risk was initiated
by the parents. Five disclosure patterns were identified with variations in style, content, and frequency of communication
related to the information that was being disclosed. Aspects of resilient communication were present for all levels of disclosure;
however, as the information became more personally relevant for the daughter such as disclosure about the possibility of “being
a carrier” for fragile X syndrome and there was uncertainty regarding potential outcomes, the conversations included fewer
resilient characteristics. Uncertainty about what and how to present information may negatively affect a parent’s ability
to include elements of resilient communication when disclosing genetic risk information. 相似文献
9.
Jane Chudleigh Sarah Buckingham Jo Dignan Sandra O’Driscoll Kemi Johnson David Rees Hilary Wyatt Alison Metcalfe 《Journal of genetic counseling》2016,25(6):1215-1226
The clinical advantages of the newborn screening programme (NBS) in the UK are well described in the literature. However, there has been little exploration of the psychosocial impact on the family. This study followed the principles of grounded theory to explore parents’ experiences of receiving the initial positive NBS result for their child with cystic fibrosis (CF) or sickle cell disease (SCD). Semi-structured, qualitative interviews were conducted with 22 parents (12 mothers and 10 fathers) whose children had been diagnosed with CF or SCD via NBS and were under the age of 1 year at the time of interview. The main themes that arose from the data were; parents previous knowledge of the condition and the NBS programme, the method of delivery and parental reactions to the result, sharing the results with others, the impact on parental relationships and support strategies. Study conclusions indicate that most parents thought initial positive NBS results should be delivered by a health professional with condition specific knowledge, preferably with both parents present. Genetic counselling needs to include a focus on the impact of NBS results on parental relationships. Careful consideration needs to be given to strategies to support parents of babies who have positive NBS results both in terms of the psychological health and to assist them in sharing the diagnosis. 相似文献
10.
Nancy P. Callanan Diane Bloom James R. Sorenson Brenda M. DeVellis Brian Cheuvront 《Journal of genetic counseling》1995,4(2):83-95
Consensus exists that genetic counseling and CF carrier testing should be offered to individuals with a positive family history of CF. To learn more about their experience with genetic counseling and testing we conducted a series of structured telephone interviews and focus group discussions with individuals and couples who had undergone genetic counseling and carrier testing because of a family history of CF. Traditional genetic counseling appears to have been effective for this population. Subjects generally report having a positive counseling experience and few difficulties upon learning their carrier status. Subjects were quite knowledgeable about CF and their carrier risk and were highly motivated to seek testing. They may not be representative of all individuals with a family history of CF however. For carriers, concerns about whether and when to have children tested, and concerns about insurance implications of carrier status may emerge sometime after the initial counseling. Strategies for addressing these concerns and for providing efficient and effective education and genetic counseling for people with a family history of CF need to be developed. 相似文献
11.
Cathy Creswell Sarah Shildrick Andy P. Field 《Journal of child and family studies》2011,20(2):240-250
Interpretation of ambiguity is consistently associated with anxiety in children, however, the temporal relationship between
interpretation and anxiety remains unclear as do the developmental origins of interpretative biases. This study set out to
test a model of the development of interpretative biases in a prospective study of 110 children aged 5–9 years of age. Children
and their parents were assessed three times, annually, on measures of anxiety and interpretation of ambiguous scenarios (including,
for parents, both their own interpretations and their expectations regarding their child). Three models were constructed to
assess associations between parent and child anxiety and threat and distress cognitions and expectancies. The three models
were all a reasonable fit of the data, and supported conclusions that: (i) children’s threat and distress cognitions were
stable over time and were significantly associated with anxiety, (ii) parents’ threat and distress cognitions and expectancies
significantly predicted child threat cognitions at some time points, and (iii) parental anxiety significantly predicted parents
cognitions, which predicted parental expectancies at some time points. Parental expectancies were also significantly predicted
by child cognitions. The findings varied depending on assessment time point and whether threat or distress cognitions were
being considered. The findings support the notion that child and parent cognitive processes, in particular parental expectations,
may be a useful target in the treatment or prevention of anxiety disorders in children. 相似文献
12.
Kaimal G Steinberg AG Ennis S Harasink SM Ewing R Li Y 《Journal of genetic counseling》2007,16(6):775-787
Few studies examine whether and how parental attitudes towards genetic testing change over time. In this study we interviewed
parents of 14 children with newly identified hearing loss at two time points: after referral to genetics and 1 year later.
Qualitative analyses of parental narratives indicate that parental attitudes did not change significantly over this time.
Parents who perceived genetic testing to be useful continued to value it after testing, while parents who did not perceive
it as being useful for their child’s future held the same view a year later. The only parents who changed their views regarding
the usefulness of genetic testing for hearing loss were those who reported that their children underwent significant changes
in their hearing loss or were faced with other life threatening conditions. Parents were also often unaware of the role of
the genetic counselor and how genetic counseling could help address many of their lingering questions and concerns. These
emergent themes indicate the need for geneticists and genetic counselors to be aware of and sensitized to the questions and
attitudes that bring parents to a genetic evaluation, as well as the reasons why parents may not follow up with genetic testing
for hearing loss when recommended. 相似文献
13.
Michael Arribas-Ayllon Srikant Sarangi Angus Clarke 《Journal of genetic counseling》2009,18(2):173-184
Childhood genetic testing raises complex ethical and moral dilemmas for both families and professionals. In the family sphere,
the role of communication is a key aspect in the transmission of ‘genetic responsibility’ between adults and children. In
the professional sphere, genetic responsibility is an interactional accomplishment emerging from the sometimes competing views
over what constitutes the ‘best interests’ of the child in relation to parental preferences on the one hand, and professional
judgements on the other. In the present paper we extend our previous research into parental accounts of childhood genetic
testing and explore the ethical accounts of professionals in research interviews. Interviews (n = 20) were conducted with professional practitioners involved in the genetic diagnosis and management of children and their
families. We first identify four inter-related themes—juxtaposition of parental rights vis-à-vis child’s autonomy, elicitation
of the child’s autonomy, avoidance of parental responsibility and recognition of professional uncertainty. Then, using Rhetorical
Discourse Analysis, we examine the range of discourse devices through which ethical accounts are situationally illustrated:
contrast, reported speech, constructed dialogue, character and event work. An overarching device in these ethical accounts
is the use of extreme case scenarios, which reconstruct dilemmas as justifications of professional conduct. While acknowledging ambivalence, our analysis suggests
that professional judgement is not a simple matter of implementing ethical principles but rather of managing the practical
conditions and consequences of interactions with parents and children. We conclude that more attention is needed to understand
the way professional practitioners formulate judgements about ethical practice. 相似文献
14.
Ahmed S Hewison J Green JM Cuckle HS Hirst J Thornton JG 《Journal of genetic counseling》2008,17(6):560-572
The aim of this study is to explore reasons for and against prenatal testing and termination for a range of conditions in
women from two different ethnic backgrounds. A total of 19 Pakistani and European women in West Yorkshire, UK, who either
had a child with a genetic condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes
regarding prenatal testing and termination for 30 different fetal conditions and were interviewed about their reasons for
their responses. There were more similarities than differences between the Pakistani and European white women. The most important
factor in most women’s decisions about termination of pregnancy was their perception of the quality of the life of a child
with the genetic condition, in particular, whether the child would be “suffering.” This was described as either physical suffering,
as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social factors. These findings
highlight the need for detailed information about the potential quality of life for the child and the child’s family to enable
parents to make informed choices, particularly the extent to which the child is likely to suffer, the nature of such potential
“suffering” and the extent to which the child could lead a “normal” life. The findings also challenge stereotypes about cultural
differences in attitudes about termination of pregnancy. 相似文献
15.
Using a multi-group cross-sectional design, we explored self-concept related to parental role salience and enactment in 53
young women (14 to 24 years) with knowledge they were either carriers, non-carriers, or could be a carrier of fragile X syndrome
(FXS). Parental role salience included the participants’ desire “to be a mother” and the importance they placed on this role.
Enactment focused on the participants’ views regarding ways to become a mother (reproductive options), parenting a child affected
by FXS, and the development of partner relationships (marriage). Participants completed the FXS Adolescent Interview and the
FX-Visual Analog Scale. Participants’ knowledge of their genetic risk status appears to have influenced both salience and
enactment of the parental role, and the effect varied based on carrier status. For many, knowledge of genetic risk appears
to have led to reappraisal, redefinition, and re-engagement with the goal of becoming a parent. This process was prominent
in those who were carriers and less so in those who were at-risk, and it did not typically occur in those who were non-carriers.
Findings offer valuable insight into the impact of genetic risk information on developing perceptions of the parental role
and offer new directions for genetic counseling with adolescents and young women with a family history of FXS. 相似文献
16.
Berney J. Wilkinson Richard M. Marshall Brenda Curtwright 《Journal of child and family studies》2008,17(4):582-598
We examined the relationship between Tourette’s Disorder (TD) and parent reported stress. About 84 parents of children with
TD participated by completing questionnaires assessing parental stress, TD symptom severity, co-morbid disorders, services
received by the child, and parents’ perception of their child’s academic ability. The results indicate that parent reported
stress reached clinically significant levels when a co-morbid disorder was present, but not with a diagnosis of TD alone.
Similarly, parents report higher levels of stress when they view their child as performing below other students academically.
Finally, the types of services that the child receives were found to have little or no relationship to parent reported stress.
Limitations of this study, directions for future research, and implications for intervention are discussed. 相似文献
17.
Allyn McConkie-Rosell Elizabeth Melvin Heise Gail A. Spiridigliozzi 《Journal of genetic counseling》2009,18(4):313-325
Little is known about how and what genetic risk information parents communicate to their children and even less is known about
what children hear and remember. To address this void, we explored how genetic risk information was learned, what information
was given and who primarily provided information to adolescent girls and young adult women in families with fragile X syndrome.
We explored three levels of risk knowledge: learning that fragile X syndrome was an inherited disorder, that they could be
a carrier, and for those who had been tested, actual carrier status. These data were collected as part of a study that also
explored adolescent self concept and age preferences about when to inform about genetic risk. Those findings have been presented
separately. The purpose of this paper is to present the communication data. Using a multi-group cross-sectional design this
study focused on girls ages 14–25 years from families previously diagnosed with fragile X syndrome, 1) who knew they were
carriers (n = 20), 2) noncarriers (n = 18), or 3) at-risk to be carriers (n = 15). For all three stages of information the majority of the study participants were informed by a family member. We identified
three different communication styles: open, sought information, and indirect. The content of the remembered conversations
varied based on the stage of genetic risk information being disclosed as well as the girls’ knowledge of her own carrier status.
Girls who had been tested and knew their actual carrier status were more likely to report an open communication pattern than
girls who knew only that they were at-risk. 相似文献
18.
Anna C. Wilson Wendy M. DeCourcey Kurt A. Freeman 《Journal of clinical psychology in medical settings》2009,16(3):216-222
Models of diabetes management in children emphasize family relationships, particularly parent–child interactions. In adolescents,
parental involvement in disease-specific management relates to better health and adherence. However, information about parental
involvement in disease management for young children is limited and mixed. This study investigated behavior problems of school-aged
children with Type 1 Diabetes Mellitus (T1DM) in association with parent discipline strategies and parents’ perceptions of
(1) time spent managing diabetes and (2) the impact their child’s diabetes has on their discipline strategies. Parents of
children ages 5–12 with T1DM completed standardized measures of child misbehavior, parent discipline strategies, and responded
to questions regarding perceived time spent managing diabetes, and perceived impact of diabetes on ability to discipline.
Results showed child mealtime misbehavior was common and associated with overreactive parental discipline. Further, overreactive
discipline was also associated with reports of less time spent managing child’s illness. Child misbehavior was positively
associated with parents’ perceived amount of time spent managing diabetes and with the impact of child diabetes on discipline.
Findings suggest the importance of considering parent discipline strategies and child misbehavior when working with young
children with diabetes. 相似文献
19.
Eric A. Storch Heather Lehmkuhl Steven L. Pence Jr. Gary R. Geffken Emily Ricketts Jill F. Storch Tanya K. Murphy 《Journal of child and family studies》2009,18(3):249-258
We examined parental experience of having a child with obsessive-compulsive disorder (OCD) in 62 parent–child dyads. Youth
with a primary diagnosis of OCD and their parent(s) were administered the CY-BOCS jointly by a trained clinician. Parents
completed several measures about their child’s OCD-related impairment and accommodation, emotional and behavioral functioning,
parental distress, caregiver stress, and parental experiences of having a child with OCD. Results indicated that parents of
children with OCD are considerably distressed about their child’s condition. As expected, negative parental experiences (e.g.,
anxiety about child’s condition, uncertainty about their future) were directly related to OCD symptom severity and impairment,
as well as child internalizing and externalizing problems, family accommodation of symptoms, and caregiver strain. The presence
of emotional resources was negatively related to most outcomes, although some of these relationships did not achieve statistical
significance. The presence of internalizing symptoms mediated the relationship between parental experiences and parental distress.
Given these findings, addressing parental experiences as part of a family based cognitive-behavioral treatment program for
pediatric OCD may help reduce parental distress and improve patient prognosis. 相似文献
20.
Amori Yee Mikami Matthew D. Lerner Marissa Swaim Griggs Alison McGrath Casey D. Calhoun 《Journal of abnormal child psychology》2010,38(6):737-749
We report findings from a pilot intervention that trained parents to be “friendship coaches” for their children with Attention-Deficit/Hyperactivity
Disorder (ADHD). Parents of 62 children with ADHD (ages 6–10; 68% male) were randomly assigned to receive the parental friendship
coaching (PFC) intervention, or to be in a no-treatment control group. Families of 62 children without ADHD were included
as normative comparisons. PFC was administered in eight, 90-minute sessions to parents; there was no child treatment component.
Parents were taught to arrange a social context in which their children were optimally likely to develop good peer relationships.
Receipt of PFC predicted improvements in children’s social skills and friendship quality on playdates as reported by parents,
and peer acceptance and rejection as reported by teachers unaware of treatment status. PFC also predicted increases in observed
parental facilitation and corrective feedback, and reductions in criticism during the child’s peer interaction, which mediated
the improvements in children’s peer relationships. However, no effects for PFC were found on the number of playdates hosted
or on teacher report of child social skills. Findings lend initial support to a treatment model that targets parental behaviors
to address children’s peer problems. 相似文献