Long-term Evaluation of Genetic Counseling Following False-Positive Newborn Screen for Cystic Fibrosis

This cross-sectional mixed method study was a long-term follow-up evaluation of families who participated in an earlier survey of their understanding of cystic fibrosis (CF) genetics and their infants’ false-positive CF newborn screening (NBS) results. Thirty-seven of the original 138 parents participated in the follow-up telephone survey. Results showed parents who received genetic counseling at the time of their infants’ diagnostic sweat tests had significantly higher long-term retention of genetic knowledge than those without genetic counseling. However, both groups still had misconceptions and lacked accurate information about the actual risk associated with being a CF carrier. Most parents either had already informed (65%) or planned to inform (19%) their children about the child’s carrier status. Mean child age at the time of disclosure was 9.2 years. Situational prompts were the most common reasons for informing their children. Neither parental knowledge, medical literacy, nor parental education predicted whether parents informed their children about their carrier status. False-positive NBS results for CF were not associated with parental perceptions of child vulnerability 11–14 years after the testing. Although the sample from this study was small, these findings underscore the benefits of genetic counseling at the time of the diagnostic sweat test and offer information that can assist parents in talking with their children about the implications of having one CFTR mutation.     

Newborn Screening for Cystic Fibrosis: Parents’ Preferences Regarding Counseling At the Time of Infants’ Sweat Test

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.     

Parents' Experiences with Genetic Counseling After the Birth of a Baby with a Genetic Disorder: An Exploratory Study

Little is known about factors determining which families utilize genetic counseling services. We conducted semistructured interviews with parents of four children born with cystic fibrosis (CF) and ten with Down's syndrome (DS) to ascertain reasons for using, or not using, genetic counseling services in the state of Victoria, Australia. We also explored the usefulness of genetic counseling for the families who had experienced it, and the perceived role of genetic counseling. All mothers of children with CF see a genetic counselor as part of a structured education program following diagnosis through newborn screening. Information overload was identified by them as an important problem. There is no specific program for families of children with DS. Six of them had received genetic counseling and four had not, either because it was not specifically offered to them or because they did not pursue it in the context of misconceptions about its purpose. The timing of the offer of genetic counseling is important and needs to take into account parents' coping strategies after diagnosis. Several parents commented on the favorable aspects of counseling, including getting information they needed to deal with the diagnosis and relief of guilt. Better awareness of genetic counseling by referring physicians, and providing counseling at more than one visit, may contribute to a more effective service.     

Side effects of extinction procedures in a remedial preschool

Several studies have shown that behavior modification procedures aimed at a single behavior may have effects on other, nonmanipulated behaviors. A young retarded boy engaged in excessive conversation with his preschool teacher. The teacher then began to ignore his initiated conversation during free-play periods, and it decreased. In addition, (1) social behavior relative to children increased, and (2) use of girls' toys decreased during free play. Also, (3) appropriate behavior at group academics declined, while (4) disruptions rose. In a second study, the teacher alternated conditions of praise and ignoring for talking with children. Talking with children varied accordingly. In addition, use of girls' toys and group academics disruptions rose during the ignoring condition. Appropriate behaviors dropped. Lastly, a timeout procedure was used to eliminate the undesirable side effects of disruptions and of use of girls' toys. Apparently, a response class may have member behaviors that covary directly and/or inversely. Some covariations may be socially desirable, others undesirable. The appearance of undesirable "side effects" can be controlled using behavior modification techniques.     

Measurement of Health Care Attitudes In Cystic Fibrosis Patients and Their Parents

Previous research indicates that attitudes about information acquisition, and attitudes about behavioral involvement, moderate important health behaviors. These attitudes may play an important role in the management of cystic fibrosis (CF) because of the crucial role that patient knowledge and self-involvement play in maintaining adequate functioning. However, due to the young age of CF onset, and the necessary involvement of parents in CF patients' care, two preliminary questions require attention. First, can health care attitudes be measured reliably in young samples? Second, are parents' attitudes related to their children's attitudes? In this study we examined the measurement of health care attitudes in CF patients and their parents by administering the Health Opinion Survey. Results indicated that health care attitudes could be measured reliably in parents and teens, but that for younger patients (ages 8 to 12 years), reliability was reduced. Results also indicated that parents' attitudes and patients' attitudes were largely unrelated, suggesting that patients do not automatically adopt the health care attitudes of their parents. By implication, educational interventions targeted at parents may have limited effectiveness for their children.     

Psychosocial Distress and Knowledge Deficiencies in Parents of Children in Ireland Who Carry an Altered Cystic Fibrosis Gene

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.     

CONCEPTUALIZING CONVERSATIONAL COMPLEXITY

A successful conversation requires participants to have knowledge of both the topic under discussion and the nature of conversation. This study asks whether people who are more sophisticated in their representation of conversation behave differently than their less sophisticated counterparts. This issue was probed by devising two operationalizations of what we call Conversational complexity. The two measures assessed peoples' constructs about conversation (operationalized by a measure of construct differentiation) and the manner in which people psychologically structure conversations (via a sorting task tapping the degree to which they focus on the surface features, or deeper structures, of conversations). Individuals who completed the two measures of complexity also participated in conversations and completed a number of personality indices. Each operationalization of conversational complexity was positively correlated with a variety of conversational involvement behaviors, measures of conversational enjoyment and person complexity, and memory for the interactions. Generally speaking, effective interactants who enjoyed conversations and recalled them well tended to have more constructs about conversations and psychologically represented conversations at a deeper level than their counterparts.     

The Effect of Behavioral Family Intervention on Knowledge of Effective Parenting Strategies

There is a paucity of research considering the effect of behavioral family intervention (BFI) on parenting knowledge and the relative importance of both knowledge and parent confidence in reducing parenting dysfunction and problematic child behavior is unclear. In this study ninety-one parents (44 mothers, 47 fathers) of children aged 2–10?years completed an evidence-based BFI and were assessed at pre and post-intervention on knowledge of effective parenting strategies, parenting confidence, parent dysfunction, and reported intensity of externalised child behavior. Results showed that at pre-intervention parents higher in education (N?=?57) demonstrated greater knowledge than those lower in education (N?=?34). Relative to baseline, parents in both groups significantly improved their knowledge and confidence, reduced their dysfunction and reported less externalised child behavior. Effect sizes for the latter two variables were similar for both groups, however for parents higher in education the effect for confidence was larger than knowledge. Change in level of dysfunction explained the largest amount of unique variance in change to externalised child behavior. Results suggest that for optimal outcomes for parenting and child behavior management more knowledgeable parents may benefit from interventions that focus on practice and consolidation of already learned skills in order to increase confidence whereas for less knowledgeable parents the teaching of new skills and strategies, alongside increasing confidence, are important.     

The Interactive Effect of Parental Education on Language Production

This study examines the interactive effect of mother’s and father’s education on childhood language development. Parents of sixteen- and twenty-month-old children (N = 48) completed measures on their children’s language production (MacArthur Communicative Development Inventory: Words and Sentences) as well as basic demographic information. There were variations in language production according to maternal education for only the older children. There was also an interaction between maternal and paternal education; children of parents with heterogeneous levels of education (that is, only one parent with a 4-year degree) had higher levels of language production than parents with homogeneous levels of education (that is, either both parents with a degree or both parents without a degree). Surprisingly, children with homogeneous levels of parental education were the ones who scored the lowest on measures of language production. This may be due to less effective parenting at both the low and high parental education levels or because disparity in parental education positively affects the home learning environment.     

Conversation memory: the effects of speaker status on memory for the assertiveness of conversation remarks

We conducted three experiments to examine the effects of information about a speaker's status on memory for the assertiveness of his or her remarks. Subjects either read (Experiments 1 and 2) or listened to a conversation (Experiment 3) and were later tested for their memory of the target speaker's remarks with either a recognition (Experiment 1) or a recall procedure (Experiments 2 and 3). In all experiments the target speaker's ostensible status was manipulated. In Experiment 1, subjects who believed the speaker was high in status were less able later to distinguish between remarks from the conversation and assertive paraphrases of those remarks. This result was replicated in Experiment 2, but only when the status information was provided before subjects read the conversation and not when the information was provided after the conversation had been read. Experiment 2's results eliminate a reconstructive memory interpretation and suggest that information about a speaker's status affects the encoding of remarks. Experiment 3 examined this effect in a more ecologically representative context.     

The role of attachment and cognitive inhibition in children's memory and suggestibility for a stressful event

There has been increasing interest in children's abilities to report memories of and resist misleading suggestions about distressing events. Individual differences among children and their parents may provide important insight into principles that govern children's eyewitness memory and suggestibility for such experiences. In the present study, 51 children between the ages of 3 and 7 years were interviewed about an inoculation after a delay of approximately 2 weeks. Results indicated that parents' attachment Avoidance was associated with children's distress during the inoculation. Parental attachment Anxiety and the interaction between parental Avoidance and children's stress predicted children's memory for the inoculation. Cognitive inhibition was also a significant predictor of children's memory errors and suggestibility. Theoretical implications concerning effects of stress and individual differences on children's eyewitness memory and suggestibility are discussed.     

Resistance to the influences of others: Limits to the formation of a collective memory through conversational remembering

People often form collective memories by sharing their memories with others. Warnings about the reliability of one conversational participant can limit the extent to which conversations or other forms of postevent information can influence subsequent memory. Although this attenuation is consistently found for prewarnings, there are substantial reasons to suspect that, by carefully manipulating both individual characteristics of the listener in a conversation and the dynamics of the postevent conversation, one can restrict the effect even prewarnings have on the influence a speaker might have on the memory of a listener. Indeed, in situations in which a speaker contributes substantially to a conversation and the quality of memory of a listener is poor, prewarnings have the paradoxical effect of increasing the influence of the speaker on a listener's memory. Warnings may not always limit the formation of a collective memory. Copyright © 2009 John Wiley & Sons, Ltd.     

Bias in the Counseling Process: How to Recognize and Avoid It

Counselors' vulnerability to inferential bias during the counseling process may result in misdiagnosis and improper interventions. This article provides readers with information regarding inferential bias. The inferential biases discussed include (a) availability and representativeness heuristics; (b) fundamental attribution error; (c) anchoring, prior knowledge, and labeling; (d) confirmatory hypothesis testing; and (e) reconstructive memory. Each bias is described and illustrated through fictitious case vignettes, and suggestions concerning what precautions counselors may do to avoid each type of bias are presented.     

Monitoring item and source information: Evidence for a negative generation effect in source memory

Item memory and source memory were assessed in a task that simulated a social conversation. Participants generated answers to questions or read statements presented by one of three sources (faces on a computer screen). Positive generation effects were observed for item memory. That is, participants remembered topics of conversation better if they were asked questions about the topics than if they simply read statements about topics. However, a negative generation effect occurred for source memory. That is, remembering the source of some information was disrupted if participants were required to answer questions pertaining to that information. These findings support the notion that item and source memory are mediated, as least in part, by different processes during encoding.     

‘I’ve got to prioritise’: being a parent with cystic fibrosis

Due to advances in earlier diagnosis and treatment, the life expectancy of a person born with cystic fibrosis (CF) has increased. Therefore, more people with CF are becoming parents but the psychological understanding of CF has lagged behind advances in medical treatment; there is very limited applied psychological research on which parents and professionals can draw when considering issues of parenting in this context. This qualitative research explored how mothers and fathers with CF experience and manage the dual roles of being a parent and living with CF. The aim was to facilitate development of an understanding of experience rather than test existing theory. A qualitative methodology was chosen as it allowed participants to reflect openly on their individual experiences. Nine participants completed semi-structured interviews either in their own homes or a clinic base which examined parenting, CF and the interaction between the two roles. Four participants were male and five were female with an age range of 21–50. Interpretive Phenomenological Analysis was used to interpret the participants’ accounts and generate super-ordinate and master themes. ‘Being a parent on compressed time’ was the super-ordinate theme which reflected the challenge of parenting within both a limited life trajectory and a complex treatment regime with daily adherence and time pressures. The findings have implications for parents with CF, those considering parenting and for health professionals working in CF services whose guidance needs to be grounded in an evidence-base. Further research is needed to explore the experiences of parents within different family structures, parents who have had a transplant and the perspectives of others in the wider system in which parents with CF are located.     

Knowledge and Attitudes Regarding Non-Invasive Prenatal Testing (NIPT) and Preferences for Risk Information among High School Students in Sweden

Non-invasive prenatal testing (NIPT) was recently introduced for prenatal testing of genetic disorders. Cell-free fetal DNA is present in maternal blood during pregnancy and enables detection of fetal chromosome aberrations in a maternal blood sample. The public perspective to this new, simple method has not been illuminated. The views of young people (i.e. future parents) are important to develop suitable counseling strategies regarding prenatal testing. The aim was to explore Swedish high school students’ attitudes, knowledge and preferences regarding NIPT. A questionnaire was completed by 305 students recruited from one high school in Stockholm, November and December 2014. Most students (80 %) considered prenatal testing as good. The majority (65 %) was positive or very positive towards NIPT and 62 % stated that they potentially would like to undergo the test if they or their partner was pregnant. The vast majority (94 %) requested further information about NIPT. Most students (61 %) preferred verbal information, whereas 20 % preferred information via the Internet. The majority of the high school students was positive towards prenatal testing and most was positive towards NIPT. Further, information was requested by the vast majority before making a decision about NIPT. Most of the students preferred verbal information and to a lesser extent information via the Internet. The attitudes, knowledge and preferences for risk information concerning NIPT in young adults are important, in order to increase knowledge on how to educate and inform future parents.     

How do I remember that I know you know that I know?

Communication is aided greatly when speakers and listeners take advantage of mutually shared knowledge (i.e., common ground). How such information is represented in memory is not well known. Using a neuropsychological-psycholinguistic approach to real-time language understanding, we investigated the ability to form and use common ground during conversation in memory-impaired participants with hippocampal amnesia. Analyses of amnesics' eye fixations as they interpreted their partner's utterances about a set of objects demonstrated successful use of common ground when the amnesics had immediate access to common-ground information, but dramatic failures when they did not. These findings indicate a clear role for declarative memory in maintenance of common-ground representations. Even when amnesics were successful, however, the eye movement record revealed subtle deficits in resolving potential ambiguity among competing intended referents; this finding suggests that declarative memory may be critical to more basic aspects of the on-line resolution of linguistic ambiguity.     

Effect of Pre-test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

Empirical data on genetic counseling outcomes in the deaf population are needed to better serve this population. This study was an examination of genetics knowledge before and after culturally and linguistically appropriate pre-test genetic counseling in a diverse deaf adult sample. Individuals ≥18?years old with early-onset sensorineural deafness were offered connexin-26/30 testing and genetic counseling. Participants completed questionnaires containing 10 genetics knowledge items at baseline and following pre-test genetic counseling. The effects of genetic counseling, prior beliefs about etiology, and participant's preferred language on genetics knowledge scores were assessed (n?=?244). Pre-test genetic counseling (p?=?.0007), language (p?相似文献   

The role of arousal in memory for conversation

In the first experimental study of memory for natural conversation, Keenan, MacWhinney, and Mayhew (1977) found that, even after 30 h, subjects had extremely good recognition memory for the exact wording of statements that contained information about a speaker’s “intentions, beliefs, and his relations with the listener.” Such sentences were said to be high in “interactionai content.” One possible interpretation of the results of Keenan et al. is that it is the immediate affective response to an utterance, rather than its interactional content, that increases its memorability. In the present study, the strong relationship between interactional content and memory found by Keenan et al. was replicated. Subjects showed excellent recognition memory for high interactional content statements from a conversation, even after a 72-h interval. However, there was very little relationship between arousal, as determined by subjects’ electrodermal response (EDR), and subsequent memory. Moreover, involvement had its greatest effect not on memory, but on subjects’ arousal as measured by EDR.