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.     

Parents’ Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease

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.     

Prevention of antisocial behaviour: Evaluation of an early intervention programme

The prognosis of children showing antisocial behaviour is not favourable. Longitudinal research shows a high level of stability of antisocial behaviour. The present study aims to evaluate an early intervention project to reduce antisocial behavioural problems in at-risk children (4 – 7 years). Parent Management Training (PMT) was chosen because it was evaluated as a promising intervention in previous research. The training is based on social learning principles and teaches parents to manage their child's behaviour through behaviour modification. Parents were randomly assigned to two conditions: an intervention condition (PMT; n = 34) and a waiting list condition (WL; n = 30). The PMT consists of 11 sessions spread over a 6-month period. Parents were trained in groups of 8 – 10 parents. A multi-method multi-informant methodology was designed to evaluate the programme. Measures were assessed before and after treatment and at 1-year follow-up. Both short- and long-term results revealed positive effects of the intervention with respect to the child's behaviour. In addition, parental stress reduced, whereas parental skills and mother – child interactions improved. However, no time by group interaction effects were found. Implementations and limitations of early intervention and prevention of antisocial behaviour are discussed.     

Gender as a Moderator of the Relationship Between Early Separation from Parents and Psychopathic Traits in a Sample of At-Risk Adolescents

This study examined the relationship between early separation from parents and psychopathic traits in a diverse Asian community sample of at-risk adolescents. Specifically, we tested whether gender could moderate this relationship. Data on 113 at-risk adolescents were provided by their parents who participated in this study. These adolescents were between the ages of 11 and 16 years (M = 14.35; SD = 1.10). Parents provided ratings on psychopathic traits with respect to their adolescent and they also provided information on demographic variables, psychosocial and familial information. Results showed that gender moderated the link between early separation from parents and adolescent psychopathy. As hypothesized, boys who experienced early separation from parents were associated with significantly higher levels of psychopathic traits compared with boys who did not experience early separation from parents. Girls who experienced and who did not experience early separation from parents had levels of psychopathic traits that were not significantly different from each other. These findings suggest that boys appear to be more vulnerable to the negative effects of early separation from parents and early emotional parental deprivation. There are important implications of these findings for both researchers and practitioners with respect to attempting to ameliorate the negative trajectory associated with psychopathy. It is critical to pay attention to and work with children and adolescents, especially boys, who have had early disruption to parental caregiving arrangements. Additionally, it is equally important to work with to-be adoptive or foster parents on how to handle and support potentially emotionally damaged children.     

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.     

Parent Perspectives on the Use of Group Well-Child Care to Address Toxic Stress in Early Childhood

We sought to understand the experiences of parents who participated in Group Well-Child Care (GWCC) and Trauma-Informed GWCC (TI-GWCC). Three focus groups and design sessions with parents from either standard GWCC or TI-GWCC (N = 17) were conducted and synthesized into common themes using thematic analysis. Focus group themes included: (1) GWCC can empower parents to recognize toxic stress; (2) Parents identify ways that they role model behaviors for their child(ren); (3) Activities that facilitate reflection on attachment and anger management encourage intentional parenting practices. Our qualitative findings suggest that TI-GWCC supports the prevention of childhood adversity by creating connections between parents, helping families understand and identify toxic stress, and teaching parenting practices that mitigate stressors.     

Parental Cooperation with Social Services and Termination of Parental Rights in Israeli Court Cases of Child Maltreatment

Parental cooperation with social services in child maltreatment cases is fundamental to all forms of family intervention. If rehabilitation efforts fail and the child cannot be safely reunified with his parents, the state is authorized to initiate termination of parental rights (TPR) proceedings. Given the scant literature on parental cooperation and TPR, the present study examined associations between parental cooperation and TPR in Israeli court cases of child maltreatment. Comparisons between uncooperative (n = 106) and cooperative parents (n = 155) revealed that uncooperative parents were more than three times more likely to have their parental rights terminated than cooperative parents, controlling for child and parent characteristics. Parents who did not cooperate with social services had high levels of mental health problems, substance abuse, criminal records, and poverty and their children had more mental health concerns and suffered more from neglect. We discuss the important implications resulting from these findings, which include: the need to view the engagement of parents in the child welfare process as a specific goal in itself and develop research-based models specifically targeting multiple-problem families at high risk of TPR; the need for professionals to build a good working alliance with parents in order to strengthen their participation; the need to take into account different background conditions and stressors related to the parents in order to facilitate greater cooperation; and the need to assess the potential mental health needs of children involved in cases of maltreatment with low parental cooperation.     

Parental Responses to School-aged Children’s Sibling Conflict

The goals of this study were: (1) to describe and compare parental responses to school-aged siblings’ conflicts; (2) to explore the sibling relationship structural correlates of the parental responses; and (3) to assess the links between type of parental response and sibling relationship quality and children’s psychosocial and physical well being. One parent from eighty-two families (mothers = 68; fathers = 13; 1 missing) of firstborn (Mage = 9.84 years old) and secondborn (Mage = 7.16 years old) children completed an anonymous survey. Parents employed a child-centered strategy most often and sanctioned sibling aggression least often in response to siblings’ conflicts. Closer age spacing among siblings was related to parents’ sanction of physical aggression. Parental response type was associated with sibling relationship quality and children’s psychosocial and physical well being. The differential associations between parental response type, sibling experiences and children’s mental and physical well being are discussed.     

Caregiver Demand and Parent Distress in Juvenile Rheumatic Disease: The Mediating Effect of Parent Attitude Toward Illness

Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7–18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.     

Evaluation of a Community-Based Peer-to-Peer Support Program for Parents of At-Risk Youth with Emotional and Behavioral Difficulties

Parents of children with emotional and behavioral needs frequently experience difficulty navigating community-based services for their child, as well as experience increased stress and parental strain. Peer-to-peer support programs are an emerging approach to assist these parents, and evidence suggests that they are effective in increasing parents’ perceptions of social support, self-efficacy, and well-being. However, these programs often focus on parents of youth with diagnosed mental health disorders, despite the potential benefit for parents of youth who are at-risk for significant emotional and behavioral problems. In the current study, we used a pre-post design to evaluate a community-based, peer-to-peer support prevention program delivered via telephone to parents (N = 139) of youth with emerging behavioral and emotional difficulties. We evaluated (1) whether the intervention was delivered as designed, (2) the pre- and post-intervention gains in social support and concrete support, and (3) whether parents’ level of participation in the intervention and program adherence predicted outcomes. Results indicated that the intervention was delivered as intended and resulted in increased parental perceived social support and concrete support over time. Furthermore, higher levels of parental participation and intervention adherence were associated with increases in perceived social support. Thus, findings suggest that it may be beneficial for parents of at-risk youth with significant emotional and behavioral difficulties to engage in a peer-to-peer phone support prevention program.     

Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

Family communication is the primary, initial means of educating the next, at-risk generation about hereditary cancer risk. In this study, in-depth parent narratives provided self-report of motivations, planning, satisfactions and regrets associated with sharing or not sharing maternal BRCA1/2 test results with young children and advice for parents considering disclosure and for genetic counselors. Interviews were conducted with 32 mothers tested for BRCA1/2 with children ages 8–21 years and 24 of their co-parents; interview narratives were analyzed qualitatively. Parents were concerned with both protecting and educating children about hereditary cancer risk. They expressed confidence that parents can constructively convey genetic information to minor children. Telling relieved most parents and satisfied a sense of parental duty. Parents strongly advised child-specific, age-appropriate tailoring of genetic information and emphasized conveying the positive, preventive utility of genetic information to children. Immunizing effects of disclosure were viewed as providing forewarning about and preparation for possible later family cancer diagnoses. Parents choosing not to tell children were advised to consider future disclosure. Narratives about parental sharing of BRCA1/2 test results with minor children support the feasibility of parental discussion of maternal genetic test results to the next at-risk generation. Results suggest development of intervention tools for parents would support decision-making and family communication and potentially reduce parental worry and regret. Recommendations are made for more active involvement by genetic counselors with tested parents around the topic of delivery of genetic information to children.     

We were Chosen as a Family: Parents’ Evolving Use of Religion when Their Child has Cystic Fibrosis

Parental coping with new CF diagnoses often includes religion; however, little is known about how the use of religion changes over time. Longitudinal grounded theory method, in which parents were interviewed twice the 2 years after their child’s diagnosis, was used. Parents constructed the meaning that parenting a child with CF is their vocation, in accordance with “God’s plan.” A shift from isolation to an outward focus and reentry into the community was clear. The use of faith evolved over time and continues to be a source of support and hope for parents. Clinical implications of parental religion are discussed.     

A Randomized Controlled Trial of the Impact of a Family-Based Adolescent Depression Intervention on both Youth and Parent Mental Health Outcomes

This paper presents findings from a multi-centre, double-blind, randomized controlled trial that tested the hypothesis that parent and youth mental health improvements would be superior in a family-based intervention for adolescent depression (BEST MOOD) compared to a treatment-as-usual supportive parenting program (PAST). Eligible participants were families with a young person aged between 12 and 18 years who met diagnostic criteria for a depressive disorder (major, minor or dysthymic). Participating families (N = 64; 73.4% of youth were female) were recruited in Victoria, Australia and allocated to treatment condition using a block randomization procedure (parallel design) with two levels of blinding. This paper reports on the trial’s secondary outcomes on youth and parent mental health. General linear mixed models were used to examine the longitudinal effect of treatment group on outcome. Data were analyzed according to intention-to-treat; 31 families were analyzed in BEST MOOD, and 33 families in PAST. Parents in the BEST MOOD group experienced significantly greater reductions in stress and depressive symptoms than parents in the PAST group at 3-month follow-up. A greater reduction in parental anxiety was observed in the BEST MOOD group (d = 0.35) compared with PAST (d = 0.02), although the between-group difference was not significant. Both groups of youth showed similar levels of improvement in depressive symptoms at post-treatment (d = 0.83 and 0.80 respectively), which were largely sustained at a 3-month follow-up. The family-based BEST MOOD intervention appeared superior to treatment-as-usual (PAST) in demonstrating greater reductions in parental stress and depression. Both interventions produced large reductions in youth depressive symptoms.     

Parent and Family Characteristics and Their Associates in a Follow-Up of Outpatient Children with ADHD

We examined associations between child symptoms, demographic variables, parent and family characteristics in a long-term follow-up study of 214 outpatient children with attention-deficit/hyperactivity disorder (ADHD). The children’s mean age was 12.6 (SD = 2.1) years, and the mean interval from diagnosis to follow-up was 3.7 (SD = 2.2) years. We compared the characteristics of the clinical group with a community group (n = 110) recruited from the same catchment area. Parents filled out questionnaires on child symptoms, parent characteristics, and family functioning. The results showed that parents of young boys (<13 years) experienced more parenting stressors than those of adolescent boys (≥13 years), but the opposite was true for parents of girls. Parents of children with both ADHD and oppositional defiant disorder symptoms in the clinical range experienced significantly more parent and family dysfunctions than those of children with ADHD only (even after controlling for levels of ADHD symptoms in the child). Parents of children in the community group experienced significantly less parent and family dysfunctions than those of children with ADHD. Partial correlations between parent characteristics and child symptoms showed that oppositional symptoms were most strongly associated with parent and family dysfunction. Fathers experienced significantly less parenting stress, parental efficacy, and child involvement than mothers. We conclude that parents of children with ADHD experienced considerable strain related to a broad range of parent and family characteristics. Assessment of such characteristics should be part of routine assessment procedures and a prerequisite for family-focused treatment of children with ADHD.     

Effectiveness of a Multiple Family Group Intervention for Juvenile First Offenders in Reducing Parent Stress

Parenting practices are major influences on incidents of juvenile delinquency. Stress experienced by parents of children with behavioral problems is a leading contributor to parenting practices. We investigated the extent to which parental stress was reduced by participation in an established multiple group family intervention, the Family Solutions Program, developed to reduce recidivism among juvenile offenders. We also examined parent stress by gender, ethnicity, dropout rates, intervention benefits at 3-month follow-up, single- versus two-parent households, and across dimensions of family functioning and parent-adolescent communication. Parents reported greater levels of parent stress than non-clinical parents prior to intervention. Parental stress did diminish in response to intervention, but not until follow-up to intervention completion. No differences were found on initial parent stress level between completers and non-completers of the intervention or between parent stress and gender or ethnicity of the parent; however, single-parent household was associated with significantly higher levels of parent stress. Family functioning was significantly negatively correlated with parental stress. Finally, open communication between juvenile first offenders and their parents improved significantly in response to the intervention both at post-intervention and at follow-up.     

Family factors associated with attention deficit hyperactivity disorder and emotional disorders in children

Few well-controlled studies have identified psychosocial profiles of families of boys with ADHD and boys with emotional disorders compared with normal controls. However, the clinical and theoretical literature pinpoints four domains in which distinctive profiles would be expected to occur. In this study, twenty-two mothers and thirteen fathers of twenty-two boys with ADHD; twenty mothers and fifteen fathers of twenty boys with a mood or anxiety disorder; and twenty-six mothers and sixteen fathers of twenty-seven normal controls were compared on: (1) stress, support and quality of life; (2) current family functioning; (3) parenting style and satisfaction in the family of origin and current family; and (4) current and past parental functioning. The two clinical groups showed higher levels of stress and lower levels of both social support and quality of life than did normal controls. Both clinical groups showed deficits in current family functioning, but contrary to expectations the ADHD and emotional disorder group did not show distinctly different profiles. Parents of ADHD children reported higher levels of authoritarian parenting styles, and parents from both clinical groups reported less parenting satisfaction than did normal controls in both their current families and their families of origin. Parents of children with ADHD and emotional disorders reported greater parenting satisfaction in their families of origin than in their current families. This discrepancy was greatest for parents of ADHD children. Parents of children with ADHD and emotional disorders reported greater psychological health problems and more childhood ADHD symptomatology than did normal controls. Parents of children with ADHD and emotional disorders have significant psychosocial difficulties in family and personal functioning. Family intervention is highly appropriate for families with children who are referred for help with both types of difficulties.     

PARENTAL CHILDHOOD ADVERSITY,DEPRESSIVE SYMPTOMS,AND PARENTING QUALITY: EFFECTS ON TODDLER SELF‐REGULATION IN CHILD WELFARE SERVICES INVOLVED FAMILIES

Parents who are involved with child welfare services (CWSI) often have a history of childhood adversity and depressive symptoms. Both affect parenting quality, which in turn influences child adaptive functioning. We tested a model of the relations between parental depression and child regulatory outcomes first proposed by K. Lyons‐Ruth, R. Wolfe, A. Lyubchik, and R. Steingard (2002). We hypothesized that both parental depression and parenting quality mediate the effects of parental early adversity on offspring regulatory outcomes. Participants were 123 CWSI parents and their toddlers assessed three times over a period of 6 months. At Time 1, parents reported on their childhood adversity and current depressive symptoms. At Time 2, parents’ sensitivity to their child's distress and nondistress cues was rated from a videotaped teaching task. At Time 3, observers rated children's emotional regulation, orientation/engagement, and secure base behavior. The results of a path model partly supported the hypotheses. Parent childhood adversity was associated with current depressive symptoms, which in turn related to parent sensitivity to child distress, but not nondistress. Sensitivity to distress also predicted secure base behavior. Depression directly predicted orientation/engagement, also predicted by sensitivity to nondistress. Sensitivity to distress predicted emotion regulation and orientation/engagement. Results are discussed in terms of intervention approaches for CWSI families.     

Parent Management of Organization,Time Management,and Planning Deficits among Adolescents with ADHD

Organization, Time Management, and Planning (OTP) problems are a key mechanism of academic failure for adolescents with ADHD. Parents may be well positioned to promote remediation of these deficits; yet, almost nothing is known about OTP management behaviors among parents of middle and high school students with ADHD. In a sample of 299 well-diagnosed adolescents with ADHD, a measure of parental OTP management was psychometrically validated. Latent Class Analysis was conducted to detect distinct patterns of parental OTP management and yielded four unique classes: Parental Control (18.7 %), Parent-Teen Collaboration (20.4 %), Homework Assistance (20.4 %), and Uninvolved (40.5 %). Logistic Regression analyses indicated that maladaptive parental OTP strategies were related to higher levels of parent and adolescent psychopathology. Parental OTP management did not relate to current adolescent OTP skills or GPA, indicating that parents did not select OTP management strategies in immediate response to adolescent functioning. Implications for parent-directed intervention are discussed.     

Effects of a Workplace Intervention on Parent–Child Relationships

This study tested whether effects of a workplace intervention, aimed at promoting employees’ schedule control and supervisor support for personal and family life, had implications for parent–adolescent relationships; we also tested whether parent–child relationships differed as a function of how many intervention program sessions participants attended. Data came from a group randomized trial of a workplace intervention, delivered in the information technology division of a Fortune 500 company. Analyses focused on 125 parent–adolescent dyads that completed baseline and 12-month follow-up home interviews. Results revealed no main effects of the intervention, but children of employees who attended 75 % or more program sessions reported more time with their parent and more parent education involvement compared to adolescents whose parents attended <75 % of sessions, and they tended to report more time with parent and more parental solicitation of information about their experiences compared to adolescents whose parents were randomly assigned to the usual practice condition.