Transactional processes matter: experiences between parents of children with acquired brain injury and health and education providers.

PURPOSE: Little is known about how parents' transactions with health and educational professionals shape their experience of these systems, and impact on capacities to support their child with acquired brain injury (ABI). We explored experiences of specific transactions and perceptions of impact. METHODS: A focus group and individual interviews were conducted with seven parents of children in the chronic phase of recovery following ABI. Thematic analysis was used to interpret the data. RESULTS: Four superordinate themes were identified: "These Encounters Matter," "A Person not a Number-Interpersonal Skills that Count," "The Blind Leading the Blind," and "Becoming the Backbone." Findings highlighted that these transactions mattered to parents, promoting either distress or empowerment. Positive outcomes were characterized by transactions related to communication, empathy, trust, collaboration, and connection. However, there was a perception of the "blind leading the blind" and that ultimately parents needed to enter such transactions armed with knowledge and their own therapeutic goals. CONCLUSIONS: Our findings unpack contextual and transactional elements of parents' experiences with health and education professionals which empower or distress. Understanding and improving these processes is important, given the central role families play in child outcomes following ABI. Implications for clinical practice are discussed.

Findings suggest encounters with health and education professionals impact parent functioning and enable, or undermine, them in supporting their child with acquired brain injury.Transactional processes between parents and professionals that led to empowering and positive, or disempowering and negative, outcomes were elucidated and professionals are invited to consider these.Training for health and education professionals related to knowledge of childhood acquired brain injury, but also attunement and interpersonal processes for consultations with parents, are highlighted as important.Findings suggest that helping parents develop effective advocacy skills for their child may also be indicated.

CHIP-Family intervention to improve the psychosocial well-being of young children with congenital heart disease and their families: results of a randomised controlled trial.

OBJECTIVE: Children with congenital heart disease and their families are at risk of psychosocial problems. Emotional and behavioural problems, impaired school functioning, and reduced exercise capacity often occur. To prevent and decrease these problems, we modified and extended the previously established Congenital Heart Disease Intervention Program (CHIP)-School, thereby creating CHIP-Family. CHIP-Family is the first psychosocial intervention with a module for children with congenital heart disease. Through a randomised controlled trial, we examined the effectiveness of CHIP-Family. METHODS: Ninety-three children with congenital heart disease (age M = 5.34 years, SD = 1.27) were randomised to CHIP-Family (n = 49) or care as usual (no psychosocial care; n = 44). CHIP-Family consisted of a 1-day group workshop for parents, children, and siblings and an individual follow-up session for parents. CHIP-Family was delivered by psychologists, paediatric cardiologists, and physiotherapists. At baseline and 6-month follow-up, mothers, fathers, teachers, and the child completed questionnaires to assess psychosocial problems, school functioning, and sports enjoyment. Moreover, at 6-month follow-up, parents completed program satisfaction assessments. RESULTS: Although small improvements in child outcomes were observed in the CHIP-Family group, no statistically significant differences were found between outcomes of the CHIP-Family and care-as-usual group. Mean parent satisfaction ratings ranged from 7.4 to 8.1 (range 0-10). CONCLUSIONS: CHIP-Family yielded high program acceptability ratings. However, compared to care as usual, CHIP-Family did not find the same extent of statistically significant outcomes as CHIP-School. Replication of promising psychological interventions, and examination of when different outcomes are found, is recommended for refining interventions in the future. TRIAL REGISTRY: Dutch Trial Registry number NTR6063, https://www.trialregister.nl/trial/5780.

The CHIP-Family study to improve the psychosocial wellbeing of young children with congenital heart disease and their families: design of a randomized controlled trial.

BACKGROUND: Children with congenital heart disease (CHD) are at increased risk for behavioral, emotional, and cognitive problems. They often have reduced exercise capacity and participate less in sports, which is associated with a lower quality of life. Starting school may present more challenges for children with CHD and their families than for families with healthy children. Moreover, parents of children with CHD are at risk for psychosocial problems. Therefore, a family-centered psychosocial intervention for children with CHD when starting school is needed. Until now, the 'Congenital Heart Disease Intervention Program (CHIP) - School' is the only evidence-based intervention in this field. However, CHIP-School targeted parents only and resulted in non-significant, though positive, effects as to child psychosocial wellbeing. Hence, we expanded CHIP by adding a specific child module and including siblings, creating the CHIP-Family intervention. The CHIP-Family study aims to (1) test the effects of CHIP-Family on parental mental health and psychosocial wellbeing of CHD-children and to (2) identify baseline psychosocial and medical predictors for the effectiveness of CHIP-Family. METHODS: We will conduct a single-blinded randomized controlled trial comparing the effects of CHIP-Family with care as usual (no psychosocial intervention). Children with CHD (4-7 years old) who are starting or attending kindergarten or primary school (first or second year) at the time of first assessment and their families are eligible. CHIP-Family consists of a separate one-day workshop for parents and children. The child workshop consists of psychological exercises based on the evidence-based cognitive behavioral therapy Fun FRIENDS protocol and sports exercises. The parent workshop focuses on problem prevention therapy, psychoeducation, general parenting skills, skills specific to parenting a child with CHD, and medical issues. Approximately 4 weeks after the workshop, parents receive an individual follow-up session. The baseline (T1) and follow-up assessment (T2 = 6 months after T1) consist of online questionnaires filled out by the child, parents, and teacher (T2 only). Primary outcome measures are the CBCL for children and the SCL-90-R for parents. DISCUSSION: This trial aims to test the effects of an early family-centered psychosocial intervention to meet the compelling need of young children with CHD and their families to prevent (further) problems. If CHIP-Family proves to be effective, it should be structurally implemented in standard care. TRIAL REGISTRATION: Dutch Trial Registry; NTR6063 on 23 August, 2016.

Neuropsychological outcomes in CHD beyond childhood: a meta-analysis.

BACKGROUND: Risk for neurodevelopmental delay in infants and children with CHD is well established, but longer-term outcomes are equivocal. A meta-analysis was conducted to establish whether cognitive deficits remain beyond childhood - into teenage and young adult years. Methods and results A total of 18 unique samples, involving adolescents, teenagers, and adults with CHD significant enough to require invasive intervention, and sourced through searches of Web of Science, MEDLINE, CINAHL Plus, and PsychInfo, met the inclusion criteria. These included the use of standardised neuropsychology tests across 10 domains of cognitive functioning and the reporting of effect size differences with controls. Reports of patients with chromosomal or genetic abnormalities were excluded. Pooled effect sizes suggested no significant differences between CHD samples and controls in terms of general intellectual ability and verbal reasoning. However, small-medium effects sizes were noted (0.33-0.44) and were statistically significant within the domains of non-verbal reasoning, processing speed, attention, auditory-verbal memory, psychomotor abilities, numeracy, and literacy with executive functioning also emerging as significant when one study outlier was excluded. We also included quality assurance statistics including Cochran's Q, T, and I2 statistics, leave-one-out analyses, and assessment of publication bias. These often suggested study variability, possibly related to the heterogeneity of diagnostic groups included, and different tests used to measure the same construct. CONCLUSIONS: Heterogeneity indicated that moderators affect cognitive outcomes in CHD. Nevertheless, deficits across cognitive domains were discerned, which are likely to have functional impact and which should inform practice with this clinical population.

A sibling-controlled, prospective study of outcomes at home and school in children with severe congenital heart disease.

OBJECTIVES: The objectives of this study were to compare behaviour problems and competencies, at home and school, in 7-year-old children with congenital heart disease with a sibling control group, to examine the prospective determinants of outcome from infancy, and to explore whether any gains were maintained in our sub-group of children who had participated in a previous trial of psychological interventions in infancy. METHODS: A total of 40 children who had undergone surgery to correct or palliate a significant congenital heart defect in infancy were compared (Child Behavior Checklist) with a nearest-age sibling control group (18 participants). Comparisons were made between sub-groups of children and families who had and had not participated in an early intervention trial. RESULTS: Problems with attention, thought and social problems, and limitations in activity and school competencies, were found in comparison with siblings. Teacher reports were consistent with parents, although problems were of a lower magnitude. Disease, surgical, and neurodevelopmental functioning in infancy were related to competence outcomes but not behaviour problems. The latter were mediated by family and maternal mental health profiles from infancy. Limited, but encouraging, gains were maintained in the sub-group that had participated in the early intervention programme. CONCLUSIONS: The present study is strengthened by its longitudinal design, use of teacher informants, and sibling control group. The patterns of problems and limitations discerned, and differential determinants thereof, have clear implications for interventions. We consider these in the light of our previously reported intervention trial with this sample and current outcomes at the 7-year follow-up.

A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families.

OBJECTIVE: To report on a randomized controlled trial of psychological interventions to promote adjustment in children with congenital heart disease and their families. METHOD: Following baseline assessment, 90 children (aged 4-5 years) and their families were randomly assigned to an Intervention or Control group before entering school. 68 (76%) were retained at 10-month follow-up. RESULTS: Gains were observed on measures of maternal mental health and family functioning. Although no differences were found on measures of child behavior at home or school, children in the intervention group were perceived as "sick" less often by their mother and missed fewer days from school. A regression model, using baseline measures as predictors, highlighted the importance of maternal mental health, worry and child neurodevelopmental functioning for child behavioral outcomes almost a year later. CONCLUSIONS: The intervention promoted clinically significant gains for the child and family. The program is of generalizable significance.

The impact of hyperemesis gravidarum on maternal mental health and maternal-fetal attachment.

BACKGROUND: In addition to physical health risks, it has been postulated that hyperemesis gravidarum (HG) - severe and persistent nausea and vomiting during pregnancy - can adversely affect maternal mental health and maternal-fetal attachment. METHODS: A prospective case-control design was used to compare psychological distress, social functioning and maternal-fetal attachment in 32 women with HG compared to 41 matched controls. RESULTS: Results suggested that while HG compromised some aspects of attachment early in pregnancy (7-16 weeks gestation), this negative effect was clinically small and had faded by follow-up (after 26 weeks gestation). Comparisons did, however, show more significant and persisting psychological distress for those who had HG. CONCLUSIONS: Pregnant women with HG appear to be at elevated risk of mental health difficulties during pregnancy, even when the symptoms of HG resolve. The development of a targeted intervention specifically designed to treat mental health difficulties associated with HG is recommended.

Autobiographical memory specificity, depression, and trauma in bipolar disorder.

OBJECTIVES: In a bipolar disorder (BD) sample, the present study investigated: (i) the prevalence of trauma; (ii) the specificity of autobiographical memory (AM); (iii) the influence of childhood trauma on AM specificity, current inter-episode depressive mood, and BD severity; (iv) if AM specificity moderates the influence of childhood trauma on current inter-episode depressive mood and BD severity. METHODS: Fifty-two participants were recruited from a geographically well-defined mental health service in Northern Ireland. The AM test, self-report measures of lifetime experience of trauma, childhood trauma, and depression were administered. Severity of BD was estimated utilizing a systematic tool for reviewing all available clinical data of participants. RESULTS: A high prevalence of trauma was found. A total of 94.2% (49/52) of participants reported experiencing a traumatic event in either childhood or adulthood. AM specificity was significantly lower than previous reports of such in major depression. However, whilst childhood trauma predicted current inter-episode depressive mood, childhood trauma was not predictive of BD severity or AM specificity. Moreover, the association between childhood trauma and depressed mood was not moderated by AM specificity. CONCLUSIONS: The findings of this study suggest a relationship between early psychosocial adversity and current inter-episode depressive mood in BD. In addition, levels of overgeneral AM are similar to that reported for depression, but are unrelated to childhood trauma, current inter-episode depressive mood, or BD severity. Clinical implications include the importance of routine assessment of trauma in BD and the need for adjunctive evidenced-based psychological therapies.

Effects of trauma on bipolar disorder: the mediational role of interpersonal difficulties and alcohol dependence.

OBJECTIVES: This study examined: (i) the prevalence of trauma in a bipolar disorder (BD) sample, and (ii) how trauma histories mediated by interpersonal difficulties and alcohol dependence impact on the severity of BD. The prevalence of posttraumatic stress disorder (PTSD) and its relationship to outcomes in BD were also examined. METHODS: Sixty participants were recruited from a geographically well-defined mental health service in Northern Ireland. Self-reported trauma histories, PTSD, interpersonal difficulties and alcohol dependence and were examined in relation to illness severity. RESULTS: A high prevalence of trauma was found. Trauma predicted the frequency of hospital admissions (R(2) = 0.08), quality of life (R(2) = 0.23) and inter-episode depressive symptoms (R(2) = 0.13). Interpersonal difficulties, but not alcohol dependence, appeared to play an important role in mediating these adverse effects. While only 8% of the sample met criteria for active PTSD, this comorbid disorder was associated with BD severity. CONCLUSIONS: This study indicates that awareness of trauma is important in understanding individual differences in bipolar presentations. The theoretical and clinical implications of evidence that trauma is related to more adverse outcomes in BD are discussed. The finding that interpersonal difficulties mediate the relationship between trauma and BD severity is novel. The need for adjunctive evidence-based treatments targeting interpersonal difficulties is considered.

Cognitive biases for trauma stimuli in people with schizophrenia.

OBJECTIVES: This study investigates whether cognitive biases related to trauma (physical and sexual trauma) are present in a sample of participants with a diagnosis of schizophrenia. METHOD: Fifty-three participants, with a DSM-IV diagnosis of schizophrenia, completed tasks of attentional and memory bias, followed by several trauma report questionnaires. Those who reported a history of sexual and/or physical trauma were compared with a 'non-specific/no-trauma' subgroup. The reliability of trauma reports was determined by comparing current data on the Trauma History Questionnaire to that gathered one year previously, for a subsample of participants. Concordance rates and kappa coefficients suggested moderate to high reliability for reports of sexual and physical trauma. Attentional bias was assessed by comparing colour-naming times on modified Stroops, of either a sexual or physical nature, with control Stroops with negative, positive and neutral emotionally valenced stimuli. A subsequent incidental recall memory task was then employed. RESULTS: High rates of sexual and/or physical trauma were found. Those who reported a history of sexual trauma evidenced a statistically significant increase in colour-naming times for sexual trauma stimuli, compared to both the 'physical trauma only' and the 'non-specific/no trauma' control groups. They also showed greater incidental recall of sexual trauma words in comparison to the other groups. Such a pattern was not, however, discerned for those reporting histories of physical trauma. CONCLUSIONS: Findings suggest cognitive schemata related to sexual trauma remains 'active' in those people with schizophrenia who report a related history.

Adjustment in children with intractable epilepsy: importance of seizure duration and family factors.

Seventy-five families of children with intractable epilepsy but without a severe learning disability (mean age 7 years 1 month, SD 2 years 6 months; range 2 to 12 years) who attended a regional paediatric neurology service, were surveyed. A postal questionnaire was used which included standardized measures of child and family adjustment; forty-eight families responded (64%; 31 males, 17 females). There was no significant difference between responders and non-responders in terms of age, sex, number of other chronic illnesses and disabilities, age at epilepsy diagnosis, seizure type, nor number of antiepileptic drugs currently prescribed (p > 0.05). The importance of including multidimensional measures of outcome was highlighted by the finding that epilepsy, pharmacological, and psychosocial factors were differentially associated with specific adjustment difficulties. Two factors appeared to be most pervasively implicated across a range of adjustment problems: frequency of rectal diazepam administration and family patterns of relating to each other (p < 0.05). It appeared that duration of seizures (as indicated by frequency of rectal diazepam administration), rather than the frequency of seizures per se, was more pernicious in terms of poor adjustment. Intrafamilial relations (degree of conflict/cohesion and soon) were not only associated with adjustment difficulties in the child, but also with the frequency of seizures themselves. Implications for psychological interventions in intractable epilepsy in childhood are highlighted.