Do caregivers' perspectives matter? Working alliances and treatment outcomes in trauma-focused cognitive behavioural therapy with children and adolescents.

Background: Caregivers play a key role in the success of trauma-focused cognitive behavioural therapy (TF-CBT). Yet, the effect of their alliance on treatment outcomes besides the other parties in treatment has hardly been studied. Objective: This study examined the working alliance (WA) of therapists, patients and caregivers in TF-CBT and its contribution on treatment outcome over time. Methods: N = 76 children and adolescents (mean age = 12.66 years, range 7-17, M/F ratio: .43) participated in the TF-CBT arm of a randomized controlled trial. The WA was assessed with the Working Alliance Inventory Short Version (WAI-S) at two measurement points, while symptom level of posttraumatic stress symptoms (PTSS) was assessed with the Clinician-Administered PTSD Scale for Children and Adolescents (CAPS-CA). Paired sample t-tests, intraclass correlations (ICC), and mixed-effects regression models for longitudinal data were performed. Results: The alliance rating was high across all informants, with caregivers achieving the highest rating. The average level of cross-informant agreement on the alliance was low between therapists and caregivers (ICC = .26) and moderate between therapists and patients (ICC =.65). A significant contribution of an alliance improvement to the reduction of PTSS over time was found in each of the two tested models: therapists with patients model (b = .682) and therapists with caregivers model (b = .807). However, these effects were not detected with all four perspectives in one comprehensive model. Conclusion: In summary, the potential of caregivers' views should receive more attention in the therapeutic process of trauma-focused therapy.

Antecedentes: los cuidadores desempeñan un papel clave en el éxito de la terapia cognitivo-conductual centrada en el trauma (TF-CBT por sus siglas en inglés). Sin embargo, el efecto de su alianza en los resultados del tratamiento, aparte de los otros participantes en el tratamiento, apenas se ha estudiado.Objetivo: Este estudio examinó la alianza de trabajo (WA por sus siglas en inglés) de terapeutas, pacientes y cuidadores en TF-CBT y su contribución en el resultado del tratamiento a lo largo del tiempo.Métodos: N = 76 niños y adolescentes (edad media = 12,66 años, rango 7-17, relación M/F: 0.43) fueron parte del brazo que recibía TF-CBT en un ensayo controlado aleatorio. La WA se evaluó con la versión abreviada del Inventario de la Alianza de Trabajo (WAI-S por sus siglas en inglés) en dos mediciones, mientras que el nivel sintomático de los síntomas de estrés postraumático (PTSS por sus siglas en inglés) fue evaluado con la Escala de TEPT administrada por el profesional clínico para niños y adolescentes (CAPS-CA por sus siglas en inglés). Se realizaron pruebas t de muestras pareadas, correlaciones intraclase (ICC por sus siglas en inglés) y modelos de regresión de efectos mixtos para datos longitudinales.Resultados: La calificación de la alianza fue alta en todos los informantes, con los cuidadores logrando la calificación más elevada. El nivel promedio de acuerdo entre informantes sobre la alianza fue bajo entre terapeutas y cuidadores (ICC = .26, p = .002) y moderado entre terapeutas y pacientes (ICC = .65, p = <.001). Se encontró una contribución significativa de una mejora de la alianza a la reducción de PTSS a lo largo del tiempo en cada uno de los dos modelos probados: modelo de terapeutas con pacientes (b = ­.682; p = .039) y modelo de terapeutas con cuidadores (b = ­.807; p <.001). Sin embargo, estos efectos no se detectaron con las cuatro perspectivas en un modelo integral.Conclusión: en resumen, el potencial de las opiniones de los cuidadores debería recibir más atención en el proceso terapéutico de la terapia centrada en el trauma.

Social support, negative maltreatment-related cognitions and posttraumatic stress symptoms in children and adolescents.

Social support by family, friends and significant others is known to buffer the impact of adverse life events on children's well-being and functioning, however little is known about pathways explaining this association. We investigated whether maltreatment-related cognitions mediate the association between social support and posttraumatic stress symptoms (PTSS). Furthermore, age was introduced as moderator. We assessed the history of maltreatment in 200 maltreated children and adolescents (age 8-17 years) using a semi-structured interview. Participants' perceived current social support, maltreatment-related negative cognitions related to the subjectively "worst" experience of maltreatment and PTSS during the past month were assessed using self-report questionnaires. A set of mediation analyses demonstrated, that negative maltreatment-related appraisals mediated the relation between perceived social support and PTSS. The hypothesized negative associations of social support with PTSS and dysfunctional cognitions did not differ between children (8-11;11 years) and adolescents (12-17;11 years). Thus, the protective function of social support after maltreatment can be explained by fewer negative beliefs maltreated youth have about themselves and the world. These results provide support to models of social-cognitive processing and emphasize the importance of cognitive coping in regard to episodes of maltreatment which can be shaped within social interactions with non-abusive caregivers, friends, and significant others.

Posttraumatic symptoms and cognitions in parents of children and adolescents with PTSD.

Parents may develop symptoms of distress and dysfunctional cognitions in response to their child's exposure to traumatic events. Additionally, they may also be affected by their own traumatic experiences. This study investigated the frequency of traumatic experiences and of symptoms of posttraumatic stress and depression in a sample of parents of children and adolescents with posttraumatic stress disorder (PTSD). Furthermore, we explored the association of parental symptoms with their dysfunctional cognitions related to their child's trauma. Parents (N = 113) of children and adolescents with PTSD completed the Posttraumatic Diagnostic Scale (PDS), the Beck depression inventory (BDI-II), the State-Trait Anxiety Inventory, and the Posttraumatic Cognitions Inventory. Correlations between symptom measures and dysfunctional cognitions were calculated. The majority (78.8 %) of the parents reported their own potentially traumatic experiences. Furthermore, 33.6 % evaluated their child's trauma as the worst event, 34.5 % rated their own experiences as their worst event, and 26.5 % indicated that their own worst traumatic event was the same type as their child's trauma. The frequency of clinically elevated parental symptoms on the PDS was 48.6 %, and on the BDI-II 32.7 %. Parental symptoms were independent of the reference person of the parental traumatic index event. However, they did correlate significantly with their dysfunctional cognitions (between r = 0.44 and 0.69, p < 0.01). Many parents report their own traumatic experiences and a significant proportion has its own clinically relevant symptoms of distress. Parental psychological symptoms are moderately associated with their dysfunctional cognitions. The results emphasize the need to consider parental distress when treating pediatric PTSD.

Obtaining a genetic diagnosis in a child with disability: impact on parental quality of life.

Recent progress in genetic testing has facilitated obtaining an etiologic diagnosis in children with developmental delay/intellectual disability (DD/ID) or multiple congenital anomalies (MCA) or both. Little is known about the benefits of diagnostic elucidation for affected families. We studied the impact of a genetic diagnosis on parental quality of life (QoL) using a validated semiquantitative questionnaire in families with a disabled child investigated by array-based comparative genomic hybridization (aCGH). We received completed questionnaires from 95 mothers and 76 fathers of 99 families. We used multivariate analysis for adjustment of potential confounders. Taken all 99 families together, maternal QoL score (percentile rank scale 51.05) was significantly lower than fathers' QoL (61.83, p = 0.01). Maternal QoL score was 20.17 [95% CI (5.49; 34.82)] percentile rank scales higher in mothers of children with diagnostic (n = 34) aCGH as opposed to mothers of children with inconclusive (n = 65) aCGH (Hedges' g = 0.71). Comparison of these QoL scores with retrospectively recalled QoL before aCGH revealed an increase of maternal QoL after diagnostic clarification. Our results indicate a benefit for maternal QoL if a genetic test, here aCGH, succeeds to clarify the etiologic diagnosis in a disabled child.

Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery.

BACKGROUND: Psychological morbidity in individuals with cystic fibrosis (CF) and their caregivers is common. The Cystic Fibrosis Foundation (CFF) and European Cystic Fibrosis Society (ECFS) Guidelines Committee on Mental Health sought the views of CF health care professionals concerning mental health care delivery. METHODS: An online survey which focused on the current provision and barriers to mental health care was distributed to CF health care professionals. RESULTS: Of the 1454 respondents, many did not have a colleague trained in mental health issues and 20% had no one on their team whose primary role was focused on assessing or treating these issues. Insufficient resources and a lack of competency were reported in relation to mental health referrals. Seventy-three percent of respondents had no experience with mental health screening. Of those who did, they utilized 48 different, validated scales. CONCLUSIONS: These data have informed the decision-making, dissemination and implementation strategies of the Mental Health Guidelines Committee sponsored by the CFF and ECFS.

The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease.

PURPOSE: Heart diseases are often associated with residual injuries, persisting functional restrictions, and long-term sequelae for psychosocial development. Currently, there are no disease-specific instruments to assess the health-related quality of life (HrQoL) of pre-school children. The aims of this study were to develop a parent proxy instrument to measure the HrQoL of children aged 3-7 years with a heart disease and to confirm its validity and reliability. METHODS: Items from the Preschool Pediatric Cardiac Quality of Life Inventory (P-PCQLI) were generated through focus groups of caregivers. In a pilot study, comprehensibility and feasibility were tested. Five subdimensions were defined theoretically. Psychometric properties were analysed within a multicentre study with 167 parental caregivers. RESULTS: The final 52-item instrument contains a total score covering five moderately inter-correlated dimensions. The total score of the questionnaire showed a very high internal consistency (Cronbachs' α = 0.95). Test-retest correlation was at r tt = 0.96. External validity was indicated by higher correlations (r = 0.24-0.68) with a generic paediatric quality of life questionnaire (KINDL) compared to the Strengths and Difficulties Questionnaire (r = 0.17 to 0.59). Low P-PCQLI total scores were significantly associated with inpatient as opposed to outpatient treatment (t = 6.04, p < .001), with at least moderate disease severity ((t = 5.05, p < .001) NYHA classification) and with poorer prognosis (t = 5.53, p < .001) as estimated by the physician. CONCLUSIONS: The P-PCQLI is reliable and valid for pre-school children with a heart disease. It could be used as a screening instrument in routine care, and for evaluation of HrQoL outcomes in clinical trials and intervention research.

Measuring health-related quality of life in clinical trials in cystic fibrosis.

The inclusion of health-related quality of life (HRQoL) as an outcome measure in cystic fibrosis (CF) clinical trials can supply important patient-reported information not captured by other endpoints. Both an appropriate HRQoL measure and sound methodology are required in order to draw valid inferences about treatments and HRQoL. This paper provides the current consensus of the HRQoL Outcomes Group. Particular consideration has been given to the appropriateness of measurement scales, the rationale for including specific domains as endpoints, the importance of considering baseline ceiling effects and the difficulties of data interpretation. Guidance is provided on HRQoL measurement in National and European CF clinical trials.

Utilization of psychosocial care and oncological follow-up assessments among German long-term survivors of cancer with onset during adolescence.

BACKGROUND: Survivors of pediatric cancer are at increased risk for medical and psychosocial late effects. This study retrospectively investigated the utilization of oncological and psychosocial care by former adolescent cancer patients (≥ 5 years since cancer diagnosis) in Germany. PATIENTS: Based on data of the German Childhood Cancer Registry (N=1 876 survivors of cancer with an age at diagnosis between 15 and 18 years), the study cohort comprised 820 survivors of adolescent cancer (time since diagnosis: M=13.7, SD=6.0, age at follow-up: M=30.4, SD=6.0 years). METHOD: Survivors of adolescent cancer completed standardized questionnaires measuring symptoms of posttraumatic stress, depression and anxiety as well as items on their utilization of medical and psychosocial care. RESULTS: More than a quarter (26.2%) of the survivors was no longer attending regular oncological follow-up assessments. Less than half of the survivors (44.4%) had received psychosocial care, mostly during their in-patient cancer treatment and their post-acute rehabilitation phase. Out of 184 survivors showing clinically relevant symptoms of posttraumatic stress, anxiety and/or depression at time of the study, 12.0% received psychosocial care and 13.6% took psychotropic medication. CONCLUSION: It should be studied further why only a small proportion of the survivors showing clinically relevant symptoms received psychosocial or psychopharmacological treatment. Systematic oncological follow-up assessments should take psychological late effects into greater account.

A pilot study of social competence group training for adolescents with borderline intellectual functioning and emotional and behavioural problems (SCT-ABI).

BACKGROUND: Emotional and behavioural problems as well as a lack of social competence are common in adolescents with borderline intellectual functioning and impair their social and vocational integration. Group interventions specifically developed for this target group are scarce and controlled evaluation studies are absent. METHODS: A cognitive-behavioural group training (Social Competence Training for Adolescents with Borderline Intelligence) was developed and its effectiveness was examined in students attending special vocational schools. A total of 77 adolescents with borderline intelligence were randomised either to the intervention (n=40) or to the control group (n=37). Outcome measures at post-treatment and at a 6-month follow-up comprised self-reports, caregiver reports and behavioural observations. RESULTS: The adolescents in the intervention group showed temporally stable improvement in their social competence, especially in social problem solving (F=17.6, P<0.001) and attainment of individual behavioural goals in everyday life (self-reports: F=15.9, P<0.001; caregiver reports: F=87.9, P<0.001). Effects of the intervention on other outcomes such as problem-solving competence and skills performed in standardised role plays were weak or absent. CONCLUSIONS: Social Competence Training for Adolescents with Borderline Intelligence is a promising treatment for adolescents with borderline intellectual functioning and associated emotional/behavioural symptoms. Further studies examining long-term effects on the participants' social and vocational integration are needed.

The impact of an inpatient family-oriented rehabilitation program on parent-reported psychological symptoms of chronically ill children.

OBJECTIVE: To investigate the change of psychological symptoms and quality of life in children and adolescents with congenital heart disease, cancer, or cystic fibrosis after a family-oriented inpatient rehabilitation program. METHODS: 302 participants in the intervention (aged 4-17 years, mean=8.7) were assessed using standard questionnaires at admission to the rehabilitation program, at discharge, and 6 months post discharge. Parent-reported behavioral and emotional symptoms were compared to a healthy control group from the National Health Interview and Examination Survey for Children and Adolescents (n=903). RESULTS: At admission, 27.5% of patients showed abnormal levels on the total difficulties score of the Strengths and Difficulties Questionnaire - parent version (SDQ), while an additional 16.9% had slightly elevated symptoms (relative risk=2.16). Patients' psychological symptoms were negatively correlated with their quality of life (QoL) and with parental QoL. After rehabilitation, the patients' symptoms improved significantly, and the improvement persisted for 6 months in those patients who could be followed. CONCLUSIONS: The rehabilitation program can be considered a promising strategy to improve the patients' psychological adaptation.

Impact of a family-oriented rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children.

OBJECTIVE: To evaluate the impact of a family-oriented inpatient rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children and to assess the association between these problems and quality of life. METHODS: A total of 259 healthy children (4-16 years, M = 8.6 years, SD = 3.3) with a chronically ill sibling were enrolled in the study. Parents filled in the Strengths and Difficulties Questionnaire, while the children answered a self-report quality of life instrument (LQ-KID) at the time of admission and discharge from the clinic and at a 6-month follow-up. Comparisons were performed with a matched control group from the German general population (n= 777). RESULTS: Significant behavioural or emotional symptoms were found in 30.5% of the healthy siblings, the relative risk of having elevated scores being 2.2 compared with the control group. Symptoms were inversely correlated with quality of life (r=-0.42). During the inpatient rehabilitation, symptoms decreased significantly to a normal level. Similarly, quality of life significantly improved, except in the dimension family relations. CONCLUSIONS: Family-oriented inpatient rehabilitation is a promising approach to improve the mental health of children with a chronically ill sibling.

Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.

BACKGROUND: Parents of chronically ill children face numerous burdens in daily life, which can impair their quality of life (QoL) significantly. Therefore in family-oriented rehabilitation, not only the children themselves, but also their parents receive interventions. These aim at stabilizing parents both mentally and physically to enable them to support their children in the best possible way. This study investigates the effects of an inpatient family-oriented rehabilitation program on the QoL of parents of chronically ill children. PATIENTS: A consecutive sample of 231 mothers and 155 fathers of children suffering from cancer, cardiac diseases or cystic fibrosis participated in the study. METHOD: In a prospective longitudinal study, parental QoL was repeatedly assessed using the Ulm Quality of Life Inventory for Parents (ULQIE) at three different time points: admission to the rehabilitation clinic, discharge after four weeks of inpatient treatment, and at a six-month follow-up. RESULTS: Parental QoL increased markedly during rehabilitation treatment (mothers eta (2)=.326, fathers eta (2)=.249). Moreover, six months after the intervention, parental quality of life was still markedly improved compared to baseline assessment (mothers eta (2)=.259, fathers eta (2)=.069). The child's diagnosis had no effect on the level and course of parental QoL. CONCLUSIONS: Taking part in family-oriented rehabilitation can improve the QoL of parents of children suffering from cancer, cardiac diseases or cystic fibrosis. Such programs could be expected to affect the way chronically ill children cope with their condition and this should be examined in future studies.

Evaluation of psychiatric liaison-services for adolescents in residential group homes.

OBJECTIVE: Adolescents in residential care are a high-risk population for psychiatric disorders. Due to limited access to outpatient treatment, crises often result in psychiatric hospitalizations. These crises are often accompanied by termination of supportive relationships, which increases the risk for further problems. To minimize hospitalizations and to stabilize the psychological state of these adolescents, we developed and evaluated a home-treatment intervention program based on psychiatric liaison-services and compared it to standard medical care (SMC). METHODS: The intervention was applied in 11 German residential group homes (N = 288, M = 14.1 years, SD = 2.7), while adolescents from 15 institutions (N = 336, M = 13.6 years, SD = 3.0) served as a comparison group (CG) (SMC). The frequency and duration of psychiatric inpatient treatment episodes were documented and caregiver-reported behavioural symptoms were assessed at baseline and at 6 and 12 months postintervention. RESULTS: In both groups, less than 10% of the adolescents were admitted to psychiatric wards. Compared to SMC, hospitalizations were of shorter duration in the intervention group (IG) (1.30 vs 2.47 days per head within 12 months, p < .001). In both groups, behavioural problems decreased overtime. CONCLUSIONS: Applying a home-treatment intervention program to children in residential care helps to stabilize the developmental course of this high-risk population by shortening psychiatric inpatient treatment.

A randomized controlled trial of consensus-based child abuse case management.

OBJECTIVE: This study evaluates the effects of expert-assisted child abuse and neglect case management in the German child welfare and healthcare system as perceived by the case workers themselves. METHODS: Case workers with different professions (social workers, counselors, clinic-based and office-based psychotherapists, and physicians) participated in the study. They were responsible for 80 child protection cases which were enrolled for the study and randomly assigned either to expert-assisted case management or to case management as usual. The sample represented a broad range of child protection problems with alleged or confirmed physical abuse, sexual abuse, emotional abuse and/or neglect. The victims were between 0 and 18 years of age. The intervention group received two to six case review sessions provided by child protection experts from outside of the case workers' own institution within 6 months after referral of the case. The case workers' satisfaction with the perceived degree of child protection, their level of certainty in the process of investigation, risk assessment and intervention planning, the quality of inter-institutional communication, and the involvement of children and families were evaluated. RESULTS: Overall, only few between-group differences indicated effects of the intervention program. There was a statistical tendency toward more satisfaction with the perceived degree of child protection in the intervention group. Certainty in the estimation of suspected child abuse decreased significantly in the intervention group, compared with the control group, whereas certainty with respect to intervention planning increased. There were no group differences in the estimation of inter-institutional communication. Case workers in the intervention reported significantly fewer legal prosecutions of the perpetrators than case workers without expert assistance. However, the involvement of children in planning the interventions was significantly lower in the intervention group. CONCLUSIONS: Expert-assisted case management may change the case workers' perception of the evidence for abuse and guide their interventions to provide child protection. Modifications of the method should consider improved participation of the child.

[Quality of life with cystic fibrosis--aspects of age and gender]. / Alters- und geschlechtsbezogene Betrachtung der Lebensqualität bei Mukoviszidose.

BACKGROUND: Quality of life (QoL) becomes more important as primary criterion of quality management in time consuming therapy programs of chronic progressive diseases like cystic fibrosis (CF). Measuring weighted satisfaction of life allows to evaluate subjective aspects of health-related and general quality of life. PATIENTS/METHOD: QoL of 254 CF-patients (age 16-45 years, mean 29.4 years, mean FEV1 62.5 % of the predicted, mean BMI 20.5) was evaluated with the Questions on Life Satisfaction (FLZ(M)), a multi-dimensional QoL questionnaire. QoL results of patients are compared with the QoL of a healthy population. RESULTS: Subjective contentment in health-related life dimensions of German adolescents and adults with CF is significantly lower compared with healthy peers. Women with CF compensate their increased restriction in health-related dimensions by high satisfaction in the dimensions housing and partnership. Women with CF > 35 years have a risk for low life satisfaction, men of this age group are not restricted. CONCLUSIONS: Therapy programs should take into account the subjective perceived QoL. Routine monitoring of QoL can indicate patients with special needs.

Development and evaluation of a multi-family psychoeducational program for cystic fibrosis.

The development, implementation and evaluation of a psychoeducational program for families with a child affected by cystic fibrosis (CF) is described. Aim of the program was to strengthen the families' coping with CF-related problems and to improve adherence with chest physiotherapy. Sixteen families from an outpatient CF-clinic participated. Parents and children were educated both individually as well as together in multi-family groups. Teaching, practicing and group discussions were balanced in each session. In a pre-post-design the following variables were evaluated: parental coping, parental health beliefs, children's coping, adherence, and knowledge about CF. The parental coping patterns and health beliefs remained unchanged in the study group. Children developed more search for social support, whereas their competence and optimism decreased and withdrawal increased slightly as perceived by the parents. There is a subgroup with poor family functioning and adherence at pretest which improves after the intervention.Family-centered psychoeducational intervention may be a promising supportive strategy for children with CF, especially if it is dedicated to families with poor adaptation to the disease.

Comparison of three generic questionnaires measuring quality of life in adolescents and adults with cystic fibrosis: the 36-item short form health survey, the quality of life profile for chronic diseases, and the questions on life satisfaction.

OBJECTIVE: To compare different generic instruments in measuring quality of life and to demonstrate dimensions of quality of life (QL) in patients with cystic fibrosis (CF). METHODS: The short-form-36 health survey (SF-36), the quality of life profile for chronic diseases (PLC), and the questions on life satisfaction (FLZ(M)) were simultaneously employed in a cross-sectional study with 70 adolescents and adults with CF. The different concepts of the measures were compared. Internal consistency (Cronbach's alpha), convergent and construct validity (correlation patterns, common factor analysis), and external validity (correlations with symptom and pulmonary function scores, with intensity of therapy; comparisons with healthy peers) of the three instruments were investigated. RESULTS: Similar reliability, but different validity of the questionnaires are demonstrated. Seventy-three percent of the total variance across the three measures could be explained with a seven-factor-solution: (1) physical functioning (19.3% of total variance), (2) mental health (19.3%), (3) social integration (7.5%), (4) role function/pain (7.5%), (5) economic/material living conditions (7.5%), (6) partnership/family (6.7%) and (7) anxiety (5.2%). DISCUSSION: The different validity of the instruments has to be considered in chosing a questionnaire appropriate to the purpose of measuring. Shortcomings of each instrument can be overcome by multimethod designs and by developing disease-specific scales.

Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life.

OBJECTIVE: Considering coping as dynamic process within the family, effects of gender and diagnosis are investigated. Dissimilarity within couples in coping with childhood cancer is studied longitudinally in its effects on quality of life of mothers, fathers, and the sick children. METHODS: A total of 108 parents out of 54 complete families participated in a prospective study. Twenty-five families had a child newly diagnosed with cancer, 29 families had a child newly diagnosed with juvenile diabetes or epilepsy. The Coping Health Inventory for Parents, the Trier Coping Scales, and the Ulm Quality-of-Life Inventory for Parents were employed 1-2 weeks after diagnosis and again 10-12 weeks after diagnosis. RESULTS: In face of childhood cancer, parents develop more rumination, defense, and information seeking, and less social support seeking strategies compared to the control group. Mothers report more frequent and more effective coping compared with fathers, but mothers and fathers do not differ in their self-reported quality of life. No convergence within couples could be demonstrated in most of the corresponding coping styles. The strongest correlation between mothers and fathers appeared in the religious coping style (r=0.60, p<0.001). Coping dissimilarity within couples in social support seeking and religion is correlated with an improvement of parental quality of life. Parental dissimilarity in information seeking is correlated with a decrease in the child's quality of life. CONCLUSION: Coping dissimilarities between fathers and mothers have differential effects on the family members. For this reason, psychosocial interventions should support dis-synchrony when it appears adaptive, and they should help parents to overcome those differences that negatively affect their child.

[Adaptation of parents to the diagnosis of a chronic disease in their child]. / Adaptation von Eltern an eine chronische Erkrankung ihres Kindes nach der Diagnosestellung.

The course and the adaptivity of parental coping with a chronical disease in their child (leukemia, solid tumors, diabetes or epilepsy) was studied during the first three months after diagnosis. 66 parents answered questionnaires to their coping and their quality of life as well as to the perceived quality of life of their children 1-2 weeks and again 8-12 weeks after diagnosis. As coping was stable, the parents' and children's quality of life increased over time. Coping strategies using communication and social support improved the physical well-being of the parents. Family orientation and optimism are helpful for parents and children, too, but rumination decreased emotional well-being of the parents. Psychosocial care for families with a chronically ill child should improve open communication and social orientation in an early stage of the disease and should try to change maladaptive cognitive reactions.

[Psychosocial aspects of beta-thalassemia: distress, coping and adherence]. / Psychosoziale Aspekte der beta-Thalassämie: Krankheitserleben, Coping und Therapiemitarbeit.

BACKGROUND: Longtime outcome in case of thalassemia depends on the patients' adherence in home treatment to reduce hemosiderosis. This study describes the patients' perspective, their typical coping strategies, health related locus-of-control-beliefs and psychosocial influences on adherence. PATIENTS AND METHODS: A battery of questionnaires was employed to 43 patients with thalassemia major (3 to 26 years old) treated in Germany according to the german multicenter study respectively their parents: the Ulm Thalassemia Inventory, the KIDCOPE, the Multidimensional Health Locus of Control Scales and the Giessen Complaint List. Clinical symptoms of hemosiderosis were correlated with psychosocial variables. RESULTS: The patients feel more distressed from their treatment than from their illness itself. They react to disease-related distress with a variety of coping strategies. Some of the most frequent coping strategies are maladaptive, indicating feelings of helplessness. Internal locus-of-control-beliefs were low and fatalistic locus-of-control-beliefs were high compared with other clinical groups. The self-reported adherence to the iron chelation treatment is correlated with age, gender, age at the start-point of the treatment and emotional distress. Complaints, coping strategies and locus of control are independent from adherence as well as from hemosiderosis. CONCLUSION: Patients with thalassemia major need more information about their disease and about the benefits of iron chelation therapy. Additional psychosocial support should reduce emotional distress, strengthen coping competence and lead to a better integration of therapy in daily life.