Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study.

OBJECTIVES: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of the entire family involved. Disease-related tools for the assessment of parental stress and adaptation are scarce. For that reason, the Pediatric Inventory for Parents (PIP), a disease-related measure, was translated into Dutch and its psychometric qualities were determined to prove its value. METHODS: The PIP and three other measures (State-Trait Anxiety Inventory, General Health Questionnaire and Parenting Stress Index, Short Form) were administered to 174 parents of 107 children diagnosed with cancer in three university medical centers in the Netherlands. RESULTS: Internal consistency (Crohnbach's alpha=0.94 and 0.95) and test-retest reliability (Pearson's r between 0.67 and 0.87) of the Dutch PIP total scales are satisfactory. Validity was illustrated by a high correlation between PIP-scores and anxiety and general stress. Confirmatory factor analysis showed acceptable fit to the data for the original four-factor and the one-factor models; the four-factor model showed slightly better fit. CONCLUSION: The PIP can be used in clinical practice to assess disease-related parental stress. Further psychometric testing is highly recommended.

A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease.

Parents of children with congenitally malformed hearts can suffer from stress as a result of the medical condition of their child. In this cross-sectional study, we aimed to describe levels of parental stress, and perceived vulnerability, in parents of children who underwent major cardiac surgery, by using both generic and disease-related measures for assessment. We included parents of children who underwent open-heart surgery over the period 2002 through 2007 in the Center for congenital Anomalies Heart Amsterdam/Leiden, abbreviated to provide the acronym CAHAL. In total, we assessed 114 mothers and 82 fathers of 131 children, using the Pediatric Inventory for Parents, short form, General Health Questionnaire, Parental Stress Index-Short Form, State-Trait Anxiety Index and the Child Vulnerability Scale. Compared to the reference groups of the instruments used, parents of children with congenitally malformed hearts did not report higher generic nor disease-related stress scores, and parenting levels of stress were also comparable to reference groups. State anxiety levels, however, were higher in mothers of children with congenitally malformed hearts. Both fathers and mothers reported significantly higher rates of perceived vulnerability than did parents of healthy children. Risk factors for increased anxiety and perceived vulnerability were found in the number of surgical procedures, the time past since the last procedure, and ethnicity. Severity of the lesion did not influence parental levels of stress, but parents of children with hypoplastic left heart syndrome did report higher levels of stress than other parents. Psychosocial screening of parents of children with congenitally malformed hearts is important in order to provide appropriate counselling to those parents most in need.

Health-related quality of life, cognitive functioning and behaviour problems in children with Langerhans cell histiocytosis.

BACKGROUND: This study was designed to evaluate generic and disease-specific health-related quality of life (HRQoL), cognitive functioning and behaviour problems of children with Langerhans Cell Histiocytosis (LCH). Furthermore, we investigated which medical determinants and social demographic factors were predictive for HRQoL, cognitive functioning and behavioural problems. PROCEDURE: In this cross-sectional case-control study 24 children ranging from 7 to 17 years of age were administered a HRQoL questionnaire, cognitive tests and behaviour ratings. In addition, a disease-specific HRQoL measure was developed and tested. Results were compared to a reference group consisting of healthy peers and to proxy-ratings by parents and teachers. RESULTS: Children with LCH reported a lower physical HRQoL than the reference group (P

Child and parental adaptation to pediatric stem cell transplantation.

GOALS OF WORK: Allogeneic pediatric stem cell transplantation (SCT) is a very intensive treatment with a high mortality and morbidity. The objectives of this study were to assess the (1) self- and proxy-reported health-related quality of life (HRQoL) compared to a norm group, (2) levels of parenting stress compared to a norm group, (3) differences in HRQoL and parenting stress pre- and post-SCT, and (4) effect of child age and parenting stress on self- and proxy-reported HRQoL pre- and post-SCT. MATERIALS AND METHODS: Pre- and on average 10 months post-SCT, 21 children and adolescents and their parent(s) completed questionnaires on HRQoL and the mothers completed a measure of parenting stress. MAIN RESULTS: Post-SCT, home functioning, physical functioning, and total HRQoL scores were lower than the norm group. We found stable HRQoL scores over time with the exception of the domain home functioning, which was rated lower post-SCT than pre-SCT. Parents reported lower HRQoL scores than the children pre- and post-SCT and younger children experienced better HRQoL than older children. Parenting stress was higher post-SCT than pre-SCT and high levels of parenting stress were predictive of poor parental ratings of child HRQoL post-SCT. CONCLUSIONS: Ongoing psychosocial assessment post-SCT is necessary to target children with a lowered HRQoL and parents who experience elevated parenting stress who may be in greater need of more supportive care.

Assessment of parental psychological stress in pediatric cancer: a review.

OBJECTIVES: We present an overview of the literature between 1997 and 2007 on parental stress reactions following the diagnosis of childhood cancer and we evaluate methodological strengths and weaknesses of the studies. METHODS: PubMed, PsychInfo, and Cinahl databases were used. Sixty-seven were included in the review. RESULTS: The conceptualization of parental stress and timing of assessment varies considerably between the studies, which makes comparison difficult. Most emotional stress reactions are seen around the time of diagnosis, with mothers reporting more symptoms than fathers. As a group, parents seem relatively resilient, although a subset of parents reports continuing stress even up to 5 years or more postdiagnosis. CONCLUSIONS: The authors recommend clear definitions of parental stress, fixed points in time to assess parental stress, and an approach that highlights both parental strengths and weaknesses. Improved assessment can contribute to tailoring psychological care to those parents most in need.