Measuring perceived benefit and disease-related burden in young cancer survivors: validation of the Benefit and Burden Scale for Children (BBSC) in the Netherlands

Item does not contain fulltextPURPOSE: Perceiving favourable changes from one's illness may go hand in hand with experiencing harmful psychosocial effects. Each of these constructs should be considered when examining children's levels of psychological adjustment following stressful life events. A paediatric instrument that accounts for both positive and negative impact of stressful events has not been investigated in The Netherlands before. The aim of the study was to investigate psychometric properties of the Dutch version of the Benefit and Burden Scale for Children (BBSC), a 20-item questionnaire that intends to measure potential benefit and burden of illness in children. METHODS: Dutch paediatric survivors of childhood cancer aged 8-18 (N = 77) completed the BBSC and other psychological questionnaires: Pediatric Quality of Life Inventory (health-related quality of life), State-Trait Anxiety Inventory for Children (anxiety), Children's Revised Impact of Event Scale (posttraumatic stress) and Strengths and Difficulties Questionnaire (behavioural functioning). Reliability and validity were evaluated. RESULTS: Internal consistency (Cronbach's alpha, benefit 0.84, burden 0.72), test-retest reliability (benefit r = 0.74, burden r = 0.78) and homogeneity (mean inter-item correlation, benefit r = 0.34, burden r = 0.22) were satisfactory. Burden was associated with HRQoL (-), anxiety (+), posttraumatic stress symptoms (+) and behavioural problems. Benefit did not correlate with the psychological outcomes. CONCLUSIONS: The Dutch version of the BBSC shows promising psychometric properties. Perceived benefit and disease-related burden are distinct constructs; both should be considered when examining children's psychological adjustment to potentially traumatic experiences. The BBSC may be useful as monitoring and screening instrument

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 nee

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. Copyright (C) 2009 John Wiley & Sons, Ltd

Multiple child food hypersensitivity impacts positive adjustment in parents

© 2017, Springer Science+Business Media New York. The physical impacts of food hypersensitivities (e.g. food allergy, food intolerance) encompass wide ranging but individually specific reactions. In contrast, the psychological impact of such illnesses extends beyond the individual who suffers the sensitivity. No Australian studies have examined the psychosocial impact of parenting a child with food hypersensitivities. The aim of this study was to ascertain differences in the psychosocial profile of parents raising a food hypersensitive child. Australian parents were targeted through three national support organisations and answered questions regarding their psychological health. Of a total of 990 respondents, 599 had children. These families comprised 1316 children aged 0–18 (M = 7.63 years) and more than half (n = 393) of these families were managing a child with a food hypersensitivity. Parents showed no differences in measured distress. In contrast, positive adjustment was higher for parents of food intolerant children and children with both food allergy and food intolerance, compared to those with non-food hypersensitive children. Moreover parents of children with combined food hypersensitivities reported a greater degree of positive change. The finding that parents of food hypersensitive children were not reporting higher levels of stress than parents without a food hypersensitive child is in stark contradiction to international studies examining both food hypersensitivity and parents of children with a chronic disease more generally. However, it appears that the complexity of the food hypersensitivity had a positive impact on adjustment with parents of children with multiple types of food hypersensitivity reporting greater positive adjustment outcomes