Limond, Jennifer Alison; (2000) Childhood nephrotic syndrome: Children's and parents' illness perceptions and psychological sequelae. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

Childhood nephrotic syndrome is a chronic illness with an unpredictable course requiring long-term medication and treatments. In its mildest form children require steroids over long periods and regular hospital check-ups. In some cases children will experience relapses which require hospitalisation, while others will be unresponsive to steroids and will undergo aggressive chemotherapy treatments. In its most severe form children will have their kidneys removed and will receive dialysis. In the majority of cases children will experience obvious physical changes, such as swelling of the body and may be restricted in their activities. Investigations into the psychological impact of this illness for children and their families are not reported m the literature, although hospital staff working with these children have described anxiety and depression amongst children and their families. The aim of the current study was to explore the psychological sequelae of this disorder in both affected children and their parents. In addition, the potential explanatory value of identifying illness perceptions [Weinman, 1997 #464] as predictors of psychological outcome was examined. Fifty-seven families with children between the ages of 7 and 18 years, from a total population of one hundred and twenty-one attending a national centre for nephrotic syndrome, participated in the study. One parent and the affected child from each family completed the questionnaires. Open-ended questions derived from pilot interviews were included to obtain information about families' experiences of nephrotic syndrome. Standardised parent measures included the Illness Perceptions Questionnaire - carer's version, the Strengths and Difficulties Questionnaire, the Hospital Anxiety and Depression Scale and the Impact of Events Scale - Revised. Standardised child measures included the Illness Perceptions Questionnaire (adapted for children), the Spence Children's Anxiety Scale, the Birleson Depression Scale and the Children's Impact of Events Scale. Open-ended questions revealed a number of factors that appear to affect most of this population, with changes in the child's physical appearance, missing school and being unable to participate fully in activities being reported frequently. Subsequent difficulties such as the affected child being teased, bullied and excluded from social groups were also described by a substantial number of parents. Descriptive and statistical analyses identified elevated levels of anxiety and trauma symptomatology amongst parents, and increased levels of anxiety, depression and trauma symptoms amongst children. Parent and child ratings of psychological symptoms were moderately correlated. In addition, significant numbers of parents reported difficulties with their child's behaviour and these reports were significantly correlated with children's reports of psychological symptoms and parental levels of psychological symptoms. Parent and child ratings of perceived illness identity and consequences were highly correlated, while parents and children showed low levels of agreement as to the duration of the illness and controllability or likely cure of the illness. Multiple regression analyses indicated that children's illness perceptions were predictive of child psychological outcome and similarly, parents' illness perceptions were predictive of parent psychological outcome. This study indicates that children suffering from nephrotic syndrome and their parents are at increased risk of developing psychological difficulties. The Illness Perceptions model was found to be a useful construct with good explanatory power.

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