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Religious interpretations of suffering by parents of a child with spina bifida


This study is part of the multidisciplinary research program "Prognosis of Spina Bifida" of the Radboud University Nijmegen. In the framework of this program a retrospective study on fifty children with different types of spina bifida and their parents was conducted; the disciplines involved were child neurology, neuropsychology, child & family studies and empirical theology. The empirical theological part of this project investigates the extent to which parents of a child with spina bifida turn to religion when confronted with the diagnosis.

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This presentation will focus on the religious orientation called 'theodicy'. At critical moments, such as the confrontation with spina bifida, people express existential questions, doubts, and ultimate concerns (religious or secular) that people cherish may be challenged. Often the troubling question is: 'Why?', 'Why me or my child?', and "Why does God allow suffering?'. It seems that people cope differently with these questions in which they try to find a meaning of suffering. At these moments, attitudes toward theodicy can be stirred. Two questions will be raised in this presentation: 1. Which attitudes towards theodicy are present among parents of a child with spina bifida? 2. Is there a difference in support of these theodicy attitudes when different levels of church-involvement are taken into account?


With regard to the first question five attitudes (on the basis of factor analysis) towards theodicy were found among parents of a child with spina bifida. The average total score at a 5-points-scale (1 = 'total disagreement', 5 = 'total agreement') of the five attitudes indicate that parents on the whole reject the models of retribution (M = 1.6, SD = 0.66), apathy (M = 1.7, SD = 0.73), lament (M = 1.9, SD = 0.87), plan (M = 2.3, SD = 1.14) and doubt the compassion model, though also with an inclination towards rejection (M = 2.6, SD = 1.22). In answer to the second question significant variations of the means are found for the models of retribution (eta = 0.34), compassion (eta = 0.57) and plan (eta = 0.40) that indicate a far stronger support of the aforementioned models when church involvement increases, leading for instance to positive support of the compassion model of theodicy.


Interpretations of the scores on theodicy will be discussed.

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Correspondence to M van den Heuvel.

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van den Heuvel, M., Schilderman, H. & van der Ven, J. Religious interpretations of suffering by parents of a child with spina bifida. Fluids Barriers CNS 1 (Suppl 1), S46 (2004).

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