Stress and Coping in Parents of Children and Adolescents with Spinal Muscular Atrophy

Abstract

Background:

Chronic illness and disability is not only associated with higher rates of behavioural problems in children, but also parental stress which requires active coping. The aim of the study was to analyse stress and coping, as well as their mediating variables, in parents of children and adolescents with Spinal Muscular Atrophy (SMA).

Method:

96 children and adolescents with SMA aged 6;0 to 18;11 years were compared to 59 age, sex and SES matched controls. Parental stress was measured with the QRS, coping with the F-COPES and social support with the F-SOZU questionnaires.

Results:

Parental stress was significantly higher in the SMA families for the total score and all subscales of the QRS. Stress was higher in families with severely affected SMA types I and II. The greatest percentage of variance contributing to stress could be explained by lack of social support, degree of disability and behavioural problems in the child. Although social support was reduced, the actual coping abilities of the families did not differ.

Conclusion:

Families with children and adolescents with SMA show high degrees of stress and strain which are associated with the severity of the disease, reduced social support and child behaviour. Despite these stresses they manage and cope no differently from families with healthy children.

Zusammenfassung

Hintergrund:

Chronische Erkrankungen und Behinderungen sind nicht nur mit höheren Raten von Verhaltenssymptomen bei Kindern assoziiert, sondern auch mit elterlichem Stress, der eine aktive Bewältigung erfordert. Das Ziel der Studie war es, Belastung, Bewältigung sowie vermittelnde Variablen bei Eltern von Kindern und Jugendlichen mit spinaler Muskelatrophie (SMA) zu analysieren.

Patienten:

96 Kinder und Jugendliche im Alter von 6;0 bis 18;11 Jahren wurden mit 59 Kontrollen verglichen, die nach Alter, Geschlecht und sozioökonomischem Status parallelisiert wurden. Elterliche Belastung wurde mit dem QRS, Coping mit dem F-COPES und soziale Unterstützung mit dem F-SOZU-Fragebogen gemessen.

Ergebnisse:

Elterliche Belastung war signifikant höher in SMA-Familien für alle Skalen des QRS. Elterlicher Stress war höher bei Kindern mit schwereren SMA-Typen I und II. Elterliche Belastung war durch fehlende soziale Unterstützung, Schweregrad der SMA und Verhaltenssymptome der Kinder bedingt. Obwohl die soziale Unterstützung reduziert war, unterschied sich die elterliche Bewältigung nicht von den Kontrollen.

Schlussfolgerung:

Familien mit Kindern und Jugendlichen mit SMA zeigen eine hohe Belastung, die mit dem Schweregrad der Störung, reduzierter sozialer Unterstützung und kindlichen Verhaltenssymptomen assoziiert sind. Trotz des hohen Stresses leisten Eltern eine gute Bewältigung – genauso wie Familien mit gesunden Kindern.

Key words

parental stress - parental coping - QRS questionnaire - F-COPES questionnaire - chronic ill children - chronic disabled children

Schlüsselwörter

elterlicher Stress (Belastung) - elterliches Coping (Bewältigung) - QRS-Fragebogen - F-COPES Fragebogen - chronisch kranke Kinder - behinderte Kinder

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