Quality of Life of the Person Taking Care of a Child Diagnosed with Spina Bifida

Abstract

Introduction. Birth of a disabled child, constitutes a large and initially insoluble problem particularly for parents. Assistance should be offered by relatives but above all by experts.
Aim. Assessment of the quality of life of caregivers taking care at home of children diagnosed with spina bifida.
Material and Methods. The valid questionnaire containing a modified and standardized tool — the Index of the caregiver’s quality of life was applied as a method for collecting empirical data. The scale includes 26 items that reflect the perception of the situation by the caregiver. Grade 4 expressed the greatest burden. The surveyed group consisted of 60 respondents who care at home for children diagnosed with spina bifida. The index of the quality of life was assessed in terms of the following statistical data: caregiver’s family relationship to the child, duration of care of a disabled child and the degree of burden perception by the caregiver, depending on the age of the child.
Results. Based on the analysis of the data there has not been revealed a statistically significant relationship between the caregiver’s family relationship to a disabled child and their level of subjective quality (p>0.05). A statistically significant relationship has not been confirmed between the duration of the care of a disabled child and caregiver’s burden perception measured, as well as between the age of the disabled child and the caregiver’s performance evaluation (p>0.05).
Conclusions. The research results are consistent with the results obtained by several other authors who argue that performance of care often depends on the condition of the disabled child, access to the child and also on the child’s age. (JNNN 2014;3(4):148–152)