Assessment of Quality of life of parents who have children with disability in Hebron area, Palestine

Mirfit Mahmoud Amleh
مرفت محمود محمد عمله
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Al-Quds University
Background: The birth of a child with disabilities is a challenging event for parents and can have profound implications for the whole family. Raising children with disabilities affects parents' lives, their daily activities, and their well-being. Therefore, this will affect the quality of life of the parents (QOL). There is a need to assess the quality of life of parents of children with disabilities, especially in Palestine because of the high prevalence of children who suffer from a disability. This research explores an important topic well researched in western countries but not well researched in Arab world and in occupied countries as Palestine. It has significant global relevance in regard to parents of children with disabilities. Objective: To assess the quality of life (QOL) in parents of children with disabilities, from their perception, aged from 0 -18 years old in the Hebron area. Method: A cross-sectional study was conducted using a purposive sample, 179 parents of children with disabilities in the Hebron area between the ages of 0 and 18 years based on inclusion and exclusion criteria. Data were collected using the World Health Organization QOL-BREF and a socio-economic status questionnaire. Data was collected between the end of September 2019 and the end of December 2019. Findings: Analysis of parents’ characteristics showed that 44.7% of the 179 participants were males, 70.9% of the participants aged from 30 to 49 years. However, 49.4% were from town, 42.7% were from city. Around half of participants had preparatory and high school education (27.4%, 25.7%, respectively). While 11.2% of participants were illiterate. Furthermore, the result indicates 23.6% of participants had no income, 21.9% of them their income less than 1000 NIS, and only 7.9% their monthly income more than 3000 NIS. 54.2% of the sample was not work at all. 44.8% of it was paid employed. 80.34% of the sample reported that they have no illness and only 2.81 have physical and psychological illnesses together. 57% of children with disabilities were males. Moreover, 64.2% of them their age from 10 to 18 years old. 32.63% have a multiple disability 29.24% of children have intellectual disabilities, 53.81% of the children with disabilities have a moderate degree of disabilities. 30.8% of participants rate their QOL as good and very good, 35.8 % responded neither poor nor good, and 33.5% answered poor and very poor. About satisfaction with their health 44.1% of them being satisfied and very satisfied, 32.4% stated that neither satisfied nor dissatisfied and 23.4% said dissatisfied and extremely dissatisfied. All health domains affected by the presence of children with disabilities noticed that the psychological domain least affected with the mean score of 55.4. Moreover, no significant differences have been found between QOL of parents of children with disabilities and children’s gender, parents’ age, the number of children with disability, disability severity and types of disability (physical, visual, hearing, and intellectual disabilities or have multiple disabilities). While significant correlation has been found between parents’ QOL and parents' monthly income, parents’ education level, place of residence, parents’ physical illness, and children type of disability (speech disability). Conclusion and Recommendations: This study concluded that the presence of children with disability in the family negatively affected the quality of life of their parents. This section of society needs the support of society and the government to reduce the effects of having children with disability on their life. The findings of the study need more attention from parents, health care providers, society, government, and decision-makers.