ABSTRACT
Care for a child with a disability is a stressful experience for parents. It triggers a range of emotions and feelings that require a set of behaviors and attitudes to manage daily life. To face this situation, parents use coping strategies. The purpose of this study was to assess the psychological reactions (depression and anxiety) of parents and the impact of a child's disability on their quality of life (QOL), and to determine their coping strategies. A survey of 50 parents of handicapped children, treated in the neurology department at the Sfax Teaching Hospital in Tunisia, was conducted in September 2010. The Beck Depression Inventory (BDI), the State Trait Anxiety Inventory (STAI), the SF-36, and the Brief COPE were used to assess, respectively, depression, anxiety, QOL, and coping strategies in parents. Among the group of parents studied, the anxiety and depression rates were, respectively, 68% and 52%. Depression was more frequent among mothers and was correlated with low educational and socioeconomic levels. Anxiety was found in 70.7% of mothers and 55.6% of fathers with no significant correlation. There was a correlation between anxiety and increased family burden related to the presence of a similar case in the family. The range of coping strategies used includes religion (16%), active coping (16%), planning (16%), acceptance (20%), focus and venting of feelings (10%), and seeking emotional social support (10%). Parents used emotion-focused coping in 68% of cases and problem-centered coping in 32% of cases. The coping strategy choice was significantly correlated with gender. Mothers preferentially used emotion-focused coping. Depressed or anxious parents more frequently used emotion-focused strategies. Religious faith was correlated with a strategy centered on religious coping. The length of follow-up (more than 2years) was correlated with a strategy focused on acceptance. Emotion-focused coping was also correlated with low levels of education and socioeconomic status. We found correlations between depression and different types of emotion-focused coping such as emotional support. Impaired QOL was higher among mothers (58.5% versus 33.3%). It was correlated with depression, anxiety, and the use of emotional coping. Also, it was correlated with low educational and socioeconomic levels and increased family burden related to the presence of a similar case in the family. The size most commonly impaired in mothers was limited due to mental health (56.9% versus 44.4% for fathers). Social functioning (D6) was significantly correlated with the presence of a mental disability, the functional dependence of the child, and increased family burden related to the presence of a similar case in the family. Impaired QOL was found in 66.8% of parents dissatisfied with the explanations given by the medical team. More problem-focused coping was found in parents satisfied with the information given by the medical team compared to those inadequately informed (42.1% versus 25.8%). The presence of a disabled child causes profound changes in the family. The impact of anxiety and depression on parents and on their QOL are considerable. This is a situation that involves an adaptation process. At first, parents may be tempted to use coping strategies focused on religion, a choice related to Arab-Muslim fatalism. Parents should be encouraged to use active coping strategies to support their disabled child better. In addition, adequate information given by the healthcare staff would help them to deal with the child's handicap and would contribute to improving their QOL.
