Investigation of parents of children with cystic fibrosis handling stress, perceived stress and social support levels

Introduction and Aim: Cystic Fibrosis (CF) is a chronic multisystemic disease that affects both the child and the parents. Along with the burden of the disease, the mental state of the family can be affected, causing problems and distress in family functions. In this study, it was aimed to determine the stress coping styles, perceived stress and social support levels of primary caregivers of children with cystic fibrosis using a questionnaire. Materials and Methods: Our research was carried out as a descriptive-cross- sectional and case-control study. Within the scope of the research, 104 parents with children with cystic fibrosis and 106 parents with children without any chronic disease were reached. Perceived Stress Scale (PSS) with 14 items, the Ways of Coping with 30 items and Multidimensional Scale of Perceived Social Support (MSPSS) with 12 items were used in the evaluation. SPSS statistics 24.0 program was used for statistical analysis. Results: The total score of perceived stress was higher in the case group than in the control group, but no significant difference was found. A significant difference was found in the PSS scores of the case group according to age (p=0,047). When the Stress Coping Styles Scale sub-dimension scores of the control and case groups were compared, the highest scores in both groups were self-confident approach and helpless approach and no significant difference was found between them. In the case group, a significant difference was found in the 'seeking social support' sub- dimension when the mean scores of the sub-dimensions of the MPSS were compared according to the marital status of the parents and in the 'self-confident approach', 'optimistic approach' and 'seeking social support' sub-dimensions when compared according to parental psychiatric diseases (p=0,01, p=0,01, p=0,02, p=0,02, respectively). When the scores of the subgroups of the Multidimensional Perceived Stress Level Scale (MDPSLSS) were compared, the highest score in both the case and control groups was 'family support' and no significant difference was found between them. When the Multidimensional Perceived Stress Level Scale (MDPSLS) subgroup scores of the case group were compared according to "gender", a significant difference was found in the 'family support' subgroup (p=0,02). Conclusion: As a result of our study examining the perceived stress level, coping styles and social support level of parents of children with cystic fibrosis, no significant difference was found between the case and control groups. Since cystic fibrosis is a disease that requires a holistic approach, psychologists should be included in the health care team and support should be provided to parents. In order to reduce negative child-rearing attitudes in parents who have economic difficulties, economic support should be provided to these families, as supporting these families in economic issues can be beneficial for both the parent and the child. Experimental studies should be planned to help parents cope with stress. KEY WORDS: Cystic Fibrosis, Parents, Stress, Ways of Coping Inventory, Social Support