Associations between the quality of life of children with chronic diseases, their parents' quality of life and family coping strategies

Abstract

Aim: The survey aimed at determining the associations between the quality of life of children with chronic diseases, the quality of life of their parents and coping strategies used in the family. Design: A cross-sectional study. Methods: The study was performed as quantitative research using a questionnaire survey in chronically ill children (n = 288) aged 2-12 years and their parents. The following instruments were used: Pediatric Quality of Life Inventory, Pediatric Quality of Life Inventory Family Impact Module and Family Crisis Oriented Personal Evaluation Scales. Results: The association between the quality of life of diabetic children and their parents' quality of life, family functioning and the impact of the illness on the family was weak. Children with diabetes had the highest quality of life but the quality of life of their parents was lowest among all disease groups in the study. The lowest overall quality of life of children was noted among those with juvenile idiopathic arthritis. The strongest positive associations between internal coping strategies (i.e. reframing and passive appraisal) and children's and parents' quality of life was observed in the families of children with asthma. Conclusions: The weak association between children's and parents' quality of life and coping strategies pointed to their low effectiveness. The results suggest that relevant interventions should be used that promote selection of new coping strategies.

Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

“…Mothers of children with chronic disease experienced high rates of stress, anxiety and depression [15,[27][28][29][30]. Parenting stress was higher when a child was of preschool age [31,32] and displaying disruptive behaviours and developmental disabilities [33] or showing flares due to increased severity of their condition [34,35]. Some parents perceived the increased caring demands of a sick child as 'intrusive' which led to higher levels of parental stress and psychological distress [36] affecting the perception of burden experienced by the mother [37].…”

“…It is not the total number of years of caregiving that contributed to differences in compassion fatigue, but the number of hours per week [55], suggesting that intensity of caring rather than duration is the critical factor. Furthermore, family members of people with less severe chronic diseases reported only a moderate burden on QoL [56,57], indicating that caregiving burden is related to the severity of the patient's disease and the family member's perception of burden [35,58].…”

“…A relative's chronic condition has an impact on the relationships among family members and between the patient and the family members [29,74,75]. Caring for a family member not only impacts the carer but also the whole family [16,76] and better family relationships improved QoL for both patient and family members [35,69,77].…”

Health-related quality-of-life in children with cystic fibrosis aged 5-years and associations with health outcomes

“…Discrepancies may arise through reduced opportunities for parents to observe their child's social and school functioning. Parental expectations of how their child feels may be biased by personal perceptions of their child's health and cumulative health experiences, or by their own QoL [18,20] . Children have the best insight into their internal world and their responses may reflect more immediate experiences of health-related effects on personal functioning.…”

Στάσεις Γονέων Με Παιδί Προσχολικής Ηλικίας Για Την Προσαρμογή Των Παιδιών Που Πάσχουν Από Σακχαρώδη Διαβήτη

“…Η Ευρώπη κατέχει την πρώτη θέση σε αριθμό παιδιών που πάσχουν από τον συγκεκριμένο τύπο διαβήτη και την πρώτη θέση σε αριθμό νέων διαγνώσεων ανά χρόνο (International Diabetes Federation, 2013). Σχετικά με την οικογένεια των παιδιών που πάσχουν από χρόνια ασθένεια, έχει διαπιστωθεί ότι επηρεάζεται αρνητικά η ποιότητα ζωής όλης της οικογένειας (Barlow & Ellard, 2006• Sikorová & Bužgová, 2016 και ότι η οικονομική κατάσταση αυτής είναι σημαντική για την προσαρμογή της στις απαιτήσεις της ασθένειας (Lawoko & Soares, 2002). Όσον αφορά την εκπαίδευση κατά την προσχολική ηλικία περί των χρόνιων νοσημάτων και των πασχόντων, το Διαθεματικό Ενιαίο Πλαίσιο Προγραμμάτων Σπουδών (ΔΕΠΠΣ) για το Νηπιαγωγείο δεν συμπεριλαμβάνει σχετική ενότητα.…”