Abstract
Parents of children with a chronic condition such as juvenile arthritis must cope with greater demands than those living with a healthy child. They must adopt different behaviours in order to lessen the impact on the family structure. Parental coping refers to the parent's specific cognitive and behavioural efforts to reduce or manage a demand on the family system. The aims of this study were: to describe coping in a cohort of parents of children with JIA; to determine whether quality of life is associated with parental coping; to explore whether socio-demographic factors such as child's age, family socioeconomic status and family structure are associated with parental coping. One hundred eighty-two parents caring for a child with JIA completed a postal survey at three times over a one-year period, which included the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), the Coping Health Inventory for Parents (CHIP) and questionnaires describing socio-demographic characteristics. Linear mixed models were employed to analyse the association between the child's quality of life and parental coping. Mean total QoL scores (JAQQ) showed that children experienced difficulty in completing specified activities at most just below 25% of the time and results fall off slightly following the 6 month time point. Mean parental coping scores for the CHIP subscales at baseline were 38.4 ± 9.0, 33.4 ± 11.6, 16.5 ± 6.1, for Maintaining Family Integration (maximum score 57), Maintaining Social Support (maximum score 54) and Understanding the Medical Situation (maximum score 24), respectively. Understanding the Medical Situation was deemed most useful. The child's QoL was associated with parental coping. Parents of children with greater psychosocial dysfunction used more coping behaviours related to Understanding the Medical Situation (β coefficient, 0.73; 95% CI, 0.01, 1.45). These findings underscore the importance of helping parents of children with JIA better understand their child's medical situation.
Highlights
Juvenile idiopathic arthritis (JIA) is a heterogeneous group of conditions characterized by inflammation of the connective tissues [1]
Parents who perceived a lower quality of life for their child tended to seek out medical information from healthcare professionals, possibly in an attempt to better their child's situation
Understanding the Medical Situation is a coping pattern that was deemed most useful by the parents in this study
Summary
Juvenile idiopathic arthritis (JIA) is a heterogeneous group of conditions characterized by inflammation of the connective tissues (e.g., the joints) [1]. Quality of life is an important outcome measure used to evaluate the impact of a medical condition such as JIA on the child and the family, as perceived by the patient or by the caregiver [7,8,9]. These measures must be sensitive to the changes in activities of daily living, fine and gross motor skills, psychosocial integration and physical function associated with the child's development and illness course [10,11,12]. The limitations highlighted by these measures may in turn affect parents' well-being and ability to cope
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