Is parental coping associated with quality of life in juvenile idiopathic arthritis?

Juvenile idiopathic arthritis (JIA) is a heterogeneous group of conditions characterized by inflammation of the connective tissues (e.g., the joints) [1]. According to Page it is the fifth most common chronic disease in children [2]. Children affected by JIA report chronic pain, stiffness in joints, fatigue, limitations in mobility which may restrict their participation in daily activities and possibly lead to permanent disability and deformity, and also limiting their quality of life [3,4]. Health related quality of life can be defined as the physical, psychological, and social domains of health, which can be influenced by an individual's experiences, beliefs, expectations and perceptions [5,6]. 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 [7-9]. 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 [10-12]. The limitations highlighted by these measures may in turn affect parents' well-being and ability to cope.Parents of children with chronic medical conditions such as JIA must cope with greater demands when caring for their child in comparison to those with healthy children [13]. They must adjust their family life to accommodate the frequent medical visits, the multi-component treatment regimen and their child's unpredictable illness course [14,15]. It is important to underline that the child' s quality of life can also influence the way in which a parent cares for their child and may affect the way they cope [16]. Parental coping refers to a specific effort by which the parent attempts to handle or reduce a demand on the family system [17]. According to Folkman et al., coping is defined as the person's constantly changing cognitive and behavioural efforts to manage