Psychosocial Adjustment

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Growing up with a chronic illness such as cystic fibrosis can be a challenge for children and adolescents and may place them at risk for psychosocial adjustment problems. Research studies present conflicting findings as to whether patients with cystic fibrosis have psychological functioning that differentiates them from healthy peers. Some evidence, however, indicates that patients have an increased likelihood of psychiatric problems, such as depression, anxiety, oppositional disorders, and eating disorders (Pumariega et al. 1986; Quittner et al. 2008; Smith and Wood 2007). More research is needed to clarify whether mental health problems are more prevalent in patients with cystic fibrosis. Currently a national epidemiological study of depression in patients with cystic fibrosis and parent caregivers is under way to gather data on the prevalence of these symptoms (see www.tides-cf.org). Nevertheless, even if mental health problems are not more prevalent, when they are present, these problems can significantly impact health outcomes.

Understanding issues that can arise during various stages of psychological development can enhance therapeutic interventions. For example, with newborn screening and early diagnosis, a child and family need to learn early to cope with the illness; related symptoms; and complex, time-consuming treatment regimens. Discovering a sense of difference was a central phenomenon described in one study of children with cystic fibrosis during middle childhood years (D'Auria et al. 1997). In adolescents, delayed physical development due to cystic fibrosis may lead to poor body image, low self-esteem, and isolation. They may experience their physical symptoms as being intrusive and having negative impacts on peer activities. In young adulthood, long-term relationships are burdened with fears about prognosis and fear of rejection if the patient becomes ill.

When working with the family, a clinician needs to examine how cystic fibrosis affects family functioning and how family functioning influences the child's adjustment and adherence to the treatment regimen. Cystic fibrosis imposes incredible demands on the family's time and emotional and financial resources, over and above the inherent stresses that arise when a child has a chronic nonlethal illness. Commonly cited parental concerns include the difficulty of the treatment regimen, the terminal nature of cystic fibrosis, and the disruption of intrafa-milial relationships (levers and Drotar 1996).

Siblings of children with cystic fibrosis are likely at an increased risk of having depression, anxiety, and behavioral problems (Breslau et al. 1981; Cowen et al. 1986; Derouin and Jessee 1996; Foster et al. 1998; Phillips et al. 1985). Parents of children with cystic fibrosis have an increased risk of psychological distress, particularly anxiety and depression (Quittner et al. 2008). In a longitudinal study of children with cystic fibrosis that controlled for baseline psychological functioning, maternal anxiety was related to increases in child self-reported psychiatric symptoms (Thompson et al. 1994). Parents can experience strain due to balancing their caregiv-ing roles in tasks generic to all families (e.g., household tasks, recreation) and illness-specific tasks such as mealtime and physiotherapy (Hodgkinson and Lester 2002; Quittner et al. 1998). A meta-analysis found evidence that parents of children with cystic fibrosis have decreased marital satisfaction, which was related to reduced time together, decreased communication, decreased sexual intimacy, and the strain between caregiving and parenting (Berge and Patterson 2004).

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