Abstract
Many adolescents worldwide (indirectly) grow up with a chronic disease, which may impact their functioning and wellbeing. The objective of this study is to assess whether adolescents with a (family member with a) chronic disease differ from their healthy counterparts in terms of psychosocial functioning. Data from the Dutch 2013 HBSC-survey were used, including 7168 adolescents (Meanage = 13.7, SD = 1.57, 50.5% female). Participants indicated whether they or one of their family members had a long-term (> 3 months) disease or disability (mental/physical) and were categorized into four groups based on disease presence (none, other, self, both). Psychosocial functioning was assessed in terms of life satisfaction, self-rated health, psychosomatic health, mental health problems, support, substance use, physical exercise, screen time, and school liking. Chronically diseased adolescents (n = 162) reported lower life satisfaction, self-rated and psychosomatic health, more mental health problems, lower peer support, more substance use, and less physical exercise compared to healthy peers. Chronically diseased adolescents who also had a family member with a chronic disease (n = 74) showed comparable outcomes on these life domains, although they did not differ from their healthy peers regarding peer support, substance use, and physical activity. Healthy adolescents with a chronically diseased family member (n = 737) reported significantly lower life satisfaction, self-rated and psychosomatic health, more mental health problems, and less family support compared to healthy peers who grew up in healthy families; however, they reported more positive outcomes than adolescents who had a chronic disease themselves.Conclusion: Having a (family member with a) chronic disease is associated with impaired psychosocial functioning on various life domains. Our findings aid in understanding the psychosocial associates of chronic disease and imply that caregivers should be observant of psychosocial problems among vulnerable adolescents to provide appropriate guidance.What is Known:• Adolescents who grow up with a (family member with a) chronic disease encounter numerous challenges that may be related to poorer developmental outcomes on the long term.What is New:• This study adds a comprehensive overview of the psychosocial functioning of adolescents with a (family member with a) chronic disease, as compared to healthy counterparts that grow up in a healthy family.
Highlights
The progress made in the treatment of pediatric chronic diseases is revolutionary [1]
This study adds a comprehensive overview of the psychosocial functioning of adolescents with a chronic disease, as compared to healthy counterparts that grow up in a healthy family
The present study provides evidence that having a chronic disease is associated with impaired psychosocial functioning on various life domains
Summary
The progress made in the treatment of pediatric chronic diseases is revolutionary [1]. Recent Dutch research has shown that 26% of the children and young adults under the age of twenty-five suffer from a chronic disease, which adds up to a total of more than 1.3 million in the Netherlands [6]. This poses novel challenges for healthcare providers in delivering care for chronically ill children, adolescents, and their families. During adolescence, the period of physical and emotional maturation, socialization, and identity formation, management of a chronic disease may constitute a major challenge [11]. Research suggests that chronic disease affects adolescent functioning in a variety of life domains, yet a comprehensive picture of which life domains are affected and to what extent is lacking
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