Challenges and strategies of children and adolescents with inflammatory bowel disease: a qualitative examination

Abstract

Background: The aims of this study were to understand the lived experience and elements of quality of life as depicted by children and adolescents with inflammatory bowel disease (IBD).

Strategies to improve quality of life in adolescents with inflammatory bowel disease

“…45,69 Adolescents who utilize a positive outlook and predictive cognitive control have improved HRQOL. 35,45 This requires them to have a more positive view of their future with IBD and to agree with such thoughts as "I consider my future to be on the bright side," "When I think about my illness, I assume all will go well." 45 As mentioned above, while use of avoidant coping styles or depressive reaction patterns is common in IBD, less use of these strategies can lead to better HRQOL.…”

“…31 Similarly, several pediatric studies have found that adolescents with IBD symptom exacerbation are more likely to express greater psychosocial difficulty. 34,35,36 In terms of IBD type, UC and CD were shown to affect the lives of children differently, 37 with bowel symptoms having greater effect on QOL in youths with UC, and systemic symptoms and body image concerns weighing heavier in patients with CD. Interestingly, steroid exposure, hospitalizations, and time from IBD diagnosis have not been shown to significantly impact HRQOL in pediatric IBD.…”

“…93 Cognitive reappraisal and developing interest in activities that can exist within the limitations of their disease process (e.g., crafts) was found to be helpful to adolescents in times of illness or health. 35 The more positive effects of psychotherapy in adolescents may be due to their more flexible behavioral repertoires and less-engrained maladaptive coping strategies.…”

“…71 Several studies have probed illness perception in children and adolescents. In a study examining the lived experience and QOL in children with IBD ages 7-19 years using an interview about the impact of IBD on their daily lives, 35 themes of discomfort from symptoms and treatment, vulnerability, and diminished control over their lives and future, and seeing themselves as different from healthy peers were common. Additional difficulties noted were lack of energy, food restriction, medication side effects, lack of control, diminished self-perception, and less social interaction.…”

“…Boys are more focused on reduced strength and short stature, while girls are more concerned about weight gain. 35 While this is a typical developmental issue for healthy adolescents, IBD can exacerbate this through the disease process itself (e.g., delayed puberty) and therapeutic regimen side effects. In terms of cultural differences, HRQOL concerns were similar between children with IBD from England and Canada.…”