ABSTRACT
Crohn's disease affects 2.5 million people in Europe (more than 100,000 people in France) and often occurs between the ages of 15 and 30, a period marked by self-construction. However, few studies have focused on the experience of the diagnosis during this sensitive developmental stage. This study aimed to qualitatively explore the experience of Crohn's disease in young adults since their diagnosis. Fifteen young adults (18-35 years) diagnosed with Crohn's disease participated in a semi-directive interview. Narrative data were subjected to a thematic analysis, and thirty percent of the interviews were double-coded. The results revealed an evolution of four main themes since diagnosis: (1) course of care, (2) illness perceptions, (3) disease management and (4) self-perception. For most participants, the onset of the disease was difficult, marked by severe symptoms requiring hospitalization, numerous medical examinations and sometimes several consultations before diagnosis. This journey was more difficult when it was associated with negative relations with the medical staff, who were sometimes perceived as unsupportive. Thus, some people described this diagnostic period as an "ordeal", while others experienced it as a "relief" from their suffering. The announcement of the diagnosis was often a "shock", an "upheaval" or a "downfall", followed by phases of denial associated with a desire to maintain a "normal life" and not to be defined by the disease. Despite a difficult start, most participants grew from their experience with CD, with a sense of a personal development that was made possible by self-regulation processes that enabled them to draw on their own experience and resources to adjust to their illness. By highlighting positive possibilities for evolution, this study suggests the importance of supporting the psychological resources of young adults by proposing, at an early stage, psychological support or therapies focused on acceptance and engagement.
ABSTRACT
BACKGROUND: Crohn's disease is a chronic and unpredictable inflammatory bowel disease that leads to important psychosocial difficulties especially during sensitive developmental stages such as childhood and adolescence. While risk factors for mood disorders have been identified in the literature, those for quality of life and psychosocial functioning have not. OBJECTIVE: This systematic review explored the determinants of quality of life and psychosocial adjustment to pediatric Crohn's disease. METHOD: Four international databases were consulted in March 2020: PubMed, PsychInfo, PubPsych and Cochrane Library. A series of keywords were entered in each database to identify the most recent relevant studies. RESULTS: One hundred and sixty-eight articles were identified, of which twenty-nine met the inclusion criteria. The majority explored the determinants of quality of life, depression and anxiety, with a few focusing on psychosocial functioning. Consistently with the literature on psychological morbidity, disease activity and parental stress were also strong predictors of quality of life and psychosocial functioning. New evidence showed that abdominal pain, negative illness perceptions and internalizing symptoms were also common predictors of these outcomes. CONCLUSIONS: Some risk factors of quality of life, distress and psychosocial functioning are similar, which could indicate that some patients could be at risk of presenting an accumulation of difficulties adjusting to the disease. The identification of these risk factors is fundamental to propose appropriate interventions. Therapeutic education, therapies focused on pain management or on the parent-child relationship can be considered to allow a better adjustment or prevent difficulties.
