Chronic illnesses, including Inflammatory Bowel Disease (IBD), present individuals with an array of physical and psychological challenges. To successfully address psychological distress or foster resilience in those living with chronic illness, it is important to understand the factors that underpin such outcomes. This research aimed to: 1) understand the association between illness uncertainty and psychological distress in those with chronic illness, and; 2) develop a theoretical and empirically informed understanding of resilience in those with IBD.
A systematic review and narrative synthesis examined the association between illness uncertainty and psychological distress in people with chronic illnesses. A systematic search of three electronic databases yielded 23 studies. Specific inclusion/exclusion criteria were applied. All studies used self-report measures and all but one study, employed a cross-sectional design. Overall, low to moderate levels of illness uncertainty were present across the study samples. The synthesis illuminated the association between illness uncertainty and psychological distress (measured as depression, anxiety, negative mood states and trauma symptoms). This association remained regardless of individual or contextual factors, time across the illness trajectory; and when confounding variables were controlled for. Appraisals of illness uncertainty need further exploration, but studies have begun examining control-beliefs and intolerance of uncertainty. Limitations of the studies are discussed and further recommendations for future research are presented.
Recent research in the IBD field has begun exploring beliefs about illness and disease-related variables and their association with resilience and other outcomes. This exploratory research employed a cross-sectional, sequential mixed methods design. Therefore, findings from a scoping literature search and qualitative phase, eliciting personal, voiced resilience experiences via interviews, informed a quantitative examination of factors and their association with resilience, using an online survey. Those over 18 years and with self-reported IBD diagnoses participated in the study. Five people participated in interviews. Potential factors comprising an important part of resilience were identified from the scoping review. The thematic analysis of the interview data supported these and the construct of grit additionally emerged (perseverance towards long-term goals). Next, eighty-five participants completed an online survey to test measures of social support, coping-efficacy and illness-acceptance (illness cognitions and coping resources); control-beliefs and intolerance of uncertainty (beliefs related to controllability); grit; time since diagnosis, disease activity and disease subtype (disease related variables); and their association with resilience (dependent variable).
Correlational analyses and a hierarchical regression analysis were conducted. Disease activity, illness-acceptance, social support, coping efficacy, control-beliefs and intolerance of uncertainty contributed 67.1% of the variance in resilience. Non-significant associations were found between grit, time since diagnosis and resilience. Daily persistence and endurance may be more characteristic of resilience in those with IBD. Limitations of the study are acknowledged, and recommendations for future clinical practice and research are discussed.
