Defining Resilience in Young People with Inflammatory Bowel Disease: A Theory Informed Approach
Inflammatory Bowel Disease (IBD) is a chronic gastrointestinal illness for which there is no existing cure. There is significant literature documenting the increased likelihood of adverse biopsychosocial outcomes in young people with IBD (e.g., Greenley et al., 2010); however, many individuals with IBD respond by either maintaining or increasing outcomes categorized as positive. These trajectories can be thought of as characterized by a resilient response. The study of resilience in young people with IBD is nascent. Given the unique disease-specific and developmental contexts young people with IBD experience, the first step in understanding the process of resilience in young people with IBD is to conduct an investigation as informed by a broader, theory-informed definition of resilience allowing for the consideration of disease and developmentally specific contexts and resources. The current study aims to utilize Ungar’s 2019 three-dimensional framework to better understand and describe the complex construct of resilience in young people with IBD. This framework recommends the intentional inclusion and integration of three dimensions when conceptualizing and defining resilience as best practice: the specific contexts of risk exposure, protective and promotive factors and processes (PPFPs), and desired outcomes including and beyond the absence of risk. The current study utilized a qualitative approach to describe resilience in young people with IBD utilizing this multi-dimensional framework. Participants included 21 children and adolescents (ages 11-17) diagnosed with IBD within the past year and 20 caregivers. Children and their caregivers completed a semi-structured interview as a part of a broader research study describing early psychosocial risks in the development of IBD-specific anxiety. As informed by thematic analysis and codebook analysis, the study team developed a set of inductive codes utilizing both child and caregiver transcripts, leading to the development of a codebook that guided full coding of all child and caregiver transcripts. Following, codes relevant to study guiding questions aimed at addressing the three dimensions of resilience were pulled, and themes were considered and created to describe the resilience process more thoroughly in young people with IBD. Themes specific to each dimension emerged in the current analyses, and collectively provided a richer understanding of the contexts, factors, processes, and outcomes associated with the process of resilience in these young people. Overall, young people in the current study described desired outcomes across domains of recovery (outcomes characterized by returning to baseline) as well as sustainability (outcomes of being “better off” after a context of risk exposure, as well as outcomes of continuing to engage alongside valued activities in the face of IBD symptoms). Young people and their caregivers detailed contexts of risk exposure specific both to IBD itself, as well as the interaction between disease and development, highlighting many specific considerations for understanding the unique context of risk exposure a diagnosis of IBD brings for young people with IBD. Young people also described PPFPs broadly, from more of an ecological systems frame, considering multiple intrapersonal, interpersonal, and systems-level factors and processes as protective or promotive. There were no significant findings when considering themes with regards to members of specific sociodemographic groups, potentially due to the sample being largely homogenous (i.e., White, non-Latinx, high SES). Study findings provide an initial step towards a deeper contextual understanding of resilience in young people with IBD using a multi-dimensional approach. Directions for future research are highlighted, including ways to continue to include multiple dimensions of resilience, as well as highlighting disease and developmentally specific considerations (i.e., ability to fulfill developmentally specific roles as a context of risk due to IBD, as well as a key marker of a desired outcome) as key to consider across dimensions. In terms of clinical future directions, the current study provides initial support for assessing desired outcomes as a part of existing psychosocial screening young people with IBD, specifically the ability to fulfill developmentally appropriate roles, ability to engage in valued activities, and how IBD may (or may not) have changed things for the better. Study findings also offer certain developmentally specific adaptations to existing resilience-based interventions in adults with IBD, largely considering children in context, and enhancing consideration of interpersonal, caregiver-level, and systems-level factors as PPFPs to be bolstered.
Clinical Psychology, Health Psychology, Pediatric Inflammatory Bowel Disease, Resilience
City University of New York - Graduate Center
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The Graduate School and University Center of The City University of New York