“A gift wrapped in barbed wire” Positive and negative life changes after being diagnosed with inflammatory bowel disease

A growing interest in posttraumatic growth among individuals who have experienced a traumatic event has given rise to measures such as the Posttraumatic Growth Inventory (PTGI; Tedeschi and Calhoun, 1996). However, such measures may not fully represent all dimensions of change among individuals diagnosed with a chronic disease and fail to highlight the negative changes that may also occur. This study explores the positive and negative changes patients with inflammatory bowel disease (IBD) have experienced since diagnosis.

Three hundred and seventy-eight IBD patients provided answers to the qualitative question “Could you please describe the (positive/negative) effect(s) IBD has had on your life?” A grounded theory approach using NVivo was performed on participants’ responses.

Nearly 73 % of participants reported their disease positively affected their life in some way, and five themes related to positive changes emerged from the analysis: Interpersonal Relations, Personal Growth, Valuing Life, New Life Paths, and Spiritual Growth. However, almost 80 % of participants also reported their disease negatively affected their lives, with three themes emerging from the analysis: Freedom Restrictions, Psychological Side Effects, and Social Isolation.

Our results support previous findings but also reveal that some dimensions related to the positive changes following adversity are not adequately assessed by the PTGI (e.g., appraising existing friendships, openness to try different forms of treatment or therapies, and psychological preparedness). The implications of these findings for future measurement and research of posttraumatic growth with IBD patients are discussed.