Our Life Is a Rollercoaster! A Qualitative Phenomenological Study Exploring the Impact of IBD on Family Members

Abstract

Background: Inflammatory bowel disease (IBD) significantly impacts patients and their families. To provide support, understanding the effects on the wider family is crucial. However, limited research exists on the impact of IBD on family members of adults diagnosed with IBD. This study addresses this knowledge gap.

Methods: Underpinned by interpretive phenomenology, this study used in-depth, semi-structured online interviews to explore relatives' experiences. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using reflexive thematic analysis.

Results: Forty-three purposively selected interviewees comprising 17 people with IBD and 26 family members (parents, children, siblings, and partners) revealed 3 main themes: (1) "life is a rollercoaster," (2) "there have been a lot of bridges to cross along the way," and (3) "my life would be better if…" Participants highlighted that IBD has both positive and negative impacts on family members in terms of emotional well-being, relationship, roles and responsibilities, day-to-day burden, and sibling suffering. Some employed adaptive coping strategies such as creating social networks and open communication, while others relied on maladaptive coping strategies, such as avoidance and alcohol abuse. Family members expressed the need for proactive communication, information, and support from healthcare professionals.

Conclusions: IBD affects the emotional and psychosocial well-being of family members, eliciting both adaptive and maladaptive coping strategies. Healthcare professionals need to adopt a holistic approach to managing IBD that considers the psychosocial and emotional challenges faced by individuals and their families.

Keywords: Crohn’s disease; family members; inflammatory bowel diseases; quality of life; ulcerative colitis.