N02 Our life is a roller-coaster! A qualitative phenomenological study exploring the impact of IBD on family members
Thapwong, P.(1)*;Norton , C.(1);Rowland, E.(2);Czuber-dochan, W.(1);
(1)King's College London-Florence Nightingale Faculty of Nursing & Midwifery, Department of Adult Nursing, London, United Kingdom;(2)King's College London- Florence Nightingale Faculty of Nursing & Midwifery, Department of Child and Family Health, London, United Kingdom;
Background
IBD significantly impacts individuals’ and their family members’ physical, psychosocial and emotional wellbeing. These then reduce quality of life. Whilst there are studies exploring the impact of IBD on children and their families, little is known about the impact of IBD on family members of adults with IBD. This study explored the impact of IBD on family members of adults diagnosed with IBD, what coping strategies they use and what support they need to manage the psychosocial and emotional burdens associated with supporting patients in managing their IBD.
Methods
An interpretive phenomenological study conducted, using an individual in-depth, semi-structured online interviews via MS Team, Zoom, or telephone. The interviews were audio recorded and transcribed verbatim. An inductive and deductive reflexive thematic analysis followed the Braun and Clark technique.
Results
Forty-three participants, including 17 people with IBD and 26 family members (parents, children, siblings, partners), were purposively selected. Three main themes and accompanying subthemes were created: (1) “Life is a roller coaster” (2) “There have been a lot of bridges to cross along the way” and (3) “My life would be better if...” Participants revealed that the impact of IBD on family members has better and worse aspects in terms of emotional wellbeing, relationship, pressure around roles and responsibilities, day-to-day burden, and siblings’ suffering. Positive coping strategies such as creating meaningful social networks, learning through living with the condition, and open communication were used by some. However, many used negative coping strategies such as avoidance, denial, and “battling on” without asking for help. To mitigate the negative impact of IBD, many family members expressed the need for support. This included proactive and effective communication from healthcare professionals, referral to meaningful sources of information and support, and support groups.
Conclusion
IBD impacts the emotional and psychosocial wellbeing of family members in both positive and negative ways. Some family members were able to use positive coping strategies, however many developed negative coping which affected their daily life. Interventions that support families to communicate better about the impacts of the condition on their wellbeing and/or provide psychosocial support will help family members of people with IBD better cope with disease and have a more fulfilling life. Health professionals need to understand the impact of IBD on family members and support them to cope with the psychosocial and emotional demands of the condition as well as the physical implications.