N02 Supporting psychosocial and emotional well-being and building resilience in family members of people with IBD: RCT feasibility and acceptability study
Authors: Thapwong P , Norton C , Rowland E , Czuber-Dochan W 
Published: January 2025

Background

IBD significantly impacts the physical, psychosocial, and emotional well-being of individuals and their families, reducing overall quality of life [1, 2]. Prior studies indicate a preference for online interventions to enhance family members’ knowledge, resilience, and emotional well-being. In response, a web-based intervention with psychoeducational and interactive components was developed [3]. This study aimed to assess the intervention’s feasibility and acceptability, along with evaluation methods, to guide the design of a future effectiveness trial.

Methods

The study used a two-phase mixed-methods approach, following the Medical Research Council framework [4] for complex interventions: (a) a feasibility trial and (b) exit interviews. A two-arm feasibility RCT with 60 participants allocated in a 2:1 ratio (intervention vs. wait-list control) assessed the intervention and study design. Quantitative data were reported using descriptive statistics, while qualitative feedback on the intervention and study design was analysed using reflexive thematic analysis. Interviews were transcribed verbatim, anonymised, and managed in NVivo 14 software.

Results

Of 155 interested participants, 88 (56.8%) were screened, and 60 (38.7%) enrolled (40 intervention, 20 wait-list). Baseline mental well-being, caregiver burden, and self-efficacy scores showed no significant difference between groups (p&gt;0.05). Retention rates at 16 weeks were 57.5% for intervention and 60% for wait-list. Engagement data showed 216 log-ins by 34/40 participants over 8 weeks (mean usage 135 minutes per participant), although adherence to the 1-hour weekly target was low. System Usability Scale results yielded a mean score of 79.15 of 100 (high satisfaction). Participants valued the intuitive design, cross-device compatibility, and ease of use, with particular appreciation for community spaces and psychoeducation, which they reported helped improve caregiving knowledge, self-care, and coping strategies. Suggested improvements included adding email alerts and real-time notifications to boost engagement.

Conclusion

The study process and web-based intervention demonstrated reasonable feasibility and acceptability, with high user satisfaction in usability, design, and content. Participants noted perceived improvements in caregiving knowledge and well-being, though usage adherence was low. Suggestions for engagement features including email reminders and in-app alerts, which offer insights for future intervention optimisation. These findings support refining the intervention and highlight the need for an effectiveness trial to assess its impact on family members of individuals with IBD.

References

1.Thapwong P, Norton C, Rowland E, Farah N, Czuber-Dochan W. A systematic review of the impact of inflammatory bowel disease (IBD) on family members. J Clin Nurs. 2023;32(9-10):2228-2238. DOI: 10.1111/jocn.16446

2.Thapwong P, Norton C, Rowland E, Czuber-Dochan W. Our Life Is a Rollercoaster! A Qualitative Phenomenological Study Exploring the Impact of IBD on Family Members. Inflamm Bowel Dis. Published online February 28, 2024. doi:10.1093/ibd/izae028

3.Thapwong, P., Norton, C., Rowland, E., & Czuber-Dochan, W. N24 Supporting psychosocial and emotional wellbeing and building resilience in family members of people with IBD: a co-design study. Journal of Crohn's and Colitis. 2024. 18(Supplement_1), i2228-i2228.

4.Skivington K, Matthews L, Simpson SA, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. Int J Nurs Stud. 2024;154:104705. doi:10.1016/j.ijnurstu.2024.104705