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Patients' Concerns and Coping Experiences Related to Sexual Well‐Being in Inflammatory Bowel Disease: A Mixed Methods Study

ABSTRACT

Aim

To explore concerns and coping experiences regarding sexual well-being in inflammatory bowel disease and examine the relationship between these concerns and affected individuals' background factors.

Design

Explanatory sequential mixed methods study.

Methods

Recruitment flyers (n = 1347) were distributed to individuals attending inflammatory bowel disease outpatient clinics in seven facilities. Participants completed a questionnaire assessing demographics, concerns and coping experiences related to their sexual well-being. Those who provided consent participated in semi-structured online interviews. Quantitative data were analysed descriptively, and qualitative data were analysed using content analysis.

Results

A total of 551 participants completed the questionnaire, and 21 participated in the interviews. Among them, 251 (45.6%) reported experiences of concerns related to romantic relationships and marriage, sexual life, pregnancy, childbirth and childcare. The nature of these concerns varied by background factors: unmarried individuals more often reported relationship concerns; those with surgical or perianal history more often reported sexual concerns; and women, married individuals and individuals with Crohn's disease more often reported pregnancy-related concerns. Coping experiences were categorized as (1) active barrier management, (2) partner and professional support, (3) passive or resignation coping and (4) cognitive reframing.

Conclusion

Sexual well-being is significantly affected among individuals with inflammatory bowel disease. Many participants reported understanding and support from significant others or relied on personal coping strategies; however, others reported an absence of coping experiences. Sharing these findings with individuals with inflammatory bowel disease and healthcare professionals may enhance awareness and promote support strategies to improve these individuals' sexual well-being.

Implications for the Profession and/or Patient Care

Concerns about sexual well-being are influenced by both clinical and psychosocial factors, including treatment history, life stage and partner relationships. Healthcare professionals should provide individualised and comprehensive care that incorporates the partners and families of individuals with inflammatory bowel disease to better address sexual well-being.

Impact

This study presents the first large-scale mixed methods evidence on how individuals with inflammatory bowel disease experience sexual well-being, providing direct implications for improving quality of life. By illustrating both adaptive and absent coping strategies, the findings contribute essential insight to inform patient-centred clinical practice and psychosocial care.

Reporting Method

The Good Reporting of a Mixed-Methods Study (GRAMMS) guidelines were followed.

Patient or Public Contribution

No patient or public contribution.

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