An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease

Student thesis: Doctoral ThesisDoctor of Philosophy


Inflammatory bowel disease is a chronic remitting-relapsing condition comprising mainly two different illnesses: Crohn’s disease and ulcerative colitis. Symptoms include abdominal pain, bloody diarrhoea, faecal urgency and /or incontinence, fatigue, and several extra intestinal manifestations, such as eye and joint inflammation. Over 40% of those with severe Crohn’s disease develop perianal disease, with anal fistulae. There is no cure for inflammatory bowel disease, and treatment remains mainly symptomatic and aims at maintaining remission. Surgery is needed in 80% of those with ulcerative colitis, and 25% of those with Crohn’s disease, leading in some cases to temporary or permanent stoma formation. Due to the unpredictability of the condition, the nature of the symptoms and stigma attached to it, patients have an array of worries and concerns.

Literature review
For a better understanding of care needs, a qualitative review of the qualitative studies reporting on the illness experiences of people with Inflammatory bowel disease was performed, with the aim of identifying what areas lacked evidence, t were under-researched and required further investigation.

A review of qualitative studies synthesised the evidence from 24 studies and 850 patients that met the inclusion criteria. The published review concluded that patients live in social isolation and with restrictions. Pain, fatigue, incontinence, body image and an uncertain future dominated their experiences. The need to address the psycho-emotional and social aspects of the condition was identified.
Furthermore, issues related to intimacy and sexuality were not directly addressed in the literature, and inferred findings from the review suggested that these may be present. Young women aged 16-24 were the group with the poorest representation in the study, followed by ethnic minorities living with IBD.

Aim of the thesis

No qualitative studies explored patient experiences behind these findings. Given the complexity of the components of sexual function, this is a gap in knowledge on this topic. Based on the findings from the literature review, aims of this study
were formulated:
· To explore the lived experiences of intimacy and sexuality of people living with inflammatory bowel disease· To explore the lived experiences of discussing intimacy and sexuality with healthcare professionals, and the need for these discussions.

An interpretive phenomenological design guided by van Manen’s framework was used. Data were collected from 43 participants via face-to-face and telephone interviews, as well as anonymous narratives collected via Google Forms.

Thematic analysis based on reflection on four existential domains (body, relationships, time and space) was used for interpreting the data.

The results were presented in two parts reflecting the data analysis of each
research aim.
· Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness that were found to be qualities of the experiences, with variations of each quality reflected in subthemes. Each theme covered an existential domain, as they were defined as a result of reflecting on the four existential domains. In lived body the theme captured the challenges of the sex life when the ill body no longer functions as before the disease and becomes a separate entity in the eyes of the participants.
Relationships domain is thrown into chaos, and pressure strained some relationships. Time domain was suggestive of lost opportunities, inability to experience the desired intimacy and impact on choice of partners, and family planning. The last existential domain, space, was experienced as restricted space, not just physical but emotional space as well, where participants were unable to disclose their condition to potential partners. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged.
· ‘These discussions aren’t happening’ was the overarching theme for the experiences of discussing intimacy and sexuality with healthcare professionals in clinical setting. Barriers in discussing concerns, proposed ways to move forward and achieve holistic care, calls to break the silence and taboos surrounding these discussions as well as experiences of such conversations that reinforced the feelings that sex was not taken seriously, were all the findings presented in four themes: I can’t imagine talking about my sex life, I’m a person not my IBD, We need to talk about sex and Those who talked about sex, talked badly. The findings concerning the discussions with healthcare professionals were published in a second paper included in the thesis.

Intimacy and sexuality are important and integral aspects of quality of life and those living with inflammatory bowel disease are severely affected by the condition. Sexual well-being is largely not addressed in clinical practice and the study provided evidence that healthcare professionals have a less holistic approach to care. Healthcare professionals should routinely ask about intimacy and sexuality issues in the clinical settings. Existing variations in the quality of care should be addressed, to promote better access to sexual well-being information. Recommendations for further research are to explore the views of healthcare professionals on discussing sexuality in clinical settings, training needs of healthcare professionals to enable effective communication, and development of a tool to assess sexual well-being.
Date of Award1 Mar 2022
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorChristine Norton (Supervisor) & Wladzia Czuber-Dochan (Supervisor)

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