Institute of Psychological Sciences

This paper was presented as part of a symposium on "visual methods in qualitative research" at the BPS conference held in Cambridge on September 3rd, 2015. The presenter addresses the suitability of using video-recording methods to convey the delicate journey of women with Inflammatory Bowel Disease who are transitioning into motherhood. She draws on her data collection experience to address the omnipresent gaze of the camera and how both the interviewee and the interviewer relate to the visual method. She also highlights similarities in claims and limitations shared between photo-elicitation and video-recording in qualitative research.

Introduction:
Inflammatory Bowel Disease (IBD) affects many women of child bearing age and rates of voluntary childlessness (VC) exceed those of the general population by far. The factors surrounding VC remain incompletely understood.

Methods:
Female members of the patient organisation Crohn’s and Colitis UK aged 18-45 years were invited to complete an online questionnaire collecting data on demographics, disease characteristics, pregnancy specific disease-related knowledge (CCPKnow) and childlessness status.

Results:
1324 women (mean age 33 years) completed the survey. 776 (59%) were diagnosed with from Crohn’s disease (CD), 496 (38%) with ulcerative colitis (UC) and 4% with IBD-U. 40% had children (14% pre-diagnosis (I); 26% post-diagnosis (II)), 36% planned to have children at some stage (III), 7% reported fertility problems (IV) and 17% were classified as voluntarily childless (VC). VC was associated with poorer CCPKnow scores (5.98 vs 7.47 in (III); p<0.001), older age (35y vs 28y in (II); p<0.001), unemployment (9.7% VC; p<0.001), being single (34.5% VC; p<0.001, not seeking medical advice (p<0.001), and diagnosis of CD (19.3% vs 13.9% UC; p=0.015). Women with VC had more hospital admissions (mean 2.85 vs 2.17 (III); p=0.03) and surgical interventions (mean 1.27 vs 0.65 (III); p<0.001)

Conclusion:
The aetiology of VC in women with IBD is multifactorial. Women’s choice regarding children appears related to disease burden. VC is also associated with poor knowledge (CCPKnow) and women may stay childless unnecessarily. Patient education programmes could help to reduce the rate of VC in women with IBD through correcting misconceptions and alleviating patient concerns.

Key words: Inflammatory Bowel Disease; pregnancy; fertility; voluntary childlessness

Introduction: Inflammatory Bowel Disease (IBD) affects many women of child bearing age, but requires complex decision
making around pregnancy. While infertility is only slightly increased many women decide against having children.
Voluntary childlessness (VC) rates exceed those of the general population by far. The reasons for VC remain
incompletely understood.
Methods: Approximately 4300 female members of the patient organisation Crohn’s and Colitis UK aged 18-45 years were
asked by email to complete an online questionnaire. Data collection included patient demographics, education,
employment, marital status, and disease characteristics. Childlessness status and patient views were assessed as in the
previous study by Marri (2007). Disease related pregnancy knowledge was recorded with the validated CCPKnow score.
Results: 1324 women with mean age of 33 years completed the survey (response rate 31%). Of these 76% were in a
long-term relationship and 87% were in employment or education. 776 (59%) suffered from Crohn’s disease (CD), 496
(38%) from ulcerative colitis (UC) and 4% from IBD-U. 40% had children [14% pre diagnosis (I); 26% post diagnosis (II)],
36% planned to have children at some stage (III), 7% reported fertility problems (IV) and 17% were classified as
voluntarily childless (VC). 673 patients had sought medical advice about pregnancy and IBD.
VC was associated with poorer disease-related knowledge (CCPKnow 5.98 vs 7.47 in (II); p<0.001), older age (35y vs
28y in (II); p<0.001), unemployment (9.7% VC; p<0.001), being single (34.5% VC; p<0.001, not seeking medical advice
(p<0.001), and diagnosis of CD (19.3% vs 13.9% UC; p=0.015). Women with VC had more hospital admissions (mean
2.85 vs 2.17 (III); p=0.03) and surgical interventions (mean 1.27 vs 0.65 (III); p<0.001). Exposure with different types of
IBD medication was not associated with VC.
The main patient concerns were around inheritance (20.6%), inability to cope with a child (20.6%), and the influence of
pregnancy on IBD (18%).
Conclusion: VC occurs frequently in women with IBD and appears to be multifactorial. Disease type and severity
influence VC. Differences in disease burden could explain why VC is more common in CD than UC. Patients are mostly
concerned regarding inheritability, disease course and the ability to cope with the added stress of being a mother.VC is
associated with poor pregnancy specific knowledge and many women may stay childless unnecessarily. Patient
education programs may help to reduce the rate of VC by correcting misconceptions and alleviating patient concerns.

AIM
To examine patient knowledge and factors influencing knowledge about pregnancy in British women with inflammatory bowel disease (IBD).

METHODS
This is a post hoc analysis of a study of female members
of Crohn’s and colitis United Kingdom, aged 18-45 years who were sent an online questionnaire recording patient demographics, education, employment, marital status, and disease characteristics. Disease related pregnancy knowledge was recorded using Crohn’s and colitis pregnancy knowledge score (CCPknow).

RESULTS
Of 1324 responders, 776 (59%) suffered from Crohn’s disease (CD), 496 (38%) from ulcerative colitis (UC) and 52 (4%) from IBD-uncategorised (IBD-U). CCPKnow scores were poor (0-7) in 50.8%, adequate (8-10) in 23.6%, good (11-13) in 17.7% and very good (≥ 14) in 7.8%. Multiple linear regression analysis revealed that higher CCPKnow scores were independently associated with higher educational achievement (p < 0.001), younger age at diagnosis (p = 0.003) and having consulted a health care professional about pregnancy and IBD (p = 0.001).

CONCLUSION
Knowledge was poor in 50%. Speaking with healthcare
professionals was a modifiable factor associated
with better knowledge. This illustrates the importance
of disease related pregnancy education.