Title: LearninG from Women’s ExpeRiences of Anal InContinencE after Vaginal Birth (GRACE)
Funder: Department of Health and Social Care

Abstract: Research questions What are the barriers for women with anal incontinence after obstetric injury in accessing timely support and treatment? What content would be useful in an online resource for the women affected? What are the barriers for GPs in caring for these women? What ought to be included in an online education resource for community healthcare professionals (HCP)? Background Anal Incontinence (AI) is the inability to reach the toilet in time or control flatus. Over one in five women will develop AI in the first five years after having a vaginal birth. The timing of symptom onset varies; some women having AI early after childbirth, whilst many develop symptoms during the menopause. AI has a significant negative impact on a woman s quality of life with undesirable effects on her psychosocial and emotional wellbeing. The main barrier for women accessing treatment is a lack of education on AI both for women and HCPs. It takes on average seven years for a woman with AI to be seen by a professional with the training to improve her symptoms. Aims and Objectives 1: Explore perspectives and experiences of women (from different socio-economic and multi-ethnic backgrounds) who experience AI within seven years after giving birth, or at their menopause. 2: Develop an online resource to meet the information and support needs of these women and conduct formative evaluation of this resource. 3: Uncover key facilitators and barriers to identification, support and treatment of AI by GPs, to inform development of an e-Learning education resource for HCPs. Methods We will conduct in-depth narrative interviews with a diverse sample of approximately 40 women (guided by data saturation) who have experienced AI after childbirth injuries. Qualitative methods will allow in-depth exploration of women s experiences and mediating factors. An online resource to support and inform women who develop AI after injuries in childbirth will be developed, guided by ongoing analysis (using modified grounded theory) of the interview data and focus groups. We will conduct a series of three focus groups with GPs at varying stages of their careers to examine barriers to identification, support and referral of AI. We will develop an Online Education (OLE) resource in collaboration with the Royal College of General Practitioners (RCGP). Timelines for delivery This is an 18 month project. Objective 1 will run from month 1-11, objective 2 month 10-18, objective 3 month 7-18. Anticipated Impact and Dissemination We will disseminate findings with our PPI partners and promote the RCGP OLE through the RCGP, and other Royal Colleges. Findings will be published in peer-review journals and presented at national conferences. The online patient resource will sit in the public-facing &ldquo;Community space&rdquo; within the University of Warwick s, Unit of Academic Primary Care s website. The resource will be promoted by MASIC, Make Birth Better, Cysters and MAMTA (helping to reach women from BAME backgrounds) and Newson Health via signposting from their websites and social media networks. It will also be made available to stimulate service improvements and develop resources for training.

Lay abstract: Over one in five women cannot reach a toilet in time or lose control of wind or waste from their back passage within five years of an injury to their anus and pelvic floor during childbirth. This is called Anal Incontinence, or AI for short. Some women have AI after birth, but others find it starts or worsens around the time of the menopause. The physical, emotional and social impact of AI can be profound and long lasting. Women suffering AI report anger, feeling unclean, relationship breakdown, isolation and loss of self-esteem, with symptoms impacting on some ethnic groups more than others. Women often find it difficult to talk about symptoms to health care professionals. Many GPs fail to detect and direct women to services, with delays in accessing treatment. It takes on average seven years before women with AI are seen by a professional with the experience and training to treat their symptoms. NICE guidance (2017) recognised the limited evidence, particularly the lack of women s perspectives on what they consider important. This research aims to understand the experiences of women who develop AI following childbirth injuries and find out what they would like in an online resource. We will interview women with AI after a birth injury. This will include women who have AI within seven years of birth, and those who developed symptoms around the menopause. After analysing the interviews, we will make a website for women to access information and support. The website information will be chosen by women with AI, and it will include real women talking about their own experiences. We will improve community health care professionals awareness and training on AI, an area highlighted as a priority by our PPI group. We will hold focus groups with GPs at different stages of their careers to find out about the difficulties, and things that help, when asking women about symptoms of AI. Findings from these focus groups will be used to make an online learning education resource (OLE) for health care professionals through the Royal College of General Practitioners (RCGP), to improve education in AI. Our study plan has been developed with input from women with lived experience of AI after childbirth injury. Our patient and public involvement is led by a woman with lived experience of these injuries who has contributed to events raising awareness and knowledge for women and health care professionals as an ambassador of the charity MASIC (Mothers with Anal Sphincter Injuries in Childbirth). The Online education resource will be promoted via various Royal Colleges and the Institute for Health Visiting. Our findings will be disseminated through the MASIC Foundation, Make Birth Better and the groups Cysters, MAMTA and via publication.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH