A mixed methods study to develop and pilot a competency assessment tool to support midwifery care of women with intellectual disabilities

SummaryBackgroundRecent reports have highlighted the poor quality of health care received by people with intellectual disabilities (otherwise known as ‘learning disabilities’) in the United Kingdom (UK). UK Confidential Enquiries into maternal deaths have highlighted adverse pregnancy outcomes for women with intellectual disabilities and need for timely and appropriate clinical care.ObjectivesTo develop and test a competency assessment tool to support midwifery care of women with intellectual disabilities.DesignA mixed methods study.SettingLarge inner city maternity unit.ParticipantsMidwives and key experts in intellectual disabilities, maternity policy and midwifery education.MethodsPhase one comprised a systematic narrative review of the literature. Evidence identified informed phase two which included focus groups and interviews. Emergent themes informed the development of a competency assessment tool which was piloted in phase three.ResultsPhase one: Four primary research papers and two systematic reviews met the review inclusion criteria. Support to develop parenting skills of women with intellectual disabilities was highlighted as was the need to optimise organisation of maternity services. No studies specifically considered midwifery competencies to support women with intellectual disabilities.Phase two: 23 midwives attended three focus groups and individual interviews were conducted with national leaders in intellectual disability (n = 6) and midwifery policy and education (n = 7). Themes identified included need for individualised care provided by a known midwife, the importance of effective communication skills and need for clear knowledge and understanding of the legislative framework relevant to intellectual disability.Phase three: A convenience sample of 60 midwives was asked to participate in a pilot study to test the tool, 46 (77%) of whom responded. Thirty midwives (65%) felt competent in their ability to recognise intellectual disability and 37 (80%) competent or expert in understanding women have the right to be offered choice and make informed decisions. A high proportion (n = 40, 87%) reported little or no knowledge regarding consent issues.ConclusionWork to inform timely and appropriate care of women with intellectual disability has been neglected in the UK maternity services. Use of a tool could aid assessment of midwifery competencies to support women with intellectual disability and highlight where further midwifery education and development are needed. Evidence of optimal care for women with intellectual disabilities and their families across the continuum of pregnancy and birth is required.