Chapter Eight: Key research findings and research gaps identified

8.1.2. Introductory findings

• Maternity care in western society has become increasingly medicalised, which has led to a diminution of emphasis on the importance of women's experiences during pregnancy and childbirth.
• Sixty-three percent of a sample of 500 mothers from the general population in Ireland was unhappy with aspects of their care during pregnancy or birth.
• In Ireland, approximately 38,000 females between the ages of 18 and 44 years have a disability of some type.

8.1.3. General findings

• Evidence in the literature suggests that society has, in many instances, undervalued women with disabilities and the care of women with all types of disabilities shows a history of discrimination that lasts to the present day.
• It would appear from the literature that society has exerted control over the sexual and reproductive lives of women with disabilities and, particularly in the case of mothers with intellectual or mental health disabilities; there is often a presumption of risk to the child, whether or not there is evidence of such risk.
• Adverse societal attitudes such as these may very well lead to barriers for women with disabilities in accessing suitable services in pregnancy, childbirth or motherhood.

8.1.4. Findings in relation to women with physical disabilities

Barriers for women with physical disabilities were found in relation to:

• accessibility, related to the location and models of care, difficulties in transport, and moving around the physical environment
• accommodation, centred mainly around the lack of provision of suitable health information and less so around difficulties with communication
• acceptability, in terms of lack of knowledge and negative attitudes and behaviours from staff.

Facilitators to access for women with physical disabilities were more difficult to ascertain from the published literature, but some were found in relation to:

• accessibility, relating to improving access to buildings and services, with some emphasis on developing ease of movement around the physical environment
• accommodation, focussing on the provision of sensitive antenatal education classes
• acceptability, noting that considerable work on developing health professionals' knowledge of, and attitudes towards, physical disability is required.

8.1.5. Findings in relation to women with sensory impairments

Barriers for women with sensory impairments were found in relation to:

• accessibility, which focussed mainly on the difficulties of orientation to the health care setting, completing registration forms, locating a seat in the waiting area, and realising when to go into the examination room
• accommodation, which centred mainly around communication and health education, where women with hearing impairment, in particular, were at a great disadvantage
• acceptability, which related to how women with sensory disabilities tend not to feel respected or supported and have reported that some health professionals fail to recognise and appreciate their needs.

Facilitators suggested in the published literature to improve access for women with sensory impairments were slight, but some were found in relation to:

• accessibility, including the use of telephone amplifiers and/or pictorial signage, Braille, audible, visual and tactile systems in waiting rooms and information provided in an appropriate language and format
• accommodation, focussing on the need for extended consultation times and culturally sensitive antenatal education classes
• acceptability, relating to disability awareness and training for health professionals, particularly in speaking correctly for lip-readers, and in the use of basic sign language; education of health professionals should perhaps incorporate education by women with disabilities themselves.

It was also found that the availability of sign language interpreters in the appropriate languages is useful for women with sensory loss who are from ethnic minority groups.

8.1.6. Findings in relation to women with mental health difficulties

Barriers for women with mental health difficulties appeared to be considerably greater, or perhaps were better documented, than for women with other disabilities, and were found in relation to:

• availability of appropriate care, as there are poor links between maternity and mental health services
• accessibility, in relation to women's mental state, as they may lack motivation to attend clinics or may even, rarely, deny the pregnancy totally
• accommodation, where the women's considerable needs included lack of knowledge of the existence of mental difficulties in pregnancy, and the postnatal period and of the services available to them; lack of knowledge of maternity care professionals about mental health issues; and poor screening practices
• acceptability, centred mainly around a reluctance to disclose their illness, and distress due to society's, and their family's, stigmatisation of mental health problems; fear of being judged 'a bad mother'; losing custody of their child; taking medication that might affect the fetus or baby while breast-feeding, or impair their ability to care for their children; lack of trust in health care providers and the feeling that they are continually having to prove themselves to the authorities
• affordability, as many are from low income families and cannot afford to pay for costs of childcare and transport, which may prevent them from accessing health care services.

Few facilitators to improve access for women with mental health difficulties were mentioned in the literature, but some were found in relation to:

• availability, by providing training and education of health professionals to improve communication between professionals in maternity services and those in mental health care; through introducing telesupport or web-based support groups; by providing designated perinatal multidisciplinary teams in the community, including psychologists and social workers, and specialist mother and baby psychiatric units
• accessibility, in particular encouraging health professionals to develop more trust with their clients
• accommodation, noting the need to provide education for women about mental illness and the services available to them and to provide support groups
• acceptability, where training and education of health professionals and family meetings were suggested as a means to decrease the negative attitudes encountered; through supportive partnerships between women and health professionals where they would be treated with respect, and their strength acknowledged; relating to the need for continuity of care, help in communicating with their children, and more counselling services instead of drugs (with non-national women preferring counsellors from their own cultural background)
• affordability, regarding the provision of childcare facilities at clinics and practical help with mothering.

8.1.7. Findings in relation to women with intellectual disabilities

Barriers for women with intellectual disabilities were found in the literature in relation to:

• society's negative attitudes to women with intellectual disabilities becoming pregnant, and caring for their children, with a resulting lack of support networks for women with intellectual disability during pregnancy, childbirth and early motherhood;
• conservative and protective perspectives from frontline caring staff and parents regarding the sexuality of women with intellectual disability, which put the women at risk of coercive sterilisation or forced contraception.

Research on facilitators to access to maternity services for women with intellectual disabilities was almost non-existent. The Disability Act (Government of Ireland, 2005) places statute-based obligations on public bodies to provide accessible services and information.

8.2.1. General maternity and health service care

• The attitudes of society in relation to women with disabilities, in particular in relation to their sexual and reproductive lives and the issue of taking custody of their children.

8.2.2. Research on the care of women with any of the disabilities during pregnancy, childbirth and early motherhood

Research gaps have been identified in the areas of:

• locations and models of maternity care for women with any disability
• transport difficulties experienced by these women
• the physical environment in maternity hospitals and its effect on women with any disability
• the provision of health information for these women
• knowledge, attitudes and behaviours of health care staff towards women with any disability.
• the adequacy of consultation times between women with disabilities and health care professionals.

8.2.3. Research on the care of women with specific disabilities during pregnancy, childbirth and early motherhood

In addition, research gaps have been identified in the area of:

• communication needs for women with sensory impairments when accessing the maternity services
• the links between maternity and mental health services
• the motivation of women with mental health difficulties to attend clinics
• women's knowledge of the existence of mental health difficulties in pregnancy and the postnatal period and of the services available to them
• knowledge of maternity care professionals about mental health issues
• screening practices for mental health difficulties in pregnancy and the postnatal period.

Some of the above research gaps are addressed by parts 2 and 3 of this study commissioned by the NDA to review social policy documents in relation to women with disability and to explore the strengths and weaknesses of publicly-funded Irish health services provided to women with disabilities in relation to pregnancy, childbirth, and early motherhood.

8.2.4. Research on the care of women with intellectual disabilities during pregnancy, childbirth and early motherhood

Due to the lack of comprehensive investigative work concerning maternity care for women with intellectual disabilities, an extensive programme of exploratory research is required to ascertain their views and experiences as they journey through pregnancy, childbirth and early motherhood. This can form the basis of further work targeted at developing specific aspects of care identified as lacking or below quality. The first stage of this exploratory work was addressed as one section of part 3 of this study commissioned by the NDA.