Elsevier

Midwifery

Volume 29, Issue 4, April 2013, Pages 294-299
Midwifery

Normalising birth for women with a disability: The challenges facing practitioners

https://doi.org/10.1016/j.midw.2011.10.007Get rights and content

Abstract

Previous research on pregnant women with a disability and their experience of maternity care demonstrated that these mothers perceived themselves to be the ‘perennial outsiders’ with midwives automatically categorising them as ‘high risk’ because of their disability. They also felt that their ability to make choices, stay in control and have continuity of care was not considered to be part of the mainstream maternity care for them because they did not fit the ‘normal’ category.

Objective: this research was undertaken to explore the perceptions of two multiprofessional teams in Irish hospitals as to how maternity services to these mothers can be improved.

Participants: nineteen health-care professionals from midwifery, social work and public health nursing were recruited.

Setting: two from two major maternity hospitals, one in the North and one in the South of Ireland. were featured.

Design: the method chosen was a qualitative approach, using focus group interviews in which case studies depicting a range and breadth of women's birthing experiences were presented and discussed. Newell and Burnard's (2006) six stage approach to thematic content analysis was used.

Findings: the professionals found the disabled women's stories believable, upsetting and challenging.

Key conclusions: Staff acknowledged their ‘lack of competence, knowledge and skill’ regarding disability and felt that, on reflection, their failure to consult and collaborate with disabled women contributed to their failing to provide individualised woman centred care to women with a disability.

Implications of practice: A series of recommendations for improved practice was agreed.

Introduction

Disability has been defined as a consequence of impairments, physical, sensory and intellectual, which affect a person's ability to perform normal day to day activities (World Health Organisation, 2001). By contrast the social model of disability views it as a consequence of organisational, attitudinal and environmental barriers, which severely limit an impaired person's participation in society (Thomas and Curtis, 1997). The International Classification of Functioning (World Health Organisation, 2001) embraces both perspectives and provides a framework for optimising as well as assessing a persons participation in ordinary activities. For disabled women this includes child birth.

However, there is strong evidence to suggest that the non-disabled population, inclusive of health-care professionals and across the generation gap, have reservations about disabled women becoming mothers (Ash and Fine, 1998, Neville-Jan, 2004). As a group, these women have traditionally been discouraged or even denied the opportunity to bear and rear children (Nosek et al., 2001). Moreover the assumption that disability is a medical condition requiring specialised intervention has profoundly affected the healthcare provided to disabled women, especially in relation to pregnancy and child birth. This minority group is often deemed ‘abnormal’ and consequently, they are likely to be regarded as problematic and in some cases, ‘incompetent’ with regard to having a normal birth and becoming a good mother. Health-care providers who are poorly educated in disability awareness and with minimal relevant training, are ill-equipped to serve the needs and expectations of women with disabilities (Campion, 1990, Kallianes and Rubenfeld, 1997). Consequently, these mothers are perceived as ‘high risk’ and are not offered the same opportunities as their able bodied peers to achieve their optimum birthing experience.

Reports continue to be published of disabled women being ‘marginalised’ whilst accessing maternity services and not having their ‘specific and individual’ requirements met, regardless of their level of functioning and aspirations (Aunos and Feldman, 2002, Prilleltensky, 2003, Mac Kay-Moffat, 2007, Walsh et al., in press). In particular, mothers report that they are subject to constant surveillance (Shackleton and Godard, 1997, Tymchuk, 1999, Walsh et al., in press) and the custodial rights of mothers with disabilities are frequently questioned before and after birth. Indeed, professional bodies have recognised that modern maternity services are failing to provide the specialist services required by these mothers to enable them to have the much desired ‘woman-centred-care’ (RCM, 2000).

Royal College of Midwives (2000), published guidelines advising all midwives with regard to supporting mothers with disabilities. Midwives are advised to know their responsibilities under the Disability Discrimination Act (2005) and to provide flexible, creative and innovative midwifery care to meet individual needs, including choice, control and continuity of care for all women. In its document ‘Maternity Matters’, Department of Health (2007) the UK Government outlines its policy commitment to providing all pregnant women with appropriate and specialist services. However, there is little literature to identify the impact these initiatives have had on midwifery practice. It was against this background that the current research was undertaken and it provides one of the first significant publications in this area.

The aim of this study was to gain an insight into the professional barriers to the provision of a normal birth for women with disabilities and how these barriers might be reduced. A particular focus was on the professionals' views of disabled women making choices, of their being in control and the provision of continuity of care during and after their childbirth experiences.

The study drew on the experiences of front line staff, primarily midwives, working in a large maternity hospital in Northern Ireland, which comes under the British National Health Service and another comparable hospital in the Republic of Ireland, which has more devolved service policies and practices.

The 19 participants in the study were provided with the main themes arising from the interviews with disabled mothers and illustrated, using anonymous case studies of disabled women's experiences of ‘high risk’ birth in their respective maternity services (Walsh-Gallagher et al., 2011). They were eager for their stories to be heard and to serve as a catalyst for service reform. The women in the study had congenital and acquired impairments. They included: mild intellectual disability (n=5); status epilepsy (n=4); total visual impairment (n=2); mild intellectual disability and visual impairment (n=1); multiple sclerosis (n=1); spinabifida and hydrocephalus (n=1); brain tumour (n=1); cerebral palsy (n=1) and motor neurone disease (n=1). Their ages ranged from 17–40 years.

Extracts from the case studies were used with participants to stimulate discussion and reflection on current practices and, more importantly, to explore how the maternity services in both countries could be developed to improve the future experiences of disabled women entering their respective systems.

Section snippets

Ethical issues and recruitment of sample

Ethical permission was requested and obtained from University of Ulster Research Committee. Access to participants was gained to two major maternity hospitals, one in Northern Ireland, facilitated through contact with the clinical expert adviser to the Department of Health and one in the Republic of Ireland. Following telephone negotiations with the head of maternity services for each hospital, 19 health-care professionals, were recruited for this study; 11 and eight in each of the two

Findings

As Fig. 1 shows, disabled pregnant women encountered many barriers which prevented them from having a positive pregnancy, birthing and motherhood experience. These difficulties ranged from simple adaptation issues to more complex attitudinal ones with the latter based on professionals' negative presumptions, possibly arising from their ignorance and lack of education and training in disability awareness. One consequence was that these women were excluded from an individualised plan of care (

Discussion

This study is limited in a number of respects: it involved a small number of midwives and social work staff working in two maternity hospitals in Ireland. The views and experiences of the medical team were not included, as they did not attend, so the findings must be viewed cautiously. However, the themes that emerged are ones that are already highlighted in policy statements around improved provision for people with a disability, and they indicate that in maternity services provision,

References (27)

  • L. Culley et al.

    Parenting by people with learning disabilities: the educational needs of the community nurse

    Nurse Education Today

    (1999)
  • C. Thomas et al.

    Having a baby: some disabled women's reproductive experiences

    Midwifery

    (1997)
  • A. Ash et al.

    Women with Disabilities: Essays in Psychology, Culture and Politics

    (1998)
  • S.M. Aunos et al.

    Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities

    Journal of Applied Research in Intellectual Disabilities

    (2002)
  • H. Becker et al.

    Reproductive health care experiences of women with disabilities: a qualitative study

    Journal of Physical Medical Rehabilitation

    (1997)
  • M.J. Campion

    The Baby Challenge. A Handbook on Pregnancy for Women with a Physical Disability

    (1990)
  • C. Conley-Jung et al.

    Mothers with visual impairments or blindness raising young children

    Journal of Visual Impairment and Blindness

    (2001)
  • Department of Health

    Changing Childbirth. Report of the Expert Maternity Group

    (1993)
  • Department of Health

    Maternity Matters: Choice, Access and Continuity of Care in a Safe Service

    (2007)
  • Disability Discrimination Act, 2005. London:...
  • V. Kallianes et al.

    Disabled women and reproductive rights

    Disability and Society

    (1997)
  • E.K.O. Lee et al.

    A wise wife and good mother: reproductive health and maternity among women with disability in South Korea

    Sexuality and Disability

    (2005)
  • S. Mac Kay-Moffat

    Disability in Pregnancy and Childbirth

    (2007)
  • Cited by (0)

    View full text