research

Lived experiences of motherhood

There is a need for a deeper understanding in maternity services of the lives and needs of women with a disability who become pregnant, in order to protect their indepencence and autonomy.

Dympna Walsh Gallagher, Lecturer in Nursing, Marlene Sinclair, Professor of Midwifery and Roy McConkey, Professor of Learning Disability from the Institute of Nursing Research, University of Ulster, Northern Ireland, UK, summarise their research paper The lived experiences of women with disabilities facing the challenges of pregnancy, childbirth and motherhood: an interpretative phenomenological study.

Becoming a mother when you have a label of being ‘disabled’ in mind or body is the focus of this research, conducted at the University of Ulster and funded by the Vice Chancellor’s studentship.

Disability is a complex concept. The World Health Organization (2001) captured this in their international classification of functioning, disability and health in which they made it clear that the phenomenon of disability requires “different levels of analysis and intervention ranging from medical to socio-political”. Major emphasis was placed on social exclusion arising from society and environmental barriers as well as the barriers within the body of the ‘disabled’ person.

Impact and challenges faced

Statements of human rights also recognise that disability results from interaction between persons with impairments and the attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis (The UN Convention on the rights of persons with disabilities, 2006). The Convention clearly identified that women and girls with disabilities were at increased risk of neglect, exploitation, violence and abuse. Therefore, the aim of this study was to explore the impact and challenges that women with a range of disabilities – both physical and intellectual – faced during pregnancy, childbirth and postnatally.

The research was carried out using an interpretative phenomenological approach. This is a method of study based on the idea that reality is subjective, according to the individual’s perception. In the first phase, home-based, in-depth interviews were conducted with women who had physical or a mild intellectual disability, at key stages in their pregnancy and then again postnatally, spanning an 18-month time frame.

In the second phase of the study, findings from the mothers were presented to two focus groups of a variety of professionals responsible for service provision, in order to gauge their perceptions of the data and, more importantly, to involve them in recommendations for the improvement of future services to this vulnerable group of women. Pregnant women in Northern Ireland and the Republic of Ireland with a mild intellectual disability or a physical disability were invited to participate in the study. A purposeful sample of 17 women was recruited to the first phase of the study. Nineteen professionals who worked in maternity services in the two parts of Ireland were recruited to the second phase.

My birth v their birth

Two themes were identified in maternal experiences as recounted in their interviews, which could be conceptualised as internal and external. The first news of the pregnancy was internalised as positive and demonstrated enthusiastically by the women as “I’m pregnant!” However, externally this was more commonly received with disbelief and fear and best conceptualised as “You’re pregnant!?”

The same pattern emerged at the birth when the women wanted to take control of their birth but birthing became the control of the midwife or the obstetrician and was owned by the institution. The woman wanted “my birth” but it became “their birth”.

In the early days of becoming a mother, the excitement was internalised and the concept “I’m a mother!” was joyful and anticipatory but externally it was viewed as being threatening, challenging and a time for social and medical vigilance from health professionals: “You’re a mother!?”

Distinct themes

Within the three major categories of reactions to pregnancy, birthing memories and motherhood, various distinct themes emerged to do with physiological, psychological and social need. Women described a parallel world in which they saw themselves as ‘normal women’ and health professionals saw them as ‘disabled’, ‘high risk’ pregnancies.

The mirror image of themselves as ‘normal’ women who were pregnant was irrevocably distorted. Though they lived every day with a disability and that was normal for them and they accepted pregnancy as part of normal life, they felt they were not permitted to experience a normal pregnancy without unnecessary social and medical intervention for which little explanation was given.

Professionals’ perceptions

When the synopsis of the data was presented to the two focus groups of health professionals in the second phase, their responses to the women’s stories varied. Some were disbelieving, others defensive and a small number accepted that this parallel world between normality and disability was indeed the truth. In any event, there was consensus that the problems faced by service providers were staff shortages and lack of relevant resources; knowledge of disability and pregnancy was not part of mainstream midwifery education (general disability awareness and equality issues were formally taught but not applied) and training on how to communicate effectively with women who had a disability was not available. In summary, staff attitudes towards women with a disability who were pregnant needed to be addressed.

Conclusions

The final stage of this research was the development of a theoretical framework to conceptualise the phenomenon studied as a rainbow of hope and light. In conclusion, this research has provided new insight into the lived experience of women who have a disability, who become pregnant, give birth and become mothers. Their journey needs to be told and those who support them at home, in society and in the health and social services need to understand that these women are well adjusted to their normal lifestyle (whatever their level of disability) and pregnancy is part of their normal life journey. As such, pregnancy is a life changing event that is to be enjoyed and experienced in as positive a way as is possible. The majority of pregnancies to women with disabilities are trouble free and normal (BirthChoiceUK).

Further research needs to be undertaken to explore midwives’ and health professionals’ knowledge and attitude towards pregnant women with different types of disability, both intellectual and physical. There is a need for a deeper understanding in maternity services of the lives and needs of women with a disability who become pregnant, in order to protect their independence and autonomy.

References

Convention on the rights of persons with disabilities, 2006. New York: United Nations.

International classification of functioning, disability and health, 2001. Geneva: World Health Organisation.