Being pregnant, or wanting to be pregnant, can be both exciting and challenging, and this is equally so for anyone with a defined disability. This resource is intended for use by midwives, nurses, and any healthcare professionals caring for women and their families during pregnancy childbirth and postnatally.
This page will signpost you to the most relevant evidence, and highlights the needs that some women may have, and how best to support them to have a positive and fulfilling childbirth experience.
Disability can be difficult to define, and tends to come with a number of assumptions, such as that those who have a disability may not necessarily view it as a disadvantage to progressing with their lives. That is not to say that healthcare professionals should not remain sensitive to the needs of all those they care for, including recognising that some may have different individual care / support needs from others.
A Birthrights (2018) study re-confirmed the need for healthcare professionals to recognise that women who have a disability expect and need to be heard and respected as experts about their bodies, and their own health and or social care needs. Many will have lived/grown up with their individuality and just need others to recognise that they are the experts, but may need help to adjust to their new lived experience of being pregnant, in labour or being a new parent.
In 2001, the World Health Organization (WHO) defined disability as having three dimensions:
- Impairment in a person’s body structure or function, or mental functioning; examples of impairments include loss of a limb, loss of vision or memory loss.
- Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
- Participation restrictions in normal daily activities, such as working, engaging in social and recreational activities, and obtaining health care and preventive services.
In 2020, they recognise that:
“the understanding of disability has moved away from a physical or medical perspective to one that takes into account a person’s physical, social and political context. Today, disability is understood to arise from the interaction between a person’s health condition or impairment and the multitude of influencing factors in their environment.” (WHO, 2020).
It should also be acknowledged here that discrimination against those who have a disability remains an ongoing challenge for individuals, professionals and societies.
Definition of disability under the Equality Act 2010
A person has a disability if:
- they have a physical or mental impairment, and
- the impairment has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.
The DDA defines disability as “a physical or mental impairment which has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities” (Equality Commission Northern Ireland 2011).
For the purposes of this resource, we have created pages reflecting all of the above in a logical fashion. We have defined disabilities through:
- physical (long term conditions)
- sight loss
- mental health, and
- learning disabilities.
We acknowledge that one or more category may apply to individuals, and some individuals will not necessarily identify themselves in such confined genre. It is also recognised, as demonstrated by Walsh-Gallagher (2012) that for many women with a disability, pregnancy and childbirth was viewed as affirming their identity and worth as women and as mothers.
We equally recognise that women with disabilities may have other protected characteristics under the Equality Act such as age, gender reassignment, and sexual orientation, all of which need to be respected and regarded with the sensitivity required for all individualised health and social care across the UK.
Research from Malouf et al, (2017), looks at the access and quality of maternity care for women with disabilities during pregnancy, birth and the postnatal period in England. It found gaps in maternity care provision particularly relating to communication, feeling listened to and supported, not being involved in decision making, and some felt their relationship with health care professionals was not always positive.
The Birthrights study also reported that “maternity care providers seem to lack knowledge about disability and how that can influence pregnancy, childbirth and parenting”, again suggesting that a lack of understanding of needs is a key issue. Many midwives may care for few women with disabilities, so developing core knowledge of specific, sometimes rare conditions, may be challenging. Having access to the right information can help with this, and knowing where to access the right support for the individual is critical to enabling high quality effective care.
Continuity of care and carer are contemporary aspirations to be sought for all women, their partners and families, and this is especially important for women who may have additional needs due to a disability. This includes consistency of care, facilitating the same standard of care from everyone and ensuring a multi professional approach to engage all those who can help make the experience a positive one for the family. One midwife may not be able to provide effective continuity of carer, however the lead midwife in the care of an individual woman should be able to be the coordinator of care; not necessarily the one who is providing day to day care, but has oversight of the care pathway, ensuring consistency and seamless care pathway throughout the journey for the woman, her partner and family.
The essence of this aspiration of continuity, and expectation for all women, is a seamless maternity services which works effectively between community and hospital settings. This should also support families to have a positive pregnancy, birth and postnatal experience, regardless of complexity and or complications.
Midwifery 2020 (Department of Health, 2010) described the coordinating role of the midwife as:
“For almost all pregnant women, the midwife is the conduit for care throughout pregnancy, labour and the postnatal period. Whilst the midwife is expert in the normal, she also provides a pivotal role in coordinating the journey through pregnancy for all women. Whilst the lead professional may change during a pregnancy, the coordinator of care stays the same, providing the continuity that women want.“
These concepts are reflected in England: Maternity Strategy for England (NHSE 2020), in Wales: Maternity Care in Wales - A Five Year Vision for the Future (2019-2024), and in Scotland: Best Start programme (2017) also affirming the need for consistent effective care. At present (2020) Northern Ireland are reviewing their strategy for maternity care. For more information, see The Pregnancy Book.
All midwives should be familiar with the standards set out by the NMC, including: