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According to the World Health Organization (WHO), at least 15% of the world’s population experiences a disability. Of these, approximately half are women, with around 10 to 12% of childbearing age ¹.  A comparable proportion of women with disability are also seen within maternity services². Of these mothers, nearly half experience physical disability, a third mental illness, and approximately 6-8% have either an intellectual or sensory disability respectively³.

Whilst this represents a significant proportion of the global population, and birthing women, mothers with disabilities still experience stigma, from both professional and family caregivers⁴. These mothers are often forced to deal with personal and parenting challenges with minimal support, which can cause increased emotional, mental, and physical stress.

5 ways family caregivers can provide empathy and support

This article focuses on five ways family caregivers (such as partners, parents and siblings) can help mothers with a disability feel empowered as they begin their journey towards motherhood:

• Cultivate a mindset of empathy
• Listen to their issues and concerns
• Doing a self-check on your communication style
• Educate yourself about the care she will need
• Help them access health providers and services that will support them

1. Cultivate a mindset of empathy

It may be surprising to hear, but not all caregivers come from an empathetic mindset. More often than not, caregivers often confuse patience with empathy. A mindset of empathy means that you can intimately understand the thoughts, feelings, and motivations of a person. ‘Putting yourself in their shoes’ is often the way empathy is described.

Being able to understand and empathize with what they’re going through, as a mother with a disability, is first and foremost. This can be integral to reducing the stress she is feeling and helping her become empowered. Although being related to her and caring for her since childhood, may help you understand her as a person, many family caregivers have additional worries that affect their ability to have empathy and support her during pregnancy, birth and into motherhood.

Family members, especially parents may feel concerned either that pregnancy will exacerbate chronic conditions present, that their daughter won’t cope as a mother, or may not be able to develop the skills required for parenting,. Current research clearly shows most mothers with a disability can parent and manage well providing they get support tailored to their needs ⁵. And crucial to this is family caregiver support! As such, it’s important for you to adjust your attitude and thinking so that you’re not just viewing their circumstance from your point of view. Instead, you’re able to respond with genuine empathy and compassion that will benefit both of you.

2. Listen to their issues and concerns

Many women with disabilities as they become mothers have lots of worries and concerns, additional to stigmatizing attitudes from others. As shared in Deaire Pecora’s story about pregnancy with cerebral palsy, others had warned her that she would be unable to carry a baby to term, which terrified her. Despite this, she persisted and was able to get her family circle to listen to her, and get the support she to become a mother. But this isn’t the case for many mothers with disabilities who experience negative attitudes from family caregivers⁶.

As young people become adults, the parental role changes. Usually this is a gradual transition through the teen years, as young adults become more experienced with decision-making, and understand the consequences of their decisions. For parents of a young person with a disability, this transition can be harder. Parents can continue to feel protective, which can lead to fewer life experiences or decision-making opportunities for the young person with a disability. Parents and family caregivers may want to continue making these decisions for their adult child, around becoming a parent, especially if the mother has an intellectual disability.

Pregnancy also means your role will be changing as you go from parent to grandparent. These changes can make it harder to listen to their issues and concerns. But the bottom line is, she needs to know you are on her side, supporting her in this journey, even when you might have your own worries.

3. Doing a self-check on your communication style

Communication can often be challenging, as we all have different communication styles. Communication is affected by our own experiences, abilities, gender, age or cultural group. As a family caregiver, it’s important to do a self-check on how you are communicating with the mother-to-be. Consider these things:

• Is your communication style still one of parent to child?
• Are you telling or asking about issues?
• Are you open to her expressing her own ideas and opinions about how she wants to parent?
• Are you using language that is empowering?
• Are you supporting the choices she is making, or wanting to make?

Checking communication and the support of other family members is important too. You all need to be on the same page in supporting her in this journey. Perhaps her siblings, partner or partner’s parents need a nudge to be more active listeners, too. If you are struggling in this area, seeking help from health professionals can be beneficial. These professionals can help you work through worries or concerns that impact your ability to provide empowering communication.

4. Educate yourself about the care she will need

Women with a disability usually have their day-to-day routine established with their caregivers, whether it’s assisting with physical care, or assisting with communication or decisions. However, pregnancy and motherhood will change that. The type of care needed will be different. Many women know what they can and can’t manage, and they need to be the ones to decide on what they need you to do. As such, asking them to let you know if they need help is important, rather than assuming she will need help with most things.

Antenatal or prenatal care will need to be tailored to her specific pregnancy needs, including the information she gets about pregnancy, birth and early motherhood. Telehealth is becoming more prominent in Australia, with over 89,000 providers now online. This means that you may also benefit from sitting in on virtual consultations. If she is happy for you to attend antenatal appointments with her and her partner, any medical queries you have can be asked and answered on the spot. This will allow you to understand more about any caregiving changes needed over the pregnancy or closer to the birth.

5. Help them access health providers and services that will support them

Depending on where the mother-to-be lives, the type of services and models of care will vary. Finding health providers like GPs and midwives who provide person-centred care is important to meeting the mothers’ individual needs. Many community health centres can provide information about local non-government services that provide specific services (parenting programs, young mothers supports, domestic violence support, etc…).

It is important that women also have their National Disability Insurance Scheme (NDIS) Plans reviewed early in pregnancy too along with submitting an NDIS Change in Circumstances form (now she is having a baby). While the Department of Health is responsible for pregnancy and birthing care, additional funding for mothers at-home supports with a new baby, needs to be considered.

Conclusion

Motherhood is one of the most exciting and fulfilling events in any woman’s life. For those with disabilities, although their circumstances may create some challenges, the experience should not be any less rewarding. With an empathetic family caregiver at their side, mothers with disabilities can enjoy every day feeling confident, supported and understood.

References

1. Heideveld-Gerritsen, M., van Vulpen, M., Hollander, M., Oude Maatman, S., Ockhuijsen, H., & van den Hoogen, A. (2021, 2021/05/01/). Maternity care experiences of women with physical disabilities: A systematic review. Midwifery, 96, 102938. https://doi.org/https://doi.org/10.1016/j.midw.2021.102938
2. Smithson, C. A., McLachlan, H. L., Newton, M. S., Smith, C., & Forster, D. A. (2021). Perinatal outcomes of women with a disability who received pregnancy care through a specialised disability clinic in Melbourne, Australia. Australian & New Zealand Journal of Obstetrics & Gynaecology, 61(4), 548-553. https://doi.org/10.1111/ajo.13326
3. Malouf, R., Henderson, J., & Redshaw, M. (2017). Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period in England: data from a national survey. BMJ Open, 7(7), e016757. https://doi.org/10.1136/bmjopen-2017-016757
4. Williams, N. (2020). Travelling with two: balancing identity and risk in mothers with intellectual disability [PhD Thesis, University of Newcastle]. Newcastle.
5. Tarasoff, L. A. (2015). Experiences of Women With Physical Disabilities During the Perinatal Period: A Review of the Literature and Recommendations to Improve Care. Health Care for Women International, 36(1), 88-107. https://doi.org/10.1080/07399332.2013.815756
6. Powell, R. M., Parish, S. L., Mitra, M., & Rosenthal, E. (2020). Role of family caregivers regarding sexual and reproductive health for women and girls with intellectual disability: A scoping review. Journal of Intellectual Disability Research, 64(2), 131-157. https://doi.org/10.1111/jir.12706

Authors: Jennifer Birch & Dr Namira Williams