People with disabilities are experienced at adapting to a world that is largely designed without considering their unique needs. Breastfeeding and chestfeeding parents are no different. As new parents, those with disabilities capably develop strategies to meet their breastfeeding goals.
As lactation providers, it is our obligation to familiarize ourselves with the unique needs of parents with disabilities. However, many of us did not receive training in providing this support, as there is very little research examining the strategies and techniques that best serve lactating parents with physical disabilities.
Tiahna Warkentin, an MD candidate (2020) at the University of Toronto, wants to change that fact. At the 2019 ILCA annual conference, Warkentin presented the results of a study she and her colleagues undertook to examine the breastfeeding experiences of parents with physical disabilities. Warkentin’s study (a summary of which was recently published in the American Journal of Obstetrics and Gynecology) offers fresh insight.
Based on her research, here are the important take-aways and action steps you can use to better support a client with a physical disability.
Tailor your help. The experiences of people with physical disabilities vary widely. A disability can be visible or invisible, short- or long-term, intermittent or ongoing. Common issues include pain, weakness, and problems with mobility or flexibility. Because of this diversity, the first key is understanding your specific client as completely as possible. Think through the client’s strengths and challenges and determine how they might affect breastfeeding. Listen carefully, think creatively, and be willing to experiment, reevaluate, and try something new.
Realize it is a demanding combination. A physical disability can make the regular exhaustion of new parenthood and chestfeeding or breastfeeding extreme. One mother in Warkentin’s study, who needed to feed her baby with an SNS and then pump at each feeding, eloquently described the exhaustion she experienced while repeating this routine throughout the day. “I’m sure many of us can appreciate how demanding of a process this is and how much an additional burden [a physical disability] can add,” Warkentin says. Acknowledging the enormity of the task undertaken by a client with a physical disability can help you provide empathetic and appropriate care and advice.
Common challenges can be harder. Of course, parents with physical disabilities are not exempt from “regular” lactation hurdles, but a physical disability can make these issues more challenging. For example, unlatching, repositioning, and re-attaching baby repeatedly to get a better latch may cause exhaustion or a worsening of chronic pain. “[There can often be] an additional physical burden related to latching on top of the physical challenges related to experiencing a physical disability,” Warkentin says. When your client experiences a common breastfeeding problem, understanding and anticipating these layered challenges can help you offer better support.
Positioning: Experiment and modify. Many study participants found they needed to modify traditional positions before they were successful. For example, one parent whose disability involved right-sided weakness found she needed to use her left hand to support her right hand when using a cross-cradle hold. Once she made that modification, the position worked. Another found that the football hold worked wonderfully on one side but not at all on the other, due to her specific disability, so she added it to her toolbox, but only for one side. This is where you can help—by understanding your client’s specific strengths and challenges, and helping them experiment with a wide variety of positions, you can help them find the ones that are most effective. [An important note on positioning: All of those in the study who tried breastfeeding lying down found it useful and many commented that it helped tremendously for relaxation, rest, and easy latching. It is definitely worth helping your client explore reclining positions that may work for them.]
Look critically at tools and accessories. Similarly, traditional breastfeeding aids such as pillows may need extra thought. All of the study participants said they used pillows to help position baby, but some found commercial breastfeeding pillows unhelpful. Participants whose disability involved short stature, for example, found that commercial pillows lifted their baby too far up. They found a thinner bed pillow or a blanket was a better choice. “This is a very good example of how breastfeeding accessories may not be designed for this population and may require modification depending on the mother’s unique needs,” says Warkentin.
Consider an extra set of hands. Especially at first, many of the participants in Warkentin’s study found having another person physically assist them with breastfeeding was very helpful. Partners and support personnel were the most common helpers, and assistance usually involved physically positioning the baby. Some parents needed this help long-term, while others were able to transition to breastfeeding independently once their babies got older. Suggesting that your client utilize help from another person in the beginning, with the goal of reevaluating and setting new goals as time goes on, is a good strategy.
Breastfeeding in a wheelchair. When a client uses a wheelchair, it’s important to help them figure out how the wheelchair fits into their breastfeeding strategy—and this may change over time. “Experiences with breastfeeding in a wheelchair were highly individualized,” Warkentin says. Challenges included moving from bed to wheelchair during the night to breastfeed and positioning the baby within the space limits of the wheelchair as the baby grew. “Overall, women reported challenges nursing in a wheelchair that developed over time,” Warkentin explains. “As a provider, it may be important to follow up with clients who attempt breastfeeding in a wheelchair, to be able to identify these barriers and challenges early and make recommendations and offer support.”
Ongoing support is key. In fact, this last piece of advice applies to any time a client has a physical disability: Make sure your helping relationship lasts over time. Checking back in, reevaluating to make sure previous strategies are still working, and being alert for when a new challenge may crop up are important for all clients, but take on even more significance for clients with physical disabilities. “It’s so important for us to realize that healthcare providers have an important role to play in supporting these women in meeting their goals and doing what we can to listen and respond to the unique needs and experiences of these women,” Warkentin says.
Note: While the research was conducted and written up well before the current COVID-19 pandemic, we want to acknowledge that the pandemic and restrictions in much of the world present special challenges for individuals with disabilities. Some may be at higher risk for health complications from contracting COVID-19, and need to be especially cautious about isolation. The need to minimize or eliminate outside contacts can affect the availability of the physical, hands-on support many parents find helpful. It may also affect their ability to seek in-person lactation support. We encourage all lactation supporters to be especially proactive and creative in their support for individuals with disabilities who are breastfeeding or chestfeeding during this time.
At the time of the webinar, Warkentin’s article was not yet published. It is now available here:
Citation: Tiahna Warkentin, T; Hermann, S.; Watson, J.; Berndl, A. (2019). Breastfeeding strategies used by women with physical disabilities. American Journal of Obstetrics & Gynecology, 220 (1), S209. DOI:https://doi.org/10.1016/j.ajog.2018.11.318
Link to full text: https://www.ajog.org/article/S0002-9378(18)31340-1/fulltext#secsectitle0015