INTRODUCTION

“I feel like a failure.” I’ve heard that phrase from caregivers and I have definitely felt that way as a clinician at times. Our focus as healthcare providers is on how to best serve our patients. We study anatomy and physiology. We keep current with research. We are trained to see the patient through a trauma informed lens. But the patient doesn’t get fed in a vacuum.  Feeding is one of the first ways caregivers bond with their baby. It is hard for the whole family when feeding doesn’t go as planned. The patient is inextricably connected to a family that needs to be viewed through a trauma informed lens as well. I have learned that the key to meaningful outcomes for our patients is in partnering with caregivers using five guiding principles.

SAFETY Our words have power. I must consider not just what information I share or what questions I ask but how I communicate that with a caregiver. We are often meeting families at their most vulnerable time as they are facing new diagnoses and reframing their future as a family.  The way we interact with caregivers and their child can play a role in how they view themselves as caregivers and how they view their child’s disability (Ames et. al., 2024).

Here are simple ways to foster safety during a visit:

  • Don’t ask caregivers to recount history that has already been read in the chart that could potentially retraumatize. Create space if they want to share. 
  • If I need to take notes, instead of looking at my computer, I communicate, “I am listening. I just don’t want to forget any of the information you’re sharing with me so I might pause and take notes on my computer.”
  • If I am meeting a baby, regardless of the history, diagnosis, prognosis, I congratulate them on their baby.  Every baby should be celebrated.
  • If a parent calls themselves “crazy,” “extra,” or “stubborn,” I can remind them of the truth – You are not crazy. You have been through a lot, and you are doing everything in your power to advocate for your child.

TRUST  Early on in my career, I placed pressure on myself to have all the answers and fix things. Now I know I will not have all the answers and it’s important to be honest when I don’t know something. That authenticity builds trust and demonstrates that I’m committed to finding answers or referring their child to specialists who can help. And trust goes both ways.  If I am in a place of judgement about the caregiver, it will be hard for us to trust each other. I need to pause and reframe from thinking, “what’s wrong with them” to “what happened to them” and tap into empathy (Perry & Winfrey, 2021).  I can have an honest conversation if they are not showing up to appointments. It might be because they do not have reliable transportation or they are up all night with their child and so they end up falling asleep in the morning.  An open dialogue gives me insight into what supports the caregiver needs so they can access the care their child needs.  

Our why drives our what! So an important part of collaboration lies in providing our rationale for suggestions we make so caregivers are empowered in what they are doing as they implement a plan at home.

CHOICE I used to find myself frustrated with families that would not follow through on recommendations that I felt were right for their child. Now I know it is not about me being right or asserting myself as the food police. It’s about being useful.  We know from the literature that offering choices can be a powerful tool for our pediatric patients as they develop communication. It builds their confidence and autonomy. (Kestner et. al, 2023; Romulus et. al., 2023).  It is just as powerful for caregivers to be given choices. We can educate families on their treatment options and provide our rationale so that they can decide what is best suited for their child and family. This can be as simple as looking at a feeding schedule with a family if there is a planned reduction in tube feeding and having them choose whether to reduce an overnight feeding or an early morning feeding. Or for a baby who feeds optimally in a side-lying position, it might mean showing the parents a few options for positioning in side-lying and having them try it out to pick what’s most comfortable for them and their baby.  

COLLABORATION Each child and family is unique so our plans should be too. Caregivers are the experts on their children, and they provide valuable clues and insights as we collaborate care. We can integrate our academic knowledge and clinical experience as SLPs with what we learn about the child and their family to develop a plan that is functional, meaningful, and aligned with their values. Learning things about a family like what they eat, their schedule, where they buy groceries, what their child enjoys eating, music they play at home can all provide important pieces to the puzzle. I can share with them what I am seeing from a clinical lens and then we can combine all that information to develop our plan.

Each family I work with teaches me something and helps me continue to grow as a clinician. Feeding is more than the interplay of body systems, muscles, and nerves.

Our why drives our what! So an important part of collaboration lies in providing our rationale for suggestions we make so caregivers are empowered in what they are doing as they implement a plan at home. For example, I might recommend a good base of support during mealtime and provide a rationale on how it could support their child’s swallow. The family understands why it is important and then they might find a new inflatable footrest on Amazon that I’ve never seen before. Collaboration also creates space for a caregiver to disagree or ask questions so we can work through challenges together.  In situations where we disagree, I can consider the zones of parental discretion (ZPD). ZPD holds that parental wishes ought to be honored unless the wish would significantly increase the likelihood of serious harm as compared to other options (Rosen et. al, 2020). The ZPD asks me to consider not only what I think is best for a child, but to flexibly consider what other options are reasonable. 

EMPOWERMENT  Many of the families we serve are juggling multiple appointments with specialists, therapies, battling insurance companies, sitting on hold with DMEs on top of busy families and careers.  Navigating the healthcare system can make a parent feel completely powerless.  It is no surprise that caregivers of medically complex children are more likely to experience trauma, isolation, and mental health challenges (Kuo et. al, 2011; Harris et. al., 2024; Ames et al, 2024). These are big systemic challenges.

Here are some small steps one can take to lighten the caregiver load and make care more accessible for a child:  

  • Think outside the box! Be willing to challenge the status quo! (Novak et. al., 2023).
  • If there are multiple appointments at the same facility, try to coordinate appointments with other providers to reduce travel time. 
  • Provide an email or printout of the plan so it can be easily referenced at home.
  • Help organize the questions for an upcoming ENT consult, so they feel more prepared during the visit. 

CONCLUSION

Each family I work with teaches me something and helps me continue to grow as a clinician. Feeding is more than the interplay of body systems, muscles, and nerves.  It is having first birthday cake, thanksgiving dinner, ice cream socials, drinking water on a hot day.  It is relational. By partnering with families, not only do I get to support their child’s feeding and swallowing, but I am also able to foster a caregiver’s interaction and attachment to their child and bolster their confidence in that role. Incorporating these principles humanizes our care. It acknowledges the very real truth that their child is more than their disability or diagnosis.

REFERENCES

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Castelo, Romulus & Kim, Seokyung & Carlson, Stephanie. (2023). More is more: toddlers do not show choice overload. Frontiers in Developmental Psychology. 1. 10.3389/fdpys.2023.1317426.

Harris KW, Ray KN, Yu J. Family Caregivers of Children With Medical Complexity: Changes in Health-Related Quality of Life and Experiences of Care Coordination. Acad Pediatr. 2024 May-Jun;24(4):605-612. doi: 10.1016/j.acap.2023.11.023. Epub 2023 Dec 6. PMID: 38061581; PMCID: PMC11056298.

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Kestner, K.M., Finch, K.R. & Kolb, R.L. Systematic Review of Procedures and Outcomes of Choice-Based Interventions with Children. Educ. Treat. Child. 46, 77–106 (2023). https://doi.org/10.1007/s43494-023-00088-8

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Lovell, R.C., Greenfield, D., Johnson, G. et al.Optimising outcomes for complex trauma survivors: assessing the motivators, barriers and enablers for implementing trauma informed practice within a multidisciplinary health setting.BMC Health Serv Res 22, 434 (2022). https://doi.org/10.1186/s12913-022-07812-x

NHS Education For Scotland (NES). (2017). Transforming Psychological Trauma: A Knowledge and Skills Framework for the Scottish Workforce. NHS Education for Scotland.

Novak-Pavlic M, Rosenbaum P, Di Rezze B. Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities. Int J Environ Res Public Health. 2023 Oct 27;20(21):6983. doi: 10.3390/ijerph20216983. PMID: 37947541; PMCID: PMC10649410.

Perry, B. D. 1., & Winfrey, O. (2021). What happened to you?: conversations on trauma, resilience, and healing. First edition. New York, Flatiron Books.

Rosen R, Kamin D, Simoneau T, Larson K, Hotz A, Mauskar S, Kahn SA. The Ethics of Feeding the Aspirating Child in an Age of Increasing Patient Complexity. J Pediatr Gastroenterol Nutr. 2020 Nov;71(5):586-588. doi: 10.1097/MPG.0000000000002919. PMID: 33093363.

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Tovah Feehan is a pediatric speech-language pathologist specializing in Pediatric Feeding Disorder. Tovah is well recognized in her profession for her commitment to collaborative feeding support that honors the whole child and family. She is passionate about empowering caregivers to be the experts on their own children. After working at a pediatric hospital for the majority of her career, she founded her practice, Pediatric Feeding Partners, where she offers clinical assessment, instrumental evaluation, and dynamic intervention of feeding and swallowing for infants and children. Additionally, she is an adjunct professor of Dysphagia and health literacy. Tovah is actively involved in local outreach programs that include community classes for families preparing to start solid food. She serves on the research and education committee for the International Association of Pediatric Feeding and Swallowing. Tovah can be found @PediatricFeedingPartners where she provides resources to support families navigating feeding challenges. She can be reached at tovah@pediatricfeedingpartners.com.