by Krisi Brackett
This has been on my mind lately fueled by discussions on the best way to provide information to caregivers. It’s also a frequent question at my workshops- how to get a family to follow recommendations.
We want to help caregivers improve understanding of their child’s feeding issues, provide recommendations, and to get follow through. One thing I have learned working intensely in this area of specialty is that we as feeding therapists are often treating the family not just the child. Feeding problems affect the entire family, can make it impossible to have a family meal or go out, increase parental stress, and contribute to anxiety, depression, sleep deprivation, and general disruption of family life. Adding to this- caregivers are often given a myriad of contradicting information as well as dealing with the general demands of raising a family, needing to parent siblings, hold down a job, etc.
Empathy, compassion and support
Sounds simple but often it is not. Allowing a family to tell their child’s story with full attention is very important. We find that it can take some concentrated time to get all of the necessary information to adequately identify the feeding issues. Caregivers can be overwhelmed with their child’s feeding problems and may not even realize what is significant information. They may seems defensive or even burnt out having tried many avenues to fix things.
It’s even possible as a therapist to “give up” on a family who isn’t following through with recommendations. In these situations, take a step back and have an honest discussion with the family about why they aren’t following through. Perhaps, the recommendations are too hard, there is not enough time, they are working and can’t be present at meals, fear of weight loss, financial constraints, different advice from the pediatrician, philosophical differences, or they can’t get their child to listen to them.
One of the best pieces of advice I learned at a conference came via a talk given by the psychologists at Nationwide Children’s Feeding program. They talked about “motivational interviewing” for teens and families. This was a concept I was not familiar with and I won’t do it justice here. They suggested using questions such as (too a teen) “if you could eat more foods, how would that be good for you?” Do you think it might improve eating out with your friends?”. It helps us assess where a child/family is and what they are willing to do.
This is a true story.
First example. I worked with a child who was coming to see our feeding team. Each time, we made a series of recommendations, often my therapeutic suggestions were not followed. In the session, I would work with the child who was very sensitive. If he started to fuss or cry, the mother often cried as well, picked him up and asked me to stop. I feel that I tried many times to explain my techniques and the rationale but I was not getting through to her or making progress with the child. In a sense, I began to lower my expectations of the visits. The child continued to receive tube feeds and refuse all oral nutrition. I recommended feeding therapy in the home thinking that therapy in the child’s own environment might be more successful. Still no progress. Then one day, at a follow up feeding team appointment, the child’s mother said to me , “why aren’t we pushing him?”. She let me know she had been doing research on feeding and there were many things we could try. Needless to say, I was stunned. After a few minutes, we got to work. Mom was on board, we pushed the child therapeutically and in 6 months with caregiver support, he easily transitioned off of his feeding tube. I learned a lot from that mother and am eternally grateful to her. Now, I work harder to educate caregivers and gently explain options for treatment and need to us to work together to determine which techniques are best suited to the child and their family.
Second example. An infant came to us s/p tongue revision with an NG tube due to FTT and bottle refusal. Mother was breast feeding but the child used a grazing pattern and wasn’t getting enough. Mother expressed a desire not to use medical management. We provided education and recommendations about the reason for medical strategies but honored her desire to avoid these. We provided information for tube feeding use to promote hunger and comfort, local feeding therapy, and a return appointment in 2 months. In the end, the child came back sooner due to poor progress and recommendations for g-tube from local therapist. We again discussed a short trial of medical management prior to consideration of a g-tube that included an appetite stimulant. In 2 weeks, the child was eating enough for the NG to be removed.
Understand a caregiver has to be ready to receive your information. It’s my job to give the best advice I can and ultimately it’s about the child. I try very hard to listen and check my ego at the door.
We always provide written home work per recommendation sheet for caregivers to take home detailing feeding techniques, what meals should consist of, positioning, and any other info we would like them to practice.
Videotape feeding techniques to practice
I often suggest caregivers use their smart phones to video tape feeding strategies I use in the clinic such as jaw support, lateral placement, assisting with cup drinking. I ask that they do not post these on social media due to hospital rules. A video tape example can be very helpful when the child has multiple feeders or a parents wants to share our recommendations with the home therapist.
Allowing parents practice feeding child with you
We always have parents feed with us. This allows us to provide supportive recommendations. Many of the kids that come to see us are difficult feeders and the techniques we use are often not intuitive to caregivers. I find this one of the most important teaching strategies. In fact, I tell parents, my job is to help you learn to successfully feed your child.
Our caregivers and parents often feel isolated and alone. They tell us things such as “all of their friends kids eat”. Grandparents don’t understand and say, “just send the child to my house”. It a long lonely road sometimes. If possible, we connect parents of children with similar feeding issues. We also refer parents to feeding matters for support.
Access to mental health professionals and support
On occasion, we may suggest professional help if we feel caregiver is depressed or anxious and needs more support than we can provide.
Honesty- often trial and error approach
We talk with families about the process. There isn’t one test we can put a child through to know what will work in the end. There is a certain amount of trial and error involved whether it be medical management, nutritional strategies or therapy recommendations. As we practice and continue to learn more, we get better at honing in on what we think will be the best recommendations but every one of these children is an individual with unique needs. As my colleague in the feeding clinic likes to say, “ we take care of a bunch of unicorns!”