Assisting families with feeding issues

I work as a psychologist in a developmental centre and see many families with children who are on the spectrum of autism. Most parents don’t realize that getting their children to eat is one of the biggest challenges they face. If you are reading this, I’m sure you have your own stories. Some of the statements I’ve heard are “My child eats only white foods” and “He only eats certain chicken nuggets, on a specific plate at home.”

A Feeding Toolkit has been created to help families deal with the issues that arise when children are on the spectrum. The toolkit is aimed at parents but can also be useful for doctors, therapists, and teachers, who may not have much experience with feeding issues for children on the autism spectrum. This tool kit is a guide that will help you think through the factors contributing to your child’s feeding issues.

Why is it so difficult to feed? 

When we designed this toolkit, we had several goals. We wanted to help parents understand WHY their child may have a difficult time with this. Most of us don’t even think about eating ….we simply eat! We have taken the time in this toolkit to try and break down the many variables that are involved with eating. You will be amazed at how complicated feeding is.

Why is this so difficult for my child?

This toolkit’s next objective is to help you identify what may be “fueling”, some of your child’s feeding problems. Does a medical condition contribute to feeding difficulties? Do certain behaviours also cause problems? We hope you gain some insights into what might be causing your child to have difficulty eating. You can create a plan for improvement when you know what is causing the problem.

What can we do to improve it?

We have also added some frequently asked questions from parents who we work with. Also, we have added some frequently asked questions from parents with whom we work. I’m guessing that you have probably wondered about some of the things as well. It takes time to change your feeding habits. You must also celebrate small victories and never give up. This toolkit is designed to help you cope with the frustration of slow changes in your child’s diet. It is sometimes easier to “stay on course” if you know the course!

This is a good start, but it’s not enough. What are we going to do?

Even if you do everything possible, your child may still need help. We have included some suggestions in this toolkit about professionals that you might want to add to your team for feeding assistance. You can find out what questions to ask to get the best help for your child. We also have some helpful resources.

Autism Speaks strives to provide information that is based on best practices and sensitive to the needs and wants of children with autism and the wonderful families who take care of them. This toolkit is designed to empower parents and other members of the treatment team for your child to be able to assist with this vital aspect of their child’s well-being.

Not only children are affected by feeding disorders. In a new study, researchers examine the impact feeding disorders can have on a family and how clinicians can assist them.

Between 2017 and 2018, interviews were conducted with caregivers of two- to five-year-old children who were patients in the Center for Feeding and Nutrition, MassGeneral Hospital for Children located in Boston. The study included 30 caregivers who were all diagnosed with feeding disorders that affected oral intake. The study involved 30 caregivers. There was a consensus that the treatment of pediatric feeding disorders should be family-centred, with a focus on functional and meaningful outcomes for health and quality of life.

These disorders can present in many ways, from problems with oral motor skills or food choices to eating disorders. These disorders can cause medical, nutritional and psychosocial issues. The majority of research on these disorders focused on their etiology, rather than how they impact the daily lives of patients and their families.

“Pediatric eating disorder” is a diagnostic term that covers many types of feeding problems. We examined children who had a wide range of feeding problems due to a variety of medical conditions, psychosocial issues, or feeding skills dysfunction. The lead author, Meg Simione PhD, is a speech-language pathologist and research scientist at MassGeneral Hospital for Children and an instructor in pediatrics at Harvard Medical School, Boston, Massachusetts. Even within this heterogeneous group, we found that the experiences of families are very similar.

The study focused on how to relieve the pressures that families with children who have feeding disorders face. The study concluded that treatment strategies based on evidence should take into consideration the whole family, including any socio-contextual factors.

Simione explains that the important message to take away is that feeding disorders affect more than just eating. They also impact daily life for children and families, as well as their ability to attend social events such as play dates, family reunions, or holidays. Families want a family-centred treatment that addresses contextual factors and focuses on meaningful results.

The majority of caregivers that participated in the interview were mothers. The average age of children with feeding difficulties was around 13 months. Food selectivity, which affected 38% of those in the study group, was followed by a limited appetite (34%), an oral motor disorder (19%) and pharyngeal dysfunction (9%). These disorders have the greatest impact on daily life during mealtimes and snacks, as most require special assistance or support during eating. All of these issues cause caregivers to be stressed, especially when it comes to balancing their personal, work, and family lives.

Participants in the study reported that despite the severe impact these disorders have on caregivers, they most wanted to see the child’s health and quality of life improve.

In previous studies, the burden of pediatric feeding disorders on families was emphasized more by their scope. Families dealing with feeding issues are under a lot of stress, whether their child uses a feeding tube or eats orally. The majority of problems raised by these families were more social than medical, including the ability of their children to participate in social activities, the knowledge and perceptions about feeding disorders from extended family and the financial constraints.

The report states that “Healthcare professionals should work with families to establish treatment goals that are directly tied to tangible improvements in health and quality-of-life and measure progress regularly towards these goals.” “For instance, training a caretaker to follow a protocol for feeding a child in social and other settings can reduce social isolation and family stress. This approach provides an opportunity for caregivers and family members to understand that feeding their children is a long-term process. 

Most caregivers cited time-consuming care as a way to achieve better results with less stress. They also cited scheduling issues, financial concerns, and incorrect advice given by family members about feeding strategies. The preferred strategies for dealing with pediatric feeding disorders included those that used family-centered care and community-based services. They also included treatments covered by insurance plans, as well as experienced clinicians who collaborated with caregivers from other disciplines.

Families wanted to make sure that all aspects of daily life were addressed by a family-centred approach. Simione says that families recognise the importance of both health and quality-of-life outcomes. Families discussed child, family, societal, and community factors when discussing barriers and facilitators that affect progress.

Simione hopes that the study will bring to light the importance of a holistic treatment and assessment approach for children with feeding disorders.

Simione explains that as clinicians we must address more than just the medical and feeding concerns. We also need to consider other factors such as the social support for the child and the family, the financial and time constraints associated with specialized foods, equipment and treatments, the access to health services, and the education of families and caregivers on feeding disorders.