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Rachael Zimlich is a freelance writer in Cleveland, Ohio. She writes regularly for Contemporary Pediatrics, Managed Healthcare Executive, and Medical Economics.
Parents and caregivers of children with feeding disorders face lot of hurdles. Pediatricians can help by providing family-centered holistic, well-rounded care that takes both medical and social issues into consideration.
Children who face feeding disorders aren't the only ones impacted. A new study delves into the strain feeding problems can put on an entire family, and investigates how clinicians can help them carry the load.
The study1 was published in the Journal of Pediatric Gastroenterology and Nutrition, that sought to more closely examine the problems faced by caregivers of children with feeding disorders. The study was conducted from the caregiver perspective, including a view of the impact these problems could cause to daily routines and social participation. The study authors tried to find out the most important issues facing caregivers, ideal outcomes, and what types of interventions provided the best support.
Interviews were conducted between 2017 and 2018 with the caregivers of children aged two to five years who were patients at the Center for Feeding and Nutrition at MassGeneral Hospital for Children in Boston, Massachusetts. All the children who participated in the study had been diagnosed with a feeding disorder that involved some kind of impairment to oral intake. A total of 30 caregivers were involved in the study, and the overall consensus was that treatment approaches to pediatric feeding disorders needed to be family-centered in nature, focusing on improving functional and meaningful outcomes in both health and quality of life.
Pediatric feeding disorders have many presentations, ranging from dysfunctional oral motor skills to problems with food selection or appetite. These disorders have a far reach, creating medical, nutritional, and psychosocial problems. Most of the research that has been done on these disorders has focused on the etiology of these impairments, specifically, and less so on how these disorders impact daily life--for both the patient and their family.
"Pediatric feeding disorder is a unifying diagnostic term that encompasses many different types of feeding difficulties. In this study, we broadly examined children with a range of feeding disorders due to varied medical conditions, psychosocial, or feeding skill dysfunction," says lead author Meg Simione, PhD, a research scientist and speech-language pathologist at MassGeneral Hospital for Children, and instructor of pediatrics at Harvard Medical School in Boston, Massachusetts. "Even within this heterogeneous population, we found the experiences of families were very similar."
The focus of the study was how to alleviate the shared pressures faced by the families of children with feeding disorders. The study concluded that evidence-based treatment strategies should consider the entire family affected by the child's disorder, taking into account any sociocontextual issues.
"The important takeaway message is that a feeding disorder impacts more than just eating; it impacts the daily life of children and families and their ability to participate in social gatherings like play dates, holidays, and family gatherings," Simione says. "Because feeding disorders affect many aspects of life, families want family-centered care that focuses on meaningful outcomes and addresses contextual determinants that impact progress."
Most of the caregivers who participated in the interviews were mothers, and the mean age of the children who had the feeding impairment was about 13 months. Food selectivity was the most common feeding impairment, affecting 38% of the study group; followed by 34% who experienced a limited appetite; 19% who had an oral motor dysfunction; and 9% who experienced pharyngeal dysphagia. The biggest impact these disorders had on daily life was during meal and snack times, with most requiring special assistance or supports during eating. These issues all cause high levels of stress on the caregivers with problems specifically for personal, family, and work balance related to their child's feeding impairments.
Despite the intense impact of these disorders on caregivers, the most desired outcome reported by study participants was the health and quality of life for the child.
Previous studies had outlined the heavy burden pediatric feeding disorders had on families, but more in terms of scope than anything else. High levels of strain have been noted in families dealing with feeding problems, regardless of whether the child is depending on some type of feeding tube or can consume food orally. Most of the problems endorsed by these families focused more on social issues than medical ones-- including how well their children could participate in social activities; the perceptions and knowledge about the feeding disorder from extended family members; and financial and time constraints.
"Health care professionals should collaborate with families to set treatment goals that are explicitly tied to concrete health and quality of life improvements and routinely measure meaningful progress towards these goals," the report notes. "For example, training a caregiver to follow a feeding protocol to expand the child's feeding skills across people and social settings could help to reduce family stress and social isolation. This approach also provides an additional opportunity to help caregivers and extended family members understand that supporting their child in feeding is a process of unknown duration."
As for what can help caregivers achieve better outcomes with less strain on themselves, most endorsed problems with time-consuming care, expense, scheduling, and misplaced advice from family members on feeding strategies. Preferred strategies to cope with pediatric feeding disorders involved those that utilized family-centered care, community-based services, treatments that were covered by insurance programs, and experienced clinicians who collaborated with caregivers in other disciplines.
"Feeding impacts many areas of life, therefore families wanted to ensure all aspects of their daily life are being addressed through family-centered treatment. Families recognized the importance of addressing both health and quality of life outcomes," Simione says. "When discussing facilitators and barriers that influence progress, families spoke about child, family, community, and societal factors recognizing the multiple levels required to support children with feeding disorders."
Simione says she hopes the study will help bring attention to how important it is to take a holistic approach to the assessment and treatment of children with feeding disorders.
"As clinicians, we need to address not only the feeding, nutrition, and medical concerns, but other factors, such as social supports for the child and family; financial and time constraints related to specialized food, equipment, and treatment; access to health care services; and educating families and other caregivers about feeding disorders, that impact the progress of children and their families," Simione says.
1. Simione M, Dartley A, Cooper-Vince C, et al. Family-centered outcomes that matter most to parents: a pediatric feeding disorders qualitative study. J Pediatr Gastroenterol Nutr. 2020;71(2):270-275. doi:10.1097/mpg.0000000000002741