Educational tool increases knowledge, comfort among families with food allergy
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Key takeaways:
- Comfort in leaving children with other caregivers increased from 40% to 75.7%.
- Confidence in using epinephrine autoinjectors increased from 69% to 93%.
- Anaphylaxis recognition improved from 66% to 73%.
After completing the FA Passport, caregivers felt more comfortable with leaving their food-allergic children with other caregivers, according to a study published in The Journal of Allergy and Clinical Immunology: In Practice.
The tool also improved caregiver knowledge about proper epinephrine autoinjector use and anaphylaxis recognition, Ashley Ciliberti, MD, physician in the division of allergy and immunology, Rush University Medical Center, and colleagues wrote.
Parents and other primary caregivers of children with food allergies often feel significantly concerned when they trust their children to secondary caregivers such as babysitters and the parents of friends, especially as most food allergy reactions occur outside the home, the researchers said.
Also, the researchers noted racial, ethnic and socioeconomic disparities in food allergy access to care and management, including symptom identification, treatment, risk perception and knowledge, and inter-caregiver communication and trust. The FA Passport and its supplemental FA Workbook address these barriers, the researchers said.
Designed to be easily transportable and child-friendly, the FA Passport includes the child’s emergency contact information, information about the child’s specific allergy symptoms and prescribed medications, the child’s emergency action plan and a primer on how to read food labels. The FA Workbook, the researchers continued, addresses the psychosocial aspects of food allergy.
Study design
The study involved 41 caregivers of 56 children with food allergies and insurance coverage provided by Medicaid who completed a baseline survey, a postsurvey and a 3-month follow-up survey investigating the utility of the FA Passport. Children ranged from aged less than 1 year to aged 16 years.
Participants included 80% who had only one child with food allergy, 16% with two children with food allergy and 4% with three children with food allergy. Also, 93.3% of the participants were women, and 31.8% identified as white, 43.2% identified as Black, 4.6% identified as Asian, and 28.9% identified as Latino, Hispanic or Spanish.
The most common food allergies included peanut (50%), egg (50%), tree nuts (42.9%), shellfish (26.8%), milk (23.2%), seafood (21.4%), soy (5.4%) and other (17.9%).
Participants were recruited from two allergy clinics based in Chicago. First, caregivers of children with food allergy completed a pretest that evaluated their knowledge, attitudes, beliefs and practices in food allergy management.
Next, physicians guided caregivers in completing the FA Passport, which took about 10 to 15 minutes. None of the caregivers said they needed help to fill it out, except for one caregiver who had questions about when to use epinephrine. Physicians also offered the FA Workbook to these caregivers to use at home.
Three months later, participants completed a follow-up test.
Study findings
At baseline, 40% of participants said they felt comfortable leaving their child with food allergy in someone else’s care. This increased to 66.7% after the FA Passport was administered and then to 75.7% at the 3-month follow-up.
Also, 69% said they were comfortable with using an epinephrine autoinjector (EAI) at baseline. Of those who used an EAI before, 87% were comfortable with the usage and 60% were not. The overall percentage increased to 87% after FA Passport administration and then to 93% at the 3-month follow-up.
The initial percentage of caregivers who felt confident in recognizing anaphylaxis was 91%. However, actual recognition improved from 66% to 73% from baseline through the 3-month follow-up.
On average, caregivers identified four of six clinical scenarios at baseline. After FA Passport administration, identification improved to 4.4 of six scenarios and then fell to 4.32 of six scenarios at the 3-month follow-up.
Participants most often did not recognize that swollen eyes, skin turning red and other mild visible symptoms requiring EAI. Also, participants misidentified undertreated subjective symptoms such as feeling faint or symptom combinations such as hives and vomiting.
The caregivers of children aged 12 years and younger completed the Food Allergy Quality of Life Questionnaire—Parent Form as well, with an average initial score of 3.47 out of 6 that fell to 3.17 out of 6 at the 3-month follow-up, which the researchers called a promising downtrend.
FA Passport success
Immediately after administration, caregivers gave the FA Passport a score of 9.4 out of 10, with 10 indicating they felt it was extremely helpful. At the 3-month follow-up, they gave it a 9.24 out of 10. Al of the qualitative feedback was positive as well, the researchers said, with no recommendations or requests to improve the tool.
Most of the caregivers — 33 of 41 — also used the FA Workbook, which was rated 9 out of 10 in helpfulness. Also, 36 of the 41 who used the FA Workbook said they planned to use it in the future with their children as well.
“Both of my girls are so overwhelmed by their peanut allergy that they’re now both going to counseling to help their anxiety. These books will help so much!” one of the caregivers said during the 3-month follow-up.
“My daughter has a developmental delay, and doesn’t really understand her food allergy, so I’m always concerned leaving her under the care of others,” another caregiver said at the follow-up. “I really think this book will help.”
Based on these findings, the researchers said the FA Passport is helpful and effective in improving caregiver comfort when leaving their children in the care of others as well as in increasing knowledge about EAI use and anaphylaxis recognition among patients using Medicaid.
Also, the researchers said the tool was easy enough for caregivers to complete on their own and to use to manage or educate other caregivers about their children’s food allergies. They further noted its promise in alleviating known barriers to proper food allergy management and psychosocial stressors among these families.
Perspective
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The results from this study reinforce the importance of providing easily digestible allergy management education aimed at decreasing knowledge gaps and helping families find balance between fear and quality of life, especially in under-resourced communities that may lack accessibility to even basic allergy management education.
This study also illustrates how skills-based allergy education and support tools positively impacts parents of children managing food allergy. People gain confidence by building competence, which requires stepping outside of comfort zones, applying learned concepts and practicing new skills. Especially when parenting a child with food allergy, that can feel incredibly hard because of the fear associated with doing so.
However, by providing tangible, evidence-based educational support tools that teach how to manage food allergy vs. just living with it, parents feel more equipped to step outside of their comfort zones to practice these skills, as illustrated by the favorable outcome of this study’s primary endpoint (ie, increased comfort levels related to leaving the child with a secondary caregiver).
In my own practice, I often work with parents of children and adolescents managing food allergies. Much like the results of this study, once these patients receive skills-based education and clinical support tools within therapy sessions, they not only report feeling more confident in their ability to manage the food allergy, but also express more willingness to step outside of their comfort zone in service of working toward a balance between anxiety and quality of life. This is especially true of parents of newly diagnosed children, as skills-based education helps adjust the trajectory of their allergy-related anxiety and the impact it has on their actions, their child and the family’s quality of life.
Given that not everyone has access to and/or the ability to afford individualized education and therapeutic support, the FA Passport and Workbook would be an effective delivery method to broadly share crucial skills-based education with parents and families managing food allergy, especially in under-resourced communities.
Additionally, routine distribution of standardized and trustworthy patient-facing educational tools such as these, especially in digital formats, could potentially decrease the desire to utilize general internet searches for education, which may result in inaccurate, unhelpful guidance and increased fear.
Looking forward beyond the research environment, as educational support tools like these are distributed to patients and families, I would like to see a continued opportunity for parents to periodically evaluate their comfort and confidence levels while utilizing these resources. Through a couple of brief, basic questions, parents would be able to gauge their own growth, which could provide motivation to continue utilizing evidence-based guidance such as this as they continue developing their allergy management and parenting skills.
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