Caregivers satisfied with mental health treatment for issues related to food allergy
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Key takeaways:
- 49% sought care for their child, 26% sought care for themselves and 25% sought care for both.
- The most common care included cognitive behavioral therapy and general food allergy consultations.
WASHINGTON — Caregivers who sought mental health treatment for distress due to food allergy were generally satisfied with their care, according to a presentation at the American Academy of Allergy, Asthma & Immunology Annual meeting.
These caregivers also felt their providers were somewhat knowledgeable about food allergy, Melissa L. Engel, MA, clinical psychology doctoral student, Emory University, and colleagues wrote.
“The purpose of this study is to assess the unmet needs for psychological services in patients and families with food allergy, and to find out where people are not getting needs being met,” Engel told Healio.
There are many reasons why families with food allergy would seek treatment for mental health, Engel said.
“One of the reasons I hear most about clinically is anxiety,” she said.
Potential reactions drive this anxiety for both children and caregivers, Engel said. Other sources include social situations that may involve potential allergens, difficulties in school, and bullying.
These families experience sadness and fear after diagnoses and reactions as well, Engel said, in addition to difficulties in adjusting to life after a diagnosis.
Engel and her colleagues also wanted to know how these experiences in mental health treatment went for those families who pursued treatment.
“We know a lot about unmet needs and barriers to care in mental health treatment for families with allergies, but we don’t really know how the experiences go for people that are able to access care,” she said.
Study design, results
The researchers surveyed 1,869 caregivers of children with food allergy as part of phase 1 of the Global Assessment of Psychological Services for FA (GAPS) Study, including Europe, North and South America and Australia.
The cohort also included 411 (22%) caregivers who had received mental health treatment for concerns related to food allergy for themselves (26.4%), for their children (48.7%) or for both themselves and their children (24.9%).
Proportions of caregivers who sought treatment varied by country, ranging from 27.3% in the United States, 11.2% in the United Kingdom and 10% in Brazil to 7.5% in France, 6.1% in Portugal and 5.6% in Australia.
Caregivers (n = 395) turned to their primary care physicians (32.9%), friends (22.3%) and allergists (11.4%) for recommendations for mental health providers. Common sources also included other medical professionals, online searches and support groups.
“Interestingly, more people found a provider via a friend or an online search than an allergist, which is a little bit concerning,” Engel said. “We would hope that maybe more people get recommendations from an allergist.”
The most common treatment in the cohort (n = 395) was cognitive behavioral therapy (CBT; 43%), which is an evidence-based strategy that involves relationships between thoughts, feelings and behaviors.
“Rather than talking out problems, cognitive behavioral therapy is more focused on having more adaptive cognition and then engaging in actions to make behavioral changes,” Engel said.
For example, patients practice different situations that may be difficult with food allergies and identify alternative actions to take to navigate these scenarios, she explained.
Children or caregivers with anxiety may be afraid to attend a birthday party where allergens may be present, Engel suggested. But instead of simply not attending, these families may bring allergen-free cupcakes that they made themselves.
“Or maybe they could talk to the other parents about how to keep their children safe,” Engel said.
Children who are really anxious about being in the presence of their allergen might be exposed to their allergen in certain ways so they can learn that it is safe to be around their allergen as well.
Other common strategies included general food allergy consultations, coaching, medication, school consultations and CBT focused on trauma.
“Then we looked at their percent satisfaction with the treatment, and the majority were at least somewhat satisfied,” Engel said. “And that's encouraging.”
Satisfaction with care in the cohort (n = 349) varied, including 42% who were very satisfied, 34% who were somewhat satisfied, 12% who were neutral, 5% who were somewhat dissatisfied, 4% who were very dissatisfied and 3% who were unsure.
Also, 40% of the cohort (n = 400) said they needed to visit more than one mental health professional because they were unsatisfied with the care that they received at first.
Overall, 62.4% of the cohort said their mental health providers were at least somewhat knowledgeable about food allergy, with percentages ranging from 31.8% in Australia to 96% in Portugal.
Similarly, 72.1% of the cohort said their mental health providers were at least somewhat helpful in addressing concerns about food allergy, again with percentages ranging by country from 45.5% in Australia to 96% in Portugal.
Conclusions, next steps
The researchers noted that although caregivers were generally satisfied with care, few of them received recommendations from their allergists, and many of them needed to try multiple mental health providers.
Currently, the researchers are working on phases 2 and 3 of the study with follow-up surveys and interviews. They also are developing an online toolkit that they hope will improve patient and caregiver outcomes.
“It’s hard to access therapy in general, especially therapists who have specialized experience in food allergies,” Engel said.
The toolkit will aim to improve access and remove traditional barriers, she said. It also would be based on the principles of CBT as well as acceptance and commitment therapy (ACT).
“ACT is about accepting a diagnosis and living in line with your values,” she said. “Then the CBT can help identify different strategies for different social situations and other situations that come up with having food allergies, helping patients work through some of the common challenges that may arise.”
Physicians would share these patient-facing materials with families with food allergy, Engel said.
“That’s something that we would hope we would see more of in the future,” she said. “The next phase of the project would be providing resources related to mental health, whether that be in the form of referring to mental health providers that have experience in food allergies, or whether that be telling patients about this toolkit once it’s available.”
The researchers also gathered qualitative responses from these families. Calling these responses “quite interesting,” Engel said that she and her colleagues hope to publish a paper about them eventually too.
“Some caregivers talked about their experiences going to a therapist, even ones that performed evidence-based treatments like CBT,” she said. “But the therapist just really did not understand food allergies — for example, comparing a fear of peanuts to a fear of spiders.”
Food allergy fears are different from arachnophobia and other common fears, Engel explained.
“While a certain level of anxiety is definitely maladaptive, there’s also an adaptive level of anxiety that’s needed. They need to stay away from their allergen when there is an immediate threat,” Engel said.
These results illustrate how even psychologists can be misinformed about food allergies and why it is important to educate them too, she said.
“I hear about this all the time with patients, how providers just don’t get food allergies,” Engel said. “But it is encouraging to see that most people are satisfied eventually. Once they actually connected with the provider, they were able to get the help that they needed.”
Patients may have allergists to provide clinical treatment for their physical symptoms, Engel said, but mental issues need to be addressed too.
“It would be great if they can be given these resources proactively rather than reactively,” she said.
Allergy appointments should include screenings for mental health and then rapid referrals to specialists when issues are found, Engel said. In the future, she added, multidisciplinary teams could include mental health professionals embedded in the allergy clinic.
“Therapy could be targeted towards the patient’s own unique allergies in collaboration with the team,” she said.
Reference:
For more information:
Melissa L. Engel, MA, can be reached at mlengel@emory.edu.