Adults, caregivers living with food allergies need improved access to psychological care
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Key takeaways:
- Less than 20% of adults were screened for FA-related psychological distress.
- The most participants reporting distress were from the U.K., Australia and Brazil.
Adults and caregivers reported psychological stress caused by food allergy. However, only a fifth of patients reported seeking mental health resources, according to a study published in Allergy.
“We knew there was a significant impact on distress from food allergy, and in the U.K. and the U.S., there was a lack of psychological support,” Rebecca C. Knibb, PhD, professor of health psychology at Aston University in Birmingham, England, told Healio. “We did not know if this was also the picture in other countries.”
“There was also no research on experiences of patients and families accessing psychological support,” she continued. “We set up the study to look at this on a global level and wanted to use the data to develop an online intervention or toolkit that patients and caregivers could use to help them manage their food allergy-related distress.”
Methods
This study utilized a cross-sectional online survey design given to 1,329 adults with food allergy (FA; mean age, 38.14 years; 70.2% women) and 1,907 adult caregivers of children with FA (mean age, 38.45 years; 75.2% women). Participants hailed from 20 different countries.
Researchers developed a questionnaire that examined each participant’s sociodemographic characteristics, FA characteristics, FA-related psychological distress, psychological distress screenings at FA-related appointments, FA-related mental health appointments and barriers to seeking mental health care. Questionnaires were completed anonymously.
Results
Among the adults with FA, the most common allergies were peanut (36.1%), tree nut (30.6%) and cow’s milk (26.9%). A prescription for an adrenaline autoinjector (AAI) was found in 49.1% of adults, and 50.1% had a history of anaphylaxis.
Caregivers reported their children with FA (mean age, 8.6 years; 60.6% boys) had a mean age of diagnosis of 4.31 ± 3.68 years. A prescription for an AAI was found in 69.5% of children, and 47.9% had a history of anaphylaxis.
Among the adults surveyed, 67.7% reported experiencing psychological distress due to their food allergy, whereas 77.2% of caregivers reported experiencing distress as a result of their children’s food allergy.
Most participants reported feeling anxiety about allergic reactions (64.1% adults; 74.4% caregivers). Adults commonly reported anxiety about living with their food allergy (62.5%), sadness about the impact of FA on their lives (54.1%) and FA-related bullying (35.2%). Caregivers reported a fear of trusting others with their child’s care (71%), worry that people will underestimate the seriousness of their child’s FA (59.7%) and sadness about the life impact of FA (55.6%).
A child experiencing psychological distress related to FA was reported by 51.6% of caregivers. The most common distresses experienced by children were sadness about life impact (57.4%) and anxiety about allergic reaction possibility (56.4%).
Researchers made comparisons across 10 countries to find associations between FA-related distress and country of residence among adults, caregivers and their children (P < .001). They found that proportions of FA-related distress among adults was significantly higher in Brazil (95.5%), the U.K. (93.7%) Canada (81.8%) and Australia (78.6%) compared with adults from Germany (55.8%) and France (44.9%).
Greater proportions of caregivers from Brazil (97.3%), Australia (96.6%) and the U.K. (85.6%) also reported higher distress compared with caregivers from Germany (60.6%), France (54.6%) and Spain (50.3%). Proportions of caregivers reporting FA-related distress in their children were higher in Australia (72%) and the U.K. (70.9%) compared with Spain (35.1%) and Portugal (42.4%).
Among the adults, 19.4% were screened or assessed for FA-related psychological distress during an FA-related appointment. Among caregivers and children, 13.9% and 15.8% were screened, respectively. Significant cross-country variability was found in psychological distress screenings among adults, caregivers and children (P < .001).
Among adults in the U.K. and Canada, 2.7% and 7.1% of adults were screened, respectively, compared with 45.9% in the U.S. and 34.5% in Germany. Smaller proportions of caregivers were screened in Australia (0.8%), Brazil (8%) and the United States (8.5%) compared with Germany (51.5%). Also, smaller proportions of children were screened in Australia (3.4%), Brazil (9%) and Canada (9.7%) compared with Germany (40.7%).
Visiting a mental health professional for the treatment of FA-related psychological distress was reported by 22.9% of all adults and 22% of caregivers. Among caregivers, 27.5% visited a provider for themselves, 48% for their child and 24.6% for both the caregiver and the child.
Significant cross-country variability was also found among adults and caregivers in regard to visiting a mental health professional (P < .001). The lowest proportion was seen in the U.K. at 11.5% compared with the U.S. (35.1%), Brazil (34.4%), Spain (30.3%) and Australia (30.2%). Among caregivers, greater proportions were found in Germany (35.5%) and the U.K. (39.7%) compared with caregivers in Portugal (14.6%) and the U.S. (17.9%).
A mental health diagnosis related to FA was found in 10.6% of adults with a significant cross-country association (P < .001). Adults in the U.S. (24.2%) reported a mental health diagnosis in a larger proportion compared with adults in Portugal (5.4%). Among caregivers, 29.3% reported being diagnosed with a mental health disorder and 12.6% reported their child had a disorder. Both showed significant cross-country associations (P < .001).
Caregivers in the U.S. (43%) and the U.K. (39%) saw higher proportions of a reported mental health disorder related to their FA compared with other countries such as France (12.3%). Among children, the U.K. (21.6%) and Germany (19.3%) had the highest proportions, whereas Australia had no reports of a mental health disorder related to their FA.
The most common barriers to finding mental health services by those who have seen a mental health professional as well as those who have not seen one were cost, lack of medical insurance, lack of doctor referral, lack of available practitioners, lack of childcare and time constraints.
Conclusions, further research
“We were surprised at the differences across countries,” Knibb said. “There were no existing data on the picture in places like Brazil, France, Germany or Spain. We did not expect there to be such large differences in reported psychological distress and access to psychological services.”
Knibb further explained they were not sure why differences existed across countries.
“It might be due to different health care systems and ease of access to support, different emphasis put on food allergy and food allergy-related deaths in the media,” she said. “We are carrying out further research to investigate reasons for these differences.”
According to Knibb, it is important to acknowledge that food allergy is linked to psychological distress.
“Asking about any distress and signposting to the most appropriate support is important,” she said. “If no psychological support is available, the relevant patient organization for that country will have useful information on their website.”
Knibb hopes that these research findings highlight the need for psychologists in the allergy field.
“We hope that our work highlights the importance of access to psychological care for patients and families, and we are working on ways in which we can improve that access, including the development of our online toolkit, which patients and caregivers will be able to use to help manage food allergy-related distress,” she said.
Reference:
- Psychological distress in adults and caregivers about food allergy is widespread and unrecognised, finds Aston University-led research. https://www.aston.ac.uk/latest-news/psychological-distress-adults-and-caregivers-about-food-allergy-widespread-and. Published Oct. 3, 2024. Accessed Oct. 18, 2024.
For more information:
Rebecca C. Knibb, PhD, can be reached at r.knibb@aston.ac.uk.
Perspective
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As a family therapist working in the allergy field, I’m grateful that the Global Access to Psychological Services for Food Allergy study continues to highlight the need to assess psychological impacts and bridge the gaps in accessible psychological services and resources for those managing food allergy.
What’s more, as many studies have focused on pediatric and caregiver psychological impacts and distress, I appreciated that this study also explored how managing food allergy impacts adults. Additionally, the data illustrating variability across countries offered insightful perspectives as well.
Based on my own experience working with caregivers and adults, the findings from this study were not surprising. The reported themes, anxiety sources and levels of distress are in alignment with what I typically see in my own caseload.
With that said, two themes stood out to me. First, the psychological burden of those managing food allergy is still often underappreciated and unrecognized due to a lack of clinical screening.
Second, there’s still a major gap in psychological support services and resources for individuals and families managing food allergy.
As the study discussion noted, in an ideal world, patients of all ages and caregivers would receive routine screening for psychological distress, or at least at key times. This would help uncover themes and worries that patients may not bring up during their appointments, but may be significantly impacting their lives.
What’s more, these routine screenings aren’t only beneficial for patients. They also can help guide allergists and their teams to engage in skill-building discussions about specific, stressful aspects of food allergy management that could help patients gain confidence, decrease psychological distress levels, and develop a relaxed readiness approach to life with food allergy.
While simply assessing and discussing these themes may feel immensely helpful to some, there will still be patients and families who need more support outside of allergy appointments. Yet, as the study clearly states, gaps in accessible services and resources still exist across the globe. This is the main reason I created the Food Allergy Counseling Directory in 2018 — to help create a centralized place for patients and practitioners in the U.S. to utilize when individuals and families managing food allergy need more support.
Until more resources are developed, allergists and their allergy care teams can help bridge these gaps by providing more targeted patient education that helps patients address and manage the common food allergy-related psychologically distressing themes presented within this and other studies.
To that end, I’ll share three practical recommendations for allergists and their teams to help patients manage the psychological burdens of food allergy:
1.) At key times, use validated screeners and/or simply ask patients “Are there aspects of food allergy management that are causing anxiety or distress that’s impacting your ability to live the way you want to?” Then use these insights to tailor informative, skill-building discussions that target those specific topics.
2.) Proactively discuss key psychologically distressing safety themes such as how to accurately assess allergen risks, use an AAI and navigate social experiences safely.3.) In lieu of food allergy-informed mental health clinicians or resources when additional support is needed, refer patients to therapists who work with chronic health conditions and/or health anxiety.
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