Scope of Work: Therapy/counseling providers working with the allergic population offer psychosocial, quality of life, and mental health support to those managing a number of allergic conditions, most notably food allergy. A multidisciplinary approach to allergy counseling/therapy is highly encouraged. This includes collaborating with allergists, physicians, and allied healthcare providers involved in the allergic patient's care.
Knowledge Set: Due to the unpredictability and uncertainty of life with allergic diseases, it's important for therapy/counseling providers to understand the medical aspects of allergic conditions, as well as the components of allergy-related anxiety and the behaviors it can trigger.
Quality Of Life Impacts Data For Those With Food Allergy & Asthma
According to the American College of Allergy, Asthma and Immunology (ACAAI), "allergies, including allergic rhinitis, affect an estimated 40 million to 50 million people in the United States. Some allergies may interfere with day-to-day activities or lessen the quality of life."
FOOD ALLERGY QUALITY OF LIFE (QoL) IMPACTS Common QoL impacts* for those managing food allergy:
Health-related impacts, including nutritional and medical
Increased anxiety levels and fear of death, which may lead to unhelpful behavioral and eating patterns
Trauma and traumatic responses due to food allergy reactions and anaphylaxis
Parent/child dynamics impacted by parental hypervigilance, anxiety, stress, and overwhelm
Family dynamic and relationship impacts due to lack of trust in others' ability to safely manage allergies
Life experience limitations, specifically including traveling, eating out, and social outings
Lack of access to safe foods and necessary medications add additional burdens
Financial burden related to cost of emergency medications and allergen-friendly food
Snapshot of current data and information* about QoL impacts for those managing food allergy:
92% of parents say they’re always or occasionally fearful of their food allergic child’s safety (KFWA, 2019)
75% of allergy parents reported that food allergies cause fear/anxiety for their family (KFWA, 2019)
1 in 4 parents report that food allergies causes a strain on their marriage (Gupta et al, 2010)
Mothers rated their own psychological and physical quality of life worse than fathers rated theirs, and had higher scores than fathers for anxiety and stress (King et al, 2009)
Greater maternal overprotection was associated with lower child QOL as well as greater dietary and social limitations independent of food allergy outcomes (Warren et al, 2016)
40% of parents reported experiencing hostility from other parents when trying to accommodate their child's food allergy (Warren et al, 2015)
*(Information sources: a variety of studies listed here and provider experience working within this niche) Allergy-focused psychosocial studies consistently show that living with the unpredictability and uncertainty of food allergies and allergic diseases impacts anxiety and quality of life (QoL). Recent research notes that "nearly 1 in 5 adults believe themselves to be food allergic, whereas only 1 in 20 are estimated to have a physician-diagnosed food allergy." Therefore, quality of life (QoL) impacts can occur even when someone hasn't officially even been diagnosed with a food allergy, and is living with a self-reported food allergy.
ASTHMA QUALITY OF LIFE (QoL) IMPACTS Common QoL impacts for those managing asthma:
Limitations in physical activity
Fatigue, exhaustion and poor sleep quality
Limitations from severe asthma may lead to feelings of isolation and loneliness
Negative financial and emotional consequences due to life limitations
Financial burden related to the cost of asthma management
Psychological functioning has direct and indirect effects on asthma quality of life
Asthma studies show a very strong correlation between family functioning and child psychological functioning
Snapshot of current data and information* about QoL impacts for those managing asthma:
Many more children and adults with severe asthma experience poor mental health compared with those with milder asthma (depression, 25% v 9%; anxiety, 38% v 30%), and report difficulties in relationships, stigma, and low satisfaction with life
Emotions and thoughts commonly described include worry, fear and panic (particularly regarding inability to breathe or not having medications when needed), sadness, worthlessness, frustration and irritability. These emotions and thoughts often generate negative coping strategies, such as avoidance of physical activity
Major functional limitation is another feature reported by 70–100% of patients with severe asthma, and is characterized by decreased ability to complete daily activities (85%), physical activity limitation (69%), loss in productivity at work (73%) or study (64%), and limits in leisure and lifestyle (78%)
Most patients report that asthma prohibits activities they would like to do (78%), with many reporting limitations in pet ownership (49%), going out with friends (38%), taking holidays (28%) and limited job prospects (21%) or participation at school (14%)
People with severe asthma are more likely than those with milder asthma to be absent from work (27% v 18%) or feel impaired at work (73% v 43%)
Family psychological functioning predicts one aspect of health status (long-term asthma control) and both child and parent quality of life
Research information highlights the importance of considering psychological factors as well as health status factors in examining asthma specific quality of life outcomes
The Need and Demand For Allergy Counseling Is There!
Simply stated, the food allergy and allergic disease counseling/therapy niche is an example of "If you build it, they will come!"
Just as the rate of allergic disease continues to grow worldwide, the demand from the allergy community for psychosocial tools and support continues to grow as well. Allergic individuals and families want to learn how to more effectively navigate the unpredictability and uncertainty of allergies!
A recent study explored psychosocial coping in food allergy, surveying parents/caregivers of food allergic kids to gain insight into caregivers’ and their children’s emotions about FA, their current coping strategies, and their interest in testing new coping strategies to manage their FA-related emotions. In addition to offering a breakdown of coping strategies utilized most, over half (66%) of respondents said “yes” when asked if they were interested in trying new coping interventions for themselves and their children. This data is a clear indication for a need for behavioral healthcare professionals to address this gap in psychosocial support for food allergy families.
It's important to note that while other sources of allergy support, such as online support groups and allergy apps can be beneficial, as they offer opportunities for connection and anecdotal information, most are not monitored and/or guided by allergy-informed licensed clinical behavioral healthcare providers. As such, the foundation for such clinical guidance and messaging provided through these support sources may not be regulated, well-monitored or clinically sound, which can lead to additional QoL impacts for those managing allergies and, in some cases, even contradict the guidance allergic individuals are receiving from their allergist.
Therefore, even though the food allergy and allergic disease counseling niche is quickly growing and the demand is there, it's crucial to ensure that the foundation for allergy-related behavioral health guidance is clinically sound, and preferably led by allergy-informed licensed clinical behavioral healthcare providers.
Below are comments from the allergy community, illustrating the need and the demand for these services:
"Access to psychological support should go hand in hand with this diagnosis."
"Part of treating overall health is including mental health as a critical component to managing chronic illness/diseases."
"I tried two non-allergy-informed counselors to deal with the PTSD/anxiety from my child's allergies and they just never quite got it."
"Allergy-informed counselors could help with allergy testing fears - my child cries and is nervous weeks before these appointments!"
"I'm 15 years into the allergy journey and when I look back, fear is still the dominant emotion."
"My kids were so scared of going in to anaphylaxis, and I have had to give epi injections to both of them many times. They would ask me “Mommy, am I going to die?”. And now, my daughter is battling for her life with a deadly eating disorder. I wish we would’ve had someone (who understands allergies) to talk to."
"Food allergy counseling is one tool that can help us when we're overwhelmed and worrying about unpredictable situations."
"Food allergy counseling can help us evaluate information and know whether it's reliable and evidenced-based"
"Allergy counseling services can help us learn how to parent our food allergic kids in a developmentally appropriate way, and support us as we coach them through managing life with food allergies (when we can barely process this new life ourselves)."
"Living life with food allergies requires a lot of support from other people to keep the food allergic person safe and there's so much potential for conflict due to a lack of understanding or compassion."
"The social consequences have a large impact on quality of life and mental health for the entire family."
"The stress of managing food allergies is unique. Skilled mental health professionals trained specifically to work with the food allergy community are important to relieve the stress to better manage food allergies."
"Feelings of marginalization and exclusion may be internalized when involved in social situations and institutions while managing allergies."
"Trauma seems to be a common thread in both caregivers and folks with food allergies. This must be treated, by a professional with a clear understanding of food allergies."
Potential Practice Benefits Of Incorporating Psychosocial Support
There are various ways of incorporating psychosocial support into your practice's patient care model:
Include allergy psychosocial information and tops in patient emails, newsletters and handouts
Offer educational psychosocial and QoL patient webinars led by an allergy-informed therapist
Assess and address allergy social, emotional and QoL topics at intake and/or during appointments
Follow-up "check in" phone calls for newly-diagnosed and those recently experiencing allergic reactions
Refer patients needing extra support to allergy-informed therapists in your area or state
Add an allergy-informed therapist to your practice, especially if offering oral immunotherapy
Not only do patients benefit from incorporating psychosocial components of care, but there are also benefits for allergy practices, such as:
Marketing: Sets your practice apart from others who aren't prioritizing psychosocial patient support
Referral Network: Strengthens referral relationships with allied healthcare providers
Patient Satisfaction: Allows your practice to more effectively understand and support your patients
Individualized Patient Care: Helps you practice offer individualized patient care
Treatment Follow-Through/Adherence: Offers tools to help patients doing oral food challenges and OIT
How Do Allergy-Informed Therapists Help Those With Allergies?
Research clearly points to quality of life and mental health burdens for individuals and parents/caregivers managing allergic diseases, especially food allergies. So how can licensed behavioral healthcare clinicians (i.e. therapists, counselors, psychologists, social workers, marriage and family therapists) help your patients?
OVERALL GOALS FOR FOOD ALLERGY & ALLERGIC DISEASE COUNSELING: The main overall goal for food allergy and allergic disease counseling is focused on helping individuals and families develop a healthy relationship with allergy anxiety and understand its usefulness in allergy safety, and to find their "just right" balance between the allergy anxiety and quality of life.
Hypothesized relationships between food allergy-related quality of life and anxiety according to “The Goldilocks Principle”
often attributed to allergy-specific fears, including life limitations, anaphylaxis, epinephrine use, and death
a natural response to the often uncertain and unpredictable nature of food allergy and allergic diseases
sometimes short-lived and situation-specific, but can also be ongoing, excessive, and pervasive
sometimes counterproductive, leading to excessive avoidance, which fuels more anxiety and unhelpful actions
built on the very real possibility that an allergic or anaphylactic reaction could happen at any point, which results in living with high levels of ongoing emotional distress
FAA and allergy-related anxiety IS NOT:
built on irrational fears
something to feel guilty about
not a sign that someone isn't effective at living with their allergy
However, it is helpful for those experiencing FAA and allergy-related anxiety to learn how to manage it in a way that doesn’t keep them from living their best lives.
Just as therapists well-versed in other chronic health diagnoses such as diabetes, the allergy community benefits most from therapists who are well-versed in the basics of allergic diseases and the psychosocial/QoL impacts on lives.
Allergy-informed therapy providers can offer a variety of supportive services, including addressing:
psychosocial education, particularly for newly-diagnosed, post-anaphylaxis, and at key transitions in life
allergy-anxiety management strategies focused on balancing quality of life and allergy anxiety/fear
maladaptive and unhelpful behaviors as a result of allergy anxiety or in response to it
a variety of QoL impacts, focusing on making adjustments that positively impact QoL
other related stressors, emotions, impacts and anxieties
parent/caregiver anxiety, focusing on management to limit its impacts on child development
other intense emotions, such as guilt, grief, sadness, and frustration
trauma as a result of allergic reactions and anaphylaxis
learning how to live fully even with the diagnosis through counseling and coaching strategies
FAC Allergy Counseling Tools To Know About
Even if you don't have allergy-informed therapy providers on your referral list or a therapist collaborating with your allergy practice, these Food Allergy Counselor resources can help transform your practice into one that incorporates psychosocial components of patient care.