Final Survey to Explore Experiences and Views of Feeding Breast Milk in a Child with Food Allergies

This survey is aimed at better understanding the breast milk feeding journey* of your child with food allergies. We are interested in the experiences, advice and support parents# have received during this time, so that we can improve the knowledge of healthcare professionals and therefore also for breast milk feeding parents. Participation in this survey is voluntary and completely anonymous and does not collect any information that could identify you.

This survey is supported by the European Academy for Allergy and Clinical Immunology (EAACI) and is led by a Task Force of this association. No industry funding has been received for this survey and none of the Task Force members of EAACI receive any reimbursement for this survey. Please read our privacy notice on the EAACI website to understand how we process your personal data and what rights you have.

This survey has received ethics approval from KU Leuven, Belgium (Number G-2025-9505).

This survey may remind you of a time that was difficult. If you experience any distress because of this survey, please highlight this to your local healthcare professional or the organisation distributing this questionnaire to you, to provide you with further support.

You will see that there are many questions that are quite personal. We would like to reassure you that the feedback is fully anonymous and the information we gather will help us develop healthcare professional education and supporting tools for breast milk feeding parents of children with food allergy from all areas in the world.

This survey will take < 15 min for you to complete.

*Breast milk feeding = this includes breast feeding from the breast and/or expressed breastmilk and providing this in a bottle/cup

#The parent that does > 50 % of the breast milk feeds should complete this survey. They are called the “primary breast milk feeder”. It does not matter if this is via expressed breastmilk or breastfeeding. Your partner can support the answering of the survey, but the questions pertaining education,advice given,elimination diet should be pertaining the primary feeder.

Does your child have a food allergy diagnosed by a healthcare professional? (i.e.paediatrician, allergist, gastroenterologist, primary care physician, dietitian, allergy nurse practitioner)

Has your child received any breast milk feeds (partial or exclusive) in the last year?

Are you the primary breast milk feeder (defined as feeding your child > 50% of the time) of your child?

Thank you for taking the time to look at this survey, which aims to explore recent breast milk feeding journey of children with food allergies. There is no need for you to complete the rest of the survey.

You are eligible to complete this survey. Please can you consent to the following.

1.1 Who is completing this form?

1.2 In what format did your child receive breast milk feeds during their allergy journey (tick all that apply)?

1.3 Is your baby still receiving breast milk?

1.3.1 If "No" what age was your baby when you stopped breastfeeding

1.4 Which country are you from?

Street Address

Street Address Line 2

Country

1.5 How old was the breast milk feeding person at the time of the child's diagnosis of food allergies?

1.6 What is the highest level of formal education of the breast milk feeding person?

1.7 Information on the employment of the breast milk feeding person?

1.7.1 Type of Employment

1.8 Compared to others in your country, would you say your household income is.

1.9 Was the parent who was breast milk feeding physically well during the period of feeding the child?

1.10 How was the emotional wellbeing (i.e. anxiety, unable to enjoy baby, feeling tearful) of the person who was breast milk feeding during the period of feeding the child?

1 is Very bad, 5 is Very Good

2.1 Are you....?

2.2 How many children do you have?

2.3 How long was the maternity leave?

2.4 How long was the paternity leave?

2.5 Did you have any family or other non-healthcare professional support during the breast milk feeding journey?

2.5.1 If yes, could you let us know who provided this support (tick all that are applicable)

3.1 What type of food allergies did/does your child have?

3.2 How old is your child now?

3.3 Did you receive any help (this includes phone, video or in person consultations) to establish your child on breast milk feeding after birth? (tick as many as are appropriate)

3.4 Was the professional help you received covered by the healthcare system or health insurance?

3.5 How old was your child when the symptoms of food allergy first appeared?

3.6 How old was your child when they were formally diagnosed with a food allergy by a healthcare professional?

3.7 Who diagnosed the food allergy?

3.8 Did your child develop food allergy symptoms whilst being exclusively on breast milk feeds (meaning only breastmilk no formula or solid foods)?

3.8.1 If yes, which symptoms (tick all those that are applicable):

3.8.2 If no – when did your child first show symptoms of a food allergy?

3.8.3 Which symptoms did your child present with (tick all those that are applicable):

3.9 Please indicate how the symptoms of the child with food allergy affected the breast milk feeding person’s life?

3.10 What foods have been confirmed by the healthcare professional as being associated with your child’s food allergies whilst your child received breast milk feeds? (tick as many as are appropriate)

4.1 What was the given healthcare professional advice regarding the breast milk feeding person’s diet (Tick all that are applicable)?

Other

4.1.1 Which healthcare professional provided you with advice on breast milk feeding?

4.1.2 If you were advised by somebody else, can you please specify?

4.2 Were foods taken out (i.e., eliminated) from the breast milk feeding parent’s diet due to food allergy concerns BEFORE a healthcare professional was consulted?

4.2.1 Which foods did you eliminate?

4.2.2 If yes, can you tell us why the foods were removed from the diet before a healthcare professional was seen?

4.2.3 Do you think the elimination of the foods from the breast milk feeding person's diet made a difference to your child’s allergy symptoms?

4.3) Which foods were taken out (i.e., eliminated) from the breast milk feeding parent’s diet due to food allergy concerns AFTER a healthcare professional was consulted?

4.4 Do you think the elimination of foods made a difference to your child’s allergy symptoms AFTER you saw the healthcare professional?

4.4.1) If yes, for which foods did you see an improvement in symptoms?

4.5 Was the breast milk feeding person advised to reintroduce foods back to the diet?

4.5.1 If yes, which foods were successfully reintroduced WITHOUT the development of symptoms?

4.5.2 If yes, which foods were reintroduced and RESULTED IN RECURRING symptoms?

4.5.3 Which symptoms did your child present with on reintroduction (tick all those that are applicable):

5.1 Did the breast milk feeding person receive any dietary advice on how to eliminate the foods from the diet?

5.1.1 If yes, can you specify the advice received:

Other

5.1.2 If yes, who provided the dietary advice? Tick all that apply

5.2 How did the elimination diet impact on the breast milk feeding experience?

1 is Negative Impact, 5 is Positive Impact

5.3 In which ways did the elimination diet impact the life of the breast milk feeding person? (Select all that apply)

Rows	Positive Impact	Negative Impact
I lost more weight than I had gained during pregnancy
I developed a vitamin/mineral deficiency diagnosed by my doctor
I was limited in what I could eat when eating out
I was limited in what I could eat at home
I continued to provide breast milk longer because I did not know what else to give to my child
I stopped breast milk feeding because the elimination diet was too difficult to continue and introduced formula
The elimination diet had a significant negative effect on my relationship with my partner
I spent more money on the expensive replacement foods and / or supplements
I was worried about the introduction of new foods to my baby
My child’s symptoms improved/resolved and I was relieved/less anxious
My child’s symptoms improved/resolved and I was able to sleep better
My child’s symptoms improved/resolved and he/she was so much happier
My child’s growth improved significantly

5.4 Did you think the healthcare professionals involved in your child’s care were supportive of breast milk feeding your child with food allergies?

1 is Not supportive, 5 is Very supportive

5.5 How helpful was the advice given by the healthcare professional (ie, doctor, dietitian, nurse, lactation) about breast milk feeding your allergic child?

1 is Not helpful, 5 is Very helpful

5.5.1 Please add any further information that you think is important with this question

5.6 Did any healthcare professional involved in your child’s care suggest that you add a special infant formula?

5.7 Did any healthcare professional involved in your child’s care suggest that you stop breast milk feeding completely and use a special infant formula?

5.7.1 If yes to the above questions, why do you think the healthcare professional suggested a special infant formula for your child (tick all appropriate options)

Other

5.8 Did you, as parents, at any time make the decision (without influence of a healthcare professional) to introduce a special infant formula to replace or supplement breast milk feeding?

5.8.1 If yes to the above question what were the reason for this? (tick all appropriate options)

5.9.1 Please tell us what would have improved your breast milk feeding journey - Healthcare professional knowledge

Rows	Yes	No
The healthcare professionals involved in my child’s care has a better understanding about food allergy and how it can present
My healthcare professionals telling me that symptoms (such as rash, eczema and reflux/spit-up) may not always be related to food allergy
The key information that a child can outgrow food allergies and can thrive as peers despite the elimination diet

5.9.2 Please tell us what would have improved your breast milk feeding journey - Professional association support

Rows	Yes	No
The national breast milk feeding association understand more about food allergy and how it can present
Finding an evidence-based food allergy support group I could trust
More information about the breast milk feeding journey with diet (what to expect)
To receive more information about food allergy symptoms when pregnant

5.9.3 Please tell us what would have improved your breast milk feeding journey - Healthcare professional support

Rows	Yes	No
Better healthcare professional support for breast milk feeding
Being referred to a registered dietitian/nutritionist with food allergy knowledge
Adapted recipes for common allergens (Recipe book suggestions)
Reliable information on the avoidance diet to be adopted by the breast milk feeding person (how to eliminate foods)
Avoiding unnecessary food eliminations
More information about vitamin and mineral supplements to take when the breast milk feeding person is on an elimination diet
More information about introducing solid foods and what symptoms to expect
Easy access to a healthcare professional that specialises in food allergy
Rapid diagnosis of my child's food allergies

5.9.4 Please tell us what would have improved your breastmilk feeding journey - Family, friends and work support

Rows	Yes	No
More support from family, friends and colleagues/boss
Flexible working hours, not to be forced to turn back to working full-time, longer paid maternity leave
Interaction and cooperation with other parents who are breast milk feeding or have breast milk fed their child (ren) while on an elimination diet

5.9.5 Please tell us what would have improved your breastfeeding journey - Food Alternatives

Rows	Yes	No
Easy access to alternative foods (availability and affordability)
Safe food availability at hospital, restaurants and hotels

5.9.6 Please tell us what would have improved your breast milk feeding journey - other

Rows	Yes	No
Avoiding social media (i.e. Facebook, Instagram, Blogs, Websites) because I did not know what the right or wrong advice was
Subsidies or insurance coverage for breast milk feeding-related expenses (pumps, storage bags, consultations)
More psychological support

5.10 Please feel free to share with us any other aspects of your allergic child’s breast milk feeding journey, that is not covered in this survey.

Thank you for taking the time to complete this survey!

If you are interested in the results, this survey will be published and distributed through EAACI and its patient associations.

Survey to Explore Experiences and Views of Feeding Breast Milk in a Baby with Food Allergies

Mandatory Question for Entering the Survey

Section 1: Information About You (the primary person feeding your child)

Section 2 | Information about Your Family

Section 3 Information around the diagnosis and presenting symptoms of your child with food allergies

Section 4: What Advice did you receive in regard to Breast Milk Feeding

Section 5: What support did the Breast Milk Feeding Person receive