Table 3.

Summary of integrated findings related to parents' experiences.

Integrated findinga	Contributing studies n Sample size across the studies N	Qualitative data example	Qualitized datab example
1. Recognizing an anaphylactic reaction	Qualitative studies = 8 Quantitative studies = 1 N = 363	Hu 2005 (34): “…The other day he started to rub his eyes and sure enough we had just eaten a peanut butter sandwich, so for the next half hour I was constantly watching him…”➔ Able to recognize Vargas 2011 (23): “…And for the first 1 ½ year. I didn't know what my daughter [had], I didn't have Epi pens at home because I just didn't get it… I just didn't know the symptoms…”➔ Unable to recognize	Teoh 2016 (14): Parents with greater perceived severity of child's food allergy were able to recognize anaphylaxis.➔Able to recognize
2. Managing and responding to an anaphylactic reaction
2.1. Ability to respond and take action quickly	Qualitative studies = 2 Quantitative studies = 3 N = 181 (sample size not reported in one study)	Chooniedass 2018 (40): “…things are going to go into hyper overdrive and eventually shut down… You're in a race for time to make sure that things get fixed properly in a timely fashion. (M2).”➔ Acting quickly Munoz 2014 (33): “…So we rushed to the drugstore got him some Benadryl [and] took him in [to doctor's office].”➔ Acting quickly	Herbert 2013 (8): Approximately two-thirds of the interviewed mothers carried an EpiPen with them and more than 10% had used one on their child at least once. ➔ Competency Warren 2015 (16): Mothers and fathers responded differently to questions related to how they would handle a problem arising with their allergic child, knowing what to do when problems arise, believing that they can solve the problem when it happens, they can calmly handle a crisis situation involving the child, and knowing what steps to take when the child is having a reaction. ➔ Competency
2.2 Hesitation to act	Qualitative studies = 7 Quantitative studies = 2 N = 318	Chooniedass 2018 (40): “We should have given the EpiPen, but it was the fear of ‘I'm going to make this worse for my child.’ Like he's already dealing with the struggling… we just need to get him to the hospital because I don't want to hurt him more.” ➔ Hesitant Munoz 2014 (33): “Even though Jonathon assesses that Katy's allergic reaction was probably anaphylaxis, he still says that he would not give the Epipen if he were to be in the same situation again. He prioritizes her well-being and diffusing the stress of the allergic reaction over the medical concerns that Dr. Zawadzi raises.” ➔ Hesitant	Kim 2005 (9): Parents reported of not having administered epinephrine injection although they were told by their physician they should have used it in a prior situation. ➔ Hesitant Topal 2013 (15): More than half of the parents who did not have a prescribed epinephrine injection believed the injection was no longer needed.➔ Hesitant
2.3. Confidence using epinephrine injection	Qualitative studies = 7 Quantitative studies = 3 N = 1509	Graceffo 2008 (39): “The third participant that was comfortable administering an epinephrine shot was a mother that had at the time of the interview already administered several epinephrine shots to her son for what she felt were severe reactions.”➔ Comfortable administering the injection Chooniedass 2018 (40): “Doubt. Self-doubt; do I, am I doing the right thing? Am I over-reacting? Am I under-reacting?…I was questioning myself while I'm preparing to give it. (F2)”➔ Lack of confidence to administer the injection	Herbert 2013 (8): Majority of mothers reported being ready to manage a reaction by carrying an epinephrine injection with them at all times.➔ Comfortable to administer the injection Chad 2013 (5): More than half of the parents reported being afraid/somewhat afraid to use epinephrine injection.➔ Lack of confidence to administer the injection
2.4. Lessons learned	Qualitative studies = 4 N = 54	Dobbin 2019 (32): “I learned the hard way to call an ambulance to go to the hospital because one of his reactions when he was about 5, I gave him the epinephrine and ummm he was having a very severe reaction that time and I gave him the epinephrine and decided to get in the car and drive myself…”➔ Learn what to do Chooniedass 2018 (40): “Always think anaphylaxis even if there's been a long delay between a potential exposure, even if you haven't seen it. Because if you don't see it, your tendency is to figure out what's wrong and I've been caught in that trap so many times where you're trying to figure out was there an exposure? …Rather than just recognize the symptoms and respond appropriately. (F2)”➔ Learn to recognize	None
3. Emotional impact of caring for a child with anaphylaxis
3.1. Anxiety and panic	Qualitative studies = 4 Quantitative studies = 11 Mixed method = 1 N = 1546 (sample size not reported in two quantitative studies)	Gallagher 2011 (27): “I don't want the pen, I don't want the pen,’ she just kept screaming … there was no way that I could have safely gave her the EpiPen in the situation. There was too much panic, she was hysterical, I was kind of hysterical myself, not that I was screaming or anything, you know, but I thought If I give her this am I going to hurt her or am I going to put it in a vein, …”➔ Panic during a reaction Abdurrahman 2013 (42): “Nearly all participants (94%) experienced anxiety after their child's first reaction: “The frightening part was what could have been. And so that was a shock to the system, that I had nightmares for weeks on end after that…”➔ Anxiety after a reaction	Song 2018 (12): Some parents reported being too nervous that they were not able to use an EAI properly.➔Panic during a reaction Ackerman 2008 (17): “Parents reported experiencing significantly higher levels of stress if they had a child with symptoms associated with anaphylaxis than parents of children without symptoms associated with anaphylaxis.”➔ Anxiety before a reaction
3.2. Fear and trauma	Qualitative studies = 14 Quantitative studies = 2 Mixed method = 1 N = 1551	Rouf 2012 (35): “Horrible, horrible, thought she was going to die (…) I was just watching her to see if she was breathing (…) it was horrible. (Rebecca,5:74).”➔ Traumatic Munooz 2014 (33): “I was away out shopping or something, and [his dad] gave him the bottle, and he immediately passed out, stopped breathing… [His dad] called me; I met them at the hospital, but I didn't know if he was alive or dead sort of … So that was very traumatic.”➔ Traumatic	Springston 2010 (13): Parents of children with a recent allergic event were frightened that the child would have a severe reaction.➔ Fear Fedele 2016 (7): Compared to Balanced Responders, Anxious High Responder mothers rated the likelihood of their child dying due to anaphylaxis significantly higher.➔ Fear
3.3. Emotional burden, regret, and guilt	Qualitative studies = 3 Quantitative studies = 8 N = 1770 (sample size not reported in one quantitative study)	Carstensen 2018 (37): “My husband and I are vigilant about everything that we give Nancy. We do read the back of everything but we made a mistake once that left us feeling embarrassed and disgusted in ourselves, and the reality is it will probably happen again in the future.”➔ Guilt Graceffo 2008 (39): “Several mothers mentioned during their interviews that they felt that they should have administered epinephrine for a reaction in the past and did not. They go on explain that they have really beat themselves up and blame themselves for not giving the medicine when they felt that their child probably needed it.”➔ Regret of failing to manage a reaction	Fathi 2016 (6): Majority (~70%) of the parents in the survey were moderately to extremely troubled with the worry that they will not be able to help their child if they had an allergic reaction.➔ Emotional burden Allen 2015 (2): Parental burden was significantly greater in parents who reported administering an epinephrine injection to their child.➔ Burden of treatment
4. Interaction with health system and HCPs
4.1. Frustration	Qualitative studies = 5 Quantitative = 1 Mixed method = 1 N = 309	Akeson 2007 (25): “Nobody told us. We actually had to ask what happened to him … Nobody came around and said, ‘Well, we think he has had an anaphylactic reaction’. Anaphylaxis was never mentioned…I said ‘Is there anything we should avoid or anything we should do, does he need any medicine’. And they said ‘No, just carry on as before’.”➔ Frustrated with HCP's competency Chooniedass 2018 (40): “I know from that first time when we got to the hospital and they were like why didn't you give the EpiPen? And they were basically like yelling at us.”➔ Feeling berated	Gore 2016 [41]: More than a quarter of parents (~39%) felt that the physician did not know enough about their child's allergic condition.➔ Frustrated with HCP's competency
4.2. Negative experiences	Qualitative = 4 N = 52	Munoz 2014 [39]: “He [doctor] looks at me and is like, ‘You use the Epipen next time! Anytime you know that he's had exposure to peanuts you use that Epipen.’ (imitating a stern voice) And I was like, ‘Okay’ (in feigned frightened voice, nervous laugh). And so he kind of went in to explain. At first I kind of felt like chastised or whatever, like I'm such a bad parent (says in a low 144 voice).” Chooniedass 2018 [47]: “I know from that first time when we got to the hospital and they were like why didn't you give the EpiPen? And they were basically like yelling at us. (F4)”	None

EAI: Epinephrine auto-injector; HCP: Healthcare provider.

^aWhere possible, qualitative and ‘qualitized’ data from included studies where integrated based on similarities in their meanings and contents.

^bQuantitative data extracted from quantitative and mixed-method studies were transformed into texts based on meaning and content.