Living with Anaphylaxis: A Look At How Families Cope

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You might have wondered how your family’s adjustment to living with a potentially life-threatening food allergy compares to other families in the same situation.

Are you more anxious, wary, or restrictive than other households, or do most families fall into similar patterns? Work done by some Canadian researchers may help answer this question.

They interviewed the parents of 17 children (18 mo. to 18 yrs.) who had been diagnosed by a doctor “as having an anaphylactic condition” related to peanuts; some kids also had allergies to other nuts, or eggs. The participants were from various cultural backgrounds and had lower and middle socioeconomic status. Male and female children were evenly represented.

Here is a summary of seven coping topics the scientists looked into:

Limitations. At the time of their child’s diagnosis, most parents said they received insufficient allergy management information, so were anxious and at a loss about how to proceed. The parents felt, at the very least, they should have been informed about the seriousness of anaphylaxis, given adequate strategies for allergen avoidance, provided clear instructions about using auto-injectors, and supplied with referrals to allergy related support groups.

Safety Management. In all but four of the families, allergy safety management was primarily shouldered by the mothers; most fathers were designated as “helpers.” A significant aspect of managing allergy safety, and the family’s anxiety, was making sure all the child’s caregivers were adequately informed about - and cooperating with - the necessary safety measures.

Coping Patterns. During the interviews, a coping pattern emerged characterized by initial high anxiety leading to information gathering and concrete risk management strategies. Once the strategies were in place, anxiety subsided to a degree though vigilance continued. Whenever anxiety fell to a low level because of prolonged periods free from allergy reactions, vigilance and caution also diminished. This cycle renewed and repeated itself after accidental exposures, in the light of new risk information, or when developmental changes exposed children to more risks (e.g., starting school, increased independence).

Children’s Reactions. The allergic children’s emotional responses to living with anaphylaxis varied, as you might expect, with their personalities, attitudes about adversity, and their memory of allergic reactions. The kids generally considered food and activity restrictions a negative, and most family members felt impacted by the restrictions.

Developmental Concerns. Their child’s age-appropriate developments, and the lessening of their own supervision, triggered anxiety in the parents. This was most acute in parents of children aged 6 to 11, when the child’s ability to self-protect lagged behind their growing independence and understanding of allergy dangers. With adolescents, parents were less concerned about the child’s level of caution, and more concerned about whether he or she always carried an auto-injector.

Coping Strategies. Besides the usual coping strategies (e.g., label reading, careful food prep), parents tended to accompany young children to social events beyond the age when parents of non-allergic kids do so. Some of these parents worried about the effect this degree of protectiveness had on their child’s development.

Coping Obstacles and Supports. Coping obstacles included limited public understanding, unwillingness by others to accommodate their child’s needs (including some hostility), inconsistent information and labeling practices, and having multiple food allergies. Coping supports included having adequate information, supportive doctors, family, friends, teachers, and other caregivers, increased public awareness, and maintaining a positive attitude.

Some of these parent’s concerns may have been mitigated in the decade since this study took place. However, much of what they said is still voiced by parents today because the threat of anaphylaxis remains. When it comes to the safety of our food allergic children, anxiety - and the vigilance it inspires - will always be present.

Source: Mandell, Deena; Curtis, Ruth; Gold, Milton; Hardie, Susan; Anaphylaxis: How Do You Live with It? Health and Social Work, 30/4 Nov. 2005, 325+. Photo credit: liz west

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