Being the parent of a child with celiac disease has to be stressful. In addition to being concerned because your child has a serious, chronic, medical condition, you (and often the rest of the family) must learn how to provide a completely gluten-free diet. At times, in many homes, the entire family eats gluten free. In other families, separate meals are prepared for the child with celiac disease. Either way, there is stress on the parents and other family members.
Researchers in Italy set up a study looking at the stress suffered by parents of a child with CD. It is important to be able to know when distress is severe enough to be of concern to healthcare providers. The researchers hoped to identify areas necessary for healthcare providers to take note of and offer assistance when possible.
Two groups of parents completed surveys, 74 parents of a child with celiac disease and 75 parents of healthy children who were otherwise similar to the parents of affected children. Both groups took the Parenting Stress Index SF (PSI-SF), a shortened version of the Parenting Stress Index. This test asks about issues that indicate there may be problems between parents and their children in three different areas measuring three different scales. One, Parenting Distress, looks at how at how a parent feels about his or her role. Another, the P-CDI, attempts to determine if parent-child interaction is dysfunctional. The third scale looks at the Difficult Child, asking questions about how hard parenting their child is to a parent. Higher scores in this test indicate more problems, with a cutoff level of 85% indicating a significant problem. There are specific questions in this test that give investigators an idea of whether or not parents are answering truthfully and consistently.
Parents of a child with celiac disease also took the Impact Childhood Illness Scale (ICIS) questionnaire. This was developed to evaluate how much stress parents of children with epilepsy were experiencing. Since the questions do not identify the illness or symptoms specific to epilepsy, it can be used for parents of a child with any chronic illness. The ICIS looks at four areas, the impact of the condition and its treatment on the parents; the impact specifically on the growth and ability to adapt of the child; the impact on the parents; and the impact on the entire family.
The researchers noted how important feeding infants and children, and eating as a family can be in terms of both bonding and rituals. All of this can change when a child has celiac disease. They stated, “…CD diagnosis requires a change from a condition of illness to a condition of life.” Looking at the ICIS, the researchers were somewhat surprised that most of the parents of a child with celiac disease did not report high levels of concern about, “…the impact of the illness and its treatment.” Parents reported much more concern about the impact of the illness on the entire family. It has been estimated that in Italy, some 20% of families with a member who has celiac disease eat gluten free all or most of the time.
Within the ICIS responses, researchers found that parents were concerned that the child might injure himself or herself. They were also likely to say that their child was moody because of his or her illness and also that their child was teased and/or bullied.
Comparing the PSI-SF scores of the two groups of parents, the greatest numbers of parents whose results were 85% or more was in the “Difficult Child” subset. Combining both the ICIS and PSI-SF scores, parents of children with celiac disease expressed the most concern about the impact of the disease on the family and the impact of the disease on the parents.
The authors of this study did not believe that either one of the questionnaires was very effective in discovering specific areas of stress for parents of children with celiac disease, beyond determining that there seems to be more distress for parents dealing with the child, stress on the parents and the family as a whole, and more problems for the child with other people that they anticipated. This was coupled with a lower than anticipated level of stress regarding the specific diagnosis and treatment, which they suggest is because CD is treatable by diet.
They suggested that more research in this area is needed. Since people diagnosed with celiac disease will have it for life, it will affect their parents, family, and friends. Healthcare providers need to be aware of the impact the illness has on everyone, and develop ways to detect this and help deal with it.