Researchers from the Children’s Healthcare of Atlanta and Emory University recently published the results of a small study investigating the subject of guilt in mothers of children with hemophilia (CWH).
Anonymous electronic surveys were distributed to 291 mothers of CWH from May to October 2021, which measured feelings of guilt along with potential contributing factors, subsequent coping strategies, and perception of their child's life satisfaction.
In all, 87 mothers completed the survey. The mean of respondents were 41.6 years and their CWH were a mean age of 13.3 years. While mothers indicated perceptions of their child’s life satisfaction that didn’t vary appreciably from the general population, 40% did indicate increased guilt. The most commonly cited reasons associated with this guilt were passing on the X chromosome associated with their condition and putting their child through painful infusions. The most common coping strategies were accessing social support, self-education, and connecting with other mothers of CWH in the inherited bleeding disorders community.
The authors emphasized the need for healthcare providers to “tactfully” provide anticipatory guidance and counseling for these mothers. They also suggested some positive takeaways.
“Community immersion was beneficial, as other mothers in the community served as a source of social and educational support. Most mothers did not report guilt, illustrating the adaptability and resilience of the haemophilia community,” concluded the authors.
The study, “The Emotional Experience of Mothers of Children with Haemophilia: Maternal Guilt, Effective Coping Strategies and Resilience within the Haemophilia Community,” was published online in the journal Haemophilia.
Source: Hematology Advisor, February 21, 2023