Researchers have found that some mothers of children with hemophilia (CWH) feel an increased sense of guilt regarding their child having this genetic condition, highlighting a possible need for support for mothers of CWH. The experiences of guilt and coping strategies in mothers of CWH were evaluated in a study with results reported in the journal Haemophilia.
“We determined 40% of mothers felt increased guilt overall, while up to 64% felt guilt for a specific reason,” the researchers explained in their report.
The researchers sent an anonymous electronic survey to mothers of CWH. Mothers eligible to participate in the study could be carriers, confirmed noncarriers, or nonbiological mothers. The researchers used the Parent Experience of Child Illness tool to assess maternal guilt, and they used the PROMIS Parent Proxy for Life Satisfaction tool to assess perceptions of the child’s life satisfaction, in addition to particular factors related to guilt and approaches to coping.
From a total of 291 possible recipients, 26% responded to the electronic surveys, resulting in 87 mothers of CWH who provided responses. Mothers in this analysis had a mean age of 41.6 years, and their affected children had a mean age of 13.3 years.
The researchers reported that mothers in this study population had perceptions of their child’s life satisfaction that were not very different from the average population. However, increased overall guilt was reported by 40% of mothers. Common specific reasons for guilt that were expressed by mothers involved a sense of causing their child to experience pain through infusions or a sense of having given their child an X chromosome associated with hemophilia.
However, there were also factors that appeared to be associated with feeling less guilt. A sense of guilt appeared to decrease with age. Additionally, less guilt was felt by those who believed that the child had a high quality of life or those who underwent genetic counseling.
Social support, self-education, and forming ties with other mothers in support groups were common ways that mothers coped. The researchers also indicated that coming to terms with a child’s hemophilia diagnosis was linked to improved emotional well-being among mothers. The researchers additionally pointed out that providers should not suggest that there is an expectation a mother would feel guilt.
“This is the first study that quantitatively examined the scope and extent of guilt in biological and non-biological mothers of CWH,” the researchers wrote in their report. They concluded that immersion in the community provided social and educational benefits for mothers. They also noted that a sense of guilt had not been reported by the majority of mothers in the study, which they indicated was a sign of the adaptability and resilience of members of the hemophilia community.
Sheridan N, Thompson B, Lichten L, Coleman K, Sidonio Jr R. The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community. Haemophilia. Published online January 31, 2023. doi:10.1111/hae.14746