Background:
The impact of family history on mothers of sons with hemophilia is unknown. The primary purpose of this study was to determine whether differences exist in perceived vulnerability of sons, protective behaviors toward sons and reported stress when comparing mothers of sons with hemophilia who have a known family history of hemophilia with mothers who have an unknown family history of hemophilia.
Methods:
We performed a prospective, single visit study of mothers who have a son with hemophilia. Following informed consent, participants answered demographic and family history questions and completed three surveys: the Parent Protection Scale, the Child Vulnerability Scale and the Parenting Stress Index.
Results:
A total of 39 participants completed the study, including 21 mothers with a known family history of hemophilia and 18 mothers with an unknown family history of hemophilia. No significant differences were found in perceived vulnerability, protective behavior and reported stress in mothers with a known family history of hemophilia compared to those without a known family history of hemophilia. However, the total Parent Protection Scale scores were significantly higher among mothers of sons with hemophilia with a history of inhibitor, compared to those without a history of inhibitor. Mothers of sons with hemophilia without siblings scored significantly higher on the Parent Protection Scale, Supervision and Control sub-scores, as well as the Parent Stress Index, Difficult Child sub-score. Child Vulnerability Scale scores increased along with the Parent Protection Scale, Dependence sub-scores and Separation sub-scores. Child Vulnerability Scale scores increased along with the total Parent Stress Index scores, as well as with increasing Parent Stress Index, Difficult Child sub-scores and Parent-child dysfunctional Interaction sub-scores.
Discussion:
Historically, social workers in hemophilia programs have observed psychosocial differences between mothers of sons with hemophilia who have a known versus unknown family history. We did not find differences in the measures we utilized between groups. Instead, the results of this study demonstrated the complex system of behaviors exhibited by all mothers of sons with hemophilia, enriching the understanding of the impact of family history of hemophilia when providing comprehensive care services to mothers of sons with hemophilia and families.
Implications/Next Steps:
The results of this study will lead to the improvement of hemophilia center clinical social work assessment of family functioning, specifically the mother-son relationship. Further research needs to be initiated to explore the complex psychosocial differences in individual mothers of sons with hemophilia, individual sons with hemophilia, family systems and social systems impacted by hemophilia.