The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community

Abstract

Introduction: Mothers of children with haemophilia (CWH) experience guilt related to this genetic condition. Several factors contributing to maternal guilt have been identified, but the scope and extent of guilt have not previously been quantified. Aim: This study provides insight into the experience of mothers of CWH and how they perceive and manage guilt. It then identifies the most common and helpful coping mechanisms. Methods: Between May and October 2021, we distributed an anonymous electronic survey to mothers of CWH. The Parent Experience of Child Illness measured maternal guilt, the PROMIS Parent Proxy for Life Satisfaction measured perception of their child's life satisfaction and additional questions explored specific guilt factors and coping strategies.Results: Eighty-seven mothers responded to the survey. Forty percent of mothers experienced increased guilt. The most common reasons for guilt included putting their child through pain during infusions and passing on the affected X chromosome.Perceived life satisfaction, increased age and genetic counselling were associated with less guilt. The most common coping strategies involved utilizing social support, self-education and connecting with other mothers in the community. Conclusion:Some mothers experienced increased feelings of guilt, illustrating the need for providers to tactfully provide anticipatory guidance and counselling. Tangible manifestations of haemophilia were more likely to trigger feelings of guilt than familial factors. 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.

Exploring Female Relatives of Patients with Hemophilia’ Awareness, Attitudes, and Understanding Towards Genetic Testing

“… 40 , 41 In addition, when families with hemophilia are overly aware of the dangers of the disease but still fail to adjust their attitudes, excessive concerns about life, marriage, and childbearing of future generations lead to negative emotions such as self-accusation, fear, and depression. 42 , 43 Sheridan et al 44 found that the most common reasons for guilt among mothers of children with hemophilia included putting their child through pain during infusions and passing on the affected X chromosome. Our results found that female relatives of PWH were concerned about financial, physical, and psychological burdens related to the stress, tension, and anxiety that they experienced as caregivers and carriers, faced with challenges.…”

The good, the bad and the ugly of pain in haemophilia: Recent evidence on the epidemiology, molecular mechanisms and knowledge gaps preventing optimal treatment

“…51 Another aspect of haemophilia that can increase its psychological burden is the feeling of guilt experienced by mothers of children with haemophilia due to pain during infusions and passing on the affected X chromosome. 52…”

“…The severity of haemophilia is a significant predictor of direct medical and societal costs in Europe, and there is also a significant humanistic and economic burden for patients with moderate disease, suggesting greater indirect costs and productivity losses 51 . Another aspect of haemophilia that can increase its psychological burden is the feeling of guilt experienced by mothers of children with haemophilia due to pain during infusions and passing on the affected X chromosome 52 …”