The lived experience of mothers of children with haemophilia in Jordan: A phenomenological study.

BACKGROUND: Haemophilia is an inherited bleeding disorder. Mothers of children with haemophilia experience stress, anxiety and different types of burdens that affect their life negatively. OBJECTIVES: This study aimed to explore the lived experience of mothers of children with haemophilia. METHODS: A descriptive phenomenological design was utilized. The participants were selected purposively from the Jordanian Association for Thalassemia and Hemophilia. Data saturation was achieved by interviewing 20 mothers. RESULTS: Five themes emerged: (1) the challenges related to the diagnosis, the availability and administration of the clotting factors, and the occurrence of the bleeding emergency; (2) physical, social, psychological and financial burden; (3) fear of child death and disability; (4) stigmatization; and (5) lack of educational and medical support. CONCLUSION: Mothers of children with haemophilia suffer from physical, psychological and social consequences. Healthcare providers should carry out educational sessions regarding the importance of support for the family and throughout the life of the child.

Preparing the Family and Children for Surgery.

The focus of this literature analysis is the concept of preparing the family and children for surgery. As posited in the literature, surgery causes stress and anxiety that have a negative impact on both parents and their children. Therefore, the need for health care professionals to facilitate positive preparation for surgery to minimize anxiety and enhance postoperative recovery is important. Preparing the family and children for surgery is discussed in depth under the following themes: Preoperative Anxiety in Children, the Impact of Preoperative Anxiety on the Pediatric Patients and Parents, Preoperative Psychological Preparation for Children and Parents, and the Role of Nurse Practitioners in Preoperative Preparation. Through reviewing the literature, it would appear that some areas of preparation for parents are not as sufficient as they could be, particularly with regard to adequate preoperative education programs. The majority of studies reported that therapeutic play and clown interventions used for psychological preparation of parents and their children have been effective in minimizing and decreasing anxiety levels.