‘I don't want to hurt him.’ Parents’ experiences of learning to administer clotting factor to their child

Abstract

To explore the experiences and educational needs of parents learning to use an Implanted Central Venous Access Device (IVAD) to administer clotting factor to their child with haemophilia. Parents of children with haemophilia who had learnt to administer clotting factor via IVAD attended focus groups to discuss their experiences of the learning process. Data were transcribed and analyzed thematically. Parents described distress and trauma in dealing with the diagnosis and treatment of their child's haemophilia. It was within this context that parents began the IVAD education process. Four major themes emerged from the data: dealing with fear and anxiety; a supportive learning environment; establishing a ritual and empowerment and liberation. Parents identified a supportive learning environment as their critical need rather than a specific learning process. In addition, the concept of ritual emerged both as a mechanism for increasing the child's comfort with the procedure and as a valuable learning tool for their parents. This study highlights the importance of consulting consumers to understand their experience of illness and their educational needs. Patient and family education programs should not be limited to the provision of information, but must establish and incorporate the needs of the learner.

Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

“…Although studies on psychological issues in boys with haemophilia are scarce, some suggest that boys may have difficulties in behavioural functioning . For parents, dealing with the diagnosis of haemophilia is stressful, while also learning to take on intravenous treatment . For young boys with severe haemophilia, having to undergo burdensome and painful treatment may lead to difficulties in behaviour and struggles between parents and children.…”

Principles and theory guiding development and delivery of patient education in disorders of thrombosis and hemostasis: Reviewing the current literature

“…Most articles focussed on the development of practical skills (self‐infusion, infusion of child), with one discussing improvement in patient knowledge in relation to its effect on treatment adherence. This variability is likely due to the forced separation of two related care priorities–in order to successfully administer recommended treatment, key learning goals (initiation of an intravenous catheter) must be met. Conversely, when examining adherence rates, patient and caregiver knowledge must be considered …”

“…Particularly evident in literature describing pediatrics, developmental theories such as Piaget's provide the basis for general educational interventions and teaching strategy and their use–in conjunction with teaching strategy–is well described. In comparison, current health care literature focusses on the use of teaching strategy and description of content without specifically identifying associated theory …”

Parents of children with haemophilia at an early age: assessment of perceived stress and family functioning

“…This latter characteristic can cause feelings of guilt, especially in mothers . In addition, many of its clinical signs and symptoms are spontaneous and cause pain and suffering, thus resulting in some disruption to the family environment and the child's routines, impacting on the whole family's quality of life . The fact that infectious diseases such as HIV and HCV were transmitted to PWH in the 1970s and 1980s generates anxiety and fear in relatives who fear that similar situations may arise .…”

“…Other studies have evaluated the perception of disease and the stress suffered by adult PWH, but few articles have given much weight to how haemophilia affects parents' family functioning after the birth of a child with this disease .…”