Background: Sickle cell disease is an inherited hematological disorder that inflects complex demands on the lives of the children and their families. Aim: To describe the lived experience and everyday strains of paren...Background: Sickle cell disease is an inherited hematological disorder that inflects complex demands on the lives of the children and their families. Aim: To describe the lived experience and everyday strains of parents of sickle cell disease children. Methods: A descriptive qualitative approach was used. Data were collected using face-to-face interviews with 11 parents of children with sickle cell disease in Jordan. Results: Emerged themes were: 1) the catastrophe, which summarized the effect of the confirmed diagnosis of sickle cell disease in the children on the parents, 2) parenting hardships, which highlighted aspects of parents’ reported challenges and needs while caring for their sickle cell disease children, and 3) networking and support, which described patterns of support that parents sought to fulfil needs for support and information. Conclusions: Healthcare providers should carefully assess the complex caregiving demands and altered family dynamics that the parents of children with sickle cell disease face. Parents’ psychosocial health issues should be essential elements in planned care of children with sickle cell disease. Nursing and social work professionals can play a vital role in developing and implementing a comprehensive model of care with community-based approach and strategies to maximize the wellbeing of sickle cell disease children and their parents.展开更多
文摘Background: Sickle cell disease is an inherited hematological disorder that inflects complex demands on the lives of the children and their families. Aim: To describe the lived experience and everyday strains of parents of sickle cell disease children. Methods: A descriptive qualitative approach was used. Data were collected using face-to-face interviews with 11 parents of children with sickle cell disease in Jordan. Results: Emerged themes were: 1) the catastrophe, which summarized the effect of the confirmed diagnosis of sickle cell disease in the children on the parents, 2) parenting hardships, which highlighted aspects of parents’ reported challenges and needs while caring for their sickle cell disease children, and 3) networking and support, which described patterns of support that parents sought to fulfil needs for support and information. Conclusions: Healthcare providers should carefully assess the complex caregiving demands and altered family dynamics that the parents of children with sickle cell disease face. Parents’ psychosocial health issues should be essential elements in planned care of children with sickle cell disease. Nursing and social work professionals can play a vital role in developing and implementing a comprehensive model of care with community-based approach and strategies to maximize the wellbeing of sickle cell disease children and their parents.
