The Lived Experience of Parents of Children with Sickle Cell Disease: A Qualitative Study

摘要

style="text-align:justify;"> style="font-family:;" "="">Background: style="font-family:;" "=""> Sickle cell disease is an inherited hematological disorder that inflect style="font-family:;" "="">s style="font-family:;" "=""> 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 style="font-family:;" "=""> style="font-family:;" "="">was used. Data were collected style="font-family:;" "=""> style="font-family:;" "="">using face-to-face interviews with style="font-family:;" "=""> style="font-family:;" "="">11 parents of children with sickle cell disease in Jordan. Results: style="font-family:;" "=""> style="font-family:;" "="">Emerged themes were: style="font-family:;" "="">1 style="font-family:;" "="">) the catastrophe, which summarized the effect of the style="font-family:;" "=""> style="font-family:;" "="">confirmed diagnosis of sickle cell disease in the style="font-family:;" "="">children on the parents style="font-family:;" "="">, style="font-family:;" "=""> style="font-family:;" "="">2 style="font-family:;" "="">) parenting hardships, which highlighted aspects of parents’ reported challenges and needs while caring for their sickle cell disease children, and style="font-family:;" "="">3 style="font-family:;" "="">) networking and support, which described patterns of support> that parents sought to fulfil needs for support and information. Conclusions: style="font-family:;" "=""> style="font-family:;" "="">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 style="font-family:;" "=""> style="font-family:;" "="">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. style="font-family:;" "="">