TITLE:
The Lived Experience of Parents of Children with Sickle Cell Disease: A Qualitative Study
AUTHORS:
Raeda M. Abu Ali, Nadin M. Abdel Razeq
KEYWORDS:
Sickle Cell Disease, Chronic Illnesses, Parents, Caregivers, Children, Jordan
JOURNAL NAME:
Open Journal of Nursing,
Vol.7 No.11,
November
30,
2017
ABSTRACT:
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.