Abstract
BackgroundWorldwide, sickle cell disease is recognized as one of the major causes of morbidity and mortality. Caregivers and patients with such chronic illnesses experience economic, physical, social and psychological distresses which may lead to chronic sorrow. Chronic sorrow is viewed as a normal reaction to loss, however it can progress to a pathological state such as depression if the coping styles are ineffective. Therefore, the aim of this study was to explore the existence of chronic sorrow, triggers and coping with grief related feelings among caretakers of children with sickle cell disease.MethodsA descriptive qualitative study was conducted. Twelve in-depth interviews were conducted with eligible participants who were purposively selected. Deductive thematic analysis methods were used for data analysis.ResultsMany (9 out of 12) of the caretakers experienced chronic sorrow. The grief related feelings were triggered by health worker related, disease related and support related factors. Caretakers used both external and internal coping strategies. External support was derived from community, family and health facility. Internal coping strategies were behavioral and cognitive.ConclusionCaretakers of children with sickle cell disease experienced chronic sorrow and employed both internal and external coping strategies to deal with it, which could be either effective or ineffective. This study recommends that health workers should routinely screen for chronic sorrow among caretakers of children with sickle cell disease and assist caretakers to strengthen effective coping strategies to ameliorate the negative effects of chronic sorrow.
Highlights
IntroductionSickle cell disease is recognized as one of the major causes of morbidity and mortality
Worldwide, sickle cell disease is recognized as one of the major causes of morbidity and mortality
(2018) 6:50 caretaker’s expectations of a healthy child and the reality of having a child with Sickle Cell Disease (SCD). Disparity in this case is defined as the difference between the children who have SCD and those without. It is viewed as a normal reaction, chronic sorrow can progress to a pathological state such as depression if coping styles are ineffective [9]
Summary
Sickle cell disease is recognized as one of the major causes of morbidity and mortality. Children with SCD usually experience vaso -occlusion which results in pain, anemia, stroke, leg ulceration, organ damage and early mortality [3]. These patients experience recurrent painful crises, acute chest syndrome, priapism and other complications such as neurocognitive impairment and Chronic sorrow is defined as the periodic recurrence of permanent, pervasive sadness or grief related feelings associated with significant loss [8]. Disparity in this case is defined as the difference between the children who have SCD and those without It is viewed as a normal reaction, chronic sorrow can progress to a pathological state such as depression if coping styles are ineffective [9]. Recognizing chronic sorrow among caretakers of patients with SCD and maladaptive coping strategies is useful in ensuring that effective strategies are designed to deal with negative effects in a timely manner [8, 9]
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