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A Study to Assess Problems Encountered by Immediate Family Members in Caring for Children Affected With Sickle Cell Disease at University Teaching Hospital, Lusaka, Zambia
Abstract
Objective: The objective of the study was to assess the problems experienced by immediate families in caring for children affected with Sickle Cell Disease (SCD) seen at University Teaching Hospital (UTH) Lusaka, Zambia.
Design: The study was a cross sectional descriptive study conducted at the SCD outpatient clinic paediatrics department, UTH Lusaka. The study
population was parents and guardians of children affected with SCD seen at the clinic. The respondents were selected using convenient non probability sampling method. A total number of 145 parents and guardians of children with SCD seen at UTH were enrolled into the study.
Data was collected using a semi structured interview schedule consisting of both closed and open ended questions to enable the investigator collect both quantitative and qualitative data. SPSS version 16 was used to analyze data. Chi square test was used to measure association between variables. The cut off point for statistical significance was 0.05. Results: This study revealed that majority of respondents (83%) had low levels of knowledge on the disease. This influenced their understanding of the disease and negatively affected the way they cared for the affected child and increased the burden of care. This was attributed to the fact that majority of respondents (70%) had only attained low primary education. There was a significant association between educational levels of respondents and knowledge of the disease (p value 0.01). The other reason for low levels of knowledge was that majority of respondents had not received any educational materials on SCD. The study revealed that most of the families (76%) had low monthly income and the cost of caring for the child caused a huge financial strain to the families. This was a major source of anxieties to the families. There was a significant association between monthly income and experiencing financial problems by the families to take care of family needs (p value 0.01).
This study revealed that majority of respondents (77%) experienced depression, guilt feelings, anxiety and blue moods due to living with a child affected with SCD. There was a significant association between the number of times the child had been hospitalized and depression in the parent (p value 0.001).The study also revealed an association between feelings of guilt and levels of knowledge on SCD by the respondents (p value 0.002).
The study findings revealed that Majority of the respondents (98%) indicated that living with a child affected with SCD affected the interrelationship within the home environment as well as with other people outside the home mainly attributed to St igma, f r equent i l lne s s epi sodes and hospitalizations of the affected child. Conclusion: From this study, the families of children affected with SCD face a wide range of problems in caring fro the children ranging from lack of adequate knowledge on how to manage the disease at home due to lack of knowledge on the disease. Psychological problems experienced
include depression, guilty feelings, blue moods, which adversely influence the way they care for the children.
The families also experience financial burdens in taking care and meeting the needs of the children. A common manifestation of SCD in children is
unpredictable episodic pain crisis which leads to frequent hospitalizations and families have to spend money in such circumstances.
Families also face challenges in interpersonal relationships both within the home environment as well as with other people outside the home.
As revealed from this study, it is evident that these problems are interrelated. It has also been revealed that management of SCD patient does not just involve treating the crisis and other medical complications, but also alleviating the problems experienced by families of affected children so as to enable them have an improved quality of life.
Design: The study was a cross sectional descriptive study conducted at the SCD outpatient clinic paediatrics department, UTH Lusaka. The study
population was parents and guardians of children affected with SCD seen at the clinic. The respondents were selected using convenient non probability sampling method. A total number of 145 parents and guardians of children with SCD seen at UTH were enrolled into the study.
Data was collected using a semi structured interview schedule consisting of both closed and open ended questions to enable the investigator collect both quantitative and qualitative data. SPSS version 16 was used to analyze data. Chi square test was used to measure association between variables. The cut off point for statistical significance was 0.05. Results: This study revealed that majority of respondents (83%) had low levels of knowledge on the disease. This influenced their understanding of the disease and negatively affected the way they cared for the affected child and increased the burden of care. This was attributed to the fact that majority of respondents (70%) had only attained low primary education. There was a significant association between educational levels of respondents and knowledge of the disease (p value 0.01). The other reason for low levels of knowledge was that majority of respondents had not received any educational materials on SCD. The study revealed that most of the families (76%) had low monthly income and the cost of caring for the child caused a huge financial strain to the families. This was a major source of anxieties to the families. There was a significant association between monthly income and experiencing financial problems by the families to take care of family needs (p value 0.01).
This study revealed that majority of respondents (77%) experienced depression, guilt feelings, anxiety and blue moods due to living with a child affected with SCD. There was a significant association between the number of times the child had been hospitalized and depression in the parent (p value 0.001).The study also revealed an association between feelings of guilt and levels of knowledge on SCD by the respondents (p value 0.002).
The study findings revealed that Majority of the respondents (98%) indicated that living with a child affected with SCD affected the interrelationship within the home environment as well as with other people outside the home mainly attributed to St igma, f r equent i l lne s s epi sodes and hospitalizations of the affected child. Conclusion: From this study, the families of children affected with SCD face a wide range of problems in caring fro the children ranging from lack of adequate knowledge on how to manage the disease at home due to lack of knowledge on the disease. Psychological problems experienced
include depression, guilty feelings, blue moods, which adversely influence the way they care for the children.
The families also experience financial burdens in taking care and meeting the needs of the children. A common manifestation of SCD in children is
unpredictable episodic pain crisis which leads to frequent hospitalizations and families have to spend money in such circumstances.
Families also face challenges in interpersonal relationships both within the home environment as well as with other people outside the home.
As revealed from this study, it is evident that these problems are interrelated. It has also been revealed that management of SCD patient does not just involve treating the crisis and other medical complications, but also alleviating the problems experienced by families of affected children so as to enable them have an improved quality of life.
