Psychosocial Economic Vulnerability of Family Caregivers of Persons Living With Sickle Cell Disease in Nairobi City County, Kenya
Tabitha, Kwena Foulata
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Nearly 90% of the burden of the sickle cell disease (SCD) has been in Sub Saharan Africa (SSA) and a greater proportion of the burden of the disease usually fall on the involuntary family caregivers. Some form of impairment and related caregiving vary in duration, intensity, dependency and impoverishment with the type of the chronic health condition. Persons Living with Sickle Cell Disease (PLWSCDs) have typically been accompanied by prolonged, intensive, dependency and impoverished caregivers. Accordingly, this study was intended to identify the psychosocial economic vulnerability of Involuntary Family Caregivers (IFCGs) of PLWSCDs in an urban center of LMIC, the effects on the psychosocial economic wellbeing and the necessary interventions. The objectives of the study were 1) to identify the nature of the SCD in the urban centers of the LMIC, 2) to assess the characteristics of the IFCGs 3) to assess related psychosocial economic vulnerability 4) to assess coping strategies and 5) to identify necessary intervention measures. The study was based on three key theories namely the psychosocial-economic vulnerability, the psychosocial-economic resilience and the gender empowerment to address the capacity of the IFCGs to build their psychosocial-economic resilience. The study was principally a survey with in-depth interviews. The target population was IFCGs living in Nairobi in 2016. From a population of 510, a sample of 226 IFCGs was determined through Yamane (1967). Data was collected through interview guides. Results indicated that average age of IFCGs was 43 years, 81% were married, 60% had secondary or higher education. and 56% were knowledgeable about SCD. In addition, 58% of IFCGs lived in informal settlements, 60% of IFCGs earned less than KES 35,520 ($320) which was the average income for urban low income households in Kenya per month. The IFCGs spent an average of KES 31,746 ($286) which was higher compared to the household average of KES 16,983 ($153). Overall, 60% of IFCGs had provided caregiving for a period of 6 to 20 years. The effects of the caregiving ranged from ill physical and mental health 26%, social deprivation and exclusion 24% and socio-economic deprivation 50%. The study recommends developing and implementing a SCD policy including the management of family caregivers, enhancing medical insurance policy for the PLWSCDs and incorporating family caregivers in social protection schemes in order to mitigate some of the psychosocial economic challenges.