| dc.description.abstract | The plight of Millennials Living with Sickle Cell Disease (MLSCD) has largely been unknown
in Africa. There is limited prioritization of interventions to mitigate both the spread of this noncommunicable disease as well as enhancing the resilience of SCD patients in general. This
study explored the lived experiences of millennials with SCD and how they cope with the
disease. In this study, lived experiences were categorized as physiological, psychological,
social and economic or livelihood related experiences.
The study adopted a cross sectional research design and employed a qualitative approach. The
primary participants in this study were 15 millennials living with sickle cell disease. The key
informants were 2 health workers at the Mulago Hospital sickle cell clinic, 1 official from
Sickle Cell care foundation and 2 officials from the Ministry of Health.
Findings from the study indicate that the physiological challenges experienced by the primary
participants since their infancy, childhood and adolescence continue to affect their physical
health, psychological wellbeing, social status and chances of making a living. The study
underscored gaps in availability of clinical as well as psychosocial care. Furthermore, the
findings show limited interventions aimed at addressing the economic hardships among the
millennials given the marginalization they face on the job market as a result of their
compromised health situation.
The coping strategies adopted by the participants were to enable them manage pain, financial
difficulties, as well as stigma and discrimination resulting from Sickle Cell Disease. The use
of medically prescribed painkillers was cited as the main coping strategy during crises. Other
approaches embraced included; use of herbal medicine and dependence on divine intervention
from God that helped them overcome stigma and other hardships encountered. In addition, the
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millennials cited joining organizations that work with people living with sickle cell disease as
a source of support.
The study recommends more widespread access to care for these patients across the country,
capacity building for the care providers of both clinical and psychosocial care, and involvement
of the patients themselves as key stakeholders in decision making processes, particularly on
how to mitigate their plight. There is need for more investment by the Government of Uganda
in research that cuts across millennials countrywide, in order to inform a nationwide response
tailored towards enhancing their resilience and enable them to realize their dreams amidst the
challenges of enduring this chronic illness. | en_US |
