Lived Experiences of Adults with Sickle Cell Disease: A Qualitative Study, Dar es Salaam, Tanzania

Abstract

Background: Sickle Cell Disease (SCD) is most common genetic disorder and its prevalence in sub-Saharan Africa is increasing. Despite increased survival rates, experiences of adults living with SCD in Tanzania is not well explored. This article provides perceived causes of pain crisis, pain self- management approaches and psychosocial implication of SCD. Aim: This study aimed at exploring experiences of adults living with SCD regarding pain triggering or aggravating factors; self-management for pain; psychosocial-economical implication of SCD and coping mechanism used by individuals living with SCD Methods: A qualitative study design was chosen using in-depth interviews with adults living with SCD to explore their experience of living with SCD. Fifteen adults aged 18 years and above living with SCD were interviewed. Data were analyzed by using content analysis approach. Findings: Four categories emerged that described experiences of individuals with SCD. The four categories are; “Pain Triggering and Aggravating Factors” describing participants’ perceived factors causing pain in SCD; “Self-care remedies for the pain” referring to participants’ methods for self-management of pain; “Psychosocial-economic impact of illness” referring to participants’ experience of implication of illness on social and economic life and “Dealing and coping with illness” referring to experience of participants on management and coping strategies used to live with the illness. Conclusion: Individuals with SCD experiences several episodes of pain that affect their quality of life. Pain episode can be triggered or aggravated by various factors. Several approaches are used by individuals with SCD to self-manage the pain including taking rest, drinking plenty of water or using pain relieving medication. Care for individuals with SCD should be comprehensive and include proper management of pain, health education on home-based intervention for sickle cell pain, supportive services to deal with psychosocial implications of SCD and improving coping strategies to live with the illness.

A Health Service Transition to Adult Patient Care for Sickle Cell Disease

“…Patients suffering from SCD have complex healthcare, psychosocial, and educational needs that demand a coordinated, multidisciplinary approach to their care. The multidisciplinary team is an essential component of the transition process because it brings together a series of healthcare professionals from different disciplines to work together to meet the varied needs of patients with SCD, and they cooperate to provide holistic and coordinated care for patients with complex medical conditions within a coordinated structure [5] . The holistic needs of patients are met through multidisciplinary coordination across systems among a group of stakeholders, including pediatricians, hematologists, other clinicians, and community practitioners [5] .…”

“…The multidisciplinary team is an essential component of the transition process because it brings together a series of healthcare professionals from different disciplines to work together to meet the varied needs of patients with SCD, and they cooperate to provide holistic and coordinated care for patients with complex medical conditions within a coordinated structure [5] . The holistic needs of patients are met through multidisciplinary coordination across systems among a group of stakeholders, including pediatricians, hematologists, other clinicians, and community practitioners [5] . Some of the complex needs typically associated with SCD include pain management, infection prevention, stroke prevention, and management of organ damage.…”

“…Nurses educate and support patients and families, including self-management strategies and symptom monitoring. The psychologist provides counseling and support to patients and families, addressing mental health challenges [5] .…”

“…Sickle cell disease (SCD) is a hereditary hematological disorder resulting from abnormal hemoglobin composition due to a point mutation in the β-globin gene [4] . SCD impacts 20-25 million people worldwide, and in Africa, 50-80% of babies born with SCD are dead before five years old [5] . The United Nations General Assembly has identified sickle cell disease as a global public health issue that reflects the high morbidity and mortality rates and its extensive economic and social impacts [6] .…”

“…Although bone marrow transplants and gene therapy are practical and successful for significant numbers of patients, it was proposed that care would involve a continuum of primary care that is holistic and personcentered [5] . The transition from pediatric to adult healthcare can be challenging for individuals with SCD due to the complex medical needs associated with this condition.…”