“A child with sickle cell disease can't live with just anyone.” A mixed methods study of socio‐behavioral influences and severity of sickle cell disease in northern Nigeria

Abstract

Background The modulatory effects of psychosocial and biophysical environments on sickle cell disease (SCD) severity during childhood has not been well characterized in high burden settings, such as Nigeria. Objectives We identified socio‐demographic correlates and explored caregivers' perceptions on socio‐behavioral and environmental influences on hospitalization for pain and blood transfusion of children with SCD in Kano, Nigeria. Methods Using mixed methods, structured questionnaires were administered to a clinic‐based sample of caregivers of children with SCD (n = 372), complemented with eight focus group discussions. Binary logistic regression models and the framework approach were used to analyze the data. Results The majority (73.1%, n = 272) of the children had at least one vaso‐occlusive crisis (VOC), and 41.1% (n = 153) required hospitalization in the preceding year. A total of 170 children (45.7%) received blood transfusion. Hospitalization was predicted by the child's age (Adjusted Odds Ratio, AOR = 1.89; 95% Confidence Interval, CI: 1.18‐4.07, ≥10 vs <5 years), relationship with caregiver (AOR = 5.41; 95%CI: 1.17‐25.05, mother vs “others”), father's number of children (AOR = 2.21; 95%CI: 1.19‐5.31, ≥10 vs ≤4), and siblings with SCD (AOR = 2.36; 95%CI: 1.16‐8.80, 2 vs 0). Caregivers perceived maternal care, stable home environment, medication adherence, anti‐mosquito measures, and adequate nutrition as protective factors, whereas poverty, extreme emotions, physical exertion, and extreme temperatures were identified as detrimental to the health of the child. Conclusions Hospitalizations for VOC and transfusion rates among children with SCD were high. Understanding the modulatory effects of socio‐behavioral factors on SCD severity could inform preventive measures and enhance the quality of life of affected children.

Social adjustment in children diagnosed with sickle cell disease: A retrospective study

“…53,54 Other studies have identified socio-behavioral, psychological, and environmental factors that may impact disease severity, indicating a more complex and bidirectional relationship. 55 The lack of a gold standard measure of disease severity in SCD likely accounts for discrepancies between studies investigating this variable. Sixty-five percent of children included in our study had immigrated to Canada (on average living in Canada for 4 years), and these results suggest that perhaps with more time living in Canada, social difficulties may subside.…”

“…Although limited, past work has shown that a more severe disease status is related to poorer overall HRQL 53,54 . Other studies have identified socio‐behavioral, psychological, and environmental factors that may impact disease severity, indicating a more complex and bidirectional relationship 55 . The lack of a gold standard measure of disease severity in SCD likely accounts for discrepancies between studies investigating this variable.…”

Men's Essential roles in the Management of Sickle Cell Anemia

“…The Impact of Men's Involvement in the Management of Sickle Cell Anemia Sickle cell anemia, a genetically inherited blood disorder, has historically been perceived as a predominantly female concern, largely associated with maternal roles, childcare, and family caregiving [33]. However, as our understanding of the disease has evolved, so too has the recognition of the pivotal role that men can play in its comprehensive management.…”

Impact of Sickle Cell Disease on Affected Individuals in Nigeria: A Critical Review

“…42,45 Findings from this study revealed some psychosocial impacts of sickle cell disease. 70 Societal attitudes and perceptions were identified as triggers for major psychosocial issues among sickle cell disease patients. Impaired psychosocial health-related quality of life had been associated with a number of negative effects, including low self-esteem; anxiety and depression; a loss of interest in basic life activities.…”