Psychosocial Burden of Sickle Cell Disease on Parents with an Affected Child in Cameroon

Abstract

The chronicity of Sickle Cell Disease (SCD) could impair the quality of life of caregivers. We performed a quantitative study to assess various indices of psychosocial burden on Cameroonian parents (N = 130) with at least one living SCD-affected child. Demographic and medical information were obtained from the participants and the review of the patients' medical records. The survey instrument included a 38-item stress factors scale using Likert-type statements, evaluating general perceptions of stress and five main specific stressors: disease factors (clinical severity), hospital factors, financial factors, family factors (life/dynamic) and SCD-child factors (perceived quality of life). The items pertaining to burden involved four response options with increasing severity: 0, 1, 2 or 3. Descriptive statistics and non-parametric tests were used for analysis. Participants were typically aged 38 years, urban dwellers (89%), female (80%), married (60.2%), employed (61.7%) and had secondary/tertiary education (82%). Median age of SCD-affected children was 9 years. The median age at diagnosis of SCD was 6 months; 47.8% had more than 3 painful crises per year. The majority of participants (88.3%) experienced moderate to severe difficulty coping with SCD. On a 0-3 scale, median score of SCD clinical severity was the major factor to undermine the coping ability of parents (2.2); vaso-occlusive painful events (>3 per year) was the disease-related stressor that most impacted their coping ability. The family life dynamic was the least stressful (0.7). Unemployment affected all the stressors' categories. Stressors scores also increased with female, single, low education level, age of SCD-affected children or more than 3 children in the family. In Cameroon, there is an urgent need to implement practices that ensure affordable access to health-care and activities that would reduce SCD morbidity.

A Call for Policy Action in Sub-Saharan Africa to Rethink Diagnostics for Pregnancy Affected by Sickle Cell Disease: Differential Views of Medical Doctors, Parents and Adult Patients Predict Value Conflicts in Cameroon

“…The proportion of doctors who accepted TAP for SCD (40.9%) could be still considered high as well. But a more interesting thing is that the proportion is similar to support for voluntary abortion that we reported earlier (Wonkam and Hurst, 2007), and much lower than the support doctors gave to medical abortion in principle (90.1%; Fig. 2A).…”

Maternal risk behavior and caries incidence in children with sickle cell disease

“…Pain crisis was the event that most contributed to a greater burden of disease on Cameroonian parents. 26 In respect to this severe clin ical profile, Guimarães and collaborators, 14 in their study on the daily lives of families of children and adolescents with sickle cell disease, reported that mothers tend to be overprotective and burdened when they need to spend time caring for their children and have to give up social functions. An impact on the family environment was also reported in this study, namely the inability to accept the disease and the fear of death, to the extent that the family experienced periods of greater or lesser control of the disease and could not handle the situation, feeling lost and hopeless.…”

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…Complications such as hospitalisation associated with pain crises may impair the academic achievement of carers which then exacerbates the financial burden of SCD (Wonkam et al, 2014). Thomas et al (1992) also argued that support and family functioning lead to better adjustment and reduced psychological complications of SCD for adults.…”

“…Consideration of the interrelationship of all factors is thus integral to the management of this disorder. Parents of children affected with SCD confront psychosocial burdens that negatively influence the quality of life of the whole family, and thus pose difficulties in coping with the disease (Wonkam et al, 2014). The family provides additional attention and continuous monitoring when caring for children with SCD which, in turn, may influence the care provided to siblings (Graff et al, 2012).…”

“…Similarly and as Bury (1988) The effect of chronic illness therefore appears in the sick individual and extends to involve the broader family and community structures (Rowat & Knafl, 1985;Taylor & Bury, 2007). Child health status, hospitalisation, and financial concerns are stressors that have been found to affect the parents of children with SCD because they limit the employment opportunities of carers, thus undermining their socioeconomic status (Wonkam et al, 2014). According to Atkin and Ahmad (2000a), family dynamics and social and financial supports are essential elements in order to develop effective management and create a positive identity for individuals with sickle cell disease.…”