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

• Published in: Journal of genetic counseling 2014-04, Vol.23 (2), p.192-201
• Main Authors: Wonkam, Ambroise, Mba, Caryl Zameyo, Mbanya, Dora, Ngogang, Jeanne, Ramesar, Raj, Angwafo, Fru F.
• Format: Article
• Language: English
• Subjects: Adult; Africa; Anemia, Sickle Cell - psychology; Biomedical and Life Sciences; Biomedicine; Burden; Cameroon; Caregivers; Child; Children; Clinical Psychology; Coping; Cross-Sectional Studies; Ethics; Families & family life; Gynecology; Human Genetics; Humans; Middle Aged; Original Research; Parents; Parents & parenting; Parents - psychology; Psychosocial burden; Public Health; Quality of life; Severity; Sickle cell disease; Stress; Surveys and Questionnaires; Young Adult
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1007/s10897-013-9630-2

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.