Journal of Genetic Counseling

, Volume 23, Issue 2, pp 192–201 | Cite as

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

  • Ambroise Wonkam
  • Caryl Zameyo Mba
  • Dora Mbanya
  • Jeanne Ngogang
  • Raj Ramesar
  • Fru F. AngwafoIII
Original Research

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.

Keyword

Sickle cell disease Psychosocial burden Africa Cameroon 

Notes

Acknowledgments

For their input, we thank the patients’ association, “Globule Rouge,” and the parents who participated in the survey. This study was supported by the Commission for Humanitarian Affairs of the Geneva University Hospitals, Geneva, Switzerland.

AW and FA designed the project, acquired, analyzed and interpreted the data and wrote the paper; CZ contributed to participants’ recruitment, data acquisition and interpretation; RR contributed to data interpretation and the draft of the paper; DM and JN performed the haematological analyis and interpretation of the data. All the authors critically revised the manuscript and approved the submission. This stuty will be part of Dr Wonkam‘s PhD thesis.

Conflicts of Interest

No conflict of interest to declare.

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Copyright information

© National Society of Genetic Counselors, Inc. 2013

Authors and Affiliations

  • Ambroise Wonkam
    • 1
  • Caryl Zameyo Mba
    • 2
  • Dora Mbanya
    • 2
  • Jeanne Ngogang
    • 2
  • Raj Ramesar
    • 1
  • Fru F. AngwafoIII
    • 2
  1. 1.Division of Human Genetics, Faculty of Health SciencesUniversity of Cape Town (UCT)Cape TownSouth Africa
  2. 2.Faculty of Medicine and Biomedical SciencesUniversity of Yaoundé IYaoundéCameroon

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