Mothers’ perception of cerebral palsy in a low-income country of West Africa: a cross-sectional study

Abstract

Purpose

Investigating mothers’ perceptions of Cerebral Palsy (CP) and the impact of caregiving on family life in Benin, a west-African low to middle-income country (LMIC).

Methods

In this cross-sectional study we interviewed at their homes 88 mothers of children with CP about their perception of the cause of CP and stigmatization issues. Additionally, they completed the Impact on Family Scale and the Family Support Scale questionnaires. Multinomial and ordinal regressions analyses were used (p < 0.05).

Results

Most mothers (78%) referred to non-biomedical causes of CP (God’s will or curse). Caregivers with a limited education level were more likely to report non-biomedical beliefs. Only 28% reported having received from physicians an explanation of the causes of CP. Around 38% endorsed neighbors considered their children as cursed, which is a source of stigmatization. Mothers perceived a high impact of caregiving on their family life that correlated with non-biomedical beliefs, low education level, and the severity of CP.

Conclusion

There is a need in Benin, and probably in West-African LMICs generally, to shift to a family-centered care system and to inform the public about the root causes of CP to improve social integration of children with CP and decrease the negative impact on their families.

Implication for rehabilitation

• Mothers with a limited education level are more likely to report non-biomedical causes of CP in this LMIC;

• mothers’ level of education and non-biomedical beliefs of causes of CP are associated to a high impact of caregiving on family life in this LMIC;

• mothers of children with CP in this LMIC do not perceive health-workers helpful.

Keywords:

• Cerebral palsy
• caregivers
• quality of life
• social behavior
• developing country

Acknowledgements

The authors would like to express their gratitude to the children and mothers who participated in the study. We would like to thank Wilfried N. Bonou for his help in statistical analysis and Bruno Grollemund for providing the IOFS-French questionnaire. We acknowledge manuscript editing by Inglewood Biomedical Editing and thank the reviewers for the constructive comments that improve the quality of our paper. ESS received a grant from the Université Catholique de Louvain, Belgium.

Ethical approval

The ethic committee of the rehabilitation department of the National University Hospital (Cotonou, Republic of Benin) approved the study. Caregivers of all participants provided their informed consent.

Author contributions

ESS and YB performed the data analysis and drafted the paper. ESS, DH (both experienced pediatric physiotherapists) contributed to data collection. All authors contributed to the study design, reviewed and accepted the final manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).