The effect of the Hambisela programme on stress levels and quality of life of primary caregivers of children with cerebral palsy: A pilot study

Background: Caregivers of children with cerebral palsy (CP) are at risk of having high stress levels and poor quality of life (QOL) which could have a detrimental effect on themselves and their children. Taking caregivers' well-being into consideration is therefore important when providing rehabilitation to children with CP. Interventions to mediate primary caregiver stress and QOL using an educational tool have not been tested in this population in South Africa. Objectives: The aim of this study was to determine the effect of a group-based educational intervention, Hambisela, on stress levels and QOL of primary caregivers of children with CP in Mamelodi, a township in Gauteng, South Africa.

Method: Eighteen primary caregivers of children with CP participated in a quasi-experimental pretest–post-test pilot study. Hambisela, a group-based educational intervention, was carried out once a week over 8 consecutive weeks. Caregiver stress and QOL were assessed before and after the intervention using the Parenting Stress Index-Short Form (PSI-SF) and the Paediatric Quality of Life-Family Impact Module (PedsQLTM-FIM). Sociodemographic information was assessed using a demographic questionnaire. The Gross Motor Function Classification System (GMFCS) was used to assess the gross motor level of severity of CP in the children.

Results: Data were collected for 18 participants at baseline and 16 participants at follow-up. At baseline, 14 (87.5%) participants had clinically significant stress which reduced to 11 (68.8%) at follow-up. There was no significant change in primary caregiver's stress levels (p = 0.72) and QOL (p = 0.85) after the Hambisela programme. Higher levels of education were moderately associated with lower levels of primary caregiver stress (r = −0.50; p = 0.03).

Conclusion: Most primary caregivers in this pilot study suffered from clinically significant stress levels. Hambisela, as an educational intervention, was not effective in reducing the stress or improving the QOL in these primary caregivers of children with CP. Future studies with a larger sample size are needed to investigate the high stress levels of primary caregivers of children with CP. Clinical implications: Rehabilitation services for children with disabilities should include assessments to identify caregivers with high stress levels. Holistic management programmes should also include care for the carers.