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

Abstract

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 (PedsQL TM -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.

F‐words e ingredientes das intervenções precoces para crianças com paralisia cerebral não deambuladoras: uma revisão de escopo

“…Sessões educativas simples podem melhorar o estresse do cuidador, 44 saúde mental, 45 qualidade de vida 46 e seu conhecimento sobre PC 47 . Esses programas devem ser adequadamente adaptados para que a sobrecarga familiar não aumente 48 . Estudos mais recentes que não atenderam aos nossos critérios para inclusão sugerem que a educação pode ser mais eficaz quando oferecida por uma equipe de profissionais e pais com filhos semelhantes aos das famílias participantes desses programas, o que é algo a ser melhor explorado 49 …”

F‐words e ingredientes de las intervenciones tempranas dirigidas a niños no ambulantes con parálisis cerebral: Una revisión exploratoria

“…47 Estos programas deben adaptarse adecuadamente para que la carga familiar no se vea incrementada. 48 Otros estudios más recientes que no cumplieron nuestros criterios de inclusión sugieren que la educación puede ser más efectiva cuando la imparte un equipo de profesionales y padres con niños similares a los de las familias que participan en estos programas, algo que debe estudiarse más a fondo. 49 Varios estudios abordaron esta F-word (familia) mediante diseños de estudio cualitativos o de métodos mixtos 39,41,[50][51][52][53][54][55] ya que estos pueden ser los más adecuados para capturar factores personales que son difíciles de medir con herramientas estandarizadas.…”

F‐Wörter und Interventionsinhalte in der Frühförderung nicht gehfähiger Kinder mit Cerebralparese: eine umfangreiche Literaturübersicht

“…Einfache Aufklärungssitzungen können den Stress von Pflegenden 44 , ihre psychische Gesundheit 45 , Lebensqualität 46 und ihr Wissen über CP verbessern 47 . Diese Programme sollten so gestaltet sein, dass die Belastung für die Familie nicht noch größer wird 48 . Gemäß neuerer Studien, die unsere Einschlusskriterien nicht erfüllten, sind solche Maßnahmen offenbar am wirksamsten, wenn sie von einem Team aus Fachleuten sowie Eltern mit Kindern durchgeführt werden, die denen der teilnehmenden Familien ähneln.…”

“…47 Diese Programme sollten so gestaltet sein, dass die Belastung für die Familie nicht noch größer wird. 48 Gemäß neuerer Studien, die unsere Einschlusskriterien nicht erfüllten, sind solche Maßnahmen offenbar am wirksamsten, wenn sie von einem Team aus Fachleuten sowie Eltern mit Kindern durchgeführt werden, die denen der teilnehmenden Familien ähneln. Dies sollte weiter untersucht werden.…”