van Aswegen Tamryn, Myezwa Hellen, Potterton Joanne, Stewart Aimee
Department of Physiotherapy, School of Therapeutic Sciences, Faculty of Health Sciences, University of the Witwatersrand, South Africa.
S Afr J Physiother. 2019 Feb 20;75(1):461. doi: 10.4102/sajp.v75i1.461. eCollection 2019.
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.
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.
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-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.
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 ( = 0.72) and QOL ( = 0.85) after the Hambisela programme. Higher levels of education were moderately associated with lower levels of primary caregiver stress ( = -0.50; = 0.03).
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.
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.
脑瘫（CP）患儿的照料者面临着压力水平高和生活质量（QOL）差的风险，这可能会对他们自身及其子女产生不利影响。因此，在为CP患儿提供康复治疗时，考虑照料者的福祉非常重要。在南非，尚未对使用教育工具来调节主要照料者压力和生活质量的干预措施在这一人群中进行测试。
本研究的目的是确定一项名为Hambisela的基于小组的教育干预措施对南非豪登省马梅洛迪镇CP患儿主要照料者的压力水平和生活质量的影响。
18名CP患儿的主要照料者参与了一项准实验性的前测-后测试点研究。Hambisela是一项基于小组的教育干预措施，连续8周每周进行一次。在干预前后，使用《养育压力指数简表》（PSI-SF）和《儿科生活质量-家庭影响模块》（PedsQL-FIM）评估照料者的压力和生活质量。使用人口统计学问卷评估社会人口统计学信息。采用粗大运动功能分类系统（GMFCS）评估患儿CP的粗大运动严重程度。
在基线时收集了18名参与者的数据，在随访时收集了16名参与者的数据。在基线时，14名（87.5%）参与者有临床显著压力，在随访时降至11名（68.8%）。在Hambisela项目实施后，主要照料者的压力水平（ = 0.72）和生活质量（ = 0.85）没有显著变化。较高的教育水平与较低的主要照料者压力水平中度相关（ = -0.50； = 0.03）。
在这项试点研究中，大多数主要照料者承受着临床显著的压力水平。作为一种教育干预措施，Hambisela在降低这些CP患儿主要照料者的压力或改善其生活质量方面并不有效。需要进行更大样本量的未来研究，以调查CP患儿主要照料者的高压力水平。
为残疾儿童提供的康复服务应包括评估，以识别压力水平高的照料者。整体管理方案还应包括对照料者的关怀。
