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.
ObjectiveSub-Saharan Africa has the highest prevalence of children at risk of not achieving their developmental potential, attributable largely to the human immunodeficiency virus (HIV) pandemic coupled with negative environmental factors. Childhood developmental stimulation programmes can mitigate adverse outcomes.MethodsNeonates testing HIV positive at birth will be initiated on antiretroviral treatment (ART) and receive an age-appropriate stimulation program, updated at 3 monthly intervals through the first year of life. Neurodevelopment at 12 months of age will be assessed using the Bayley Scales of Infant and Toddler Development, Third Edition (BSID-III). Outcomes will be compared with HIV-infected and HIV-exposed uninfected children (HEU) not having received the stimulatory intervention. Associations between neurodevelopmental outcomes, environmental factors, and parental stress will be investigated. The study will take place at a single site in Johannesburg, South Africa. This non-randomised controlled intervention study, with a single non-blinded comparative intervention group, aims to investigate whether an early childhood stimulation programme used in conjunction with ART initiated at birth can positively impact neurodevelopmental outcomes at 1 year of age in children infected with HIV.Trial registration 15 January 2018, Pan African Clinical Trial Registry PACTR201801002967587
Background Neurodevelopmental stimulation programmes can improve developmental outcomes. Antiretroviral therapy (ART) started soon after birth potentially limits the invasion of HIV into the central nervous system. A combination of developmental stimulation and early ART initiation may reduce developmental delays in children with perinatally acquired HIV infection. Methods At a single site in Johannesburg, South Africa, we enrolled 36 HIV‐infected neonates on ART into an intervention group (IG) participating in a yearlong home‐based, neurodevelopmental stimulation programme. Bayley Scales of Infant and Toddler Development‐3rd Edition (BSID‐III) assessments were conducted at 12 months. Scores were compared with 24 early treated HIV‐infected infants in an observational group (OG). BSID‐III assessments were also conducted for older children in an OG at 24 or 36 months. Cognitive, language and motor scaled and composite scores were analysed. Results BSID‐III scaled and composite scores were all higher in the IG apart from the gross motor scaled score (9.25 vs. 10, p = 0.1954). Receptive communication scaled score was significantly higher in the IG (10.96 vs. 9, p = 0.0331). IG composite scores were all higher than OG scores. OG children assessed at 24 or 36 months had lower composite scores in all subscales than 12‐month OG scores. Conclusions Early treated HIV‐infected children participating in a neurodevelopmental stimulation programme achieved higher BSID‐III scores at 12 months compared with early treated HIV‐infected children who did not receive the programme.
Background: Neurodevelopmental delays have been documented in children living with and infected by the human immunodeficiency virus (HIV). Early childhood stimulation programs can positively impact neurodevelopmental outcomes and have a far-reaching effect beyond childhood. Objective: To conduct a scoping review mapping evidence describing interventions aimed at mitigating or preventing neurodevelopmental delays resulting from exposure to or infection with HIV in preschool children. Methods: Electronic databases of PubMed, PsycINFO, CINAHL Plus, Google Scholar, and the Cochrane Library, reference lists of identified articles, and gray literature were searched. Title and abstract and full-text reviews were conducted independently by 2 reviewers. Study location, design, sample size, age of cohort, child's HIV serostatus, antiretroviral treatment availability for children or caregivers, neurodevelopmental assessment tool used, and details of the intervention and comparison groups were documented. Results: Ten studies meeting predetermined inclusion and exclusion criteria were identified. Six studies focused on training provided to the child's caregiver of which one offered an intervention focused specifically on stimulating child development through a home-based stimulation program. Four studies provided a child-directed intervention. Interventions ranged in duration from 10 days to 15 months. Intensity of the intervention varied from 3 times per day to biweekly. Interventions were aimed at children in the neonatal period throughout the preschool years. Conclusion: Many children are at risk of poor neurodevelopmental outcomes due to HIV infection. Few studies investigating interventions aimed at addressing this problem were identified. Further research into effective interventions aimed at improving childhood neurodevelopmental outcomes in the context of HIV is required.
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