Children with disabling chronic conditions in the Western health subdistrict of Cape Town, South Africa: Estimating numbers and service gaps

Redfern, Andrew; Westwood, Anthony; Donald, Kirsten A.

doi:10.7196/samj.2016.v106i3.9825

Cited by 4 publications

(4 citation statements)

References 9 publications

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“…The burden of developmental disability due to impairment in physical, learning, language or behaviour is increasing globally, with many children living with disabling and long-term health conditions. The affected children experience compromised optimal development and lack adequate access to essential health and education opportunities that can serve their specific needs [1][2][3][4]. Most children with disabilities live in low-income and middle-income countries (LMICs), where they are marginalised and vulnerable to neglect and live in poverty, abuse, and violence [5].…”

Section: Introductionmentioning

confidence: 99%

Parental Stress in Raising a Child with Developmental Disabilities in a Rural Community in South Africa

Mbatha

Mokwena

2023

IJERPH

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Although acceptable levels of parental stress are experienced by all parents who raise children, this stress is substantially higher among parents who raise children with developmental disabilities. Sociodemographic determinants further exacerbate parental stress among parents in rural communities, which are disadvantaged in many ways. This study aimed to quantify parental stress among mothers and female caregivers of children with developmental disorders and investigate factors associated with such stress in rural Kwa-Zulu Natal, South Africa. A cross-sectional quantitative survey was used, in which the Parenting Stress Index-Short Form (PSI-SF) and a sociodemographic questionnaire was administered to mothers and caregivers who were raising children aged 1 to 12 years old who were living with developmental disabilities. The PSI-SF scores were used, where a total score of ≤84 percentile was categorised as normal/no parenting stress, 85–89 percentile was categorised as high parental stress, and scores of ≥90 were classified as clinically significant. The sample of 335 participants consisted of 270 (80.6%) mothers and 65 (19.4%) caregivers. Their ages ranged from 19 to 65 years, with a mean of 33.9 (±7.8) years. The children were mostly diagnosed with delayed developmental milestones, communication difficulties, epilepsy, cerebral palsy, autism, ADHD, cognitive impairment, sensory impairments, and learning difficulties. The majority (52.2%) of the participants reported very high-clinically significant stress levels (≥85%ile). The four factors that independently and significantly predicted high parental stress were the advanced age of mothers and caregivers (p = 0.002, OR 2.3, 95% CI 1.34–3.95), caring for a child with multiple diagnoses (p = 0.013, OR 2.0, 95% CI 1.16–3.50), non-school enrolment of the child (p = 0.017, OR 1.9, 95% CI 1.13–3.46), and frequent hospital visits (p = 0.025, OR 1.9, 95% CI 1.09–3.44). At the subscale level, child non-enrolment in a school was found to independently predict parent distress (PD) and parent-child dysfunctional interaction (P-CDI). Frequent hospital visits were statistically and significantly associated with the difficult child (DC) and P-CDI subscales. The study established high parental stress in mothers and caregivers raising children with developmental disabilities. Lack of access to school was an independent factor that consistently increased parental stress. There is a need for support and directed intervention programs aimed at supporting mothers and caregivers of children with developmental disabilities, which will enhance their parenting abilities.

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Section: Introductionmentioning

confidence: 99%

Parental Stress in Raising a Child with Developmental Disabilities in a Rural Community in South Africa

Mbatha

Mokwena

2023

IJERPH

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“…At the age of 6 -9 years old, children with disabilities begin attending government funded special schools. Research also shows that a significant number of children with disabilities are either not identified, or do not access healthcare because medical and rehabilitation support is limited and inadequate to meet the needs of these children (Redfern, Westwood & Donald, 2016). Moreover, these services are typically fragmented (without integration between different sectors of service delivery and disciplines) and not familyfocused, negatively impacting the quality of care, and underscoring the important role the family may play.…”

Section: Introductionmentioning

confidence: 99%

Supporting Early Communication Skills of Children With Developmental Disorders in South Africa

Bornman

Romski

King

et al. 2020

Infants &Amp; Young Children

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Using a mobile health application (i.e. app) to empower primary caregivers of young children with developmental disorders in low-and middle-income countries is opening up new avenues for early childhood intervention. Thirteen caregivers and ten speech-language pathologists participated in three focus groups to explore their perspectives about the potential benefits and suitability of a mobile health app as part of intervention, its features, the likelihood of using and recommending it, as well as potential pitfalls to be avoided. Both participant groups were generally positive, although there was little overlap between their responses. Caregivers generally focused on increased knowledge and skills (of all family members), as well as on empowerment and reduced costs. Speech-language pathologists on the other hand focused on how current service delivery would be enriched by increasing the dosage of therapy and enhancing parental cooperation. They also expected that the reach of service delivery would be expanded as more children and caregivers could potentially benefit. Although technology (i.e. mobile apps) could open up new possibilities for service delivery in this population, the perspectives of all stakeholder groups should be considered to ensure successful adoption of such technologies.

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“…Internationally, an intersectoral approach has been found to enhance interventions aimed at improving child well-being and addressing social determinants of health (Kim et al 2017). Indeed, Redfern, Westwood and Donald (2016) argue that intersectoral collaboration between the education and health sectors in particular is essential to promote the inclusion of children with disabilities, and to ensure that they do not fall through the cracks in the service provision system. However, while community and parent participation is cursorily acknowledged, most research internationally on intersectoral collaboration is from the perspective of service providers (from the health, nutrition and education sectors) (e.g.…”

Section: Introductionmentioning

confidence: 99%

The practice of partnerships: A case study of the Disabled Children’s Action Group, South Africa

Philpott

Muthukrishna

2019

SAJCE

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Background: Children with disabilities stand to gain from an array of services and interventions to support their development. However, relationships between parents of children with disabilities and professionals can be fraught, with the potential that professionals undermine the role of parents and overlook their agency.Aim: The aim of this study was to examine the nature of partnerships between parents of children with disabilities and professionals in the Early Childhood Development (ECD) sector, and the influences that shape partnerships within a particular context.Setting: This article documents the experiences of parents of children with disabilities from a national organisation, in respect of their partnerships with professionals.Methods: The research was a qualitative case study of a national organisation of parents of disabled children, the Disabled Children’s Action Group (DICAG), that has engaged in many different partnerships within different provinces of South Africa. Data generation techniques were document analysis and focus group discussion with staff and provincial branch members of the national DICAG office in Cape Town.Results: The findings of the study provide a nuanced and contextually situated understanding of the complexity of parent–professional partnerships in the disability sector. A key issue that emerges is that to recognise and disrupt pervasive dominant discourses and their potential to weaken partnerships, professionals need to critically attune themselves to the situated experiences of those whom they seek to support.Conclusion: The findings suggest that there is a need for a rights-based social justice agenda to underpin parent–professional relationships, to address the power dynamics and pervasive discourses that oppress the parent actors.

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Children with disabling chronic conditions in the Western health subdistrict of Cape Town, South Africa: Estimating numbers and service gaps

Cited by 4 publications

References 9 publications

Parental Stress in Raising a Child with Developmental Disabilities in a Rural Community in South Africa

Parental Stress in Raising a Child with Developmental Disabilities in a Rural Community in South Africa

Supporting Early Communication Skills of Children With Developmental Disorders in South Africa

The practice of partnerships: A case study of the Disabled Children’s Action Group, South Africa

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