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

Abstract

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.