Abstract
Parenting a child with neurodevelopmental disorder (NDD) is related to a higher rate of anxiety and depression, increased stress, and reduced quality of life. Although there is reason to believe that parenting children with NDD in low- and middle-income countries (LMIC) can be challenging, there is a lack of knowledge on the psychological distress among these caregivers, especially in rural areas. The aim of the study was to examine the psychological distress among caregivers having children with NDD in rural Nepal. Sixty-three caregivers were visited in their homes and interviewed by experienced mental health professionals. This study examined demographic information, severity of disability, perceived caregiver burden, and psychological distress, measured by the General Health Questionnaire-12 (GHQ-12). The study found a high level of psychological distress in the caregivers (M = 5.38, SD = 2.8). A majority (90.5%) scored two or higher, indicating the presence of a common mental disorder (CMD). Almost half (46%) scored six or higher, indicating a high level of distress. A majority of the caregivers reported that caring for their disabled child had a negative effect on the caregiver’s economy (70%), physical health (65%), social life (64%), and dreams and expectations for the future (81%). There was a significant relationship between the caregiver’s psychological distress (GHQ-12) and degree of disability in the child (Gross Motor Function Classification System), degree of caregiver burden, feeding problems, having health workers as a possible source of help, receiving incentive from the government, having somebody to confide in, and caregiver illiteracy. A forward regression analysis entering the significant factors indicated that caregiver burden, having someone to confide in, and having health workers as a possible source of help were significant related to psychological distress. The final step of the model explained 42.4% of the variance in psychological distress among the caregivers. The study indicates a high level of psychological distress and high overall burden in caregivers of children with NDD in rural Nepal. Further implications for research and service development are discussed.
Highlights
Inclusion in the study was decided by trained child habilitation workers from the SelfHelp Group for Cerebral Palsy (SGCP), an organization working with child habilitation in rural areas through a task-shifting approach
The finding of a high level of distress in caregivers of neurodevelopmental disorder (NDD) children is in line with previous studies of caregivers of children with intellectual disability [33] in Nepal and other studies of children with disabilities in an low- and middle-income countries (LMIC) setting like India [28], Bangladesh [25], and Sri Lanka [29]
The study found a high level of psychological distress and high overall burden in caregivers of children with NDD in four districts of Nepal
Summary
Parenting a child with neurodevelopmental disorder (NDD) can be challenging [1,2]. In some parts of the world this challenge can be further exacerbated by poverty and lack creativecommons.org/licenses/by/. Research from high-income countries has shown substantially increased stress [1,2,13,14], chronicity of distress [15], fatigue [2], higher rate of anxiety and depression [12,16], emotional and cognitive problems [17], and a greater likelihood of having physical illness [17,18] for these caregivers. They forfeit employment opportunities, leisure time, and social interactions and often become housebound [2]. Resources for both disability and mental healthcare in Nepal are very limited, and there is a major lack of trained manpower, service centers, and integration of mental health into primary healthcare [41,42,43]
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