A qualitative enquiry into the challenging roles of caregivers caring for children with Autism Spectrum Disorders in Ghana

Appah, Jennifer; Senoo-Dogbey, Vivian Efua; Armah, Deborah; Wuaku, Delali Adwoa; Ohene, Lilian Akorfa

doi:10.1016/j.pedn.2024.01.029

Cited by 2 publications

(3 citation statements)

References 23 publications

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“…The results of the present study represent a valid contribution to the knowledge of the mental health of family caregivers of ASD people, highlighting the importance of burden as one of the variables more relevant for its role as a mediator between the time dedicated to caring and psychological distress. ASD caregivers face challenges related to their care recipients, such as health care and education, besides those affecting their own lives as a consequence of their dedication to caring, including social life, financial issues, and emotional problems [12][13][14]. All these aspects could have a role in the caregiver's perceived burden [15].…”

Section: Discussionmentioning

confidence: 99%

“…Cronbach's α was 0.90 in this study. This scale was chosen because it was specifically designed to measure perceived burden in caregivers, and its psychometric properties are adequate for this purpose [12,41].…”

Section: Burdenmentioning

confidence: 99%

“…The challenges experienced by caregivers with ASD relatives needing care and support due to autism symptoms and co-occurring conditions are double. First, the difficulties these ASD caregivers face in accessing health care, education, and training for their relatives, and second, the social, financial, and emotional challenges they experience when caregiving for their ASD relative, where mental health and burden have relevant roles [12]. When caregivers caring for a relative with and without ASD were compared, those caring for a relative with ASD presented more mental health problems than those caring for relatives without ASD [13].…”

Section: Introductionmentioning

confidence: 99%

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The Burden and Psychological Distress of Family Caregivers of Individuals with Autism Spectrum Disorder: A Gender Approach

Herrero,

Díaz,

Zueco

2024

JCM

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Background/Objectives: Relatives play the main role as caregivers of autism spectrum disorder (ASD) individuals. Women, specifically mothers, are the majority of caregivers of ASD relatives. In addition, the literature on caregivers has shown that women have worse mental health and higher perceived burdens than men. Therefore, the aim of this work was to evaluate the relationships between psychological distress and burden using a gender approach in caregivers of ASD relatives. Methods: A cross-sectional design was applied in this study with a convenience sample of 250 caregivers of ASD relatives. Most of them were mothers caring for a child who ranged in age from 1 to 31 years. Sociodemographic variables considered were age, education level, marital status, and relation to the care recipient. Additionally, psychological distress and objective burden, in the form of hours/day caring, and subjective burden, in the form of perceived burden, were analyzed. Results: Significant gender differences were found in psychological distress and objective and subjective burden, with women showing higher scores than men. Both types of burden played a serial mediating role between gender and psychological distress. Conclusions: The results highlight the important role of gender, with women bearing the high cost of caring for their children with ASD in the form of high objective burden, caring for more hours, and subjective burden, perceiving more burden and showing poorer mental health than men. These results show the need for specific support and intervention programs targeted to women caregivers to reduce burden and improve their mental health.

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