Perceived Mental Health and Quality of Life in Mothers of Children with Autism Spectrum Disorder in Armed Forces in a Tertiary Care Center of North India: A Cross-Sectional Study

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Ann Child Neurol. 2024;32(4):245-249

Publication date (electronic) : 2024 September 26

doi : https://doi.org/10.26815/acn.2024.00612

Rahul Sinha, DM^,1, Karishma Rajpoot, M.Phil¹, Ananya Uniyal, BSc (Psy Hons)¹, V. Sabid Syed, MD²

¹Department of Pediatrics and Pediatric Neurology, Command Hospital Chandimandir, Panchkula, India

²AMC Centre and College, Lucknow, India

Corresponding author: Rahul Sinha, DM Department of Pediatrics and Pediatric Neurology, Command Hospital Chandimandir, Panchkula, Haryana, India Tel: +91-8800630109, Fax: +91-1722589054 E-mail: drrahul_2000@yahoo.com

Received 2024 June 5; Revised 2024 August 29; Accepted 2024 September 10.

Abstract

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterised by deficits in social communication and the presence of restricted interests and repetitive behaviors, beginning in childhood. Symptoms include a lack of socialisation, poor communication skills, delayed developmental milestones, echolalia, repetitive motor behavior, sensory issues, hyperactivity or restlessness, poor attention and concentration, unusual noise-making, and poor eye contact [1].

Multiple research findings consistently suggest that parents of children with ASD perceive their mental health as poorer, particularly in terms of stress, anxiety, and depression, compared to parents of children without this disorder [2]. After an ASD diagnosis, caregivers also experience a decline in their quality of life due to the stressors associated with managing a child with autism [3,4].

In Indian society, mothers are often viewed as the primary caregivers, dedicating a substantial amount of time to child-rearing, particularly when caring for children with special needs. Children with ASD require consistency and struggle with changes in routine. Consequently, personnel in the Indian armed forces who have children with ASD may face additional challenges due to frequent relocations across states. Mothers of children with autism encounter numerous difficulties that can profoundly affect their well-being and quality of life, a situation that is exacerbated if they or their spouses are members of the defence services. A 2023 study by Raju et al. [5] highlighted that parents from culturally diverse backgrounds exhibit different levels of psychosocial functioning when raising a child with ASD. The research focused on the quality of life among Indian parents of children with ASD and its association with sociodemographic factors. Data on sociodemographic characteristics and quality of life were collected using a self-reported questionnaire and the World Health Organisation Quality of Life Scale-Brief (WHOQOL-Brief) instrument. The findings underscore the need for intervention strategies aimed at improving family functioning, enhancing support systems, and fostering effective coping mechanisms for parents. The study by Dawson et al. [2] explored the social behavior, mood, and gaze patterns of autistic children during realistic interactions with their mothers. The results suggested that the unique affective behavior of autistic children might negatively influence the behavior of others around them. Despite increasing research on autism, there remains a substantial gap in understanding the specific experiences and needs of mothers in this context, as well as how the military lifestyle impacts these factors [6].

Our research aims to bridge this gap by assessing the quality of life and perceived stress, anxiety, and depression levels in mothers following an ASD diagnosis of their child. The outcomes of this study are expected to offer valuable insights into how factors such as having an autistic child and being part of an Indian defence background affect the mental health and quality of life of these mothers. This knowledge could aid in the creation of tailored interventions that also include support for mothers. Additionally, the findings may provide a basis for the further development of policies and support systems within the Armed Forces, enhancing the support for mothers raising autistic children and ultimately fostering a more inclusive and supportive society.

Materials and Methods

Results

During the study period from July 2023 to December 2023, a total of 100 mothers with children diagnosed with mild to moderate ASD who attended the paediatric and paediatric neurology outpatient departments were included. Their responses to the questionnaires were analysed (Fig. 1).

Fig. 1.

Flow of study.

Of the children included in the study, 73% were boys and 27% were girls. Approximately 38% were aged between 3 and 5 years, and 62% were between 6 and 10 years old. The mean±SD duration since the autism diagnosis was 1.0±0.5 years. The educational levels of the mothers were distributed as follows: 25% had a primary education, 50% had a secondary education, and 25% were graduates (Table 1).

Table 1.

Demographic characteristics of the mothers and their children (n=100)

Mothers scored moderately for anxiety with a mean±SD of 10±6.4 and for stress of 19±6.7, but they scored mildly for depression of 11±7.7, according to the DASS-21 questionnaire (Tables 2 and 3). In this study, 35 mothers experienced mild to severe depression, 50 exhibited significant anxiety, and 66 displayed notable stress.

Table 2.

Mean scores and standard deviation for the DASS-21 questionnaire

Table 3.

Normal range for DASS-21

The WHOQOL-Brief results indicated a moderate decline in psychological health (transformative [T]-score=38) and social relationships (T-score=31). However, participants were satisfied with their environment (T-score=75) and physical health (T-score=63), which may be attributed to their defence background, facilitating easier access to healthcare and improved living conditions (Tables 4 and 5).

Table 4.

T-scores for the WHOQOL-Brief questionnaire

Table 5.

Interpretation of T-scores

The WHOQOL-Brief is a 26-item instrument consisting of four domains: physical health (seven items), psychological health (six items), social relationships (three items), and environmental health (eight items); it also contains QOL and general health items. Each individual item of the WHOQOL-Brief is scored from 1 to 5 on a response scale, which is stipulated as a five-point ordinal scale. The scores are then transformed (T-score) linearly to a 0–100-scale. The formula used for transformed scale calculation is (actual raw score - lowest possible raw score/possible raw score range x100) where 'actual raw score' is the values achieved through summation, 'lowest possible raw score' is the lowest possible value that could occur through summation (this value would be 4 for all facets), and 'possible raw score range' is the difference between the maximum possible raw score and the lowest possible raw score (this value would be 16 for all facets: 20 minus 4). This transformation converts the lowest and highest possible scores to zero and 100, respectively. Scores between these values represent the percentage of the total possible score achieved.

Discussion

In our study, which utilised the DASS-21 questionnaire, mothers exhibited moderate levels of anxiety and stress, but only mild levels of depression. However, one-third of the mothers experienced mild to severe depression, half reported significant anxiety, and two-thirds faced notable stress. Additionally, according to the WHOQOL-Brief questionnaire, there was a moderate decline in psychological health and social relationships. The cross-sectional study conducted by Alibekova et al. [9] in 2022 explored the prevalence of stress, anxiety, and depressive symptoms among a diverse group of 146 parents. These parents, who had varying sociodemographic characteristics, levels of social support, and unmet needs, were caring for children with ASD. Their findings indicated significantly higher levels of stress and depression among these parents [9].

Concerns about the quality of life of parents of children with ASD have been raised by a 2023 study conducted by Raju et al. [5]. This research examined how culturally diverse parents exhibit varying psychosocial functioning when raising a child with ASD [4]. The findings underscore the need for intervention strategies that focus on improving family functioning, enhancing support systems, and aiding parents in developing constructive coping mechanisms.

Multiple research findings have consistently suggested that parents of children with ASD perceive their mental health as poorer, particularly in terms of stress, anxiety, and depression, compared to parents of children without this disorder.

Qualitative data further support the notion that parental quality of life is negatively influenced by their child's ASD. Many parents face significant challenges in balancing daily activities with caregiving, experience financial difficulties, or suffer from depressive moods. Variables assessing parental cognitions, such as locus of control and socioeconomic support, have been identified as more significant predictors of parental mental health issues than child-centric variables like autism severity and external behaviors [10,11]. Social support for parents of children with ASD significantly influences the self-reported stress levels experienced by mothers. The major factors seem to be associated with the unlikely remission of autism-related behaviors that attract social criticism, a general lack of public understanding about ASD, and low levels of available social support for parents [5].

This study assessed the perceived mental health and quality of life of mothers whose children have mild to moderate ASD. Existing literature suggests that mental health and quality of life are generally poor among caregivers following an ASD diagnosis [12]. Our research focused specifically on mothers whose children have mild to moderate autism and whose spouses are employed in the armed forces. These families face unique challenges due to frequent relocations to new and often challenging environments every 2 to 3 years. Children with ASD often experience stigmatisation, which has multiple consequences including social isolation, low self-esteem, diminished quality of life, and exacerbated symptoms. Additionally, parents of children with ASD typically encounter significant financial burdens and obstacles in their professional lives, as well as perceived social discrimination against their children.

This study highlights that a significant number of mothers with children diagnosed with ASD experience a decline in mental health and a deterioration in their quality of life. Many parents and caregivers of children with ASD hold various misconceptions, exhibit negative attitudes, and engage in ineffective parenting practices, indicating a need for enhanced knowledge and understanding. To dispel myths and alleviate fears surrounding ASD, increasing awareness through various channels such as mass media, social media, and lectures, coupled with targeted education from healthcare providers, especially paediatricians, would be beneficial. Such initiatives are likely to improve understanding of the condition, which in turn could foster more positive attitudes and practices towards ASD, thereby helping to maintain good mental health and quality of life. Additionally, enhancing the involvement of fathers in the care of their autistic children could be beneficial. A parental management programme specifically designed to improve parental care for these children could also be implemented.

The primary strength of the study lies in its focus on a sample of mothers with a defence background. However, the uniqueness of this sample limits the generalisability of the findings to similar populations. Additionally, since the data collection occurred in Northern India, the results may not be representative of other regions, given India's vast cultural and social diversity. The questionnaires used in the study did not encompass the full complexity of the issue, which introduces certain limitations. Therefore, a comprehensive and detailed evaluation of the mothers' mental health and coping mechanisms is recommended to achieve more accurate results that could enhance the effectiveness of health promotion and awareness programs. Moreover, the study accounted for the heterogeneity of the population in terms of geographic origin, native language, and educational background. These variables could affect how mothers interpret the questionnaire and respond. Furthermore, a potential bias exists due to a tendency among participants to withhold information because of perceived social stigma, which could further impact the accuracy of the study's findings.

In conclusion, the study highlights the perceived stress, anxiety, and depression levels amongst mothers of children with ASD, which in turn have major effects on both the management of ASD by caregivers and their own well-being. Therefore, it is crucial to educate both primary caregivers and the broader community about the importance of mental health and quality of life following an ASD diagnosis. This education is expected to improve therapeutic outcomes, overall quality of life, and the interpersonal and social relationships of both the parents and their children.

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