|Year : 2020 | Volume
| Issue : 2 | Page : 57-64
Quality of Life of Caregivers of Children with Autism Spectrum Disorder in Tamil Nadu, South India
Nancy Grace Robert Renford1, Judie Arulappan2, King David Edward Thomas3, Kanchana Mala Karuppiah4, Kanniammal Chinnathambi1, Golden Catherine Thangaswamy5
1 SRM College of Nursing, SRM Institute of Science and Technology, Kattankulathur, Kancheepuram District, Tamil Nadu, India
2 Department of Maternal and Child, Health Nursing, College of Nursing, Sultan Qaboos University, Al Khoud, Muscat, Sultanate of Oman, Oman
3 MV Hospital for Diabetes, Royapuram, Chennai, Tamil Nadu, India
4 SRM Medical College and Research Centre, SRM Institute of Science and Technology, Kattankulathur, Kancheepuram District, Tamil Nadu, India
5 Jeyasekharan College of Nursing, Nagercoil, Kanyakumari District, Tamil Nadu, India
|Date of Submission||17-Feb-2020|
|Date of Decision||18-Feb-2020|
|Date of Acceptance||23-Feb-2020|
|Date of Web Publication||10-Apr-2020|
Department of Maternal and Child Health Nursing, College of Nursing, Sultan Qaboos University, P. O. Box 66, Al Khoud, Muscat, Sultanate of Oman
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Objectives: Autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and social interaction across multiple contexts, including deficits in social reciprocity and nonverbal communicative behaviors used for social interaction. Caregiving children with ASD have both positive and negative outcomes on the caregiver’s quality of life (QOL). Our study assessed the QOL of caregivers of children with ASD. Methods: Quantitative research approach and non-experimental descriptive cross-sectional research design were used. 120 caregivers of children with Autism spectrum disorder were selected. WHOQoL-BREF was used to assess the QOL of caregivers. The collected data was analyzed using SPSS version 21 software. Results: The study reported that 59.1% of the caregivers had poor QOL in the psychological domain and 56.6% of the caregivers had poor QOL in the physical domain. However, concerning both the social domain and the environmental domain, caregivers had an average QOL that is 42.5% and 45%, respectively. The caregiver’s QOL as based on the duration of child care showed a significant difference in the QOL under the psychological and environmental domains. There was no significant difference in the QOL of caregivers based on their age under the environmental domain. Conclusion: Therefore, the study has provided collective evidence of the QOL under each domain and provides a need for sustainable need-based interventions that could improve the QOL of caregivers of children with Autism spectrum disorder.
Keywords: Autism spectrum disorder, caregivers, quality of life
|How to cite this article:|
Renford NR, Arulappan J, Thomas KE, Karuppiah KM, Chinnathambi K, Thangaswamy GC. Quality of Life of Caregivers of Children with Autism Spectrum Disorder in Tamil Nadu, South India. Int J Nutr Pharmacol Neurol Dis 2020;10:57-64
|How to cite this URL:|
Renford NR, Arulappan J, Thomas KE, Karuppiah KM, Chinnathambi K, Thangaswamy GC. Quality of Life of Caregivers of Children with Autism Spectrum Disorder in Tamil Nadu, South India. Int J Nutr Pharmacol Neurol Dis [serial online] 2020 [cited 2020 Jul 13];10:57-64. Available from: http://www.ijnpnd.com/text.asp?2020/10/2/57/282287
| Introduction|| |
Autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and social interaction in multiple contexts, including deficits in social reciprocity and nonverbal communicative behaviors used for social interaction and skills in developing, maintaining and understanding relations. As the term implies, every individual on the spectrum is unique and are special. Though the children with ASD experience deficits in social communication, some children with ASD show high levels of interest towards art and music which eventually becomes their field of work or study revealing their own sphere of specific life’s satisfaction and which is also an area of limited research evidence.
In the United States, the prevalence of ASD among 4-year-old children in the year 2010 was 13.4 per 1000. In the Sultanate of Oman, the prevalence was 1.4 cases per 10,000 children aged 0–14 years. In the northern state of India, the prevalence of ASD among children aged1–10 years was 0.9/1000, with the highest prevalence noted in the rural area. Therefore there is nothing less than an escalation in the magnitude of cases with ASD., The awareness and referrals on ASD is at a very low pace among city dwellers.
Caregivers of children with ASD are usually burdened with a lifelong responsibility of caring for their children and very limited attention to their own health. In addition to this, deficient knowledge about autism, lack of facilities for the management of autism and lack of affordability to treatment adds more stress to the caregivers. These factors lead to worsening of quality of life (QOL) of caregivers in economic, educational, social and psychological domains.
QOL is defined as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. QOL is a multifaceted construct and complex concept which includes physical, independence, psychological, environmental, spiritual and social relations. Care giving of children with ASD has both positive and negative outcomes on the caregiver’s QOL. Caregivers face various issues such as financial constraints, social stigma, marital discord, decreased physical health, restriction of roles and activities, lack of resources, challenges related to child’s education and caregiver’s ongoing grief about their child’s destiny and transition to adulthood. Parents of children with ASD show significant impairment in their QOL. Studies have highlighted an increased level of parental distress, anxiety, and depression among parents of children with ASD as compared to parents of typically developing children.
Apart from the core features of ASD, the condition also presents itself with other associated co-morbidities and challenging behaviors. The difficulty in carrying out basic activities of daily living such as toileting, brushing, feeding and dressing, sensory issues, sleep disturbances, general developmental delay and preparing the child for safety are some of the other challenges faced by the caregivers of children with ASD. It is also reported that mothers of children with ASD experience less marital satisfaction, affection expression, adaptability and cohesion compared to mothers of typically developing children. Parents of children with ASD have higher divorce rates throughout their child’s childhood, adolescence and early adulthood compared to parents of children without ASD. Research reports also state that families experience high levels of stress, misconceptions, guilt, blames regarding child’s diagnosis and social stigma causing discrimination not only at the child but the whole family.
Vasilopoulou and Nisbet carried out a systematic review and found that in nine studies there was a negative correlation between ASD and QOL of parents in at least one domain in QOL. Four of the studies reported that the caregivers had an impact in the physical, psychological and environmental domains.
As children transit into different developmental stages, the parents or caregivers encounter new stressors that they have to face. Studies reported that parent’s concerns were related to issues such as learning to meet new and unfamiliar challenges and caring for basic needs and finding an engaging niche with a sense of belonging for their child in the everyday milieu. Caregivers require support and more information on how to adapt and cope with stressors., They often prioritize the needs and cares of their children compromising on their necessities. The constant demands relating to child care can affect their QOL. It is therefore essential to assess the QOL of caregivers and focus on their needs which will, therefore, help in planning interventions for improving the QOL of caregivers.
There are many studies that have been conducted to assess the QOL of caregivers of children with ASD. However, very limited literature is available related to QOL of caregivers of in Southern part of India. Therefore, this study aimed to assess the QOL of caregivers of children with ASD in Tamil Nadu, a Southern part of India to understand the impact of ASD on the QOL of caregivers, their concerns about the child’s future and to plan need-based services for the caregivers.
| Methods|| |
Quantitative research approach and non-experimental descriptive research design were used. The study variable was the QOL of caregivers of children with ASD. 120 caregivers were selected using non probability convenient sampling technique from Chennai district Tamil Nadu, India. The inclusion criteria included caregivers having children with ASD diagnosed under the DSM V criteria by a neurologist or clinical psychologist aged 4-12 years, caregivers residing with the child in the same household for more than six months, caregivers who consented to participate in the study, caregivers who were able to converse in English or Tamil and caregivers who accompanied their children to special schools.
The exclusion criteria included caregivers who were part of a similar study, formal caregivers who are paid to provide care to the child, caregivers with significant medical/psychiatric illness based on medical records, caregivers with degenerative conditions or auditory impairment, and caregivers providing care to spouse/parent/in-law with significant medical/psychiatric illness that might contribute to caregiver’s burden. Caregivers providing care to a child in the family with significant medical/psychiatric conditions that might contribute to the caregiver’s burden and caregivers of children with ASD who had significant family issues and if the child with ASD had significant co-morbid conditions were excluded.
All procedures performed in this study involving human participants were in accordance with the ethical standards of the Institutional Ethics Committee (IEC, Reference no.-1091/IEC/2017). Permission was obtained from the schools following which the study was conducted in various special schools. Informed consent was obtained from all individual participants included in the study.
Instruments in English were translated into Tamil by bilingual experts and the Tamil instruments were translated back to English and content validity and reliability were tested. The tested tools were found reliable and valid. Considering the cultural needs of the caregivers, the tools were translated in Tamil language and the caregivers were comfortable in answering to the tools. The tool included the demographic Performa which consisted of details regarding the caregivers and their children. The demographic data of the caregivers included their age, gender, relationship with the child, number of children, type of family, education, occupation, income, mode of delivery, and complications. The demographic data pertaining to the child included age of the child, gender of the child, speech development, motor milestone and duration of child’s care.
The Tamil version of the WHOQoL-BREF was used to assess the QOL of caregivers. The WHOQol- BREF is a shortened version of the WHOQol- 100. It is a self-administered questionnaire and consists of 26 items. The instrument is categorized into 4 domains viz; physical health, psychological health, social relationships, and environmental health and individual items about an individual’s overall perception of the QOL and health. The items were rated on a 5-point scale. The reliability of the original version was tested in previous studies in six countries. It was 0.91 in Australia, 0.88 in Brazil, 0.90 in Israel, 0.86 in Russia, 0.88 in Spain and 0.90 in USA. Permission was obtained to use the tool.
Caregivers were explained about the aim of the study and were provided the informed consent. After obtaining their consent, caregivers were requested to fill the demographic performa and the WHOQoL-BREF tool. Caregivers completed the questionnaire while their children attended the respective therapy. The minimum time duration of 20–25 minutes was needed to fill the questionnaire. Caregivers were assured about the confidentiality of their personal details and information.
The collected data was analyzed using SPSS version 21 software using descriptive and inferential statistics. The descriptive statistics such as frequency and percentage distribution was used to understand the demographic distribution of caregivers and their children under different categories followed by the frequency and percentage distribution of overall QOL of caregivers. Inferential statistics such as Analysis of Variance test (ANOVA) was also used to analyze and compare the different domains of QOL based on the age of caregivers and the duration of child care.
| Results|| |
[Table 1] indicates that the majority of the caregivers (49.2 %) were in the age category of >35years and 7.5% of the caregivers were in the age group of < 25 years. 90.8% were females and 9.2% were males. Majority of the caregivers (88.4%) were mothers and 1.6% were grandfathers. Almost 69.2% had more than one child and 30.8% had one child. More than half of the caregivers (73.3%) belonged to a nuclear family and 26.7% of the caregivers belonged to a joint family. 31.7% were graduates and 1.7% were professionals/honors and illiterate. 60.0% were unemployed and 0.8% were skilled workers. 32.5% of the caregivers had an income of Rs.16, 078-Rs.21, 437 and 0.8% had an income of Rs.2, 165- Rs. 6,430. Considering the mode of delivery, 49.2% of the caregivers had Lower Segment Cesarean Section and 1.7% had vacuum delivery. Majority of the caregivers (56.7%) had no complications and 1.7% had children born with meconium-stained aspiration. 56.7% of the caregivers had children between 7 and 12 years of age and 43.3% of the caregivers had children between 4 and 6 years of age. 75.8% of the caregivers had male children and 24.2% had female children. 73.3% of the children had delayed milestone development and 26.7% of the children had attained milestones. Majority of the children (94.2%) had delayed speech and 5.8% had attained speech. Since their diagnosis, 45.8% of the caregivers were providing care for a duration of 4-6 years and 19.2% were providing care above 7 years.
|Table 1 Frequency and percentage distribution of demographic and clinical variables of caregivers of children with Autism spectrum disorder|
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[Table 2] shows the four domains under the WHOQOL-BREF (26 item) tool which depicts the QOL of caregivers of children with ASD. In the physical domain, 68(56.6%) of the caregivers had poor QOL, 44(36.6%) had an average QOL and 8(6.6) had a good QOL. In the psychological domain, 71(59.1%) had poor QOL, 26(21.6%) had an average QOL and 23(19.16%) had a good QOL. With regard to the social domain, 27(22.5%) had poor QOL, 51(42.5%) had an average QOL and 42(35%) had a good QOL. Considering the environmental domain 20(16.7%) had poor QOL,54(45%) had an average QOL, and 46(38.3%) had poor QOL.
|Table 2 Frequency and percentage distribution of Quality of life of caregivers of children with autism spectrum disorder|
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The QOL of caregivers was further compared and analyzed based on the caregiver’s age ([Table 3] and [Figure 1]). In the physical domain, there was a significant difference in the QOL of caregivers between all the groups, with a higher mean score in group 2(18.27±1.710) than group 1(17.33±1.500) and group 3(18.10±1.550). This may be due to the reason that caregivers in the age group 2(25–35 years) had a considerable amount of energy for daily activities and other related tasks, better sleep and work capacity. In addition, they were less dependent on medical aids. According to the WHOQOL-BREF, the following facets were incorporated under the physical domain; activities of daily living, dependence on medicinal substances and medical aids, energy, and fatigue, mobility, pain and discomfort, sleep and rest, and work capacity.
|Figure 1 Simple bar with 2 standard error diagram compares the caregivers age with their QOL Domain scores|
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The psychological domain also showed a significant difference in the QOL of caregivers between the groups, with a greater mean score in group 3 (16.12±1.800) than group 2 (15.75±2.005) and group 1(15.11±1.167). This could be due to the increase in spiritual beliefs, better thinking, understanding and positive feelings. The following items are enlisted in the psychological domain; bodily image and appearance, negative feelings, positive feelings, self-esteem, spirituality/religion/personal beliefs, thinking, learning, memory and concentration.
With regard to the social domain, there was a significant difference in the QOL of caregivers between all groups, with a greater mean score in group 3(6.80±1.540) than in group 2 (6.79±1.538) and group 1(5.56±1.333). This may be due to better social support and personal relationships within family and societal networks. The following items according to the WHOQOL-BREF were incorporated under the social domain; personal relationships, social support, sexual activity.
The environmental domain did not show any statistical significance between the caregivers of the three groups though the mean score of all the three groups differed. This could be due to the fact that both the groups (1 and 2) did not differ in terms of additional support such as gaining new information, skills, and resources as compared to group 3. The environmental domain consisted of the following facets; financial resources, freedom, physical safety and security, health and social care, home environment, opportunities acquiring new information and skills, participation in and opportunities for recreation, physical environment, and transport.
The QOL of caregivers was further compared and analyzed based on the duration of child care ([Table 4] and [Figure 2]). In the physical domain, there was a significant difference in the QOL of caregivers between all the groups, with a higher mean score in group 3(18.22±1.702) than in group 2(17.00±1.379) and group 1(16.65±1.834), which can be due to the prolonged duration of child care that has made the caregivers get accustomed to the daily activities and work routine over time.
|Table 4 Comparison of Quality of Life of caregivers based on Duration of child’s care|
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|Figure 2 Graphical representation of the caregiver’s duration of child’s care with QOL domain scores|
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In the psychological domain, there was a significant difference between groups, with a greater mean score in group 3(16.45±1.456) than group 2(15.23±2.059) and group 1(15.00±1.715). This could be because of the increased duration of care that has influenced the experience in child care and acceptance to child’s condition. Considering the social domain, it showed a significant difference in the QOL of caregivers among groups, where group 3(7.026±1.369) had a greater mean score than group 2(7.01±1.393) and group 1(6.68±1.795). This may be due to the duration of child care accompanied by better social support and information regarding resources and treatment modalities.
In the environmental domain, there was a significant difference among groups with a greater score in group 3(21.35±2.872) rather than group 2(19.36±1.950) and group 1(18.45±2.597). A higher score in the environmental domain is noted as the increase in the duration of care may have accompanied a better home environment, safety, and security.
| Discussion|| |
The evidence on the QOL of the caregivers of children with ASD under the context of different domains is an evolving scenario. Due to the paucity of literature regarding the QOL among the caregivers of children with ASD in the Southern Indian population, this study assessed the QOL of caregivers of children with ASD using the WHOQOL-BREF tool. Considering the QOL of caregivers based on age, the psychological domain displayed the highest value which showed that among the present strata of the QOL, majority of the caregivers who were more than 35 years had significantly better psychological QOL when compared to caregivers below the age of 25 and between 25 and 35 years, which presents the necessity to further improvise on support and intervention that can best address the needs of the caregivers. Similar findings are reported in other studies. The caregivers in the age group (<25years and 25-35years) begin to engross themselves to an unimaginable situation such as burn out, increased stress, marital discord and other related issues that demand most of their time and energy. Amongst such burst of emotions, the psychological QOL has proved to be the unmet need hitherto. Lack of awareness of the disorder and parental stress due do delayed diagnosis and approach to social support and services for the child is a contributing factor for the poor QOL in the psychological domain in caregivers below 25 years. However, the current study findings disagree with the study which found that QOL scores worsened with increasing age of caregivers. This may be due to increased levels of frustration due to multiple responsibilities of the caregivers over the period of time. All the above-mentioned studies have discussed the need to readdress the situation where some of the main manifestations under psychological domains such as stress, anxiety, depression should be the target of any intervention in caregivers of children with ASD.
Considering the QOL based on the duration of child’s care, the psychological domain showed that caregivers providing care for more than a duration of 7 years and above had a better QOL compared to the other two groups which involved caregivers caring for their child for a duration of 4–6 years and 1–3 years. These results, however, disagree with the study findings conducted in Turkey which stated an association between the worsening QOL scores and longer duration of care since the diagnosis of more than 5 years. Other similar studies also have reported that longer duration of caregiving for children with ASD results in psychological distress like anxiety and depression thereafter altering their well-being and QOL. This can be related to the lack of support, social stigma, lack of focus and concentration over other activities. It is also reported that mothers of children with ASD had difficulty in accepting the diagnosis, had negative impact on the relations between parents, and the negative attitude of the society.
The environmental domain depicted that the caregivers providing care for a duration of 7 years and above had a better QOL in comparison to G2 (4–6 years) and G1(1–3 years). This can be supported with good housing and physical environment, in addition, to support from friends and caregivers. The positive aspects stated by the mothers were the presence and support of relatives, friends, and experts which alleviated the suffering and helped to continue the efforts to ensure optimal conditions for the development of the child.
Considering the QOL of caregivers based on gender, males had a poor psychological and social QOL compared to females. However, the results of this study are not in accordance with the previous studies conducted in Qatar where the females had indicated poor mental health compared to males. This could also be due to various factors such as the difference in cultural backgrounds, the social and psychological support that female caregivers receive from the special school settings and informal support received from their friends and family. Lastly due to the higher female population compared to the males in the present study.
Our study findings show individual domain-wise comparison with demographical attributes which is one among other such empirical literature on the QOL of caregivers of children with autism in the South Indian context and these findings demand the need to further investigate and document such information that could help policymakers formulate targeted treatment and interventions that would provide healthcare delivery for the patient including the caregivers, in a holistic perspective. This study did not document the awareness of the caregivers on ASD which is important in the diagnosis of autism at an earlier stage and/or the role of socioeconomic status of caregivers that is essential for the healthcare service that’s both available and affordable to the caregivers.Overall the study states that 59.1% of the caregivers had poor QOL in the psychological domain and 56.6% of the caregivers had poor QOL in the physical domain. However, concerning both the social domain and the environmental domain, caregivers had an average QOL i.e. 42.5% and 45% respectively. Previous literature that assessed the QOL of caregivers in the Indian context stated that parents of children with ASD showed significant impairment in all four domains when compared to parents of normal children. Similarly another study that assessed the QOL of parents of children with ASD also stated that their QOL was significantly impaired in all four domains when compared to their controls. However, the results of our study showed that the majority of the caregivers had an average QOL in all four domains whereas only a few caregivers showed good QOL. This could be due to the availability of support and services for caregivers.
This study has some limitations, firstly in terms of the relatively small sample size, making the possibility of generalization a major question. Secondly, the QOL can differ in caregivers based on their cultural differences and background. The current study has only a few supportive kinds of literature from the Indian context due to the paucity in studies. Caregivers of children with ASD in the present study were confined to special school settings.
| Conclusion|| |
Raising children can impose various challenges on the parents or caregivers; On the other hand, caring for children with ASD can impact the QOL of caregivers in a multidimensional perspective. This study provided collective evidence of the QOL under each domain and provides a need for sustainable interventions that could improve the QOL of caregivers of children with ASD. The findings shall help the policymakers in India to provide better and focused support to children with ASD and their caregivers.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4]