|Year : 2019 | Volume
| Issue : 2 | Page : 131-134
Evaluation of depression and quality of life in mothers of Indian children with autism spectrum disorders
Apoorva Deshpande1, Nandini Mundkur2, Anusha Jayaraman3
1 Sangamitra, Sahakar Nagar, Bengaluru, Karnataka, India
2 Sangamitra, Sahakar Nagar; Centre for Child Development and Disabilities, Bengaluru, Karnataka, India
3 Centre for Child Development and Disabilities, Bengaluru, Karnataka, India
|Date of Submission||25-Jun-2018|
|Date of Decision||22-Jul-2018|
|Date of Acceptance||04-Sep-2018|
|Date of Web Publication||26-Jun-2019|
Dr. Anusha Jayaraman
Centre for Child Development and Disabilities, #202, Sackhumvit House, New BEL Road, Bengaluru - 560 054, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Parents of children with autism spectrum disorders (ASDs), especially mothers, tend to ignore or deny depression and suboptimal quality of life (QoL), and seldom seek help. In this study, we evaluated the primary caregiver depression and QoL in mothers of Indian children with ASD that are enrolled in our center for intervention programs. Methods: Children with ASD were enrolled in our center's therapist-based intervention (TI) or parent-based intervention (PI) programs. As opposed to the TI mothers, the PI mothers not only actively participated in their children's intervention but also underwent weekly sessions targeting their well-being. We assessed and compared 48 mothers (33 from TI and 15 from PI) before and at least 6 months after the start of their children's intervention programs. Results: Before the start of intervention for their children, 73% of mothers showed varying degrees of depression. At the end of 6-month intervention for their children, only 25% of mothers showed signs of depression, with no severe and extreme depression cases. Moreover, after 6 months, significant improvements were observed in 5/8 items in the short form-36 (SF-36) scale. In addition, we observed significantly better performance by PI mothers than TI mothers in 4/5 items in the SF-36 scale showing significant improvement. Conclusions: Our results showed an overall better outcome for the PI mothers than the TI mothers. This suggests that along with the positive feedback of the improvement seen in their children, additional programs specifically targeting the mental well-being of mothers would be beneficial for mothers and their children with ASD.
Keywords: Autism spectrum disorders, caregivers, depression, quality of life
|How to cite this article:|
Deshpande A, Mundkur N, Jayaraman A. Evaluation of depression and quality of life in mothers of Indian children with autism spectrum disorders. Indian J Soc Psychiatry 2019;35:131-4
|How to cite this URL:|
Deshpande A, Mundkur N, Jayaraman A. Evaluation of depression and quality of life in mothers of Indian children with autism spectrum disorders. Indian J Soc Psychiatry [serial online] 2019 [cited 2019 Jul 20];35:131-4. Available from: http://www.indjsp.org/text.asp?2019/35/2/131/261485
| Introduction|| |
It is estimated that there are more than two million children with autism spectrum disorders (ASDs) between the ages 2 and 9 years in India, and there is a lot of emphasis on ASD intervention in the country. While there are many emerging services in autism intervention, including parent-based interventions (PIs), there is very little known about the mental status of the caregiver population. Prior research shows that mothers of children with ASD not only report higher level of caregiver involvement but also higher levels of self-blame. Coping styles and caregiver burden are major predictors of health-related quality of life (QoL) in caregivers of children with ASD., Parents of children with ASD are at a higher risk of developing depression than those of typically developing children. Mothers often overlook or deny that they are experiencing depression and suboptimal QoL, and seldom seek help. Depression decreases the capacity of self-care in individuals and could increase the difficulty of parenting a child with ASD. Proper strategies implemented toward reducing caregiver stress results in increased patience, understanding, acceptance, and overall caregiving toward their children with ASD.
In this study, we determined the depression levels and QoL of mothers of children with ASD receiving intervention at our center. We investigated whether there was any improvement in the depression status and QoL of mothers after 6 months into their children's intervention, and if so, whether factors such as type of intervention, involvement of mothers, their age, level of formal education, employment status, and marital status influenced the outcome.
| Methods|| |
A total of 48 mothers (mean age: 31.55 years) whose children were diagnosed with ASD and were enrolled in the early intervention programs at our center were included in the study.
The children were enrolled in either a therapist-based intervention (TI) or a PI program based on parents' choice. Both types of intervention programs followed the Early Start Denver Model (ESDM) of developmental approach.
In TI, the therapist worked with the child in all domains of development mentioned in the ESDM. The focus of the therapy was to improve the child's developmental level in all domains with intervention. The frequency and duration of TI were 2 sessions/week for 45 min each. The therapy setting in TI required the parents to wait outside the therapy room. The feedback was shared with the parents mostly about how the child performed during the sessions and if any material needs to be brought for the next session. An individualized education plan (IEP) for the child was not always shared with the parents unless the parents requested for it.
In PI, parents (mostly mothers) were trained to work with their child under the guidance of a qualified therapist/special educator. The focus of the therapy was to improve the child's developmental level in all domains with intervention as well as to train the parent to be an interventionist at home. The frequency and duration of PI were 5 sessions/week for 3 h and each along with 2 h of home program each day. The therapy setting in PI required the mothers to accompany their children to the intervention and work with them. The feedback in PI was detailed and elaborate. The mothers participated in the IEP discussions, gained psychoeducation about ASD, and received training in delivering therapy in various developmental domains such as language, socialization, play, and learn behavior management. They received verbal feedback on a daily basis from the therapist/special educators. A written feedback was also given to them every 3 months. In addition, the PI mothers also received a mothers-only session where they were engaged in either autism awareness lectures, stress-reducing exercises and breathing techniques, and opportunities to discuss their problems like a focus group, or fun activities every week for 1 h.
The mothers of children in both groups have provided written informed consent to participate in this study. The depression levels were evaluated using the widely used modified Beck Depression Inventory (BDI). The QoL was evaluated using the well-established short form-36 (SF-36) that determined physical functioning, role limitations due to physical and emotional issues, energy levels, emotional well-being, pain, social functioning, and general health. The mothers were administered these two tests twice – once just after the children enrolled in one of the intervention groups and once after 6 months. Along with the test data, we collected general data from the mothers regarding their age, level of formal education, employment status, and marital status. During these 6 months, the children continued to receive either TI or PI.
All data were analyzed using GraphPad Prism v. 7.0 (GraphPad Software, La Jolla, CA, USA). Paired t-test was used to compare data between pre- and post-intervention and between PI and TI mothers. Spearman correlation was used to determine any correlation between mental status and general data collected from mothers such as age, level of formal education, employment status, and marital status. P < 0.05 was considered as significant.
| Results|| |
Before the start of the intervention of their children, 35/48 mothers (11/15 in the PI group and 24/33 in the TI group) showed signs of depression ranging from mild mood disturbance to extreme depression as assessed by the modified BDI. After 6 months of their children receiving PI or TI, only 11 mothers (4 in the PI group – all showing mild mood disorder and 7 in the TI group – ranging from mild mood disorder to moderate depression) showed signs of depression with overall reduced severity ranging from mild mood depression to moderate depression, with no cases of severe and extreme depression levels [Figure 1]a. The number of mothers in the normal category of BDI increased from 13 to 38 after 6 months. When comparing PI mothers with TI mothers, we did not find any significant difference in the percentage of mothers showing signs of depression before intervention (73.4% vs. 72.7%, respectively) or showing improvement after 6 months (74% vs. 78%, respectively).
|Figure 1: Changes in the depression status and quality of life in mothers of children with autism spectrum disorders. (a) The graph shows the comparison of depression status of mothers of children with autism spectrum disorders before starting intervention and 6 months after intervention, based on the Beck Depression Index. (b) The graph shows the comparison of different items in SF-36 scale assessing the quality of life of mothers of children with autism spectrum disorders before starting intervention and 6 months after intervention *P < 0.05|
Click here to view
In the evaluation of QoL in the mothers, significant improvements were observed in the total SF-36 score (P = 0.0104), role limitations due to emotional issues (P = 0.0379), energy (P = 0.0092), emotional well-being (P < 0.0001), social functioning (P = 0.0001), and general health change compared to 1 year ago (P = 0.0049) [Figure 1]b. When comparing PI mothers with TI mothers, PI mothers showed significantly better improvements than TI mothers in four out of six scales that showed significant improvements (energy levels [P = 0.03], emotional well-being [P = 0.001], social functioning [P = 0.0003], and general health changes compared to 1 year ago [P = 0.007]).
| Discussion|| |
The high number of mothers with depression and suboptimal QoL is in accordance with previous studies on caregivers of individuals with ASD.,,, Some of these studies also highlight the need and importance of mental support for caregivers of autism patients., The results from this study show that mothers from the PI group, which involved components of caregiver support, demonstrated an overall better outcome than those in the TI group. The improvements that we observed in the mothers did not always completely correlate with the improvements observed in their children after 6 months of intervention. Moreover, the better performance of the PI mothers over the TI mothers after 6 months, which is more obvious in QoL results, suggests that the outcome of intervention in their children may not be the only factor contributing to the decreased depression levels and increased QoL. The additional support provided in the PI program for the mothers and increased involvement in the intervention leading to a sense of empowerment in the PI mothers may have helped them cope with their depression and suboptimal QoL better than the TI mothers. This is in accordance with previous studies where additional support has shown positive outcome in maternal depression and caregiver burden.,
Apart from the type of intervention, we did not see any other differences based on the age, level of education, employment status, and marital status of mothers in either group. Our observations also suggested that in mothers who showed least amount of improvement in 6 months, increasing levels of self-blame and/or despair about/reluctance to accept the ASD diagnosis could be influencing factors.
| Conclusions|| |
Our results showed that the depression levels and QoL of mothers of children with ASD improved over 6 months of intervention in their children. The significantly better QoL outcome of PI mothers than TI mothers may be attributed to the program structure of the PI program at our center that has built-in sessions that focus on the mothers themselves and the group support of all mothers in the program, which is lacking in the TI program. This highlights the importance and need of support to caregivers of patients with developmental disorders such as ASD, where caregiver mental and physical well-being, especially that of the mother, can positively impact the prognosis, behavior, and well-being of the child. Mental health intervention programs specifically targeting mothers/caregivers of children with ASD would help reduce the caregiver burden and improve outcomes in their children.
We would like to thank Ms. Manju Bhargavi, Ms. Preetha Sunil, and Ms. Deepa Murnal for their assistance in data collection for this study.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Krishnamurthy V. A clinical experience of autism in India. J Dev Behav Pediatr 2008;29:331-3.
Tehee E, Honan R, Hevey D. Factors contributing to stress in parents of individuals with autistic spectrum disorders. J Appl Res Intellect Disabil 2009;22:34-42.
Da Paz NS, Siegel B, Coccia MA, Epel ES. Acceptance or despair? Maternal adjustment to having a child diagnosed with autism. J Autism Dev Disord 2018;48:1971-81.
Ji B, Zhao I, Turner C, Sun M, Yi R, Tang S. Predictors of health-related quality of life in Chinese caregivers of children with autism spectrum disorders: A cross-sectional study. Arch Psychiatr Nurs 2014;28:327-32.
Hoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, et al.
Caring for a child with autism spectrum disorder and parents' quality of life: Application of the carerQol. J Autism Dev Disord 2014;44:1933-45.
Benson PR. The impact of child symptom severity on depressed mood among parents of children with ASD: The mediating role of stress proliferation. J Autism Dev Disord 2006;36:685-95.
Bekhet AK. The mediating effects of positive cognitions on autism caregivers' depression and their children's challenging behaviors. Arch Psychiatr Nurs 2016;30:13-8.
Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, et al.
Randomized, controlled trial of an intervention for toddlers with autism: The early start Denver model. Pediatrics 2010;125:e17-23.
Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry 1961;4:561-71.
Ware JE Jr., Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83.
Herrema R, Garland D, Osborne M, Freeston M, Honey E, Rodgers J, et al.
Mental wellbeing of family members of autistic adults. J Autism Dev Disord 2017;47:3589-99.
Khanna R, Jariwala K, Bentley JP. Psychometric properties of the EuroQol five dimensional questionnaire (EQ-5D-3L) in caregivers of autistic children. Qual Life Res 2013;22:2909-20.
Singh P, Ghosh S, Nandi S. Subjective burden and depression in mothers of children with autism spectrum disorder in India: Moderating effect of social support. J Autism Dev Disord 2017;47:3097-111.
Dyches TT, Christensen R, Harper JM, Mandleco B, Roper SO. Respite care for single mothers of children with autism spectrum disorders. J Autism Dev Disord 2016;46:812-24.
Dykens EM, Fisher MH, Taylor JL, Lambert W, Miodrag N. Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics 2014;134:e454-63.