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Prevalence of depression in mothers of children having ASD
Current Medicine Research and Practice 7 (2017) 11–15
Contents lists available at ScienceDirect
Current Medicine Research and Practice journal homepage: www.elsevier.com/locate/cmrp
Original article
Prevalence of depression in mothers of children having ASD Anju Jose a, Sandhya Gupta b,*, Sheffali Gulati c, Savita Sapra c a
Nursing Services, AIIMS Hospital, New Delhi, India College of Nursing, AIIMS, New Delhi, India c Department of Pediatrics, AIIMS, New Delhi, India b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 11 June 2016 Accepted 13 December 2016 Available online 13 January 2017
Autism spectrum disorder (ASD) is a pervasive developmental disorder that impairs a child’s communication and social interaction and causes the development of stereotypic or repetitive behaviours or interests. Aim of the study: To find out the prevalence of depression in mothers of children with ASD. Materials and methods: A descriptive, cross-sectional study design was chosen for the study. Convenience sampling method was used to enrol 125 mothers of children with ASD from Autism clinic, Department of Paediatrics, AIIMS, New Delhi from June to November 2013. Data regarding sociodemographic details, health history profile and selected variables of the mothers was collected using a structured questionnaire. Inventory of depressive symptomatology (IDS-SR30), a standardised, structured inventory which contained 30 items was used to assess the depressive symptoms in the mothers. Results: Over three-quarters (76.8%) of the mothers reported depression. Levels of depression in the mothers were significantly associated with their physical health and quality of life. Mothers of children with severe autism (44.8%) had higher levels of depression than those with mild (25.6%) and moderate (29.6%) degrees of autism. Conclusion: Mothers of children with ASD need to be screened for the presence of clinical depression and given social support, psycho-education and appropriate referral so that correct treatment can be started at the earliest; thus the mothers would be able to manage their life situations in a better way and to cope with the behavioural and social impairments of their child. ß 2016 Sir Ganga Ram Hospital. Published by Elsevier, a division of RELX India, Pvt. Ltd. All rights reserved.
Keywords: Autism spectrum disorders Depression Mothers Children
1. Introduction Autism spectrum disorder (ASD) is a complex developmental disability; it is a neurological based developmental disorder that impairs a child’s communication and social interaction and causes the development of stereotypic or repetitive behaviours or interests. It is a prevalent disorder with tremendous impact on individuals, families and society. It occurs ubiquitously, regardless of races, nationalities, cultures and social classes. The global prevalence of autism spectrum disorders is 62 per 10,000 people.1 Prevalence of autism spectrum disorders in India is 1 in 250 individuals.2 Recent figures released by the CDC show that autism spectrum disorders now affect 1 in 88 children (Fig. 1).3
* Corresponding author at: College of Nursing, AIIMS, Ansari Nagar, New Delhi, India. E-mail address: [email protected] (S. Gupta).
Child with an autism spectrum disorder may be a big stressor on the family. It is a disorder that inherently changes the parent–child relationship: communication is impeded or even impossible; intimacy can be a challenge and a child’s self-injurious behaviours may make a parent feel frightened and helpless. Parenting a child with a developmental disability may be an exhausting task especially for mothers as they are more involved with care giving. Mothers of children with autism are more likely to suffer from depression than mothers of children with intellectual disabilities without autism and mothers with typically developing children.4,5 Depressed mothers have poor parenting skills and negative interactions with their children. Maternal depression is a significant risk factor for child abuse and neglect. Depression of mother is significantly associated with more hostile, negative parenting and it leads to poorer physical health and well-being of the child. It has been observed that clinicians and psychologists are very concerned about the child with ASD; but seldom is the focus on the impact on the parents especially the mother. There is a gap in this area of
http://dx.doi.org/10.1016/j.cmrp.2016.12.003 2352-0817/ß 2016 Sir Ganga Ram Hospital. Published by Elsevier, a division of RELX India, Pvt. Ltd. All rights reserved.
[(Fig._1)TD$IG]
A. Jose et al. / Current Medicine Research and Practice 7 (2017) 11–15
12 40
n = 125 35
33.6%
30 26.4%
25
No
23.2%
Mild
20
Moderate 14.4%
15
Severe Very severe
10 5
2.4%
0 Levels of depression
Fig. 1. Bar graph showing the percentage distribution of levels of depression in mothers of children with autism spectrum disorders (n = 125).
research in Indian population. This research is planned to get the information on prevalence of depression in the mothers of children with ASD and to find out the association between demographic and selected variables of child and mother with the levels of depression in mothers of children with ASD. 2. Method A cross-sectional study design was chosen for the study. Convenience sampling method was used to enrol 125 subjects for this study from Autism clinic, Department of Paediatrics, All India Institute of Medical Sciences, New Delhi from June to November 2013. During this period of six months, 140 mothers of children with autism attended the clinic. Out of those 140 mothers, 125 were enrolled in the study, based on the inclusion criteria of mothers of those children diagnosed with autism spectrum disorders attending Autism clinic Dept. of Pediatrics, AIIMS and mothers who are willing to participate in the study. Approval to conduct the study was obtained from the ethics committee, AIIMS. Two tools were used for data collection a data sheet for socio-demographic details of the subjects, their select variables and subjects’ health history profile. This structured questionnaire had two sections. Section-1 was designed to elicit the socio-demographic details of the subjects and some select variables specific for the study. The section-2 consisted of eight items to explore the history of mental health problems or treatment in the subjects and to explore the family history of mental illness. Five minutes were taken to collect the data on Structured Demographic profile sheet. Tool no. 2, ‘Inventory of depressive symptomatology (IDS-SR30)’ (Rush et al., 1996)6 was a standardised and structured inventory and contained 30 items. The IDS assessed all the criterion symptom domains designated by the American Psychiatry Association Diagnostic and Statistical Manual of Mental Disorders – 4th edition (DSM-IV)7 to diagnose a major depressive episode. These assessments can be used to screen for depression, although they have been used predominantly as measures of symptom severity. The seven day period prior to assessment is the usual time frame for assessing symptom severity. It took approximately 10–15 min to complete. The minimum score of this tool was zero and the maximum score was 84. Based on ‘‘Inventory of Depressive Symptoms’’ (SR30) score the severity of depression was measured as: 0–13: no depression, 14–25: mild depression, 26–38: moderate depression, 39–48: severe depression and 49–84: very severe depression.
Pilot study was conducted in Autism clinic, Dept. of Paediatrics AIIMS on 10 subjects for assessing the feasibility of the main study, prior to the actual data collection and was found feasible. The subjects those fulfilling the inclusion criteria were explained the purpose of the study. An informed written consent form was signed by the subjects. Subjects filled subject data sheet followed by IDS-SR30 and subjects were informed about the prevalence and severity of depression. Subjects with severe depressive symptoms were given remedial counselling and offered treatment facilities in Psychiatry out-patient department of AIIMS. All subjects were provided with a public education material on depression as well. Descriptive statistics i.e. mean, percentage, frequency, range and standard deviation and inferential statistics i.e. Chi square/Fisher exact test were used for analysis of data. Level of significance was set as p < 0.05. Data was analysed by using statistical package SPSS version 16. 3. Results The mean age of the children was 4.84 years (SD 2.168). More than half (55.2%) of the children were pre-schoolers and belonged to 3–6 years of age. Most (77.6%) of the children were male. The mean age of the mothers was 31.33 years (SD 4.610). More than one third (38.4%) of the mothers were graduates. Most of the mothers (89.6%) were house wives. Nearly half of the spouses (46.4%) were graduates and were employed in private sector. Most (81.6%) of the families had monthly income more than Rupees 20,000/-. Five (4%) children with autism had one sibling with developmental disability. More than one tenth (12.8%) of the mothers had a relative having at least one child with developmental disability. Most (88.8%) of the mothers had another family member accompanying for attending the therapy session at the clinic and majority (72.8%) were spouses. Majority (71.2%) of the mothers were having informal social support. Nearly three fifth (58.4%) of the mothers were satisfied with the available informal social support. Nearly three fourth (73.6%) of the mothers were satisfied about their physical health. More than one third (40%) of the mothers rated their quality of life as poor. Nearly one third (30.4%) of the mothers had physical health problems and 21.6% of the mothers reported migraine after the diagnosis of autism in the child. Six (4.8%) mothers had been diagnosed with a mental illness prior to birth of child with autism and 4% of the mothers had taken antidepressants. Nearly one fifth (18.4%) of the mothers had desperate thoughts such as wishing for death and 14.4% of mothers had such thoughts after the diagnosis of autism in the child. 4. Discussion More than three-quarters (76.8%) of the mothers reported depression. Most (60%) of them had mild and moderate depression. One seventh (14.4%) of mothers had severe depression and 2.4% had very severe depression. Similar results were found in previous studies. Fido and Saad8 (2013) reported that 32.3% of mothers of children with autism had depression and 41.5% had dysphoria. Data by a recent ‘Interactive Autism Network’9 (IAN, 2008) survey showed that 44% of mothers who responded to that survey had been diagnosed with either depression or bipolar disorder at some point in their lives by psychiatrist. Another study10 reported that 73% of mothers of disabled children had depression and approximately 21% of them suffered from severe depression. More than one third (40%) of mothers rated their quality of life as poor. In consistent with this finding, a previous study11 (2012) reported that the mothers of children with pervasive developmental disorders had lower quality of life scores than those of the mothers having normative children especially in mental domains.
A. Jose et al. / Current Medicine Research and Practice 7 (2017) 11–15
In contradictory to the present study findings, another study finding12 showed that overall quality of life was positive in 70% of mothers of children with autism. The reason for this divergence could be the difference in sample size in the two studies; sample size was 20 in the other study whereas 125 in the present study. Nearly three fourth (73.6%) of the mothers were satisfied about their physical health and more than one fourth (26.4%) of mothers were dissatisfied with the physical health. This finding is in disagreement with a previous study5 which reported that 40% of mothers of children with autism were satisfied with their physical health. The explanation for this difference may be the variances in general health perceptions and health conditions of the mothers in the two settings. Nearly one third (30.4%) of the mothers had physical health problems. Another study13 reported that health in the mothers of children with Asperger syndrome or high-functioning autism was related to behaviour problems such as hyperactivity and conduct problems in the child. Severity of depression in the mothers was associated with the mother’s satisfaction with informal social support. This finding is consistent with a previous study.14 Mothers with physical health problems had higher levels of depression than mothers without any health problems. This data is consistent with other study findings15 where they reported that parents of children with autism without any health problem had significantly lower levels of depression, anxiety and stress. This finding is in disagreement with another study3 (2007) which reported that depression in mothers of children with disability was not associated with the health conditions of mother. The possible explanation for this difference in finding may be the higher proportion (89%) of mothers with better physical conditions in the other study as compared to the proportion of mothers (69.6%) in the present study. Severity of depression in the mothers was negatively associated with the mother’s quality of life. A previous study5 (2010) also reported that quality of life of mothers of children with autism had a negative association with depression. Severity of depression in the mothers was significantly associated with the child’s autism severity. Similar result is found in previous studies which found that child’s symptom severity mediated the maternal depression.16–19 A significant association was found between the previous mental health history of the mothers and the severity of autism in the children. This finding is consistent with the findings of several
13
Table 1 Frequency distribution of severity of autism in the children (n = 125). Severity of autism in children
Frequency (%)
Mild autism Moderate autism Severe autism
32 (25.6) 37 (29.6) 56 (44.8)
other studies20–23 which found that the parental affective disorders were associated with the risk of autism spectrum disorders in the off-springs (Tables 1–4). There was no significant association between severity of depression in the mothers and the age and gender of the child. Previous studies15,24 also reported that there was no significant association between variables such as age of the child, gender of the child or ethnicity to the psychological well-being of the mothers. There was no significant association between severity of depression in the mothers and the availability of informal social support. This finding is in contrast to other studies25,19 done in western countries in which social support was the best predictor of maternal depression, with decreased social support predicting increased psychological issues. The possible explanation for this divergence could be that in the present study 28.8% of the mothers had no social support and 12.8% of the mothers were dissatisfied with the available social support. There was no significant association between severity of depression in the mothers and presence of developmental disability in one of the sibling of child with autism spectrum disorders. This finding is in contrast to a previous study26 which reported that mothers parenting another child with a disability (in addition to the child with ASD) had higher levels of depressive symptoms and anxiety and lower family adaptability and cohesion compared with mothers who had only one child with a disability. The reason for divergence in the finding could be that in the selected setting only 4% of the mothers had multiple children with disabilities. No significant association was found between the mothers’ depression and their ages. Another study10 corroborated this finding. There was no significant association between the mothers’ depression and their spouses’ employment conditions. This finding is supported by another previous study.27
Table 2 Association between select variables and levels of depression in the subjects (n = 125). Selected variables of the subjects
Frequency (%)
Levels of depression in the subjects No
Mild
Moderate
Severe
p-Value
A family member is attending the therapy session with the mother
No Yes
14 (11.2) 111 (88.8)
5 24
2 31
6 36
1 20
0.422
Mother is having social support
Yes No
89 (71.2) 36 (28.8)
24 5
25 8
29 13
15 6
0.497
Mother’s satisfaction with the social support
No social support Somewhat dissatisfied Somewhat satisfied Very satisfied
36 16 46 27
(28.8) (12.8) (36.8) (21.6)
5 – 3 21
9 2 20 2
15 7 17 3
7 7 6 1
0.001*
Mother’s feeling about her physical health
Somewhat dissatisfied Somewhat satisfied Very satisfied
33 (26.4) 64 (51.2) 28 (22.4)
1 3 25
3 27 3
13 29 –
16 5 –
0.001*
Mother’s self-rating of her quality of life
Poor Good Very good
50 (40.0) 48 (38.4) 27 (21.6)
– 2 27
– 31 –
27 15 –
21 – –
0.001*
Test used: Chi square test/Fisher’s exact test. * p < 0.05.
A. Jose et al. / Current Medicine Research and Practice 7 (2017) 11–15
14
Table 3 Association between history of physical and mental health problems and levels of depression in the subjects (n = 125). Physical and mental health history of the subjects
Frequency (%)
Levels of depression in the subjects
p-Value
No
Mild
Moderate
Severe
Any of the relatives had psychological disorder
No Yes
104 (83.2) 21 (16.8)
25 4
9 4
35 7
15 6
0.236
Mother had physical health problem
No Yes
87 (69.6) 38 (30.4)
28 1
25 8
28 14
8 13
0.001*
Mother had been diagnosed with a mental illness
No Yes
119 (95.2) 6 (4.8)
29 –
13 –
42 –
15 6
0.001*
Mother had consulted a mental health professional
No Yes
119 (95.2) 6 (4.8)
29 –
13 –
42 –
15 6
0.001*
Mother had taken a therapy for psychological problem
No Yes
119 (95.2) 6 (4.8)
29 –
13 –
42 –
15 6
0.001*
Mother had taken medications for psychological problem
No Yes
120 (96) 5 (4)
29 –
13 –
42 –
16 5
0.001*
Mother had desperate thoughts such as wishing for death
No Yes
102 (81.6) 23 (18.4)
29 –
33 –
39 3
1 20
0.001*
Mother had used substances, alcohol or drugs without any prescription
No Yes
124 (99.2) 1 (0.8)
29 –
33 –
42 –
20 1
0.172
Test used: Chi square test/Fisher’s exact test. * p < 0.05.
Table 4 Association between severity of autism in the child and levels of depression in the subjects (n = 125). Severity of autism in the child
Mild autism Moderate autism Severe autism
Frequency (%)
32 (25.6) 37 (29.6) 56 (44.8)
Levels of depression in the subjects
p-Value
No
Mild
Moderate
Severe
26 3 –
6 26 1
– 8 34
– – 21
0.001*
Test used: Chi square test/Fisher’s exact test. * p < 0.05.
There was no significant association between depression scores of the mothers and education level of the mothers and their spouses and financial status of the families. This finding is in contrast to a previous study10 which reported that mothers with insufficient income and lower education levels were found to be at risk of depression. The reason for this difference in the finding could be that in the selected setting majority (77%) of the mothers belonged to middle/upper class families and only 23% of the mothers had a monthly family income of rupees less than 20,000. Also, in the present study 74.4% of the mothers and 83.2% of their spouses had higher education. 5. Conclusion A high overall impact is found on mothers of children having autism spectrum disorders. Most of the mothers had mild to moderate levels of depression. More than one third of the mothers had poor quality of life. Levels of depression in mothers were associated with the child’s symptom severity, physical health of mother and mother’s satisfaction with the informal social support. Previous mental health history of the mothers was associated with their levels of depression. Mothers of children with autism spectrum disorders need to be screened for the presence of depressive symptoms and need to be given social support, psycho-education and appropriate referral so that correct treatment can be started at the earliest, thus the mothers would be able to manage their life situations in a better way and would cope in a better way with the behavioural and social impairments of their child.
Recommendations Similar studies in different geographical areas and with larger sample size and different demographic characteristics to generalize the findings. Multicentered longitudinal studies to see the pattern of depression and other emotional problems of mothers over a period of time. Comparative studies to assess the emotional impact on mothers of children with different developmental disabilities. Qualitative studies to assess the magnitude and impact of maternal emotional problems on family functioning and child rearing. Interventional studies can be done to see the effectiveness of maternal counselling in reducing the emotional impact and promoting better adjustment. Conflicts of interest The authors have none to declare. References 1. Elsabbagh M, Divan G, Koh Y-J, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012;5:160–179. 2. Barua M, Daley TC. Autistic Spectrum Disorders: A Guide for Paediatricians in India. New Delhi: Publications Division of the National Centre for Autism, Action for Autism; 2008. Available from: http://www.autismindia.org/AFA%20Paediatrician% 20booklet.pdf 3. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators, Centers for Disease Control and Prevention. Prevalence
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of autism spectrum disorders – Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summ. 2012;61:1–19. Yirmiya N, Shaked M. Psychiatric disorders in parents of children with autism: a meta-analysis. J Child Psychol Psychiatry. 2005;46:69–83. Bolton PF, Pickles A, Murphy M, Rutter M. Autism, affective and other psychiatric disorders: patterns of familial aggregation. Psychol Med. 1998;28:385–395. Rush AJ, Giles DE, Schlesser MA, Fulton CL, Weissenburger J, Burns C. The Inventory for Depressive Symptomatology (IDS): preliminary findings. Psychiatry Res. 1986;18:65–87. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-IV. 4th ed. Washington, DC: American Psychiatric Association; 1994. 866 pp. Available from: http://www.psychiatryonline.com/DSMPDF/dsm-iv.pdf [cited 08.03.10] Fido A, Saad S. Psychological effects of parenting children with autism prospective study in Kuwait. J Psychiatry. 2013;3:5–10. IAN Report: Parent Report of Depression available from http://www.autismspeaks. org/news/news-item/ian-report-parent-report-depression; Accessed 02.05.16. Motamedi SH, Seyednour R, Noorikhajavi M, Afghah S. A study in depression levels among mothers of disabled children. J Iran Rehab. 2007;5:5–6. Yamada A, Kato M, Suzuki M, et al. Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry. 2012;12:119. Fa´vero-Nunes MA, dos Santos MA. Depression and quality of life in mothers of children with pervasive developmental disorders. Rev Lat Am Enfermagem. 2010;18:33–40. Allik H, Larsson J-O, Smedje H. Health-related quality of life in parents of schoolage children with Asperger Syndrome or High-Functioning Autism. Health Qual Life Outcomes. 2006;4:1. Olsson MB, Hwang CP. Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res. 2001;45:535–543. Sharpley CF, Bitsika V, Efremidis B. Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. J Intellect Dev Disabil. 1997;22:19–28.
15
16. Carter AS, Martı´nez-Pedraza FdL, Gray SAO. Stability and individual change in depressive symptoms among mothers raising young children with ASD: maternal and child correlates. J Clin Psychol. 2009;65:1270–1280. 17. Bailey Jr DB, Golden RN, Roberts J, Ford A. Maternal depression and developmental disability: research critique. Ment Retard Dev Disabil Res Rev. 2007;13:321–329. 18. Koegel RL, Schreibman L, Loos LM, et al. Consistent stress profiles in mothers of children with autism. J Autism Dev Disord. 1992;22:205–216. 19. Benson PR, Karlof KL. Anger, stress proliferation, and depressed mood among parents of children with ASD: a longitudinal replication. J Autism Dev Disord. 2009;39:350–362. 20. Jokiranta E, Brown AS, Heinimaa M, Cheslack-Postava K, Suominen A, Sourander A. Parental psychiatric disorders and autism spectrum disorders. Psychiatry Res. 2013;207:203–211. 21. Rai D, Lee BK, Dalman C, Golding J, Lewis G, Magnusson C. Parental depression, maternal antidepressant use during pregnancy, and risk of autism spectrum disorders: population based case-control study. BMJ. 2013;346:f2059. 22. Croen LA, Grether JK, Yoshida CK, Odouli R, Hendrick V. Antidepressant use during pregnancy and childhood autism spectrum disorders. Arch Gen Psychiatry. 2011;68:1104–1112. 23. Daniels JL, Forssen U, Hultman CM, et al. Parental psychiatric disorders associated with autism spectrum disorders in the offspring. Pediatrics. 2008;121:e1357–e1362. 24. Bromley J, Hare DJ, Davison K, Emerson E. Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services. Autism. 2004;8:409–423. 25. Gill MJ, Harris SL. Hardiness and social support as predictors of psychological discomfort in mothers of children with autism. J Autism Dev Disord. 1991;21: 407–416. 26. Orsmond GI, Lin L-Y, Seltzer MM. Mothers of adolescents and adults with autism: parenting multiple children with disabilities. Intellect Dev Disabil. 2007;45:257–270. 27. Carter AS, Martı´nez-Pedraza FdL, Gray SA. Stability and individual change in depressive symptoms among mothers raising young children with ASD: maternal and child correlates. J Clin Psychol. 2009;65:1270–1280.
Contents lists available at ScienceDirect
Current Medicine Research and Practice journal homepage: www.elsevier.com/locate/cmrp
Original article
Prevalence of depression in mothers of children having ASD Anju Jose a, Sandhya Gupta b,*, Sheffali Gulati c, Savita Sapra c a
Nursing Services, AIIMS Hospital, New Delhi, India College of Nursing, AIIMS, New Delhi, India c Department of Pediatrics, AIIMS, New Delhi, India b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 11 June 2016 Accepted 13 December 2016 Available online 13 January 2017
Autism spectrum disorder (ASD) is a pervasive developmental disorder that impairs a child’s communication and social interaction and causes the development of stereotypic or repetitive behaviours or interests. Aim of the study: To find out the prevalence of depression in mothers of children with ASD. Materials and methods: A descriptive, cross-sectional study design was chosen for the study. Convenience sampling method was used to enrol 125 mothers of children with ASD from Autism clinic, Department of Paediatrics, AIIMS, New Delhi from June to November 2013. Data regarding sociodemographic details, health history profile and selected variables of the mothers was collected using a structured questionnaire. Inventory of depressive symptomatology (IDS-SR30), a standardised, structured inventory which contained 30 items was used to assess the depressive symptoms in the mothers. Results: Over three-quarters (76.8%) of the mothers reported depression. Levels of depression in the mothers were significantly associated with their physical health and quality of life. Mothers of children with severe autism (44.8%) had higher levels of depression than those with mild (25.6%) and moderate (29.6%) degrees of autism. Conclusion: Mothers of children with ASD need to be screened for the presence of clinical depression and given social support, psycho-education and appropriate referral so that correct treatment can be started at the earliest; thus the mothers would be able to manage their life situations in a better way and to cope with the behavioural and social impairments of their child. ß 2016 Sir Ganga Ram Hospital. Published by Elsevier, a division of RELX India, Pvt. Ltd. All rights reserved.
Keywords: Autism spectrum disorders Depression Mothers Children
1. Introduction Autism spectrum disorder (ASD) is a complex developmental disability; it is a neurological based developmental disorder that impairs a child’s communication and social interaction and causes the development of stereotypic or repetitive behaviours or interests. It is a prevalent disorder with tremendous impact on individuals, families and society. It occurs ubiquitously, regardless of races, nationalities, cultures and social classes. The global prevalence of autism spectrum disorders is 62 per 10,000 people.1 Prevalence of autism spectrum disorders in India is 1 in 250 individuals.2 Recent figures released by the CDC show that autism spectrum disorders now affect 1 in 88 children (Fig. 1).3
* Corresponding author at: College of Nursing, AIIMS, Ansari Nagar, New Delhi, India. E-mail address: [email protected] (S. Gupta).
Child with an autism spectrum disorder may be a big stressor on the family. It is a disorder that inherently changes the parent–child relationship: communication is impeded or even impossible; intimacy can be a challenge and a child’s self-injurious behaviours may make a parent feel frightened and helpless. Parenting a child with a developmental disability may be an exhausting task especially for mothers as they are more involved with care giving. Mothers of children with autism are more likely to suffer from depression than mothers of children with intellectual disabilities without autism and mothers with typically developing children.4,5 Depressed mothers have poor parenting skills and negative interactions with their children. Maternal depression is a significant risk factor for child abuse and neglect. Depression of mother is significantly associated with more hostile, negative parenting and it leads to poorer physical health and well-being of the child. It has been observed that clinicians and psychologists are very concerned about the child with ASD; but seldom is the focus on the impact on the parents especially the mother. There is a gap in this area of
http://dx.doi.org/10.1016/j.cmrp.2016.12.003 2352-0817/ß 2016 Sir Ganga Ram Hospital. Published by Elsevier, a division of RELX India, Pvt. Ltd. All rights reserved.
[(Fig._1)TD$IG]
A. Jose et al. / Current Medicine Research and Practice 7 (2017) 11–15
12 40
n = 125 35
33.6%
30 26.4%
25
No
23.2%
Mild
20
Moderate 14.4%
15
Severe Very severe
10 5
2.4%
0 Levels of depression
Fig. 1. Bar graph showing the percentage distribution of levels of depression in mothers of children with autism spectrum disorders (n = 125).
research in Indian population. This research is planned to get the information on prevalence of depression in the mothers of children with ASD and to find out the association between demographic and selected variables of child and mother with the levels of depression in mothers of children with ASD. 2. Method A cross-sectional study design was chosen for the study. Convenience sampling method was used to enrol 125 subjects for this study from Autism clinic, Department of Paediatrics, All India Institute of Medical Sciences, New Delhi from June to November 2013. During this period of six months, 140 mothers of children with autism attended the clinic. Out of those 140 mothers, 125 were enrolled in the study, based on the inclusion criteria of mothers of those children diagnosed with autism spectrum disorders attending Autism clinic Dept. of Pediatrics, AIIMS and mothers who are willing to participate in the study. Approval to conduct the study was obtained from the ethics committee, AIIMS. Two tools were used for data collection a data sheet for socio-demographic details of the subjects, their select variables and subjects’ health history profile. This structured questionnaire had two sections. Section-1 was designed to elicit the socio-demographic details of the subjects and some select variables specific for the study. The section-2 consisted of eight items to explore the history of mental health problems or treatment in the subjects and to explore the family history of mental illness. Five minutes were taken to collect the data on Structured Demographic profile sheet. Tool no. 2, ‘Inventory of depressive symptomatology (IDS-SR30)’ (Rush et al., 1996)6 was a standardised and structured inventory and contained 30 items. The IDS assessed all the criterion symptom domains designated by the American Psychiatry Association Diagnostic and Statistical Manual of Mental Disorders – 4th edition (DSM-IV)7 to diagnose a major depressive episode. These assessments can be used to screen for depression, although they have been used predominantly as measures of symptom severity. The seven day period prior to assessment is the usual time frame for assessing symptom severity. It took approximately 10–15 min to complete. The minimum score of this tool was zero and the maximum score was 84. Based on ‘‘Inventory of Depressive Symptoms’’ (SR30) score the severity of depression was measured as: 0–13: no depression, 14–25: mild depression, 26–38: moderate depression, 39–48: severe depression and 49–84: very severe depression.
Pilot study was conducted in Autism clinic, Dept. of Paediatrics AIIMS on 10 subjects for assessing the feasibility of the main study, prior to the actual data collection and was found feasible. The subjects those fulfilling the inclusion criteria were explained the purpose of the study. An informed written consent form was signed by the subjects. Subjects filled subject data sheet followed by IDS-SR30 and subjects were informed about the prevalence and severity of depression. Subjects with severe depressive symptoms were given remedial counselling and offered treatment facilities in Psychiatry out-patient department of AIIMS. All subjects were provided with a public education material on depression as well. Descriptive statistics i.e. mean, percentage, frequency, range and standard deviation and inferential statistics i.e. Chi square/Fisher exact test were used for analysis of data. Level of significance was set as p < 0.05. Data was analysed by using statistical package SPSS version 16. 3. Results The mean age of the children was 4.84 years (SD 2.168). More than half (55.2%) of the children were pre-schoolers and belonged to 3–6 years of age. Most (77.6%) of the children were male. The mean age of the mothers was 31.33 years (SD 4.610). More than one third (38.4%) of the mothers were graduates. Most of the mothers (89.6%) were house wives. Nearly half of the spouses (46.4%) were graduates and were employed in private sector. Most (81.6%) of the families had monthly income more than Rupees 20,000/-. Five (4%) children with autism had one sibling with developmental disability. More than one tenth (12.8%) of the mothers had a relative having at least one child with developmental disability. Most (88.8%) of the mothers had another family member accompanying for attending the therapy session at the clinic and majority (72.8%) were spouses. Majority (71.2%) of the mothers were having informal social support. Nearly three fifth (58.4%) of the mothers were satisfied with the available informal social support. Nearly three fourth (73.6%) of the mothers were satisfied about their physical health. More than one third (40%) of the mothers rated their quality of life as poor. Nearly one third (30.4%) of the mothers had physical health problems and 21.6% of the mothers reported migraine after the diagnosis of autism in the child. Six (4.8%) mothers had been diagnosed with a mental illness prior to birth of child with autism and 4% of the mothers had taken antidepressants. Nearly one fifth (18.4%) of the mothers had desperate thoughts such as wishing for death and 14.4% of mothers had such thoughts after the diagnosis of autism in the child. 4. Discussion More than three-quarters (76.8%) of the mothers reported depression. Most (60%) of them had mild and moderate depression. One seventh (14.4%) of mothers had severe depression and 2.4% had very severe depression. Similar results were found in previous studies. Fido and Saad8 (2013) reported that 32.3% of mothers of children with autism had depression and 41.5% had dysphoria. Data by a recent ‘Interactive Autism Network’9 (IAN, 2008) survey showed that 44% of mothers who responded to that survey had been diagnosed with either depression or bipolar disorder at some point in their lives by psychiatrist. Another study10 reported that 73% of mothers of disabled children had depression and approximately 21% of them suffered from severe depression. More than one third (40%) of mothers rated their quality of life as poor. In consistent with this finding, a previous study11 (2012) reported that the mothers of children with pervasive developmental disorders had lower quality of life scores than those of the mothers having normative children especially in mental domains.
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In contradictory to the present study findings, another study finding12 showed that overall quality of life was positive in 70% of mothers of children with autism. The reason for this divergence could be the difference in sample size in the two studies; sample size was 20 in the other study whereas 125 in the present study. Nearly three fourth (73.6%) of the mothers were satisfied about their physical health and more than one fourth (26.4%) of mothers were dissatisfied with the physical health. This finding is in disagreement with a previous study5 which reported that 40% of mothers of children with autism were satisfied with their physical health. The explanation for this difference may be the variances in general health perceptions and health conditions of the mothers in the two settings. Nearly one third (30.4%) of the mothers had physical health problems. Another study13 reported that health in the mothers of children with Asperger syndrome or high-functioning autism was related to behaviour problems such as hyperactivity and conduct problems in the child. Severity of depression in the mothers was associated with the mother’s satisfaction with informal social support. This finding is consistent with a previous study.14 Mothers with physical health problems had higher levels of depression than mothers without any health problems. This data is consistent with other study findings15 where they reported that parents of children with autism without any health problem had significantly lower levels of depression, anxiety and stress. This finding is in disagreement with another study3 (2007) which reported that depression in mothers of children with disability was not associated with the health conditions of mother. The possible explanation for this difference in finding may be the higher proportion (89%) of mothers with better physical conditions in the other study as compared to the proportion of mothers (69.6%) in the present study. Severity of depression in the mothers was negatively associated with the mother’s quality of life. A previous study5 (2010) also reported that quality of life of mothers of children with autism had a negative association with depression. Severity of depression in the mothers was significantly associated with the child’s autism severity. Similar result is found in previous studies which found that child’s symptom severity mediated the maternal depression.16–19 A significant association was found between the previous mental health history of the mothers and the severity of autism in the children. This finding is consistent with the findings of several
13
Table 1 Frequency distribution of severity of autism in the children (n = 125). Severity of autism in children
Frequency (%)
Mild autism Moderate autism Severe autism
32 (25.6) 37 (29.6) 56 (44.8)
other studies20–23 which found that the parental affective disorders were associated with the risk of autism spectrum disorders in the off-springs (Tables 1–4). There was no significant association between severity of depression in the mothers and the age and gender of the child. Previous studies15,24 also reported that there was no significant association between variables such as age of the child, gender of the child or ethnicity to the psychological well-being of the mothers. There was no significant association between severity of depression in the mothers and the availability of informal social support. This finding is in contrast to other studies25,19 done in western countries in which social support was the best predictor of maternal depression, with decreased social support predicting increased psychological issues. The possible explanation for this divergence could be that in the present study 28.8% of the mothers had no social support and 12.8% of the mothers were dissatisfied with the available social support. There was no significant association between severity of depression in the mothers and presence of developmental disability in one of the sibling of child with autism spectrum disorders. This finding is in contrast to a previous study26 which reported that mothers parenting another child with a disability (in addition to the child with ASD) had higher levels of depressive symptoms and anxiety and lower family adaptability and cohesion compared with mothers who had only one child with a disability. The reason for divergence in the finding could be that in the selected setting only 4% of the mothers had multiple children with disabilities. No significant association was found between the mothers’ depression and their ages. Another study10 corroborated this finding. There was no significant association between the mothers’ depression and their spouses’ employment conditions. This finding is supported by another previous study.27
Table 2 Association between select variables and levels of depression in the subjects (n = 125). Selected variables of the subjects
Frequency (%)
Levels of depression in the subjects No
Mild
Moderate
Severe
p-Value
A family member is attending the therapy session with the mother
No Yes
14 (11.2) 111 (88.8)
5 24
2 31
6 36
1 20
0.422
Mother is having social support
Yes No
89 (71.2) 36 (28.8)
24 5
25 8
29 13
15 6
0.497
Mother’s satisfaction with the social support
No social support Somewhat dissatisfied Somewhat satisfied Very satisfied
36 16 46 27
(28.8) (12.8) (36.8) (21.6)
5 – 3 21
9 2 20 2
15 7 17 3
7 7 6 1
0.001*
Mother’s feeling about her physical health
Somewhat dissatisfied Somewhat satisfied Very satisfied
33 (26.4) 64 (51.2) 28 (22.4)
1 3 25
3 27 3
13 29 –
16 5 –
0.001*
Mother’s self-rating of her quality of life
Poor Good Very good
50 (40.0) 48 (38.4) 27 (21.6)
– 2 27
– 31 –
27 15 –
21 – –
0.001*
Test used: Chi square test/Fisher’s exact test. * p < 0.05.
A. Jose et al. / Current Medicine Research and Practice 7 (2017) 11–15
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Table 3 Association between history of physical and mental health problems and levels of depression in the subjects (n = 125). Physical and mental health history of the subjects
Frequency (%)
Levels of depression in the subjects
p-Value
No
Mild
Moderate
Severe
Any of the relatives had psychological disorder
No Yes
104 (83.2) 21 (16.8)
25 4
9 4
35 7
15 6
0.236
Mother had physical health problem
No Yes
87 (69.6) 38 (30.4)
28 1
25 8
28 14
8 13
0.001*
Mother had been diagnosed with a mental illness
No Yes
119 (95.2) 6 (4.8)
29 –
13 –
42 –
15 6
0.001*
Mother had consulted a mental health professional
No Yes
119 (95.2) 6 (4.8)
29 –
13 –
42 –
15 6
0.001*
Mother had taken a therapy for psychological problem
No Yes
119 (95.2) 6 (4.8)
29 –
13 –
42 –
15 6
0.001*
Mother had taken medications for psychological problem
No Yes
120 (96) 5 (4)
29 –
13 –
42 –
16 5
0.001*
Mother had desperate thoughts such as wishing for death
No Yes
102 (81.6) 23 (18.4)
29 –
33 –
39 3
1 20
0.001*
Mother had used substances, alcohol or drugs without any prescription
No Yes
124 (99.2) 1 (0.8)
29 –
33 –
42 –
20 1
0.172
Test used: Chi square test/Fisher’s exact test. * p < 0.05.
Table 4 Association between severity of autism in the child and levels of depression in the subjects (n = 125). Severity of autism in the child
Mild autism Moderate autism Severe autism
Frequency (%)
32 (25.6) 37 (29.6) 56 (44.8)
Levels of depression in the subjects
p-Value
No
Mild
Moderate
Severe
26 3 –
6 26 1
– 8 34
– – 21
0.001*
Test used: Chi square test/Fisher’s exact test. * p < 0.05.
There was no significant association between depression scores of the mothers and education level of the mothers and their spouses and financial status of the families. This finding is in contrast to a previous study10 which reported that mothers with insufficient income and lower education levels were found to be at risk of depression. The reason for this difference in the finding could be that in the selected setting majority (77%) of the mothers belonged to middle/upper class families and only 23% of the mothers had a monthly family income of rupees less than 20,000. Also, in the present study 74.4% of the mothers and 83.2% of their spouses had higher education. 5. Conclusion A high overall impact is found on mothers of children having autism spectrum disorders. Most of the mothers had mild to moderate levels of depression. More than one third of the mothers had poor quality of life. Levels of depression in mothers were associated with the child’s symptom severity, physical health of mother and mother’s satisfaction with the informal social support. Previous mental health history of the mothers was associated with their levels of depression. Mothers of children with autism spectrum disorders need to be screened for the presence of depressive symptoms and need to be given social support, psycho-education and appropriate referral so that correct treatment can be started at the earliest, thus the mothers would be able to manage their life situations in a better way and would cope in a better way with the behavioural and social impairments of their child.
Recommendations Similar studies in different geographical areas and with larger sample size and different demographic characteristics to generalize the findings. Multicentered longitudinal studies to see the pattern of depression and other emotional problems of mothers over a period of time. Comparative studies to assess the emotional impact on mothers of children with different developmental disabilities. Qualitative studies to assess the magnitude and impact of maternal emotional problems on family functioning and child rearing. Interventional studies can be done to see the effectiveness of maternal counselling in reducing the emotional impact and promoting better adjustment. Conflicts of interest The authors have none to declare. References 1. Elsabbagh M, Divan G, Koh Y-J, et al. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012;5:160–179. 2. Barua M, Daley TC. Autistic Spectrum Disorders: A Guide for Paediatricians in India. New Delhi: Publications Division of the National Centre for Autism, Action for Autism; 2008. Available from: http://www.autismindia.org/AFA%20Paediatrician% 20booklet.pdf 3. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators, Centers for Disease Control and Prevention. Prevalence
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