Anxiety, depression, and quality of life in mothers of children with intellectual disability

Background: Intellectual disability (ID) in children can trigger a range of psychological responses in parents. The present study was an attempt to investigate psychological conditions of mothers of children with ID and to determine whether these problems were more prominent in mothers of children with ID than mothers with healthy children. Aim and objectives: Were to investigate psychological impact (i.e. anxiety, depression, and quality of life [QOL]) on mothers of children with ID. Materials and methods: Comprised of two groups of subjects, i.e. mothers of sixty children with ID and mothers of sixty healthy children. The study was conducted at the Outpatient Department of Lokopriya Gopinath Bordoloi Regional Institute of Mental Health (LGBRIMH), Tezpur, Assam. Both groups were assessed with Beck Depression Inventory (BDI-II); State Trait Anxiety Inventory (STAI), and World Health Organization QOL-BREF (WHOQOL-BREF). Data was analysed by descriptive statistics, correlation, and t test. Result: The results of the study conclusively found out that the mothers of children with ID were having higher anxiety and depression than mothers with healthy children. The anxiety and depression had negative correlation with QOL of mothers of children with ID. Conclusion: This study shows that anxiety and depression affected QOL in mothers of children with ID.


Introduction
Intellectual disability (ID) is a condition, not a disease.ID is characterised by signifi cant limitation in intellectual functioning and in adaptive behaviour and a reduced ability to understand new or complex information and to learn and apply every social and practical skills and stipulates that the onset of mental retardation should be before the age of 18 years.[1] A mother expects her child to be born healthy but diagnosis of a child as disabled during infancy or in later stages takes a heavy toll on her happiness and well-being.Such a diagnosis can precipitate a range of psychological responses in a mother thereby constituting a crisis for mothers and demanding extraordinary psychological adjustment.Th e psychological problems include feeling of guilt, feeling responsible for producing a mentally retarded child.Th e emotional response of denial, shock, anger, grief, guilt, embarrassment, depression, withdrawal, ambivalence, disillusionment, and fear are seen in parents and family members of an intellectually disabled child.[2] A research was conducted by Singhi et al. [3] in India on psychosocial problems faced by parent and family members, and they found that parents of disabled children face severe economic problems, distractions in family activity schedule, problems in social interaction, and marital disadjustment, and also higher neurotic condition.Hedove et al. [4] suggested that the presence of a family member with Down's syndrome might have a negative impact on maternal quality of life (QOL).Noor [5] has noted that parents of children with ID face problems like absenteeism in workplace, inattentiveness in job activity, disturbances in mental and physical health, marital dissatisfaction, and poor overall well-being.Increased prevalence of depression and anxiety were reported in various caregiver groups.[6,7] Th e present study attempts to examine the level of anxiety and depression, and their relationship with QOL in mothers with intellectually disabled children.Th is study also tries to establish whether psychological problems are more prominent in the mothers with intellectually disabled children than mothers with healthy children.

Materials and Methods
Th e research design employed was descriptive, crosssectional, and comparative study.

Sample
Participants were sixty mothers with children of moderate to severe level of ID as per tenth revision of the International Statistical Classifi cation of Diseases and Related Health Problems (ICD-10) criteria [8] (Group A) and sixty mothers with healthy children (Group B).Mothers staying with the children since their birth were selected using purposive sampling technique from the outpatient department (OPD) of Lokopriya Lopinath Bordoloi Regional Institute of Mental Health (LGBRIMH), Tezpur, Assam.For the control group B, mothers staying with their children since their birth were selected from Tezpur Municipal area.Th is group was matched for age, educational qualifi cation, duration of stay with child, family type, nil past history of psychiatric illness, and nil physical disability.Mothers with previous psychiatric history, more than one child with any form of disability, and mothers of children aged more than 18 years were excluded.

Tools
All the respondents of both the groups was interviewed and assessed separately.Beck Depression Inventory (BDI-II) [9] was administered to determine the level of depression, State Trait Anxiety Inventory (STAI) [10] to assess the anxiety, and World Health Organization QOL-BREF (WHOQOL-BREF) for assessment of QOL.[11]

Statistical analysis
Data was coded and entered into a master chart.Data was analysed with the help of SPSS 18. Frequency table, percentages, means and standard deviation (SD), chi-square test, correlation, and t test were used.

Result and Discussion
No signifi cant diff erence in socio-demographic variables of age, educational status, religion, family type, duration of stay with the child between both the groups.But there was diff erences found in occupation (p<0.05),socioeconomic status (p<0.05), and place of residence (p<0.05) between mothers of children with ID and mothers with healthy children (Table 1).20).Th e diff erence of TAI score was t=13.85,p<0.001, indicating signifi cant diff erence between both the groups.With respect to the BDI-II score, the result suggests more depression in Group A (21.88±6.12)with comparison to Group B (6.7±5.26).Further, result support that there was signifi cant diff erence (t value=14.56,p<0.001) between both the groups.Th e statistical fi ndings of SAI, TAI, and BDI scores indicate that mothers of children with ID had higher anxiety and depression as compared to mothers with healthy children.
Results of this study are similar to the fi ndings of Bumin et al. [12] Th ey found that mean score for the study sample on BDI was 14.22 (SD=13.03),SAI was 41.95 (SD=6.55),and on TAI was 47.27 (SD = 7.94), indicating mild to moderate level of depression and higher anxiety in the mothers.Zigmond and Snaith [13] conducted a study which shows that parents caring for intellectually disabled children had much higher levels of depressive symptomatology than parents of typically developed children, F(1, 59)=41.64,p<0.001,Ƞ 2 =0.414.Th ey also had much higher anxiety scores, F(1, 59)=43.12,p<0.001,Ƞ 2 =0.422.
In respect to QOL on physical, psychological, social relationship, and environment domains, the fi ndings of t test indicate signifi cant diff erence between both groups.All the QOL domains in mothers of children with ID had lower QOL than mothers with healthy children (Table 2).
Many studies show that parents of children with Down's syndrome spent more time in child care, and they have less recreational time and social activities in comparison to parents without a disorder.[14][15][16] Th ey conducted study on health-related QOL in parents of children with Down's syndrome using the WHOQOL-BREF and found that parents scored lower on environmental domain, which encompasses opportunities for recreation.Lin et al. [17] also examined the diff erences between caregivers of children and adolescents with ID than the general population, and their results show the mean scores in each domain of WHOQOL-BREF as followings: physical domain was 13.71±2.35,psychological domain was 12.21±2.55,social relationship domain was 12.99±2.43,and environment domain was 12.32±2.38.Th ese mean scores were lower than the general population.
Our study found that mothers of children with ID had signifi cantly decreased QOL as compared to the mothers with healthy children.Mothers of children with ID decreased the QOL in all the four domains of physical, psychological, social relationship, and environment.More specifi cally, mothers of children with ID displayed lower physical health and psychological well-being.
In mothers of children with ID, 50% had moderate level of depression followed by 31.7% having mild depression, 13.3% had severe depression, and only fi ve per cent mothers had minimal level of depression.But in case of mothers of healthy children, 93.9% had minimal depression and only 6.7% had moderate level of depression.Similar kind of fi ndings confi rmed that mothers with disabled children have depression in general.[18] It was found that 73% of the mothers in the study had various degrees of depression; 36% of them suff ering from mild depression and 21% from severe depression.Gallagher et al. [19] reported parents caring for intellectually disabled children reported higher level of depression symptoms than parents of typically developing children.Th e statistics show that F(1, 59)=41.64,p<0.001,Ƞ 2 =0.414.Bitsika and Sharpley [20] found that nearly 50% of the parents were severely anxious and about two-thirds were clinically depressed.
Th e present study also revealed that the SAI and TAI have signifi cant positive correlation with BDI-II score in mothers of children with ID (r=0.557,p<0.001 and r=0.613, p<0.001, respectively).Bumin et al. [12] also examined the association between anxiety and depression with QOL, and they found a signifi cant correlation between depression scores and trait anxiety scores.Tabassum and Mohsin [21] also hypothesised that there is positive relationship between the depression and anxiety among parents of children with disabilities.Azeem et al. [22] also reported that depression is most common diagnosis among mother of children with moderate ID and anxiety was highest among mother of children with profound ID.Th e results of this study shows a highly signifi cant positive correlation between depression and anxiety (r=0.833,p<0.01).
Bumin et al. [12] also found that mothers with disabled children have higher anxiety, depression and lower QOL.Increased depression and anxiety aff ected badly in mother's QOL.Shanbhag and Krishanmurthy [23] observed that there was a signifi cant (p<0.05)correlation between the General Health Questionnaire (GHQ) scores and QOL.Th ey assessed the association between the mental health status and QOL of the caregiver with child of cerebral palsy and ID.Th ey assessed QOL through WHOQOL-BREF and mental health status was assessed through GHQ-28 which included the subscales of somatic illness, anxiety, social dysfunction, and depression.Th ey show a signifi cant association between the GHQ scores and QOL.All the domains were negatively correlated with GHQ and the values were found to be statistically signifi cant.
Bumin et al. [12] revealed that mothers with disabled children were more anxious, hopeless, and worthless which also negatively infl uenced their physical health and overall quality of life.Zanon and Batista [24] studied 82 caregivers; they found high levels of anxiety and depression among the caregivers (49% and 31% respectively), as well as their low QOL demonstrate the need for a greater attention to the health of these people.Kazmi et al. [25] reported that mother of disabled children were having more depression and low QOL in comparison of father of disabled children.In this study, signifi cant correlation was found between depression scores and all subscales of QOL.Th ere is a signifi cant correlation between depression and social relationship in mothers (r=-0.428and p<0.01).Depending on responsibilities in daily life, mothers do not have enough time for social activities.
Another study shows that both parents of a child with Down's syndrome devoted more time for child care and spends less time in social activities.[6] Our fi ndings suggest that the depressive symptoms and the QOL domains has relationship between them.It refl ects that the depressive symptoms negatively aff ect the mother's QOL.As mentioned by Bumin et al., [12] anxiety and depression is related to negative QOL of mothers.

Conclusion
Th e condition of psychological morbidity in mothers with ID children is a matter of particular concern.Disability is not just aff ecting the children; it has a greater impact on mothers and other signifi cant persons.ID leads to signifi cant distress in caregiver.Further, mother's development of psychological morbidity (anxiety, depression) and distress negatively aff ect mother's QOL.Compared to the parents of typically developing children, parents caring for intellectually disabled children have higher anxiety and depression, and diff erent dimensions of caregiver burden; thus, precipitating anxiety and depression, and aff ecting QOL.
Th is present study refl ects some clinical characteristics of depression and anxiety in the mothers with children having ID.Results show that maximum numbers of mothers with disabled children have moderate level of depression than mothers with healthy children.Th e present study also shows that the anxiety and depression are positively correlated to each other, and both anxiety and depression are negatively associated with QOL in mothers of children with ID.Understanding the mother's emotional condition is of utmost importance for the management of a child with disability as well as improving mothers' psychological well-being.
Th e study fi ndings need to be interpreted within the limitation of having signifi cant diff erences in three sociodemographic variables, namely occupation, socioeconomic status, and place of residence between the two groups.At the same time, our study had fi ve matching criteria, i.e. age, educational qualifi cation, duration of stay with the child, family type, nil past history of psychiatry illness, and nil physical disability between both the groups.

Table 2
described the group diff erences in STAI and BDI-II, and QOL domains' scores between mothers of children with ID and mothers with healthy children.Th e fi ndings of STAI on State Anxiety Inventory (SAI) domain suggest that Group A mean score (47.55±5.30)was more than Group B (35.13±5.84)mean score.Th e diff erence of SAI score was statistically signifi cant (t=12.18,p<0.001).On Trait Anxiety Inventory (TAI) domain, mean score was high on Group A (48.23±5.67)with comparison to Group B (34.40±5.

Table 1 :
The distribution of socio-demographic profi le of both groups

Table 2 :
Group differences in SAI, TAI, BDI-II scores, and QOL domains between mothers of children with ID and mothers with healthy children SAI=State Anxiety Inventory, TAI=Trait Anxiety Inventory, BDI=Beck Depression Inventory, QOL=Quality of life, SD=Standard deviation, STAI=State Trait Anxiety Inventory, *Statistically signifi cant