Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society.(1) Cognitive, developmental, intellectual, mental, physical, sensory or a combination of factors can cause a disability. Disabilities can be present from birth or acquired throughout a person's life. According to Rights of Person with Disabilities Act, 2016 intellectual disability is a condition characterized by significant limitation both in intellectual functioning (reasoning, learning, problem-solving) and adaptive behaviour which covers a range of day to day social and practical skills.(2) Population estimates suggest a global prevalence of around 10.37 per 1,000 persons, with a substantial burden in low and middle-income countries.(3) Indian parents often take an active role in their children's education, career and future. It is a devastating blow for them to learn that their child may not follow a typical developmental trajectory. Adapting their hopes to the child's actual reality is frequently stressful. The gap between expectations and the performance of the developmentally disabled child continues to cause grief. A caregiver is someone who looks after the physical and psychological needs of a person with disability. Family caregivers, predominantly mothers, often assume primary care roles in India, facing emotional, social, and financial strain that affects health and quality of life.(4,5) Validated tools such as the Zarit Burden Interview (ZBI) are widely used to quantify caregiver burden, and the WHOQOL-BREF has demonstrated reliability and validity in Indian settings.(6) Recent Indian and international studies continue to show high burden and reduced quality of life in caregivers of children with developmental disabilities.(7-10) Negative impact on quality of life was observed with increase in the level of burden in primary caregivers of children and adolescents with disabilities compared to those without disabilities.(11) Caring for a child who has an intellectual disability can involve a significant and prolonged period of care and energy, completion of physically demanding and unpleasant tasks, and frequent disruption to family routines and activities; due to these increased care-giving demands, it seems reasonable to assume that parents of children with intellectual disability are at an increased risk for high levels of personal stress. Prevalence of depression in mothers of children with intellectual disabilities in India seems to be much greater than those reported from studies around the world.(12) When a parent feels overwhelmed by the stress associated with caring for their child with a disability, there can be negative implications for the child, the parent and the family as a whole. This life-long path of parents negotiating medical, developmental and educational interventions while also caring for their children has an impact on their quality of life. The problems associated with rearing children with intellectual disability can be multifold, and problems such as disturbance of routine, family leisure, family health, work absenteeism, and physical and emotional stress not only result in increased economic costs, but also have a negative impact on the quality of life of the caregiver.(13) Parents often have needs during this time that are not addressed by professionals because of the excessive focus on the child during evaluation. Parents’ well-being could positively influence caregiving and thus decrease the burden of care. Against this backdrop, we examined caregiver burden and quality of life among primary caregivers of children with intellectual disability in Goa, India; and the outcomes of this study would contribute and serve as a guide for developing realistic appropriate response strategies.

Aim: To study the caregiver burden and quality of life associated with caregivers of children and adolescents with intellectual disabilities Objectives: • To assess the burden of care associated with primary caregivers of affected children • To assess quality of life associated with primary caregivers of affected children • To correlate the association between the caregiver burden and quality of life in primary caregivers of children with intellectual disability. Design and setting: Cross-sectional descriptive study at the Institute of Psychiatry and Human Behaviour (IPHB) in the state of Goa, India. IPHB is a tertiary care center that provides mental health services to the people of Goa and bordering areas of Karnataka and Maharashtra. Participants: 50 primary caregivers (age ≥ 18 years) of children/adolescents (5–18 years) diagnosed with Intellectual disability (ICD-10). Caregivers with psychiatric comorbidity or caring for multiple disabled children were excluded Sampling method: The sampling method adopted for the study was purposive sampling. Measures: • Semi structured sociodemographic proforma • Zarit Burden Interview (ZBI; 22 items) to measure subjective burden in caregivers • World Health Organization Quality of Life (WHOQOL-BREF) scale (physical, psychological, social, environmental domains) to assess quality of life of caregivers • Mini-International Neuropsychiatric interview (M.I.N.I plus scale) to exclude any major psychiatric illnesses in caregivers Description of assessment tools: • Zarit Burden Interview: The Zarit Burden Interview (ZBI) is a 22-item self-administered rating questionnaire that measures subjective burden and has shown high consistency and validity; higher score indicates greater burden. The items are scored on a four-point scale. It has a Cronbach's alpha co- efficiency of 0.92 indicating good internal consistency reliability. It has been validated in a variety of languages. • World Health Organization Quality of Life (WHOQOL-BREF): The WHOQOL-BREF (World Health Organization QOL-BREF) is a 26-item abbreviation of the WHOQOL-100. It was developed to provide a shorter, less time-consuming quality of life assessment and it has been shown in numerous field trials and studies around the world to be sensitive, reliable, and feasible. Items are divided into four domains: Domain 1 - Physical Domain: Focuses on daily activities, reliance on medicinal substances and medical aids, energy and fatigue, mobility, pain and discomfort, sleep and rest, and work capacity. Domain 2 - Psychological Domain: Focuses on body image and appearance, negative feelings, positive feelings, self-esteem, spirituality, religion, personal beliefs, thinking, learning, memory, and concentration. Domain 3 - Social Domain: Focuses on personal relationships, social support, and sexual activity. Domain 4 - Environmental Domain: Assesses financial resources, freedom, physical safety and security, health and social care (accessibility and quality), home environment, opportunities for acquiring new information and skills, participation in opportunities for recreation and leisure activities, physical environment (pollution, noise, traffic and climate) and transportation. On a five-point Likert scale, respondents rate the intensity, frequency, or evaluation of the selected quality of life (QOL) attributes over the previous two weeks. Two items evaluate overall QOL/Satisfaction in life and general health. • Mini-International Neuropsychiatric Interview (M.I.N.I plus): The Mini-International Neuropsychiatric Interview plus (M.I.N.I.) is a brief structured diagnostic interview for DSM-IV and ICD-10 psychiatric disorders developed collaboratively by psychiatrists and clinicians from the United States and Europe. It is intended to meet the need for a brief but accurate structured psychiatric interview for multicentre clinical trials and epidemiology studies, with a 15-minute administration time. It has high reliability and validation, as well as high sensitivity, specificity, and Kappa coefficient. It is used by mental health professionals in over 100 countries and is well accepted by clients. Inclusion criteria: • Consenting primary caregivers of children and adolescents (aged 2-18) years • Assent from children was also taken wherever possible Exclusion criteria: • Primary caregivers with any major psychiatric illness • Any serious medical illness in care givers such as terminal illness, autoimmune disorders, life threatening infectious diseases etc. Sample collection: • This cross-sectional study was carried out at the out-patient department of the child and adolescent clinic at the Institute of Psychiatry and Human Behaviour in Goa. • Diagnosis of intellectual disability was made as per the protocols followed by the institute and recorded on case files. • 50 primary caregivers of children with intellectual disability were assessed using the scales and a semi structured sociodemographic proforma. • A brief interview was carried out with the participants explaining the aims and objectives of the study before administration of the scales. Relevant information regarding the self-report scales were provided and doubts clarified.

Table 1: Socio-demographic details Study Population (Primary Caregivers) n=50 (%) Age (Years) 18-20 2 (4.0) 21-40 20 (40.0) 41-60 28 (56.0) Gender of Caregiver Male 16 (32.0) Female 34 (68.0) Religion Hindu 37 (74.0) Muslim 4 (8.0) Christian 9 (18.0) Education Professional 11 (22.0) Graduate 4 (8.0) Intermediate/Diploma 13 (26.0) High School 13 (26.0) Middle School 4 (8.0) Primary 4 (8.0) Not Formally Educated 1 (2.0) Civil Status Single 2 (4.0) Married 42 (84.0) Divorced 0 Widow 3 (6.0) Separated 3 (6.0) Occupation Professional 7 (14.0) Semi-professional 0 Clerical/shop/farm 1 (2.0) Skilled worker 10 (20.0) Semi-skilled worker 4 (8.0) Unskilled worker 6 (12.0) Unemployed 22 (44.0) Socio-economic status Upper 2 (4.0) Upper middle 16 (32.0) Lower middle 19 (38.0) Upper lower 8 (16.0) Lower 5 (10.0) Type of Family Nuclear 30 (60.0) Joint 20 (40.0) Residence Rural 22 (44.0) Urban 28 (56.0) Gender of Child Male 31 (62.0) Female 19 (38.0) Relationship with the Child Mother 34 (68) Father 14 (28) Guardian 1 (2.0) Others 1 (2.0) Severity of Intellectual Disability Mild 31 (62.0) Moderate 16 (32.0) Severe 3 (6.0) Schooling Normal 0 Special 42 (84.0) Not schooling 8 (16.0) Interpersonal Stressor Present 31 (62.0) Absent 19 (38.0) Financial Stressor Present 37 (74.0) Absent 13 (26.0) Community Support Yes 23 (46.0) No 27 (54.0) Awareness Regarding Disability Benefits Yes 39 (78.0) No 11 (22.0) Availing Disability Benefits Yes 22 (44.0) No 28 (56.0) Table 2: Burden of care of primary caregivers of affected children and adolescents as per Zarit Burden Interview n=50 (%) Little or no burden 3 (6.0) Mild to moderate burden 37 (74.0) Moderate to severe burden 10 (20.0) Severe to profound burden 0 In our study the table shows the distribution of burden of care score according to the Zarit Burden Interview (ZBI). It was noted that a majority of caregivers n=37 (74%) were having mild to moderate burden; whereas n=10 (20%) caregivers had moderate to severe burden. Only three caregivers (6%) had little or no burden. While no caregiver reported severe burden. The mean Zarit Burden care score was 31.46 with SD of 10.18 Table 3 A: Overall quality of life (QOL) of primary caregivers of affected children and adolescents n=50 (%) Very Poor 1 (2.0) Poor 6 (12.0) Neither Poor nor Good 35 (70.0) Good 8 (16.0) Very Good 0 For the general questions not belonging to any domain; a majority 70% (n=35) reported that their quality of life was neither poor nor good based on the five-point Likert scale. 16% (n=8) reported their life was good, 12% (n=6) reported their life was poor, only 2% (n=1) reported their life was very poor and none reported that their life was very good. Table 3 B: Overall satisfaction in life of primary caregivers of affected children and adolescents n=50 (%) Very Dissatisfied 1 (2.0) Dissatisfied 7 (14.0) Neither Satisfied nor Dissatisfied 29 (58.0) Satisfied 13 (26.0) Very Satisfied 0 For the general questions not belonging to any domain; a majority 58% (n=29) reported that they were neither satisfied nor dissatisfied, on the five-point Likert scale. 26% (n=13) reported that they were satisfied, 14% (n=7) reported they were dissatisfied, only 2% (n=1) reported that they were very dissatisfied and none reported they were very satisfied with life. Table 3 C: Quality of life (QOL) scores of primary care givers as per domain Mean (SD) Physical QOL 52.90 (10.56) Psychological QOL 49.72 (12.21) Social QOL 72.24 (12.03) Environmental QOL 49.22 (8.24) As seen in the above table, using WHO Quality of Life-BREF, the mean QOL in the social domain was 72.24 ±12.03, physical domain was 52.90 ±10.56, in the psychological domain the mean was 49.72±12.21 and was comparatively the lowest in the environmental domain with a mean score of 49.22±8.24. Table 4: Correlation between QOL & Burden of care for primary care givers Physical Mean (SD) Psychological Mean (SD) Social Mean (SD) Environmental Mean (SD) Correlation coefficient -0.016 -0.496 -0.570 -0.340 P value 0.911 <0.001* <0.001* <0.001* The burden of care as per Zarit Burden Interview scale was inversely correlated with quality of life in all 4 domains, and this was found to be statistically significant in psychological, social and environmental domain with a p value of <0.001 in these three domains. Association of burden of care and quality of life was done with individual variables of the study group. However, only the statistically significant associations have been mentioned. Table 5: Association between burden of care and severity of intellectual disability (ID) Little or No Mild to Moderate Moderate to Severe Mild ID 1 (3.2) 26 (83.9) 4 (12.9) Moderate ID 2 (12.5) 11 (68.8) 3 (18.8) Severe ID 3 (100.0) P value 0.005* A significant association was seen between the burden of care score and severity of intellectual disability, as severity of intellectual disability increased, burden of care faced by caregivers increased. This was statistically significant at p-value of 0.005. Table 6: Association between QOL and interpersonal stressor Interpersonal Stressor Physical Mean (SD) Psychological Mean (SD) Social Mean (SD) Environmental Mean (SD) Present 50.35 (11.39) 46.90 (12.39) 69.94 (12.27) 48.90 (8.51) Absent 57.05 (7.61) 54.32 (10.67) 76.00 (10.91) 49.74 (7.99) P value 0.028* 0.036* 0.084 0.733 There was significant association of QOL in primary care givers with interpersonal stressors. Higher QOL was seen in all four domains in primary care givers who did not have interpersonal stressors i.e. in physical-57.05, psychological-54.32, social-76, environmental domain-49.74 as opposed to those who had interpersonal stressors with comparatively lower scores. This was statistically significant in the physical and psychological domain with a p value of 0.028 and 0.036 respectively. Table 7: Association between QOL and financial stressor Financial Stressor Physical Mean (SD) Psychological Mean (SD) Social Mean (SD) Environmental Mean (SD) Present 50.65 (10.79) 47.57 (12.46) 71.27 (12.30) 47.41 (7.12) Absent 59.31 (6.76) 55.85 (9.39) 75.00 (11.24) 54.38 (9.29) P value 0.010* 0.034* 0.342 0.007* There was significant association of QOL of primary caregivers of children with intellectual disability with financial stressors with higher score of quality of life in all domains in those who did not report financials stressors i.e. physical-59.31, psychological-55.85, social-75, and environmental domain-54.38 as compared to those who had financial stressors and comparatively lower scores of 50.65, 47.57, 71.27 & 47.41 respectively. These values were statically significant in the physical, psychological and environmental domain with p values of 0.010, 0.034 and 0.007 respectively.

Demographic distribution: The study population consisted of 74 % Hindus, 18 % Christians and 8% Muslims which was in general the distribution of religion in the state of Goa as per the Goa census report 2011. Overall residence of the caregivers was largely in urban areas. This is consistent with data obtained from census of India 2011 which showed 62.17 % population of Goa residing in urban areas and remaining 37.83 % in rural areas.(14) Majority of the caregivers were from the age groups from 41 to 60 comprising 56 % of the study population. More than half of the overall caregivers belonged to a nuclear family. When compared to joint families or three generational families where grandmothers and aunts contribute significantly to child care, there is lack of support in sharing the caregiver burden; higher burden in nuclear families was seen in studies done by S. Arasu et al.(4) and Ramachandran et al.(15) Overall higher percentage of caregivers were females, mothers being the predominant caregivers. Caregiving still remains a predominantly gendered activity, largely undertaken by women. Onus of taking care of the child and running the family falls on the female members as they are perceived as more compassionate and empathetic. The increased burden could be related to the emotional and physical effects of this prolonged caregiving along with limited social support and appreciation secondary to this expectation. More than half of the caregivers reported that they had interpersonal stressors and lack of support from the community. Social support has a buffering impact on caregiving burden and several studies have shown higher stress and poor quality of life in caregivers lacking social support.(16,17,18) Majority of the caregivers belonged to the upper-middle and lower-middle socio-economic status and overall 74 % reported financial stressors. A vast literature documents the direct and indirect costs to families of children with disabilities. Healthcare, behavioural and educational services and other special needs services are the primary monetary costs while indirect costs are primarily reduced parental capacity to keep full time employment due to long hours of caring. While 74 % of the study population reported financial stressors only 44 % availed government disability benefits; this in spite of the fact that 78 % of the population was aware of Government schemes. Lack of service availability and lack of access to government disability benefit schemes caused greater stress in caregivers. Burden of care: Majority of the caregivers-74% had mild to moderate burden, 20% had moderate to severe burden and a small minority had little or no burden with mean burden score of 31.46 ± 10.18. A recent study by Farag et al (2021) found up to 41.7 % of caregivers who reported moderate burden with 6.1% of them reporting severe burden.(19) However comparatively a higher burden was reported by 44 % of caregivers in a study conducted by Maheshwary et al.(18) In our study significant association was seen in burden of care score with severity of intellectual disability. As the severity of intellectual disability increased the burden of care experienced also increased. Irreversibility of the intellectual disability, need for lifelong care, social stigma, anticipation of future, causes stress and burden in caregivers. As per our study 68% of caregivers were mothers, 60% of the caregivers were hailing from nuclear families while 54 % reported lack of community support. In Indian households, joint family culture is considered an asset as responsibility of the parents reduces due to sharing by extended family members. Also, daily household chores get divided thus reducing the burden on mothers who are largely the primary caregivers. Quality of life: Although majority of the caregivers reported that their quality of life was neither poor nor good, a small minority of 16 % reported that their quality life was good, and 12 % reported that their quality of life was poor. Higher scores of quality of life was noted in the social domain while most affected domains were psychological and environmental domain. Since intellectual disability is a lifelong condition requiring assistance for self-care, learning; caregivers have little time for leisure or to fulfil other responsibilities, at times they attribute the condition to medical comorbidity, blame self or God due to lack of knowledge. Further lack of accessibility to treatment interventions and poor skill in disability management leads to physical health deterioration of the caregivers, which further takes a toll on their mental health. In our study, although 78% of caregivers were aware of government disability benefits, only 44% availed the benefits. This suggests that there are some barriers in accessing disability benefits which could aid in terms of healthcare for the child and caregivers. Caregivers of children with intellectual disabilities frequently experience feelings of anxiety, danger, and constant concern about their child’s physical security, which could explain their low scores on the environmental domain. We noted in our study significant association of caregivers with presence of interpersonal and financial stressors, with relatively poorer scores of quality of life in physical, psychological and environmental domains. Similar findings were seen in studies conducted by S. Arora et al.(16) J. Kim et al.(10) and Misura et al (33) where poor quality of life was seen in caregivers who had lower incomes and poor support from family. Further, our study noted that the burden of care had negative correlation with quality of life in the caregivers. Higher the level of burden of care, the lower the level of quality of life experienced by the primary caregiver. To reduce burden and improve quality of life, it is critical to invest in well-being of such caregivers through psychological education, skill training and therapeutic counselling.

A child's disability causes a period of disequilibrium in the parents followed by an adjustment to life with undue stress. The gap between expectations and the performance of the developmentally disabled child continues to cause grief. Caregiving, like a full-time job is demanding and requires a high level of commitment. Although the entire family bears the burden of the illness, the primary caregiver often bears the physical and emotional burden as well as lifestyle restrictions that can affect quality of life. Understanding how to manage the negative consequences of caregiving is essential for developing and implementing realistic, appropriate response strategies which should be viewed as essential adjuncts to management. Providing adequate information and measures on child disability and service availability as well as imparting skills training for dealing with a child with intellectual disability has a significant impact on reducing psychological distress among caregivers. Counselling services should include pre-conceptional screening and psychoeducation among caregivers at higher risk of having children with intellectual disability. Further regular screening of mothers of disabled children should be included in the protocol for managing caregiver burden and stress. Mindfulness based interventions, self-care, and kindness to oneself, dealing with acceptance of disability, skills training could effectively reduce these parents' stress and depression levels, thereby improve their quality of life and help them to take positive steps to handle the children more constructively. This will help the parents to accept children as they are and they may not unnecessarily reject, punish, and show hostility towards their children. Medical services offered to the children with intellectual disabilities should therefore now move from an individual level to the family level especially toward the mothers, who are the main caretakers. Rehabilitation institutes should shift their services from child centred to family centred services by raising awareness about the importance of involving families in their services and should also aim at addressing the caregivers' social stigma and discrimination. This study is a step towards understanding the stress and burden experienced by parents of children with intellectual disability. The present study highlights the lacunae in accessing the disability benefits from the government, lack of community support, and several interpersonal stressors which further need to be looked into and addressed by offering intervention to affected caregivers. Comprehensive interventions addressing caregiver education, psychosocial support, and financial relief are crucial to enhance well-being and indirectly improve child outcomes. CONFLICT OF INTEREST AND FUNDING The authors declare no conflict of interest and received no specific funding for this study.

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