A cross sectional observational study was conducted in the Department of Physical Medicine and Rehabilitation, Lady Hardinge Medical College and associated Kalawati Saran Children’s Hospital from November 2011 to October 2012 after approval from Institutional Ethics Committee (Number IEC-96/2011).

Caregivers of children with and without disabilities, who satisfied the inclusion criteria (Caregiver of child more than three-year-old and having only one child with disability) and exclusion criteria (caregivers with any disease affecting their quality of life) and gave their informed consent, were included in the study.

Sample size calculation: Taking the values from the study of Manee F et al., as reference [13], the minimum required sample size with 99% power of study and 1% level of significance was 39 patients in each study group. To reduce margin of error, total sample size taken was 400 (200 caregivers per group).

A prestructured proforma addressing details about the participant’s demographic profile like age of the child and their caregivers, gender of the child, type of caregiver (Mother, father or other), type of family, education of caregiver, area of living i.e., urban or rural, etc and WHOQoL-BREF (was used after attaining permission, but due to limited space the whole questionnaire has not been included in the article) was filled by the interviewer. WHOQoL-BREF is a cross culturally comparable quality of life measure which was developed collaboratively and field-tested across a number of cultural contexts. It assesses quality of life within six different domains. It is the short version of the WHOQoL 100 and is recommended for use when time is restricted or the burden on the respondent needs to be minimised. This scale contains 26 items and addresses 4 QoL domains: physical health (7 items), psychological health (6 items), social relationships (3 items) and environment (8 items). Two other items measure overall QoL and general health of the participants. Items are rated on a 5-point scale (low score of 1 to high score of 5) to determine a raw item score. Subsequently, the mean score for each domain is calculated, resulting in a mean score per domain that is between 4 and 20 [14].

Categorical variables were presented in number and percentage (%) and continuous variables as median. Normality of data was tested by Kolmogorov-Smirnov test. Wherever normality was rejected, non parametric test was used. Quantitative variables were compared using Mann-Whitney Test (as the data sets were not normally distributed) between the two groups. A p-value of <0.05 was considered statistically significant. The data was entered in MS EXCEL spreadsheet and analysis was done using SPSS version 21.0.

Out of 400 caregivers evaluated, majority of the children were in the age group 3-7 years, whereas caregivers were in the age group of 25-35 years. In both groups there was a preponderance of female child. Mother more commonly accompanied the child to the outpatient department as compared to father. More children were residing in nuclear families as compared to joint families in both case and control group. Majority of caregivers belonged to urban areas with their level of education varying from illiteracy to secondary (class X). [Table/Fig-1].

Cerebral palsy was the most common cause of disability (78.5 %) followed by Mental retardation (6.5%). Children with other disabilities were very few between 1 to 5 and thus intergroup analysis could not be done [Table/Fig-2]. Quality of life score was significantly lower in case group as compared to control group in all domains of WHOQoL-BREF [Table/Fig-3]. Quality of life scores in all the domains improved with increasing age of the child. After attaining the age of 11 years and above, scores obtained by the caregivers in both the groups were comparable [Table/Fig-4]. Caregivers in case group with age either less than 25 years or more than 35 years had better quality of life scores when compared to caregiver of children between 25 to 35 years in all domain except domain 2 and domain 1 within 15-25 years [Table/Fig-5].

We did not observe any correlation between low scores obtained in the questionnaire and gender of the child. The lower score was statistically significant (p-value <0.05) in all the domains with respect to father belonging to the case group. Interestingly, mothers of case group were satisfied in the social relationship domain but the scores of other three domains were significantly low from mothers of children without disabilities. Even they rated overall Health and Quality of life better than fathers of disabled children [Table/Fig-6]. A higher quality of life score was observed in caregivers living in a joint family rather than in nuclear family setting. The better score achieved was mainly through the scores achieved in domain 4. Lower scores were seen in case group compared to the control group especially in caregivers residing in rural area vs caregivers of case group residing in urban area.

Upbringing of a disabled child adds up to additional commitments by the caregivers emotionally, mentally, physically as well as socially. This secondarily leads to deterioration not only in the health of these parents but also on their quality of life. Present study has highlighted the fact that caregivers with children having disabilities have a poorer quality of life compared to their peers as reflected by the lower scores they obtained in the WHOQoL-BREF questionnaire. This is in agreement to the research work done by other authors as well [8,13,15-25]. It was observed that as age of the child increased, the quality of life of caregivers became better. It may be due to the fact that initially caregivers passed through a phase of denial which increased their own stress levels & commitments towards the child, but with time, acceptability of the fact and a self-learning process of coping developed. These findings did not correlate with the study done by Oliveira Ede F and Limongi SC who found no correlation between the age of the child and quality of life scores [17].

The present study agreed with the findings of other authors that there was no correlation between gender of the child and the quality of life scores in caregivers [18,19,21]. Middle aged caregivers (26-35 years) had poorer quality of life outcomes as compared to younger (<25 years) or older caregivers (>35 years). This result was contrary to the finding of Barros ALO et al., According to them older caregivers had higher impact on quality of life due to disabled children [26]. The lower score was statistically significant in all the domains with respect to fathers belonging to the case group. Interestingly, only the scores obtained by mothers in domain 3, despite being lower than the scores achieved by mothers in control group was not statistically significant (p-value >0.05). This finding is contrary to the studies done by Malhotra S et al., and Misura AK and Menisevic H, [18,24]. In 2017 Misura AK and Menisevic H, observed better quality of life scores in fathers of children with intellectual disabilities [24]. On the other hand, Malhotra S et al., found lower scores in all domains of WHOQoL-BREF in both parents as compared to control group [18]. The better scores were observed in present study in caregivers of case group residing in urban location contrary to findings of Shekhawat BS et al., [25]. The explanation of these findings lies in the fact that appropriate medical care is not available at village or even town level to deal with children having disabilities. Caregivers living in joint families had better scores as compared to caregivers of nuclear families in case group. This signified the importance of sharing burden in the joint families as mentioned in previous studies [20-24].

There were many variables which were not taken into consideration as this study would have become complicated, hence limited and common factors were taken into account. In further studies other factors can be considered like jobs of caregivers, socioeconomic status etc., to study their effect on quality of life of caregivers of children with disabilities. Severity of disability was not considered in this study as all the disabled children and their caregivers were included during the mentioned period without considering the diagnosis as inclusion criteria. Many factors can be studied in isolation or in combination to find the cause effect relationship in such studies. Nevertheless, it is an established fact that caregivers of children with disability have lower quality of life scores in almost all domain as compared to caregivers of children without disabilities.

Department providing health care management to children with disabilities should also have protocol for caregivers well being including education of caregivers regarding the disability of their child, its management and stress management.

The lower scores achieved by caregivers of children with disability underlies the fact that their quality of life has been affected by the added responsibility of bringing up their child. Lower quality of life equates to increased emotional, physical, mental and social problems which takes a toll on the overall health of caregivers. Herein lies the importance that health care practitioners apart from treating the child with disability should also address the problems being faced by the concerned caregivers in the form of appropriate and timely guidance. Psychological counselling, peer group meeting, exercises to improve muscle flexibility and core muscle strengthening, education on lifting techniques, de-stressing techniques like meditation etc. would go a long way in improving the health of the caregivers.