The research was designed as a cross - sectional study and data collection was completed over a period of one year from January 2015 to January 2016. It was conducted in the Department of Ophthalmology at a tertiary care centre after obtaining clearance from Institutional Ethics Committee. A self-designed questionnaire (annexure) was used to assess the QOL of primary care giver of children diagnosed with CP. This questionnaire was prepared after review of relevant research articles [7,10,11] and then validated for content by subject experts in the field of Ophthalmology, Community Medicine and Medical Education. Reliability of questionnaire was assessed using Cronbach’s Alpa in SPSS Software version 22 and Cronbach’s alpha was 0.885. Internal Consistency between the questions was good. The validated QOL questionnaire was translated into two vernacular languages- Kannada and Malayalam, which are commonly spoken in the field practice area of the hospital. This was planned as a time bound study, so all the care givers of children with CP referred to Ophthalmology department, who consented, were enrolled in the study.

The children who have been diagnosed with CP were referred for ophthalmic evaluation by the Department of Paediatrics. The parents of the child were informed regarding the need of the study, ocular examination and the objectives of the study. They were informed regarding the questionnaire. They were clearly explained that refusal to participate would not affect the care given to their ward. The participants were also assured of confidentiality of information shared. Any doubts regarding the study protocol were clarified by the chief investigator. The female primary care giver was identified and was then enrolled in the study after obtaining their written consent.

On visiting Ophthalmology Department, ocular evaluation of children was performed that included pupillary dilatation for fundus examination. The interview was scheduled during this time to ensure that the family does not have to spend any extra time for the purpose of the study.

The questionnaire recorded the demographic details of the study participants including age, education, employment, socioeconomic status and number of children in the family. It included 22 questions that assessed following five domains- limitation in activities due to physical health problem, disrupted schedule, emotional problems, financial burden and anxiety [Annexure]. It also had questions assessing the awareness regarding ophthalmic evaluation of child with CP. Likert scale with score from 0 to 4 was used to grade 22 items. The total score hence ranged from 0 to 88. QOL score of 41 was taken as demarcation for categorizing the QOL of care givers as good and poor QOL.

Descriptive statistics were used to describe the demographic details of study population. Chi-square test was used to determine the association between scored categorical variable and the domains under evaluation. The test was also used to know the association between mean QOL score and age of care taker, educational qualification and number of children in the family. Results were considered to be statistically significant at p< 0.05.

The questionnaire was administered to 36 consenting female care takers, age ranging from 22-55 years, while 20 (55.56%) were in the age group of 21-30 years. [Table/Fig-1] shows demographic characteristics of the sample population. It also depicts the socio economic class the participants belong to. This is based on Updated Kuppuswamy classification [12]. The educational qualification of female care takers were grouped as follows: Primary level (first to fifth standard), middle school (sixth to seventh standard), secondary (eighth to tenth standard), higher secondary (eleventh to twelfth standard) and Graduate. The results found in this study are depicted in [Table/Fig-1]. Among the care givers, 41.66% were from rural background and 75% were unemployed.

The mean QOL score was 40.47 with minimum being 15 and maximum 75. Out of the 36 participants, 20 (55.6%) had a mean score <41 which was good QOL. Sixteen (44.4%) had a mean score >41 which was poor QOL. The mean values and standard deviation of five domains are shown in the [Table/Fig-2]. Chi-square statistics test was used to find out statistical association between mean QOL score of care givers and area of residence, age and number of children, which is depicted in [Table/Fig-3]. These were not found to be significantly associated to QOL. Test was also used to find out relation between mean QOL score and educational qualification which was found to be insignificant (p-value-0.393). The test showed statistical significant association between limitation of physical activities, burden and QOL score as shown in the [Table/Fig-4]. Emotional domain did not show any statistical association with QOL score.

The analysis of questionnaire to know the awareness amongst the female caretakers regarding the need for ophthalmic evaluation of CP children showed that 24(67%) were not aware. Amongst the care takers who were aware, 30% received the information from the doctor. Their perceptions regarding ophthalmic evaluation of CP children are shown in [Table/Fig-5].

Caregiving is part of parenting and when the requirements are excessive and long lasting, this can often cause significant burden. This in turn may adversely affect the physical and psychological health of caregivers [13], thus possibly reducing their QOL [14]. The mean age of female care takers in this study was 31.39 years. The mean age reported by Shanbagh D et al., and Yilmaz H et al., was 37.8 years and 35.96 years respectively [7,15]. However, a study done by Marron EM et al., showed a higher mean age (41.98 years) of care givers [16]. Educational qualification did not have an impact on QOL.

In our study 55% of care givers had a mean QOL score less than 41, which indicated good QOL. The reason for this could be that some families may cope well despite the challenges involved in caretaking. Majority of the respondents in this study were not working.

A family centered approach to the care of children with disability is widely accepted concept. Parenting style is an important aspect for children with CP. A study done in Ontario, Canada, on the caregivers of children with CP, showed more reported distress, chronicity of distress, emotional problems and cognitive problems of caregivers [17]. In a study done in Bangladesh, Mobarak R et al., found that 41.8% out of the 91 mothers of children with CP had a risk for psychiatric morbidity. [18] A study done by Shanbagh D et al., showed psychological and environmental domains of QOL to be most affected, while the physical and social domains were relatively better [7]. Our study showed statistical significant association between limitation of physical activities, burden and QOL score. Children with CP may find it difficult to perform self-care like dressing, feeding, bathing and mobility. Greater disability may demand more effort from the caregivers, and hence take up more time and money. The financial burden involved in taking care of these children is huge apart from the responsibility of meeting the self-care requirements.

Visual morbidity is frequently associated with CP [6,19]. Majority of the care givers in our study were not aware of the need for ophthalmic evaluation of children with CP as they were unaware of ocular associations with the illness. They need to be better informed about the disability affecting these children. Probably limitation of physical activities takes precedence in these children and the ocular health goes neglected. Studies have shown that knowledgeable caregivers are likely to report positive psychosocial indices and better health-related QOL [20]. Appropriate care can be given if caregivers have adequate knowledge about the child’s condition. Therefore, healthcare professionals play an important role in imparting health education. There are studies which have improved the parental knowledge about CP through educational films, flash cards and educational workshops [21-23]. At the community level it is essential to sensitize the care takers about the condition through educational videos, flip charts or posters.

The study was time bound with limited sample size. It did not take into account the type of CP and its Gross Motor Function Classification which could have been co-related with the QOL. We did not consider the number of hours of care giving.

Overall the QOL of the care givers in this study was good. Of the various domains assessed, burden and limitation of physical activities affected the mean QOL score. The study highlights the need to do more research on QOL of female caretakers of CP. Providing information about the condition to the caregivers can help to improve their self-confidence and coping skills. In India as most of the caregivers are from rural area, it is needed to impart health education with the help of healthcare professionals. The fact that there was poor awareness regarding the need for ophthalmic evaluation of CP children needs to be addressed.