Health and Health Related Quality of Life of Children Living with HIV Infected Parents

Objective: To study the health and health related quality of life of children living with HIV infected parents using Pediatric Quality of Life Inventory (PedsQL) TM 4.0 Generic Core Scales. Methods: The study was conducted from January 2013 to October 2014 at S. N. Medical College, Agra , ART centre and pediatrics OPD. The Pedsql generic core version 4.0 was administered to 300 children in the age group of 8-18 years living with HIV infected parents and 300 controls who visited the pediatric OPD for minor ailments. Results: In this study it was found that children living with HIV infected parents had lower mean weight(26.89 vs 30.76 kg), height(1.09 vs 1.35metres) and body mass index (15.73 vs 17.16) compared with controls. The percentage of children not attending the school for more than six months was also significantly higher in the study group ( 32% vs 15% in controls. Their Pedsql scores were lower in emotional, social and school domains as compared with the controls. Conclusion: These findings are along expected lines, it is vital to establish a baseline of socioeconomic and physical parameters of such children in Indian context. This knowledge is vital to plan a meaningful policy intervention and to measure its efficacy. These findings can guide in the development of future interventions that promote care and support of children living in HIV/AIDS affected families. we feel more such studies are required in future to realise the big picture.


Introduction
HIV in children is a major health problem which is increasingly becoming prominent cause of childhood morbidity and mortality in India.The total number of people living with HIV in India is estimated at 2.4 million in 2009 with 4.4% children less than 15 years of age (NACO) (1).
A search of the literature has shown that there has been very limited research on the HRQOL of children living with HIV infected parents in India.The information gathered on children living with HIV infected parents, including children orphaned by AIDS, would be of benefit to all the health team members, and family members involved in taking care of these young children and would assist in determining the resource allocation that is necessary in terms of social, emotional and school support that would optimise the quality of life of these children.In addition, the specific domains assessed using the modified version of PedsQL 4.0 Generic Core Scales may highlight specific aspects of quality of life in children.The aim of this study was to study the health and health related quality of life of children living with HIV positive parents through Pedsql 4.0.http://www.pacificejournals.com/aabs on a predesigned, pretested semi structured performa (enclosure).A complete physical examination of each child was done and parameters recorded.Ethical clearance was taken from institutional review board.
Paediatric Quality Of Life Generic Core Scale Version 4.0(PedsQL 4.0) (2) in Hindi language was used in all children of the study group for which permission was sought from Dr James W.Varni, who owns the copyrights of PedsQL.PedsQL 4.0 measures the health dimensions (called domains) of physical, emotional, social and school functioning of the child through various questions (called items).It has 8 items for physical functioning domain and 5 items each for emotional, social and school functioning domains (total 23 items).Two methods for administration of the instrument were self-administration and proxy administration.Children ≤12 years opted for proxy method and children >12years, for self administration method.
Each item in different domain was assessed and scored by two methods Likert scoring and Reverse scoring.Likert score ranges from 0-4 (0 is never, 1 is almost never, 2 is sometimes, 3 is frequently and 4 is almost always).
In reverse scoring the Likert score of each item in the domain was transformed on a scale of 0-100 in a reverse manner where 0 is 100, 1 is 75, 2 is 50, 3 is 25 and 4 is 0. By reverse scoring the HRQOL was plotted on a score of 0-100 where reverse score '0'means severely affected and '100' means near normal.The total score in each domain was calculated separately and it denotes the QOL related to that domain ie Physical, Social, Emotional and School.HRQOL for psychosocial functioning was obtained by combining the scores of social, emotional and school functioning domains.A total score for all the domains was calculated by summing up the scores of all the domains and it denotes overall HRQOL.

Result
Fom January 2013 to October 2014, 556 HIV infected parents with at least one child rin the age group of 8-18 years and fulfilling the inclusion criteria visited the ART centre for consultation.513 such parents were contacted and were pursued to take part in the study and bring their children on the next visit.Only 300 parents and their eligible children turned up during the study period and were enrolled in the study.
Table-1 shows the demographic profile of children and caregivers in the study and the control group.
In the present study it was observed that reverse scores ranged from 0-100 and the mean total reverse score was 77.16.Among individual domains children scored best in their physical scores (87.07) but were less in emotional domain (72.53), social domain (79.65) and school domain (69.40).The psychosocial score by reverse scoring was 73.86.(Table -2) The association of Pedsql scores with multiple independent variables was performed.Lower pedsql scores were recorded in older age group, children not attending school, living in nuclear families, with single parent alive, and lower socioeconomic status.(Table -3) For the categorical variables (gender, hiv status etc.) the data was analysed as frequency and percentage and chisquare test was applied for comparisons.For continuous variables (weight, height, reverse scores) mean and standard deviations were calculated and comparison was done using unpaired student-t-test.Spss20 was used to calculate the results.P-values less than 0.05 were considered significant.

Discussion
In our study we found that children living with HIV infected parents had lower mean weight, height and body mass index compared with controls.The percentage of children not attending the school for more than six months was also significantly higher in the study group.Their Pedsql scores were lower in emotional, social and school domains.School score was the most affected domain followed by emotional domain.The physical domain was the least affected.The HRQOL was significantly affected by age of child, survival status of parents, type of family the child lives in, socioeconomic status of family, schooling, disclosure of parents' HIV status.
32% children in the study group were not attending the school, for duration of more than 6 months, at the time of study.Regarding reasons for dropouts, poor economic condition and social stigmas associated with their parents HIV status were the major issues.In the studies by Tao Xu et al (3) and Sengendo and Nambi et al (4) in Uganda, the percentage of dropouts from school was 18% and 45% respectively In our study 19% of children had their BMI below 2 Standard deviation (Underweight) (Table 1).It is slightly more than reported by Chinqing Lin et al (5).
On comparing the HRQOL scores with respect to age the scores were significantly lower in the emotional domain in children greater than 12 years (Table -3).It could be due to children of the older age being able to understand the disease and social stigmas associated with HIV from which their parents were suffering.Other reason could be that children in the older age group had opted for self administration method for response and are their best judges regarding their emotions.The HRQOL scores were better in all domains in children whose both parents are alive.This difference is statistically significant in the emotional and social domains only.Our findings showed that disclosure of parental HIV/AIDS status to the child affected the HRQOL of their children in the emotional, social and school domains (table 3) similar to that reported by Tao Xu et al (3) and Rotheram-Borus et al (6).
We found that children living in nuclear families reported lower HRQOL scores than those living in joint families.The difference of scores was statistically significant in social domain (p value=0.003)(Table -3).Children living in such families may also be deprived of family affection and care necessary for their well-being, increasing their risk to develop psychological and behavioural problems as also observed by Fang et al (7); Wild et al (8).
The observations in the study show that the HRQOL of children not attending school was lower in physical, social and emotional domains (statistically significant difference in emotional and social domains, p values 0.032, 0.005 respectively).As suggested by the studies conducted by Nyamukapa et al (9) and colleagues in Zimbabwe, being out of school contributed to the greater psychological distress of AIDS affected children, because these children would lose a safe place for learning skills, sharing grief and developing peer networks.
The present study had some limitations that should be acknowledged.Being a cross-sectional study, we were unable to test whether there are changes in children's HRQOL over time.Moreover the response to the questionnaire was obtained differently for children greater than 12 years (self-administered) and less than 12 years (proxy administered).Despite the limitations, the findings are still applicable and can guide in the development of future interventions that promote care and support of children living in HIV/AIDS affected families.

Table - 1: Demographic profile of children and caregivers in study and control group: Profile Control group (n=300) Study group (n= 300) Children
Annals of Applied Bio-Sciences, Vol.4; Issue 2: 2017 e-ISSN: 2349-6991; p-ISSN: 2455-0396 + values are given as frequency and (percentage) * values are given as mean± standard deviation

Variable Physical score Emotional score Social score School score Total score
As 96/300 children were not attending school, the school score and total score could not be calculated *