The results of the qualitative data revealed the domains as social isolation, need of social and family support, psychological issues, financial constraints, lack of awareness, physical burden. Psycho socioeconomic domains were included in the questionnaire to explore more in a quantitative way.
The quantitative data revealed 68.5% were male children and 31% were female. With mean age 2.35 yrs. and minimum 8 months to maximum19 years. The average care givers age was26.36 yrs. 88.70% reside in rural areas and 11.3% in urban. 19% Belong to SES 3 (Lower middle) an 81% belong to SES4 (upper lower). None to lower class by Kuppuswamy modified socio economic status scale.
Majority parents were farmers (48%), 12% labourers, 9% shop keepers and rest miscellaneous types. For 6.5% families the one-time treatment expenditure far crossed their yearly expenditure. In 18.3% families the monthly expenditure was more than income and 20.6% spent more than 50% of their income on treatment of the child.
None had insurance. 4.6% had chronic illness of other family members. 2% had another child also affected. In case of financial requirement when they cannot meet the expenditure 7.6% sold their belonging, 38.2% took loan, 33.6% financial support was availed from family friends and relatives and 2.3% got financial assistance from govt. or NGO and 11.5% did could not help themselves any way.
Only 2 people had barrier free home. 73.3 parents did not know about government schemes available for them, 14.5% knew but were not availing and 6.9% were availing.
The mean age at which therapy started was 19 months. Minimum age was 6 months to maximum 19 month. Their knowledge about therapy for the child was usually from acquaintance (75.8). From physician only 17.7% had information regarding therapy. And rest from other sources including anganwadi workers
Social life was affected for 70.14%. 71% were not getting any social support for upbringing the child and 29% were getting social support. Out of these 29% social support was from maternal side for 14%, the social support was 9% from paternal side and 5% from other relatives.
Results of Psychological parameters revealed 36.6% parents were usually anxious, 42.7% are anxious sometimes, 11.5% were always anxious and 2.3% were rarely anxious.
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40.5% are sometimes stressed, 29% were rarely stressed 19% are never stressed and 7.6% usually stressed.
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49.6% were sometimes depressed, 30.5% rarely depressed, 5.3 were never depressed.
Economic Parameters:
Yearly income and initial expenditure on child were significantly different for SES 3 and 4 (socio economic status by modified Kuppuswami socioeconomic status scale) (p = .000 and p = .034 respectively) by independent t test.
The socio-economic status was related (point biserial) − .253 (P = .005) to treatment expenditure.
Economic and Psychological Parameters:
The psychological parameters (anxiety, depression and stress) are not significantly different in SES 3 and SES 4 by man Whitney test. The test statistics z=-.792 and p = .428 for anxiety, z = .161 (p = .872) for depression and z=-.637 (p = .524) for stress.
Total income of the family of care givers was not related to anxiety, stress or depression. However, the initial treatment expenditure was related to anxiety (r = .426, p = .027) and depression (r = .22, p = .033). Subsequent expenditure on child’s treatment showed relationship with anxiety (r = .274, p = .04) and with depression (r = .41 p = .002) and with stress (r = .34, p = .012).
Relationship of Economic and Social Parameters:
The financial status of the parents either showed weak relationship with their social life (Total income and the how much social life affected was r=-.278 (p = .008). The parents’ income and the expenditure on the child had no significant relation with how much social support they get. (r=-.022, p = .843 and r=-.234, p = .163 respectively).
Relationship of Psychological and Social Parameters:
The psychological parameters showed weak relationship or no significant relationship with how much social life was affected or how much social support they get.
Depression and social life affected Pearson r = .13 (p = .155).
Depression and how much social support they get Pearson r=-.159 (p = .346).
Stress and social life affected Pearson r = .30 (p = .001).
Stress and how much social support they get Pearson r=-.179 (p = .300).
Anxiety and social life affected Pearson r = .23 (p = .011).
Anxiety and how much social support they get Pearson r=-187 (p = .267).