This study analyses the lived experiences of 4 Childhood Cancer survivors who were 12 -18 years of age at the time of their treatment. Through their stories, the Researcher tried to understand what they perceived as engagement on financial, sociological, physical and psychological levels.
Paper long abstract:
The respondents were selected from different socio economic backgrounds, 2 from lower middle class, one each from middle and upper middle class. The children were treated also in different kinds of hospitals, corresponding to their financial status. 2 children from the lower-middle class were treated in the government Medical College Hospital, one from the middle-class background was treated in a reputed Private Hospital and the child from Upper middle-class got her treatment from the best hospital with international standards. Researcher tried to maintain all possible variables and thus the respondents included 3 boys and a girl.
The study was conducted in the four states of Southern India as part of a global study that included 9 low and middle income countries in 2019 called “Patient, Family, Stakeholder Engagement in Childhood Cancer”. The Writer re-visited the respondents again for this paper. The Respondents were identified and reached out to through the NGO the Researcher founded and associated with. Details were collected through informal discussions done with each respondent and his/her family in their mother tongue and through Focus Group discussions. The qualitative data was analyzed thematically to arrive at the conclusions.
* The study brings to light that the knowledge and the engagement in treatment for the patient and the family members are directly proportional to their financial and social status.
* Lack of/ inadequate communication between the health care professionals and the patient and family a major roadblock in engagement in treatment.