RESUMO
PURPOSE: Duchenne muscular dystrophy (DMD), a genetically linked muscle disease, is one of the most devastating diseases with currently no cure. Developing essential social skills as a child moves into adolescence is particularly problematic in DMD. The present study is an exploration of the social challenges faced by children with DMD. METHODS: A qualitative study was conducted among ten children diagnosed with DMD receiving treatment in a neuromuscular disorder clinic of a tertiary referral care center in Southern India. Participants were recruited purposively and were interviewed face-to-face and through telephone. The recorded interviews were transcribed and analyzed using reflexive thematic analysis. RESULTS: Mean age of the children was 13.9 (range: 13-15) at the time of the interviews, and six children had stopped schooling. The overarching theme generated from the interviews was struggle to belong, a yearning for normalcy in social spaces. Major identified themes were challenges with schooling, disabling society, feeling of being alone, and feeling of being a burden to the family. CONCLUSION: The study highlighted the struggles of children that become a complex social problem for them. Efforts need to be made to be child-centric and encourage inclusion by improving accessibility and social support through sensitization programs.
This is an addition to the existing body of literature from the Indian context and points toward the need for creating awareness about social inclusion in the healthcare professionals, general public and in schools.Strengthening the social support system with referrals to and liaising with other relevant internal and external services and resources, home support services is important.This can prepare the children with Duchenne muscular dystrophy with adequate information about social connections and prepare them emotionally.Mainstreaming of children with the necessary support of various stakeholders in the society will go a long way to ensure quality of life of the children.
RESUMO
One of the leading risk factors for an escalating obesity burden in India is non-nutritious choices. Underpinned by the nutrition transition theory, this qualitative inquiry was designed to understand the urban middle-class Indian consumers' views about processed foods and rapidly changing food choices. The study consisted of two phases, the first phase consisted of focus group discussions pertaining to the definition and conception of processed foods and the second phase consisted of interviews regarding the changing food environment. A convenience sample of Indian consumers aged 40-65 years were recruited from Mumbai and Kochi to participate in focus group discussions (FGD1 - nine participants and FGD2 - seven participants) and semi-structured face-to-face interviews (N = 22). Both discussions and interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to analyze the transcribed data. Features of processed foods mentioned were chemical and physical processing, prolonged shelf life and poor nutritional quality. Factors influencing food choices and consumption of processed foods reported by participants could be categorized into changes in the socio-cultural environment and changes in the food environment. Changes in the socio-cultural environment included globalization and urbanization, long work days and sedentary living, rise in income levels and decrease in household cooking. Changes in the food environment included increased availability and accessibility of processed foods, replacement of traditional Indian diet with Western food, food as indicators of status, food advertisements and convenience. These results are consistent with nutrition transition theory and provide useful direction for public health policies aimed at promoting healthy diets.