A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population.

Background: Li-Fraumeni syndrome (LFS) is a rare autosomal dominant hereditary cancer syndrome. Due to the high risk of occurrence of multiple cancers, families with LFS may have an overwhelming psychosocial burden. Methods: This cross-sectional study was conducted at a tertiary care center using face-to-face interviews through a grounded theory approach. Statistical analysis was done using Smith's Interpretative Phenomenological Approach. Themes and sub-themes were extracted, and a thematic schema was developed. Results: A total of five themes were identified. The extracted themes were psychological experiences, behavioural responses, stressors, coping strategies and perceived needs. The interlay of the themes deepened the impact of LFS on the affected ones and brought into light the turmoil of emotions and difficulties that these individuals were going through in the face of the disease. Conclusions: LFS-affected individuals had a range of experiences with this rare and little-known disease. The lack of information seems to be a precursor to the denial of diagnosis. Their experience with the illness sheds light on the grey areas like guilt and helplessness that demand immediate attention. Future policies need to be developed in accordance with the identified perceived needs to potentially guide the treatment and rising needs of LFS-affected individuals.

"I might catch this infection again and this time I will not survive" - A qualitative study on lived-in experiences and coping strategies of COVID-19-positive individuals in India.

BACKGROUND: The clinical picture of COVID-19 is as complex as it is psychosocial impact. The sheer subjectivity of the illness experience demands that each individual affected be heard and noticed. AIMS: To assess lived-in experiences and coping strategies of COVID-19 positive individuals. SETTINGS AND DESIGN: The study was conducted at designated COVID care center of a tertiary care hospital using a hermeneutic phenomenological approach. MATERIALS AND METHODS: Interviews were collected from 13 COVID-19-positive individuals using an open-ended interview guide and were recorded, transcribed and further analyzed. STATISTICAL ANALYSIS: Analysis was done using Smith's Interpretative Phenomenological Approach. Themes and sub-themes were extracted and thematic schema was developed. RESULTS: A total of 10 themes and 36 sub-themes were identified. The themes extracted with context to before being diagnosed with COVID-19 positive are impact of COVID-19 and preconception about hospitalization and hospitalized individuals. The themes with relation to active COVID-19 infection are psychological reactions, behavioral responses, positive experiences, negative experiences, stigma, coping strategies, and perceived needs. The theme re-adjustment with life was identified for postrecovery from COVID-19. CONCLUSIONS: COVID-19-positive individuals have myriad of experiences from their transition of being positive to finally being free of infection. Their experience with the illness sheds light on the gray areas like stigma that demand immediate attention. Future policies need to be developed in accordance with the identified perceived needs to potentially guide the satisfaction and recovery of COVID-19-positive individuals.