Cargando…

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 fa...

Descripción completa

Detalles Bibliográficos
Autores principales: Joshi, Poonam, Bhandari, Sunidhi, TK, Ajesh, Kaur, Simran, Bhargava, Rachna, Tansir, Ghazal, Rastogi, Sameer
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10327410/
https://www.ncbi.nlm.nih.gov/pubmed/37424880
http://dx.doi.org/10.1177/20363613231186300
_version_ 1785069619967426560
author Joshi, Poonam
Bhandari, Sunidhi
TK, Ajesh
Kaur, Simran
Bhargava, Rachna
Tansir, Ghazal
Rastogi, Sameer
author_facet Joshi, Poonam
Bhandari, Sunidhi
TK, Ajesh
Kaur, Simran
Bhargava, Rachna
Tansir, Ghazal
Rastogi, Sameer
author_sort Joshi, Poonam
collection PubMed
description 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.
format Online
Article
Text
id pubmed-10327410
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher SAGE Publications
record_format MEDLINE/PubMed
spelling pubmed-103274102023-07-08 A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population Joshi, Poonam Bhandari, Sunidhi TK, Ajesh Kaur, Simran Bhargava, Rachna Tansir, Ghazal Rastogi, Sameer Rare Tumors Original Article 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. SAGE Publications 2023-06-27 /pmc/articles/PMC10327410/ /pubmed/37424880 http://dx.doi.org/10.1177/20363613231186300 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Article
Joshi, Poonam
Bhandari, Sunidhi
TK, Ajesh
Kaur, Simran
Bhargava, Rachna
Tansir, Ghazal
Rastogi, Sameer
A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population
title A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population
title_full A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population
title_fullStr A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population
title_full_unstemmed A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population
title_short A qualitative study to assess the psychological experiences and coping strategies of families affected with Li-Fraumeni syndrome in the Indian population
title_sort qualitative study to assess the psychological experiences and coping strategies of families affected with li-fraumeni syndrome in the indian population
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10327410/
https://www.ncbi.nlm.nih.gov/pubmed/37424880
http://dx.doi.org/10.1177/20363613231186300
work_keys_str_mv AT joshipoonam aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT bhandarisunidhi aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT tkajesh aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT kaursimran aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT bhargavarachna aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT tansirghazal aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT rastogisameer aqualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT joshipoonam qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT bhandarisunidhi qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT tkajesh qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT kaursimran qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT bhargavarachna qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT tansirghazal qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation
AT rastogisameer qualitativestudytoassessthepsychologicalexperiencesandcopingstrategiesoffamiliesaffectedwithlifraumenisyndromeintheindianpopulation