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A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India
BACKGROUND: Cure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study investigated barriers to accessin...
Autores principales: | , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6889559/ https://www.ncbi.nlm.nih.gov/pubmed/31791308 http://dx.doi.org/10.1186/s12889-019-7911-x |
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author | Faruqui, Neha Joshi, Rohina Martiniuk, Alexandra Lowe, Jennifer Arora, Ramandeep Anis, Huma Kalra, Manas Bakhshi, Sameer Mishra, Ananya Santa, Ayyagari Sinha, Sudha Siddaiahgari, Sirisharani Seth, Rachna Bernays, Sarah |
author_facet | Faruqui, Neha Joshi, Rohina Martiniuk, Alexandra Lowe, Jennifer Arora, Ramandeep Anis, Huma Kalra, Manas Bakhshi, Sameer Mishra, Ananya Santa, Ayyagari Sinha, Sudha Siddaiahgari, Sirisharani Seth, Rachna Bernays, Sarah |
author_sort | Faruqui, Neha |
collection | PubMed |
description | BACKGROUND: Cure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study investigated barriers to accessing care from symptom onset to beginning of treatment, from perspectives of caregivers of children with cancer in India. METHODS: Semi-structured in-depth interviews were conducted with caregivers of children (< 18 years) diagnosed with cancer in seven tertiary care hospitals across New Delhi and Hyderabad. Purposive sampling to saturation was used to ensure adequate representation of the child’s gender, age, cancer type, geographical location and socioeconomic status. Interviews were audio recorded after obtaining informed consent. Thematic content analysis was conducted and organised using NVivo 11. RESULTS: Thirty-nine caregivers were interviewed, where three key themes emerged from the narratives: time intervals to definitive diagnosis and treatment, the importance of social supportive care and the overall accumulative impacts of the journey. There were two phases encapsulating the experiences of the family: referral pathways taken to reach the hospital and after reaching the hospital. Most caregivers, especially those from distant geographical areas had variable and inconsistent referral pathways partly due to poor availability of specialist doctors and diagnostic facilities outside major cities, influence from family or friends, and long travel times. Upon reaching the hospital, families mostly from public hospitals faced challenges navigating the hospital facilities, finding accommodation, and comprehending the diagnosis and treatment pathway. Throughout both phases, financial constraint was a recurring issue amongst low-income families. The caregiver’s knowledge and awareness of the disease and health system, religious and social factors were also common barriers. CONCLUSION: This qualitative study highlights and explores some of the barriers to childhood cancer care in India. Our findings show that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment. This information would help inform various stakeholders and contribute to improved interventions addressing these barriers. |
format | Online Article Text |
id | pubmed-6889559 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-68895592019-12-11 A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India Faruqui, Neha Joshi, Rohina Martiniuk, Alexandra Lowe, Jennifer Arora, Ramandeep Anis, Huma Kalra, Manas Bakhshi, Sameer Mishra, Ananya Santa, Ayyagari Sinha, Sudha Siddaiahgari, Sirisharani Seth, Rachna Bernays, Sarah BMC Public Health Research Article BACKGROUND: Cure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study investigated barriers to accessing care from symptom onset to beginning of treatment, from perspectives of caregivers of children with cancer in India. METHODS: Semi-structured in-depth interviews were conducted with caregivers of children (< 18 years) diagnosed with cancer in seven tertiary care hospitals across New Delhi and Hyderabad. Purposive sampling to saturation was used to ensure adequate representation of the child’s gender, age, cancer type, geographical location and socioeconomic status. Interviews were audio recorded after obtaining informed consent. Thematic content analysis was conducted and organised using NVivo 11. RESULTS: Thirty-nine caregivers were interviewed, where three key themes emerged from the narratives: time intervals to definitive diagnosis and treatment, the importance of social supportive care and the overall accumulative impacts of the journey. There were two phases encapsulating the experiences of the family: referral pathways taken to reach the hospital and after reaching the hospital. Most caregivers, especially those from distant geographical areas had variable and inconsistent referral pathways partly due to poor availability of specialist doctors and diagnostic facilities outside major cities, influence from family or friends, and long travel times. Upon reaching the hospital, families mostly from public hospitals faced challenges navigating the hospital facilities, finding accommodation, and comprehending the diagnosis and treatment pathway. Throughout both phases, financial constraint was a recurring issue amongst low-income families. The caregiver’s knowledge and awareness of the disease and health system, religious and social factors were also common barriers. CONCLUSION: This qualitative study highlights and explores some of the barriers to childhood cancer care in India. Our findings show that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment. This information would help inform various stakeholders and contribute to improved interventions addressing these barriers. BioMed Central 2019-12-02 /pmc/articles/PMC6889559/ /pubmed/31791308 http://dx.doi.org/10.1186/s12889-019-7911-x Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Article Faruqui, Neha Joshi, Rohina Martiniuk, Alexandra Lowe, Jennifer Arora, Ramandeep Anis, Huma Kalra, Manas Bakhshi, Sameer Mishra, Ananya Santa, Ayyagari Sinha, Sudha Siddaiahgari, Sirisharani Seth, Rachna Bernays, Sarah A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India |
title | A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India |
title_full | A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India |
title_fullStr | A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India |
title_full_unstemmed | A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India |
title_short | A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India |
title_sort | health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in india |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6889559/ https://www.ncbi.nlm.nih.gov/pubmed/31791308 http://dx.doi.org/10.1186/s12889-019-7911-x |
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