A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India
Abstract 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...
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| Format: | Article |
| Language: | English |
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BMC
2019-12-01
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| Series: | BMC Public Health |
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| Online Access: | https://doi.org/10.1186/s12889-019-7911-x |
| _version_ | 1828932843337678848 |
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| author | Neha Faruqui Rohina Joshi Alexandra Martiniuk Jennifer Lowe Ramandeep Arora Huma Anis Manas Kalra Sameer Bakhshi Ananya Mishra Ayyagari Santa Sudha Sinha Sirisharani Siddaiahgari Rachna Seth Sarah Bernays |
| author_facet | Neha Faruqui Rohina Joshi Alexandra Martiniuk Jennifer Lowe Ramandeep Arora Huma Anis Manas Kalra Sameer Bakhshi Ananya Mishra Ayyagari Santa Sudha Sinha Sirisharani Siddaiahgari Rachna Seth Sarah Bernays |
| author_sort | Neha Faruqui |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-14T01:08:28Z |
| format | Article |
| id | doaj.art-ffe0036842524dff9a65ab2a7c8748ae |
| institution | Directory Open Access Journal |
| issn | 1471-2458 |
| language | English |
| last_indexed | 2024-12-14T01:08:28Z |
| publishDate | 2019-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Public Health |
| spelling | doaj.art-ffe0036842524dff9a65ab2a7c8748ae2022-12-21T23:22:53ZengBMCBMC Public Health1471-24582019-12-0119111210.1186/s12889-019-7911-xA health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in IndiaNeha Faruqui0Rohina Joshi1Alexandra Martiniuk2Jennifer Lowe3Ramandeep Arora4Huma Anis5Manas Kalra6Sameer Bakhshi7Ananya Mishra8Ayyagari Santa9Sudha Sinha10Sirisharani Siddaiahgari11Rachna Seth12Sarah Bernays13Sydney School of Public Health, The University of SydneySydney School of Public Health, The University of SydneySydney School of Public Health, The University of SydneyCankids…KidscanCankids…KidscanCankids…KidscanIndraprastha Apollo HospitalIRCH, AIIMS HospitalIRCH, AIIMS HospitalBasavatarakam Indo American Cancer HospitalMNJ Cancer HospitalRainbow Children’s HospitalAIIMS HospitalSydney School of Public Health, The University of SydneyAbstract 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.https://doi.org/10.1186/s12889-019-7911-xQualitative studyIndiaChildhood cancerAccessing careReferral pathwaysTreatment delay |
| spellingShingle | Neha Faruqui Rohina Joshi Alexandra Martiniuk Jennifer Lowe Ramandeep Arora Huma Anis Manas Kalra Sameer Bakhshi Ananya Mishra Ayyagari Santa Sudha Sinha Sirisharani Siddaiahgari Rachna Seth Sarah Bernays A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India BMC Public Health Qualitative study India Childhood cancer Accessing care Referral pathways Treatment delay |
| 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 | Qualitative study India Childhood cancer Accessing care Referral pathways Treatment delay |
| url | https://doi.org/10.1186/s12889-019-7911-x |
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