Access to care for childhood cancers in India: perspectives of health care providers and the implications for universal health coverage.

BACKGROUND: There are multiple barriers impeding access to childhood cancer care in the Indian health system. Understanding what the barriers are, how various stakeholders perceive these barriers and what influences their perceptions are essential in improving access to care, thereby contributing towards achieving Universal Health Coverage (UHC). This study aims to explore the challenges for accessing childhood cancer care through health care provider perspectives in India. METHODS: This study was conducted in 7 tertiary cancer hospitals (3 public, 3 private and 1 charitable trust hospital) across Delhi and Hyderabad. We recruited 27 healthcare providers involved in childhood cancer care. Semi-structured interviews were audio recorded after obtaining informed consent. A thematic and inductive approach to content analysis was conducted and organised using NVivo 11 software. RESULTS: Participants described a constellation of interconnected barriers to accessing care such as insufficient infrastructure and supportive care, patient knowledge and awareness, sociocultural beliefs, and weak referral pathways. However, these barriers were reflected upon differently based on participant perception through three key influences: 1) the type of hospital setting: public hospitals constituted more barriers such as patient navigation issues and inadequate health workforce, whereas charitable trust and private hospitals were better equipped to provide services. 2) the participant's cadre: the nature of the participant's role meant a different degree of exposure to the challenges families faced, where for example, social workers provided more in-depth accounts of barriers from their day-to-day interactions with families, compared to oncologists. 3) individual perceptions within cadres: regardless of the hospital setting or cadre, participants expressed individual varied opinions of barriers such as acceptance of delay and recognition of stakeholder accountabilities, where governance was a major issue. These influences alluded to not only tangible and structural barriers but also intangible barriers which are part of service provision and stakeholder relationships. CONCLUSION: Although participants acknowledged that accessing childhood cancer care in India is limited by several barriers, perceptions of these barriers varied. Our findings illustrate that health care provider perceptions are shaped by their experiences, interests and standpoints, which are useful towards informing policy for childhood cancers within UHC

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 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

Accessing childhood cancer care in the era of Universal Health Coverage: Insights from India

Childhood cancers are a rare group of diseases for which despite relatively high cure rates for some cancers when detected early, survival rates remain low in many low and middle-income countries (LMICs) compared to high income countries. This is in part due to multiple socioeconomic and health system related factors impeding access to timely diagnosis and treatment. An essential component of Universal Health Coverage (UHC) is improving ‘access to health services’ and ensuring all people have equitable access - including children with cancer, particularly since health systems strengthening for childhood cancers is likely to improve the health system for other disease conditions as well. For UHC to include a disease like childhood cancer, an understanding of the barriers to accessing childhood cancer care at the individual and health system levels is necessary. India manages childhood cancers through a fragmented health system while simultaneously embarking upon a commitment towards achieving UHC. While research has been undertaken on childhood cancer care in India, there are still gaps in research regarding specific health system and individual barriers to cancer diagnosis and treatment for children. Therefore, the overarching aims of this thesis were to identify and understand barriers in accessing childhood cancer care and to explore how these findings might assist in the quest to achieve UHC. This thesis did not aim to prescribe any single approach or package for the inclusion of childhood cancers in UHC, nor does it evaluate policy-making strategies or financial measures to support this. Rather, this thesis aims to present evidence of access to care issues which should be considered when developing actionable UHC policy agendas for addressing childhood cancer care in India. The thesis addresses its aims through a series of interrelated qualitative and quantitative methodological studies which highlight delays to diagnosis and treatment as well as health system and individual related barriers affecting access to care. It concludes with examining the current strategies for childhood cancer care in India and recommendations for future advancements

Reporting of ethics in peer-reviewed verbal autopsy studies: a systematic review

Verbal autopsy (VA) is a method that determines the cause of death by interviewing a relative of the deceased about the events occurring before the death, in regions where medical certification of cause of death is incomplete. This paper aims to review the ethical standards reported in peer-reviewed VA studies.A systematic review of Medline and Ovid was conducted by two independent researchers. Data were extracted and analysed for articles based on three key areas: Institutional Review Board (IRB) clearance and consenting process; data collection and management procedures, including: time between death and interview; training and education of interviewer, confidentiality of data and data security; and declarations of funding and conflict of interest.The review identified 802 articles, of which 288 were included. The review found that 48% all the studies reported having IRB clearance or obtaining consent of participants. The interviewer training and education levels were reported in 62% and 21% of the articles, respectively. Confidentiality of data was reported for 14% of all studies, 18% did not report the type of respondent interviewed and 51% reported time between death and the interview for the VA. Data security was reported in 8% of all studies. Funding was declared in 63% of all studies and conflict of interest in 42%. Reporting of all these variables increased over time.The results of this systematic review show that although there has been an increase in ethical reporting for VA studies, there still remains a large gap in reporting