A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India

Abstract

BackgroundCure 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.MethodsSemi-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.ResultsThirty-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.ConclusionThis 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.

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

“…relational and social beliefs of families, limited knowledge and awareness of the disease and health system and financial problems). These barriers were similar to those identified in previous literature [ 33 , 34 , 38 – 41 ], including the qualitative study on caregiver perspectives [ 35 ]. While this is important, the studies did not illuminate how these barriers are perceived and what influences these perceptions.…”

“…A similar qualitative study on barriers to accessing childhood cancer care from the perspective of caregivers was conducted by the lead study investigator and team [ 35 ]. The results indicated that time to definitive diagnosis and treatment, social supportive care and ongoing emotional and financial impacts were the major themes affecting access to cancer care.…”

Parent’s perspectives of the pathway to diagnosis of childhood cancer: a matter of diagnostic triage

“…Previous studies have shown that delay occurs at different stages during diagnostic pathways due to a variety of factors [ 8 – 11 , 30 – 32 ]. This is in line with our findings as the pathway to diagnosis was shaped by factors related to disease, patient/parents and the HCS.…”

Equity at a time of pandemic

“…In turn, these policies give rise to the differential experiences of populations occupying ‘specific social locations such as social class, gender, age, and race’ [( Raphael and Bryant, 2019 ), p. 61]. Social locations are complex and intersecting, created by the identities that any person, group, or community occupies in relation to others ( Crenshaw, 1997 ; Nixon, 2019 ). Civil society, corporate sectors, organized labor, along with ideological and economic systems, all influence political systems though multiple pathways that direct distributive policies ( Raphael and Bryant, 2019 ).…”