A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India
A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India
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DOI：
10.1186/s12889-019-7911-x
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发表时间：
2019-12-02
影响因子：
4.5
通讯作者：
Bernays, Sarah
中科院分区：
文献类型：
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作者：
Faruqui, Neha;Joshi, Rohina;Bernays, Sarah
背景印度癌症儿童的治愈率落后于高收入国家。各种疾病、治疗和与社会经济有关的因素导致了这一差距，包括及时获得诊断和治疗护理方面的障碍。这项研究从印度癌症儿童照顾者的角度，调查了从症状开始到治疗开始的获得护理的障碍。方法对新德里和海得拉巴七家三级保健医院确诊为癌症的儿童(18岁)的照顾者进行半结构化深度访谈。采用有目的的抽样至饱和，以确保充分反映儿童的性别、年龄、癌症类型、地理位置和社会经济地位。在获得知情同意后，对访谈进行录音。使用NVivo 11软件进行主题内容分析。结果共访问了39名照顾者，从叙述中发现了三个关键主题：确诊诊断和治疗的时间间隔、社会支持护理的重要性和旅程的总体累积影响。有两个阶段概括了这家人的经历：到达医院的转介路径和到达医院后的转介路径。大多数照顾者，特别是来自偏远地理区域的照顾者，转诊路径多变且不一致，部分原因是大城市以外的专科医生和诊断设施缺乏，受到家人或朋友的影响，以及旅行时间长。到达医院后，大多数来自公立医院的家庭面临着在医院设施导航、寻找住宿和了解诊断和治疗途径方面的挑战。在这两个阶段，经济困难是低收入家庭反复遇到的问题。照顾者对疾病和卫生系统、宗教和社会因素的知识和认识也是常见的障碍。结论这项定性研究突出并探索了印度儿童癌症护理的一些障碍。我们的研究结果表明，转诊途径与治疗经验有着内在的联系，应该更好地认识到家庭在确诊和治疗之前所面临的经济和情感挑战。这些信息将有助于向各利益攸关方通报情况，并有助于改进应对这些障碍的干预措施。
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.