دورية أكاديمية
أعرض في EDS

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

التفاصيل البيبلوغرافية
العنوان: A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India.
المؤلفون: Faruqui N; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia. neha.faruqui@sydney.edu.au.; George Institute for Global Health, Sydney, NSW, Australia. neha.faruqui@sydney.edu.au., Joshi R; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.; George Institute for Global Health, Sydney, NSW, Australia.; Faculty of Medicine, University of New South Wales, Sydney, Australia., Martiniuk A; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.; George Institute for Global Health, Sydney, NSW, Australia.; Dalla Lana School of Public Health, University of Toronto, Toronto, Canada., Lowe J; Cankids…Kidscan, New Delhi, India., Arora R; Cankids…Kidscan, New Delhi, India.; Max Super Speciality Hospital, New Delhi, India., Anis H; Cankids…Kidscan, New Delhi, India., Kalra M; Indraprastha Apollo Hospital, New Delhi, India., Bakhshi S; IRCH, AIIMS Hospital, New Delhi, India., Mishra A; IRCH, AIIMS Hospital, New Delhi, India., Santa A; Basavatarakam Indo American Cancer Hospital, Hyderabad, India., Sinha S; MNJ Cancer Hospital, Hyderabad, India., Siddaiahgari S; Rainbow Children's Hospital, Hyderabad, India., Seth R; AIIMS Hospital, New Delhi, India., Bernays S; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.; London School of Hygiene and Tropical Medicine, London, UK.
المصدر: BMC public health [BMC Public Health] 2019 Dec 02; Vol. 19 (1), pp. 1613. Date of Electronic Publication: 2019 Dec 02.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: BioMed Central Country of Publication: England NLM ID: 100968562 Publication Model: Electronic Cited Medium: Internet ISSN: 1471-2458 (Electronic) Linking ISSN: 14712458 NLM ISO Abbreviation: BMC Public Health Subsets: MEDLINE
أسماء مطبوعة: Original Publication: London : BioMed Central, [2001-
مواضيع طبية MeSH: Caregivers/*psychology , Neoplasms/*diagnosis , Patient Acceptance of Health Care/*psychology , Time-to-Treatment/*statistics & numerical data, Adolescent ; Adult ; Child ; Female ; Health Services Accessibility ; Humans ; India ; Male ; Neoplasms/psychology ; Poverty/psychology ; Qualitative Research ; Referral and Consultation ; Social Support ; Socioeconomic Factors ; Time Factors
مستخلص: 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.
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فهرسة مساهمة: Keywords: Accessing care; Childhood cancer; Diagnosis delay; India; Qualitative study; Referral pathways; Treatment delay
تواريخ الأحداث: Date Created: 20191204 Date Completed: 20200303 Latest Revision: 20200303
رمز التحديث: 20221213
مُعرف محوري في PubMed: PMC6889559
DOI: 10.1186/s12889-019-7911-x
PMID: 31791308
قاعدة البيانات: MEDLINE
الوصف
تدمد:1471-2458
DOI:10.1186/s12889-019-7911-x