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      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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          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.

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          Most cited references 18

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          Delay in seeking a cancer diagnosis: delay stages and psychophysiological comparison processes.

          Two analyses of patient delay in seeking a medical diagnosis are considered. In the first, a model of delay is presented. Specifically, delay is comprised of four stages (appraisal, illness, behavioural and scheduling delay intervals), each governed by a conceptually distinct set of decisional and appraisal processes beginning with the initial day that an unexplained symptom is detected to the day the individual appears before a physician. The second analysis is a social psychological one of the attributions individuals draw when relating their symptoms to their expectations and knowledge about physiological bodily processes. The eight principles of Psychophysiological Comparison Theory (PCT) provide the basis for clarifying the psychological processes of symptom interpretation and appraisal. Two studies were conducted with women seeking diagnostic evaluations for prevalent cancers: breast or gynaecological tumours. Regarding the delay model, results indicated that the delay intervals were independent (i.e. uncorrelated). Also, appraisal delay constituted the majority (at least 60 per cent) of the total delay. In the test of PCT, support was found across measures of symptoms, the context in which the symptoms arose, and the inferences people made about the symptoms.
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            Hope and prognostic disclosure.

            Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. We surveyed 194 parents of children with cancer (overall response rate, 70%) in their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA), and we surveyed the children's physicians. We evaluated relationships between parental recall of prognostic disclosure by the physician and possible outcomes, including hope, trust, and emotional distress. Our main outcome was assessed by asking parents how often the way the child's oncologist communicated with them about the children's cancers made them feel hopeful. Nearly half of parents reported that physician communication always made them feel hopeful. Parents who reported receiving a greater number of elements of prognostic disclosure were more likely to report communication-related hope (odds ratio [OR], 1.77 per element of disclosure; P = .001), even when the likelihood of a cure was low (OR, 5.98 per element of disclosure with likelihood of a cure < 25%; P = .03). In a multivariable model, parents were more likely to report that physician communication always made them feel hopeful when they also reported receipt of more elements of prognostic disclosure (OR, 1.60; P = .03) and high-quality communication (OR, 6.58; P < .0001). Communication-related hope was inversely associated with the child's likelihood of cure (OR, 0.65; P = .005). Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.
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              Diagnosis delays in childhood cancer: a review.

              Timely access to quality healthcare has become an increasingly important public health concern over the years. Early diagnosis of cancer is a fundamental goal in oncology because it allows an opportunity for timely treatment while disease burden is still in its earliest stages. Consequently, prognosis may improve, and a cure can be attained with minimal side or late effects. This review examined delays present in diagnosis of childhood cancers and factors that influence these delays. An extensive search of the literature published before April 15, 2007 was conducted for studies that evaluated any type of delay along the cancer-care continuum. Twenty-three studies were included. Diagnosis delay varied across studies. Physician delays were generally longer than those consequent to parents' or patients' recognition of underlying disease. Causes of delays can be grouped into 3 categories: patient and/or parent, disease, and healthcare. The main factors related to diagnosis delay were the child's age at diagnosis, parent level of education, type of cancer, presentation of symptoms, tumor site, cancer stage, and first medical specialty consulted. Greater understanding of factors that influence delays and the individual impact of patient and provider delays on disease severity and prognosis would be useful to form effective policies and programs aimed at ensuring timely access to healthcare for children with cancer.
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                Author and article information

                Contributors
                neha.faruqui@sydney.edu.au
                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central (London )
                1471-2458
                2 December 2019
                2 December 2019
                2019
                : 19
                Affiliations
                [1 ]ISNI 0000 0004 1936 834X, GRID grid.1013.3, Sydney School of Public Health, , The University of Sydney, ; Sydney, NSW Australia
                [2 ]ISNI 0000 0001 1964 6010, GRID grid.415508.d, George Institute for Global Health, ; Sydney, NSW Australia
                [3 ]ISNI 0000 0004 4902 0432, GRID grid.1005.4, Faculty of Medicine, , University of New South Wales, ; Sydney, Australia
                [4 ]ISNI 0000 0001 2157 2938, GRID grid.17063.33, Dalla Lana School of Public Health, , University of Toronto, ; Toronto, Canada
                [5 ]GRID grid.450686.9, Cankids…Kidscan, ; New Delhi, India
                [6 ]ISNI 0000 0004 1805 869X, GRID grid.459746.d, Max Super Speciality Hospital, ; New Delhi, India
                [7 ]ISNI 0000 0004 1804 700X, GRID grid.414612.4, Indraprastha Apollo Hospital, ; New Delhi, India
                [8 ]ISNI 0000 0004 1767 8336, GRID grid.415237.6, IRCH, AIIMS Hospital, ; New Delhi, India
                [9 ]GRID grid.429046.d, Basavatarakam Indo American Cancer Hospital, ; Hyderabad, India
                [10 ]ISNI 0000 0004 0496 945X, GRID grid.477565.2, MNJ Cancer Hospital, ; Hyderabad, India
                [11 ]ISNI 0000 0004 1801 0717, GRID grid.464660.6, Rainbow Children’s Hospital, ; Hyderabad, India
                [12 ]ISNI 0000 0004 1767 6103, GRID grid.413618.9, AIIMS Hospital, ; New Delhi, India
                [13 ]ISNI 0000 0004 0425 469X, GRID grid.8991.9, London School of Hygiene and Tropical Medicine, ; London, UK
                Article
                7911
                10.1186/s12889-019-7911-x
                6889559
                31791308
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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                © The Author(s) 2019

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