{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,11]],"date-time":"2026-10-11T06:14:34Z","timestamp":1791699274061,"version":"4.3.4"},"reference-count":56,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T00:00:00Z","timestamp":1737417600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T00:00:00Z","timestamp":1737417600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"funder":[{"name":"SEWA Rural","award":["Agreement-01-20\/06\/2023"],"award-info":[{"award-number":["Agreement-01-20\/06\/2023"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Community Genet"],"DOI":"10.1007\/s12687-025-00768-5","type":"journal-article","created":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T02:45:05Z","timestamp":1737427505000},"page":"167-181","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Perceptions of patients and stakeholders on a prenatal sickle cell disease screening and its results among tribal populations of Gujarat: a participatory mixed-method research"],"prefix":"10.1007","volume":"16","author":[{"given":"Apurvakumar","family":"Pandya","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kapil","family":"Dave","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shrey","family":"Desai","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gayatri","family":"Desai","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,1,21]]},"reference":[{"key":"768_CR1","doi-asserted-by":"publisher","unstructured":"Aderotoye-Oni S, Diaku-Akinwumi IN, Adeniran A, Falase B (2018). Unprepared and misinformed parents of children with sickle cell disease: Time to rethink awareness campaigns. Cureus 31;10(12):e3806. https:\/\/doi.org\/10.7759\/cureus.3806","DOI":"10.7759\/cureus.3806"},{"issue":"3","key":"768_CR2","doi-asserted-by":"publisher","first-page":"e56932","DOI":"10.7759\/cureus.56932","volume":"16","author":"S Arumugam","year":"2024","unstructured":"Arumugam S, Kalluri SS, Sharmila V, Mocherla A, Subbiah NK, Kulkarni JP, Ghoshal JA (2024) Understanding the awareness of prenatal genetic screening tests among pregnant women in India: A cross-sectional study. Cureus 16(3):e56932. https:\/\/doi.org\/10.7759\/cureus.56932","journal-title":"Cureus"},{"key":"768_CR3","unstructured":"Ashorobi D, Naha K, Bhatt R (2023) Hematopoietic stem cell transplantation in sickle cell disease. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing. Available from: https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK538515\/"},{"key":"768_CR4","doi-asserted-by":"publisher","first-page":"175","DOI":"10.1186\/1471-2458-12-175","volume":"12","author":"SK Banerjee","year":"2012","unstructured":"Banerjee SK, Andersen KL, Buchanan RM et al (2012) Woman-centered research on access to safe abortion services and implications for behavioral change communication interventions: a cross-sectional study of women in Bihar and Jharkhand. India BMC Public Health 12:175. https:\/\/doi.org\/10.1186\/1471-2458-12-175","journal-title":"India BMC Public Health"},{"key":"768_CR5","doi-asserted-by":"crossref","unstructured":"Banerjee SK, Andersen KL, Warvadekar J, Pearson E (2013) Effectiveness of a behavior change communication intervention to improve knowledge and perceptions about abortion in Bihar and Jharkhand, India.\u00a0Intl Pers Sexl Reproduct Health 142\u2013151. https:\/\/www.jstor.org\/stable\/2359612","DOI":"10.1363\/3914213"},{"issue":"10","key":"768_CR6","doi-asserted-by":"publisher","first-page":"854","DOI":"10.1136\/jech.2004.028662","volume":"60","author":"F Baum","year":"2006","unstructured":"Baum F, MacDougall C, Smith D (2006) Participatory action research. J Epidemiol Community Health 60(10):854\u2013857. https:\/\/doi.org\/10.1136\/jech.2004.028662","journal-title":"J Epidemiol Community Health"},{"issue":"1","key":"768_CR7","doi-asserted-by":"publisher","first-page":"50","DOI":"10.1093\/pch\/pxab096","volume":"27","author":"CE Beck","year":"2022","unstructured":"Beck CE, Trottier ED, Kirby-Allen M, Pastore Y (2022) Acute complications in children with sickle cell disease: Prevention and management. Paediatrics Child Health 27(1):50\u201362. https:\/\/doi.org\/10.1093\/pch\/pxab096","journal-title":"Paediatrics Child Health"},{"key":"768_CR8","unstructured":"Bernard, H. R. (2002). Research methods in anthropology: Qualitative and quantitative approaches (3rd ed.). Walnut Creek, CA: Altamira Press"},{"key":"768_CR9","unstructured":"Bourdieu, P. (1986). Handbook of theory and research for the sociology of education. Greenwood Press"},{"issue":"2","key":"768_CR10","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77\u2013101","journal-title":"Qual Res Psychol"},{"issue":"1","key":"768_CR11","doi-asserted-by":"publisher","first-page":"4","DOI":"10.4103\/ijmr.ijmr_1435_21","volume":"154","author":"V Brousse","year":"2021","unstructured":"Brousse V, Rees DC (2021) Sickle cell disease: More than a century of progress. Where do we stand now? Indian J of Med Res 154(1):4\u20137. https:\/\/doi.org\/10.4103\/ijmr.ijmr_1435_21","journal-title":"Indian J of Med Res"},{"key":"768_CR12","unstructured":"Census of India (2011) Bharuch District Population, Caste, Religion Data (Gujarat) - Census 2011. Retrieved from https:\/\/www.censusindia.co.in\/district\/bharuch-district-gujarat-488. Accessed 31 May 2023"},{"key":"768_CR13","unstructured":"Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage Publications, London, Thousand Oaks, Calif. https:\/\/archive.org\/details\/constructinggrou0000char"},{"key":"768_CR14","doi-asserted-by":"publisher","first-page":"51","DOI":"10.18203\/2320-6012.ijrms20195902","volume":"14","author":"J Chavda","year":"2015","unstructured":"Chavda J, Goswami P, Goswami A (2015) Hematological profile of sickle cell disorder in tertiary care hospital. IOSR J Dent Med Sci 14:51\u201354. https:\/\/doi.org\/10.18203\/2320-6012.ijrms20195902","journal-title":"IOSR J Dent Med Sci"},{"issue":"Suppl","key":"768_CR15","doi-asserted-by":"publisher","first-page":"S31","DOI":"10.4103\/1119-3077.170820","volume":"18","author":"SC Chima","year":"2015","unstructured":"Chima SC, Mamdoo F (2015) Ethical and legal dilemmas around termination of pregnancy for severe fetal anomalies: A review of two African neonates presenting with ventriculomegaly and holoprosencephaly. Nigerian J Clin Pract 18(Suppl):S31\u2013S39. https:\/\/doi.org\/10.4103\/1119-3077.170820","journal-title":"Nigerian J Clin Pract"},{"issue":"1","key":"768_CR16","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1007\/s12687-018-0371-7","volume":"10","author":"AJ Clarke","year":"2019","unstructured":"Clarke AJ, Wallgren-Pettersson C (2019) Ethics in genetic counselling. J Community Genet 10(1):3\u201333. https:\/\/doi.org\/10.1007\/s12687-018-0371-7","journal-title":"J Community Genet"},{"issue":"5","key":"768_CR17","doi-asserted-by":"publisher","first-page":"345","DOI":"10.1002\/pd.1131","volume":"25","author":"R Colah","year":"2005","unstructured":"Colah R, Surve R, Nadkarni A, Gorakshakar A, Phanasgaonkar S, Satoskar P, Mohanty D (2005) Prenatal diagnosis of sickle syndromes in India: dilemmas in counselling. Prenat Diagn 25(5):345\u2013349","journal-title":"Prenat Diagn"},{"issue":"5","key":"768_CR18","doi-asserted-by":"publisher","first-page":"509","DOI":"10.4103\/0971-5916.159492","volume":"141","author":"RB Colah","year":"2015","unstructured":"Colah RB, Mukherjee MB, Martin S, Ghosh K (2015) Sickle cell disease in tribal populations in India. Indian J Med Res 141(5):509\u2013515. https:\/\/doi.org\/10.4103\/0971-5916.159492","journal-title":"Indian J Med Res"},{"key":"768_CR19","unstructured":"Creswell JW (2013) Qualitative inquiry & research design: choosing among five approaches, 3rd edn. SAGE, Thousand Oaks, CA"},{"key":"768_CR20","doi-asserted-by":"publisher","first-page":"1282","DOI":"10.18203\/2394-6040.ijcmph20161399","volume":"3","author":"G Desai","year":"2016","unstructured":"Desai G, Dave K, Banerjee S, Babaria P, Gupta R (2016) Initial outcomes of a comprehensive care model for sickle cell disease among a tribal population in rural Western India. Int J Community Med Public Health 3:1282\u20131287. https:\/\/doi.org\/10.18203\/2394-6040.ijcmph20161399","journal-title":"Int J Community Med Public Health"},{"issue":"2","key":"768_CR21","doi-asserted-by":"publisher","first-page":"26","DOI":"10.4314\/aipm.v7i2.64084","volume":"7","author":"JO Fadare","year":"2009","unstructured":"Fadare JO (2009) Some ethical issues in the prenatal diagnosis of sickle cell anaemia. Ann Ib Postgrad Med 7(2):26\u201328. https:\/\/doi.org\/10.4314\/aipm.v7i2.64084","journal-title":"Ann Ib Postgrad Med"},{"issue":"8","key":"768_CR22","first-page":"553","volume":"10","author":"V Gajbhiye","year":"2019","unstructured":"Gajbhiye V, Agarwal S (2019) Stigma associated with sickle cell disease in India: Perception of patients and healthcare providers. Intl J of Comm Med 10(8):553\u2013557","journal-title":"Intl J of Comm Med"},{"issue":"2","key":"768_CR23","doi-asserted-by":"publisher","first-page":"191","DOI":"10.1080\/13691050903429316","volume":"12","author":"JA Gupta","year":"2010","unstructured":"Gupta JA (2010) Exploring Indian women\u2019s reproductive decision-making regarding prenatal testing. Cult, Heal Sexu 12(2):191\u2013204. https:\/\/doi.org\/10.1080\/13691050903429316","journal-title":"Cult, Heal Sexu"},{"issue":"4","key":"768_CR24","first-page":"14","volume":"3","author":"D Gupta","year":"2014","unstructured":"Gupta D, Mishra R, Saxena R (2014) Knowledge and awareness of sickle cell disease among antenatal women in North India. Intl J of Reprod Contrace Fam Plann 3(4):14\u201319","journal-title":"Intl J of Reprod Contrace Fam Plann"},{"issue":"1","key":"768_CR25","doi-asserted-by":"publisher","first-page":"255","DOI":"10.1146\/annurev-genom-120122-081037","volume":"24","author":"G Hardouin","year":"2023","unstructured":"Hardouin G, Magrin E, Corsia A, Cavazzana M, Miccio A, Semeraro M (2023) Sickle cell disease: from genetics to curative approaches. Annu Rev Genomics Hum Genet 24(1):255\u2013275. https:\/\/doi.org\/10.1146\/annurev-genom-120122-081037","journal-title":"Annu Rev Genomics Hum Genet"},{"key":"768_CR26","doi-asserted-by":"publisher","unstructured":"Hewson B (2001) Reproductive autonomy and the ethics of abortion.\u00a0J Med Eth,\u00a027 Suppl 2(Suppl 2), ii10\u2013ii14. https:\/\/doi.org\/10.1136\/jme.27.suppl_2.ii10","DOI":"10.1136\/jme.27.suppl_2.ii10"},{"key":"768_CR27","doi-asserted-by":"publisher","first-page":"17685","DOI":"10.1038\/s41598-018-36077-w","volume":"8","author":"C Hockham","year":"2018","unstructured":"Hockham C, Bhatt S, Colah R et al (2018) The spatial epidemiology of sickle-cell anaemia in India. Sci Rep 8:17685. https:\/\/doi.org\/10.1038\/s41598-018-36077-w","journal-title":"Sci Rep"},{"issue":"1","key":"768_CR28","doi-asserted-by":"publisher","first-page":"267","DOI":"10.1186\/s12884-017-1449-7","volume":"17","author":"E Jones","year":"2017","unstructured":"Jones E, Lattof SR, Coast E (2017) Interventions to provide culturally-appropriate maternity care services: factors affecting implementation. BMC Pregnancy Childbirth 17(1):267. https:\/\/doi.org\/10.1186\/s12884-017-1449-7","journal-title":"BMC Pregnancy Childbirth"},{"key":"768_CR29","unstructured":"Kalita T (2013) Interpretation of the problem of abortion: Issue of foetus killing in the light of traditional and contemporary ethics. Accessed on 12.12.2018, Retrieved from: gyan.iitg.ernet.in\/ bitstream\/handle\/ 123456789\/400\/TH-1177_ 07614101.pdf?...1"},{"issue":"6","key":"768_CR30","doi-asserted-by":"publisher","first-page":"491","DOI":"10.4103\/ijmr.ijmr_1045_23","volume":"157","author":"RR Kishore","year":"2023","unstructured":"Kishore RR, Gupta M, Gupta K (2023) A new era dawns on sickle cell disease in India. Indian J Med Res 157(6):491\u2013493. https:\/\/doi.org\/10.4103\/ijmr.ijmr_1045_23","journal-title":"Indian J Med Res"},{"issue":"3","key":"768_CR31","doi-asserted-by":"publisher","first-page":"587","DOI":"10.1002\/jha2.711","volume":"4","author":"EA Linton","year":"2023","unstructured":"Linton EA, Williams EC, Early ML, Prince E, Stewart RW, Lanzkron S, Pecker LH (2023) Family planning needs of young adults with sickle cell disease. Ejhaem 4(3):587\u2013594. https:\/\/doi.org\/10.1002\/jha2.711","journal-title":"Ejhaem"},{"key":"768_CR32","first-page":"561","volume":"4","author":"D Mohanty","year":"2011","unstructured":"Mohanty D, Das K (2011) Genetic counselling in tribals in India. Indian J Med Res 4:561\u2013571","journal-title":"Indian J Med Res"},{"key":"768_CR33","doi-asserted-by":"publisher","unstructured":"Munung NS, Kamga KK, Treadwell MJ, Dennis-Antwi J, Anie KA, Bukini D, Makani J, Wonkam A (2024) Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania. Eur J Hum Genet. 2024. https:\/\/doi.org\/10.1038\/s41431-024-01553-7.","DOI":"10.1038\/s41431-024-01553-7"},{"issue":"4","key":"768_CR34","first-page":"547","volume":"134","author":"V Muthuswamy","year":"2011","unstructured":"Muthuswamy V (2011) Ethical issues in genetic counselling with special reference to haemoglobinopathies. Indian J Med Res 134(4):547\u2013551","journal-title":"Indian J Med Res"},{"key":"768_CR35","unstructured":"National Heart, Lung, and Blood Institute (n.d.)\u00a0What is sickle cell disease?\u00a0Retrieved from https:\/\/migrc.org\/resource\/nhlbi-sickle-cell-disease-management-guidelines\/. Accessed 31 May 2023"},{"key":"768_CR36","unstructured":"National Sickle Cell Elimination Mission (2023) Ministry of Health and Family Welfare, Government of India. Retrieved from https:\/\/sickle.nhm.gov.in\/home\/guidelines. Accessed 31 May 2023"},{"key":"768_CR37","doi-asserted-by":"publisher","first-page":"284","DOI":"10.1182\/asheducation.V2012.1.284.3798319","volume":"2012","author":"JA Panepinto","year":"2012","unstructured":"Panepinto JA (2012) Health-related quality of life in patients with hemoglobinopathies. Hematology Am Soc Hematol Educ Program 2012:284\u2013289","journal-title":"Hematology Am Soc Hematol Educ Program"},{"key":"768_CR38","doi-asserted-by":"publisher","first-page":"43","DOI":"10.1007\/s12687-012-0116-y","volume":"4","author":"J Patel","year":"2013","unstructured":"Patel J, Patel B, Gamit N, Serjeant GR (2013) Screening for the sickle cell gene in Gujarat, India: A village-based model. J Community Genet 4:43\u201347. https:\/\/doi.org\/10.1007\/s12687-012-0116-y","journal-title":"J Community Genet"},{"issue":"4","key":"768_CR39","doi-asserted-by":"publisher","first-page":"1075","DOI":"10.18203\/2394-6040.ijcmph20171327","volume":"4","author":"SS Patil","year":"2017","unstructured":"Patil SS, Thikare AA, Wadhva SK, Narlawar UW, Shukla S (2017) Knowledge, attitude and practice regarding sickle cell disease in adult sufferers and carriers in a rural area. Int J Community Med Public Health 4(4):1075\u20131080. https:\/\/doi.org\/10.18203\/2394-6040.ijcmph20171327","journal-title":"Int J Community Med Public Health"},{"issue":"7","key":"768_CR40","doi-asserted-by":"publisher","first-page":"e1001484","DOI":"10.1371\/journal.pmed.1001484","volume":"10","author":"FB Piel","year":"2013","unstructured":"Piel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN (2013) Global burden of sickle cell anaemia in children under five, 2010\u20132050: modelling based on demographics, excess mortality, and interventions. PLoS Med 10(7):e1001484. https:\/\/doi.org\/10.1371\/journal.pmed.1001484","journal-title":"PLoS Med"},{"issue":"23","key":"768_CR41","first-page":"2396","volume":"376","author":"O Platt","year":"2017","unstructured":"Platt O, Dornelas G, Shackleton S (2017) Sickle cell disease. New Eng J Med 376(23):2396\u20132406","journal-title":"New Eng J Med"},{"issue":"4","key":"768_CR42","doi-asserted-by":"publisher","first-page":"352","DOI":"10.1080\/08998280.2001.11927788","volume":"14","author":"CM Puchalski","year":"2001","unstructured":"Puchalski CM (2001) The role of spirituality in health care. Proc Bayl Univ Med Cent 14(4):352\u2013357. https:\/\/doi.org\/10.1080\/08998280.2001.11927788","journal-title":"Proc Bayl Univ Med Cent"},{"issue":"1\u20132","key":"768_CR43","doi-asserted-by":"publisher","first-page":"101","DOI":"10.1300\/J013v13n01_09","volume":"13","author":"R Rapp","year":"1988","unstructured":"Rapp R (1988) Moral pioneers: Women, men and fetuses on a frontier of reproductive technology. Women Health 13(1\u20132):101\u2013117. https:\/\/doi.org\/10.1300\/J013v13n01_09","journal-title":"Women Health"},{"issue":"4","key":"768_CR44","doi-asserted-by":"publisher","first-page":"218","DOI":"10.4103\/ijcm.IJCM_284_16","volume":"42","author":"D Saxena","year":"2017","unstructured":"Saxena D, Yasobant S, Golechha M (2017) Situational analysis of Sickle Cell Disease in Gujarat. India Indian J Community Med 42(4):218\u2013221. https:\/\/doi.org\/10.4103\/ijcm.IJCM_284_16","journal-title":"India Indian J Community Med"},{"issue":"1","key":"768_CR45","doi-asserted-by":"publisher","first-page":"21","DOI":"10.4103\/0971-5916.178582","volume":"143","author":"GR Serjeant","year":"2016","unstructured":"Serjeant GR, Ghosh K, Patel J (2016) Sickle cell disease in India: A perspective. Indian J Med Res 143(1):21\u201324. https:\/\/doi.org\/10.4103\/0971-5916.178582","journal-title":"Indian J Med Res"},{"key":"768_CR46","unstructured":"Shiladaria DP, Patel DS, Oza HV (2013) Prevalence of anemia, thalassemia, and sickle cell disorder in young adults of Gujarat. Natl J Integr Res Med 4:61\u20133. Retrieved from https:\/\/nicpd.ac.in\/ojs-\/index.php\/njirm\/article\/view\/2207"},{"key":"768_CR47","doi-asserted-by":"publisher","first-page":"78","DOI":"10.1016\/j.copsyc.2015.05.002","volume":"5","author":"SE Short","year":"2015","unstructured":"Short SE, Mollborn S (2015) Social Determinants and Health Behaviors: Conceptual Frames and Empirical Advances. Curr Opin Psychol 5:78\u201384. https:\/\/doi.org\/10.1016\/j.copsyc.2015.05.002","journal-title":"Curr Opin Psychol"},{"key":"768_CR48","unstructured":"Sickle Cell Anemia Control Program\u00a0(2013) A new initiative of Government of Gujarat: Best health practices. Gujarat Health and Family Welfare Department, Gujarat. [Last accessed on 2024 April 11]. Retrieved from:\u00a0http:\/\/www.sickle.cell.gujarat.gov.in\/Docs\/News_GR_NC\/131120_120132.pdf\u00a0\\"},{"key":"768_CR49","unstructured":"Sickle Cell Foundation (2023) About sickle cell.\u00a0Retrieved from\u00a0https:\/\/www.sicklecelldisease.org\/. Accessed 31 May 2023"},{"issue":"1","key":"768_CR50","first-page":"34","volume":"1","author":"N Sirohi","year":"2015","unstructured":"Sirohi N, Mishra A (2015) Ethical challenges in managing sickle cell disease in India. J Clin Res Bioeth 1(1):34\u201343","journal-title":"J Clin Res Bioeth"},{"issue":"2","key":"768_CR51","doi-asserted-by":"publisher","first-page":"195","DOI":"10.1007\/s11019-016-9725-2","volume":"20","author":"G Stapleton","year":"2017","unstructured":"Stapleton G (2017) Qualifying choice: ethical reflection on the scope of prenatal screening. Med, Health Care Philos 20(2):195\u2013205. https:\/\/doi.org\/10.1007\/s11019-016-9725-2","journal-title":"Med, Health Care Philos"},{"issue":"3","key":"768_CR52","first-page":"288","volume":"138","author":"S Tewari","year":"2013","unstructured":"Tewari S, Rees D (2013) Morbidity pattern of sickle cell disease in India: a single centre perspective. Indian J Med Res 138(3):288\u2013290","journal-title":"Indian J Med Res"},{"issue":"6","key":"768_CR53","doi-asserted-by":"publisher","first-page":"1227","DOI":"10.1007\/s10897-016-9960-y","volume":"25","author":"SL van der Steen","year":"2016","unstructured":"van der Steen SL, Riedijk SR, Verhagen-Visser J, Govaerts LC, Srebniak MI, Van Opstal D, Joosten M, Knapen MF, Tibben A, Diderich KE, Galjaard RJ (2016) The psychological impact of prenatal diagnosis and disclosure of susceptibility loci: first impressions of parents\u2019 experiences. J Genet Couns 25(6):1227\u20131234. https:\/\/doi.org\/10.1007\/s10897-016-9960-y","journal-title":"J Genet Couns"},{"key":"768_CR54","doi-asserted-by":"publisher","unstructured":"Vaughn LM, Jacquez F (2020) Participatory Research Methods \u2013 Choice points in the research process.\u00a0J Part Res Meth,\u00a01(1).\u00a0https:\/\/doi.org\/10.35844\/001c.13244","DOI":"10.35844\/001c.13244"},{"key":"768_CR55","volume-title":"The capitalist world-system","author":"I Wallerstein","year":"1979","unstructured":"Wallerstein I (1979) The capitalist world-system. Academic Press"},{"issue":"2","key":"768_CR56","doi-asserted-by":"publisher","first-page":"814","DOI":"10.1353\/hpu.2018.0060","volume":"29","author":"H Williams","year":"2018","unstructured":"Williams H, Silva RNS, Cline D, Freiermuth C, Tanabe P (2018) Social and Behavioral Factors in Sickle Cell Disease: Employment Predicts Decreased Health Care Utilization. J Health Care Poor Underserved 29(2):814\u2013829. https:\/\/doi.org\/10.1353\/hpu.2018.0060","journal-title":"J Health Care Poor Underserved"}],"container-title":["Journal of Community Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-025-00768-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12687-025-00768-5\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-025-00768-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,8]],"date-time":"2025-04-08T19:51:59Z","timestamp":1744141919000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12687-025-00768-5"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,21]]},"references-count":56,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2025,4]]}},"alternative-id":["768"],"URL":"https:\/\/doi.org\/10.1007\/s12687-025-00768-5","relation":{},"ISSN":["1868-6001"],"issn-type":[{"value":"1868-6001","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,21]]},"assertion":[{"value":"25 June 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 January 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 January 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This study received ethical approval from the Institutional Ethics Committee of SEWA Rural (SEWARural IEC\/01 dated 09\/08\/2023). All procedures were conducted in accordance with ethical standards, both at the institutional and national levels, and aligned with the Helsinki Declaration of 1975, as revised in 2000. Prior to participation, all potential participants were fully informed about the study's objectives, procedures, and their right to withdraw at any time. Of the total individuals contacted, two individuals did not participate. Written informed consent was obtained from all participants. The privacy and confidentiality of all participant data were strictly maintained throughout the study.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Apurvakumar Pandya declare that he has no conflicts of interest. Apurvakumar Pandya has received research grants from SEWA Rural (Agreement-01\u201320\/06\/2023). Shrey Desai, and Gayatri Desai are trustee of SEWA Rural, Jhagadia. Kapil Dave is an employee of SEWA Rural, Jhagadia. SEWA Rural is a charitable organization who operates a hospital in Jhagadia, Bharuch District, Gujarat state, India. This study's data collection, data analysis, and interpretation of results was solely performed by Apurvakumar Pandya. Kapil Dave, Shrey Desai, and Gayatri Desai, who are affiliated with SEWA Rural, have not influenced the research process, data analysis, and interpretation of results.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing Interests"}}]}}