{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T15:31:53Z","timestamp":1788881513111,"version":"build-2803163510"},"reference-count":46,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2020,3,23]],"date-time":"2020-03-23T00:00:00Z","timestamp":1584921600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Health (London)"],"published-print":{"date-parts":[[2021,11]]},"abstract":"<jats:p>Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life. In this analysis, we qualitatively explore the narratives shared in Canadians\u2019 crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms. Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing). These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one\u2019s financial need. This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform. It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.<\/jats:p>","DOI":"10.1177\/1363459320912808","type":"journal-article","created":{"date-parts":[[2020,3,23]],"date-time":"2020-03-23T07:04:46Z","timestamp":1584947086000},"page":"707-721","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":14,"title":["What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease"],"prefix":"10.1177","volume":"25","author":[{"given":"Anika","family":"Vassell","sequence":"first","affiliation":[{"name":"Simon Fraser University, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2834-0213","authenticated-orcid":false,"given":"Valorie A","family":"Crooks","sequence":"additional","affiliation":[{"name":"Simon Fraser University, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeremy","family":"Snyder","sequence":"additional","affiliation":[{"name":"Simon Fraser University, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2020,3,23]]},"reference":[{"key":"bibr1-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1080\/17512786.2010.551018"},{"key":"bibr2-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1089\/trgh.2018.0044"},{"key":"bibr3-1363459320912808","unstructured":"Barclay E (2012) The sick turn to crowdfunding to pay medical bills. National Public Radio Shots Blog, 24 October. Available at: http:\/\/www.npr.org\/sections\/health-shots\/2012\/10\/23\/163489063\/the-sick-turn-to-crowdfunding-to-pay-medical-bills"},{"key":"bibr4-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2017.02.008"},{"issue":"7","key":"bibr5-1363459320912808","first-page":"693","volume":"56","author":"Bouchard C","year":"2015","journal-title":"The Canadian Veterinary Journal = La Revue Veterinaire Canadienne"},{"key":"bibr6-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"bibr7-1363459320912808","volume-title":"Paper presented at 35th international conference on information systems: Building a better world through information systems, ICIS 2014","author":"Burtch G","year":"2014"},{"key":"bibr8-1363459320912808","unstructured":"Caruso C (2017) Tests for Lyme disease miss many early cases \u2013 But a new approach could help. Stat News. Available at: https:\/\/www.statnews.com\/2017\/06\/28\/early-lyme-tests\/"},{"key":"bibr9-1363459320912808","unstructured":"Centers for Disease Control and Prevention (CDC) (2018) Lyme disease. Available at: https:\/\/www.cdc.gov\/lyme\/index.html"},{"key":"bibr10-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1136\/medhum-2013-010488"},{"key":"bibr11-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1177\/1742395315573165"},{"key":"bibr12-1363459320912808","doi-asserted-by":"publisher","DOI":"10.4304\/jait.2.4.204-216"},{"key":"bibr13-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1016\/j.pubrev.2017.10.001"},{"key":"bibr14-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2017-104717"},{"key":"bibr15-1363459320912808","first-page":"46","volume":"3","author":"Eogden N","year":"2013","journal-title":"Frontiers in Cellular and Infection Microbiology"},{"key":"bibr16-1363459320912808","unstructured":"GoFundMe (2016) GoFundMe in Canada. GoFundMe Blog, 7 December. Available at: https:\/\/www.gofundme.com\/blog\/2016\/12\/07\/gofundme-in-canada\/"},{"key":"bibr17-1363459320912808","unstructured":"GoFundMe (2019) Medical Fundraising Tips: Financial Support When You Need It. GoFundMe. Available at: https:\/\/www.gofundme.com\/c\/fundraising-tips\/medical"},{"key":"bibr18-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1177\/1461444816667723"},{"key":"bibr19-1363459320912808","unstructured":"Government of Canada (2018a) Canada Health Act. Available at: https:\/\/laws-lois.justice.gc.ca\/eng\/acts\/c-6\/page-1.html"},{"key":"bibr20-1363459320912808","unstructured":"Government of Canada (2018b) For health professionals: Lyme disease. Available at: https:\/\/www.canada.ca\/en\/public-health\/services\/diseases\/lyme-disease\/health-professionals-lyme-disease.html"},{"key":"bibr21-1363459320912808","volume-title":"Lyme Disease in Canada: An Update on Case Definitions and Treatments","author":"Habegger S","year":"2014"},{"key":"bibr22-1363459320912808","unstructured":"Kling R, Galanis E, Morshed M, et al. (2015) Diagnostic testing for Lyme disease: Beware of false positives. BCMJ 57(9). Available at: https:\/\/www.bcmj.org\/bccdc\/diagnostic-testing-lyme-disease-beware-false-positives"},{"key":"bibr23-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1111\/cars.12210"},{"key":"bibr24-1363459320912808","unstructured":"Maguire M, Delahunt B (2017) Doing a thematic analysis: A practical, step-by-step guide for learning and teaching scholars. AISHE-J: The All Ireland Journal of Teaching and Learning in Higher Education 9(3). Available at: https:\/\/ojs.aishe.org\/index.php\/aishe-j\/article\/view\/335\/553"},{"key":"bibr25-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbusvent.2013.06.005"},{"key":"bibr26-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1111\/bioe.12527"},{"key":"bibr27-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0198509"},{"key":"bibr28-1363459320912808","unstructured":"Omand G (2015) New era of altruism: Are crowdfunding initiatives self-motivated? CTV News. Available at: https:\/\/www.ctvnews.ca\/canada\/new-era-of-altruism-are-crowdfunding-initiatives-self-motivated-1.2261370"},{"key":"bibr29-1363459320912808","unstructured":"Pelley L (2017) Lyme disease on the rise in Canada, but doctors still confused about diagnosis. CBC News. Available at: https:\/\/www.cbc.ca\/news\/canada\/toronto\/lyme-disease-canada-1.4262478"},{"key":"bibr30-1363459320912808","unstructured":"Petrow E (2018) Saskatoon women frustrated with provincial testing methods for Lyme disease. CBC. Saskatoon Starphonix. Available at: https:\/\/thestarphoenix.com\/news\/local-news\/lyme-disease"},{"key":"bibr31-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1007\/s11013-013-9340-0"},{"key":"bibr32-1363459320912808","unstructured":"Scales D (2017) Science shortfall: Why don\u2019t we know how best to fight ticks and Lyme disease? Available at: https:\/\/www.wbur.org\/commonhealth\/2017\/07\/14\/science-fighting-ticks-lyme"},{"key":"bibr33-1363459320912808","unstructured":"Scales D (2018) What I\u2019ve learned reporting about Lyme disease, a contested illness. Columbia Journalism Review. Available at: https:\/\/www.cjr.org\/analysis\/lyme-disease-contested-illness-empathy.php"},{"key":"bibr34-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1136\/jmh.2011.007328"},{"key":"bibr35-1363459320912808","unstructured":"Smith E (2017) Lyme disease diagnosis may be delayed due to \u2018mysterious\u2019 symptoms, doctor warns. CBC News. Available at: https:\/\/www.cbc.ca\/news\/canada\/nova-scotia\/lyme-disease-nova-scotia-lunenburg-county-diagnosis-1.4202213"},{"key":"bibr36-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1002\/hast.645"},{"key":"bibr37-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(17)30259-0"},{"key":"bibr38-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1136\/medethics-2016-103933"},{"key":"bibr39-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2016.09.024"},{"key":"bibr40-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2018.3057"},{"issue":"2","key":"bibr41-1363459320912808","first-page":"101","volume":"10","author":"Stone L","year":"2013","journal-title":"Mental Health in Family Medicine"},{"key":"bibr42-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1186\/s12875-014-0192-7"},{"key":"bibr43-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1177\/1363459308094420"},{"key":"bibr44-1363459320912808","volume-title":"Global Crowdfunding Market 2018\u20132022","author":"Technavio","year":"2018"},{"key":"bibr45-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2018.10264"},{"key":"bibr46-1363459320912808","doi-asserted-by":"publisher","DOI":"10.1002\/poi3.188"}],"container-title":["Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1363459320912808","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1363459320912808","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1363459320912808","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T07:31:06Z","timestamp":1777447866000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1363459320912808"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,3,23]]},"references-count":46,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2021,11]]}},"alternative-id":["10.1177\/1363459320912808"],"URL":"https:\/\/doi.org\/10.1177\/1363459320912808","relation":{},"ISSN":["1363-4593","1461-7196"],"issn-type":[{"value":"1363-4593","type":"print"},{"value":"1461-7196","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,3,23]]}}}