{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T09:02:42Z","timestamp":1790845362168,"version":"4.1.0"},"reference-count":38,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,11,29]],"date-time":"2025-11-29T00:00:00Z","timestamp":1764374400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,1,5]],"date-time":"2026-01-05T00:00:00Z","timestamp":1767571200000},"content-version":"vor","delay-in-days":37,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100011960","name":"Debra International","doi-asserted-by":"publisher","award":["Debra International"],"award-info":[{"award-number":["Debra International"]}],"id":[{"id":"10.13039\/501100011960","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100002825","name":"Dystrophic Epidermolysis Bullosa Research Association of America","doi-asserted-by":"publisher","award":["Dystrophic Epidermolysis Bullosa Research Association of America"],"award-info":[{"award-number":["Dystrophic Epidermolysis Bullosa Research Association of America"]}],"id":[{"id":"10.13039\/100002825","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100001075","name":"Channel 7 Children's Research Foundation","doi-asserted-by":"publisher","award":["Channel 7 Children's Research Foundation"],"award-info":[{"award-number":["Channel 7 Children's Research Foundation"]}],"id":[{"id":"10.13039\/501100001075","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Inherited epidermolysis bullosa (EB) is a rare, incurable genodermatosis characterised with recurrent skin blistering and mucosal fragility. Wound care and nursing are critical to everyday lives of children living with EB, while the profound effect of caring for a child with a painful genetic condition leaves a significant effect on quality of life of parents and the family. This study aimed to better understand the lived experiences and supportive care needs of parents of children with EB in Australia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Interpretative phenomenological analysis was used, and semi structured focus groups interviews were conducted with Australian parents of children with EB. This included 18 parents of children with EB simplex (EBS), 9 parents of children with Junctional EB (JEB) and 16 parents of children with Dystrophic EB (DEB). The data were thematically analysed, all participants are residents of Australia and therefore reflect the services in this geographical location.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Six overarching themes included: practical needs, emotional needs, informational needs, psychological needs, social needs and physical needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Parents caring for a child with EB in Australia face numerous needs and challenges regardless of EB severity which highlights the need for provision of better more comprehensive services to deliver family focused holistic EB care that can alleviate some of the burden of EB and improve the quality of life for families and individuals living with EB.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-025-04159-4","type":"journal-article","created":{"date-parts":[[2025,11,29]],"date-time":"2025-11-29T06:36:20Z","timestamp":1764398180000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["The lived experience and supportive care needs of Australian parents caring for children with Epidermolysis Bullosa: a qualitative descriptive analysis"],"prefix":"10.1186","volume":"21","author":[{"given":"Hayley","family":"Ruf","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Colin J.","family":"Ireland","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lemuel J.","family":"Pelentsov","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8072-4222","authenticated-orcid":false,"given":"Zlatko","family":"Kopecki","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,11,29]]},"reference":[{"key":"4159_CR1","unstructured":"Stevens LJ, McKenna S, Marty J, Cowin AJ, Kopecki Z. Understanding the outcomes of a home nursing programme for patients with epidermolysis bullosa: an Australian perspective. Int Wound J. 2016."},{"key":"4159_CR2","doi-asserted-by":"crossref","unstructured":"Has C, Bauer JW, Bodemer C, Bolling MC, Bruckner-Tuderman L, Diem A, et al. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility. Br J Dermatol. (1951). 2020;183(4):614\u2009\u2013\u200927.","DOI":"10.1111\/bjd.18921"},{"issue":"12","key":"4159_CR3","doi-asserted-by":"publisher","first-page":"2349","DOI":"10.1111\/jdv.17629","volume":"35","author":"C Has","year":"2021","unstructured":"Has C, El Hachem M, Bu\u010dkov\u00e1 H, Fischer P, Friedov\u00e1 M, Greco C, et al. Practical management of epidermolysis bullosa: consensus clinical position statement from the European reference network for rare skin diseases. J Eur Acad Dermatol Venereol. 2021;35(12):2349\u201360.","journal-title":"J Eur Acad Dermatol Venereol"},{"issue":"8","key":"4159_CR4","doi-asserted-by":"publisher","first-page":"2059","DOI":"10.1007\/s13555-024-01227-8","volume":"14","author":"S Danescu","year":"2024","unstructured":"Danescu S, Negrutiu M, Has C. Treatment of epidermolysis Bullosa and future directions: A review. Dermatology Therapy. 2024;14(8):2059\u201375.","journal-title":"Dermatology Therapy"},{"issue":"1","key":"4159_CR5","doi-asserted-by":"publisher","first-page":"70","DOI":"10.2340\/00015555-2781","volume":"98","author":"M Kim","year":"2018","unstructured":"Kim M, Li M, Intong-Wheeler LRA, Tran K, Marucci D, Murrell DF. Epidemiology and outcome of squamous cell carcinoma in epidermolysis Bullosa in Australia and new Zealand. Acta dermato-venereologica. 2018;98(1):70\u20136.","journal-title":"Acta dermato-venereologica"},{"key":"4159_CR6","doi-asserted-by":"publisher","first-page":"224","DOI":"10.1016\/j.jdin.2023.02.016","volume":"11","author":"JE Mellerio","year":"2023","unstructured":"Mellerio JE, Kiritsi D, Marinkovich MP, Haro NR, Badger K, Arora M, et al. Mapping the burden of severe forms of epidermolysis bullosa \u2013 Implications for patient management. JAAD Int. 2023;11:224\u201332.","journal-title":"JAAD Int"},{"issue":"6","key":"4159_CR7","doi-asserted-by":"publisher","first-page":"801","DOI":"10.1007\/s40257-021-00626-3","volume":"22","author":"P-C Hou","year":"2021","unstructured":"Hou P-C, Wang H-T, Abhee S, Tu W-T, McGrath JA. Hsu C-K. Investigational treatments for epidermolysis Bullosa. Am J Clin Dermatol. 2021;22(6):801\u201317.","journal-title":"Am J Clin Dermatol"},{"issue":"1","key":"4159_CR8","doi-asserted-by":"publisher","first-page":"175","DOI":"10.1186\/s13023-021-01811-7","volume":"16","author":"JY Tang","year":"2021","unstructured":"Tang JY, Marinkovich MP, Lucas E, Gorell E, Chiou A, Lu Y, et al. A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis Bullosa. Orphanet J Rare Dis. 2021;16(1):175.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"4159_CR9","doi-asserted-by":"publisher","first-page":"270","DOI":"10.1186\/s13023-022-02433-3","volume":"17","author":"JY So","year":"2022","unstructured":"So JY, Fulchand S, Wong CY, Li S, Nazaroff J, Gorell ES, et al. A global, cross-sectional survey of patient-reported outcomes, disease burden, and quality of life in epidermolysis Bullosa simplex. Orphanet J Rare Dis. 2022;17(1):270.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"4159_CR10","doi-asserted-by":"publisher","first-page":"211","DOI":"10.1186\/s13023-024-03163-4","volume":"19","author":"G Salamon","year":"2024","unstructured":"Salamon G, Field-Werners U, Strobl S, H\u00fcbl V, Diem A. Facing the complex challenges of people with epidermolysis Bullosa in austria: a mixed methods study on burdens and helpful practices. Orphanet J Rare Dis. 2024;19(1):211.","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"4159_CR11","first-page":"2355","volume":"28","author":"AV Chateau","year":"2023","unstructured":"Chateau AV, Aldous C, Dlova N, Blackbeard D. It breaks my heart\u2019: healthcare practitioners\u2019 caring for families with epidermolysis Bullosa. Health SA = SA Gesondheid. 2023;28(3):2355.","journal-title":"Health SA = SA Gesondheid"},{"issue":"1","key":"4159_CR12","doi-asserted-by":"publisher","first-page":"76","DOI":"10.1186\/1750-1172-9-76","volume":"9","author":"M El Hachem","year":"2014","unstructured":"El Hachem M, Zambruno G, Bourdon-Lanoy E, Ciasulli A, Buisson C, Hadj-Rabia S, et al. Multicentre consensus recommendations for skin care in inherited epidermolysis Bullosa. Orphanet J Rare Dis. 2014;9(1):76.","journal-title":"Orphanet J Rare Dis"},{"issue":"6","key":"4159_CR13","doi-asserted-by":"publisher","first-page":"1405","DOI":"10.1111\/bjd.14072","volume":"173","author":"H Dufresne","year":"2015","unstructured":"Dufresne H, Hadj-Rabia S, Taieb C, Bodemer C. Development and validation of an epidermolysis Bullosa family\/parental burden score. Br J Dermatol. 2015;173(6):1405\u201310.","journal-title":"Br J Dermatol"},{"issue":"1","key":"4159_CR14","doi-asserted-by":"publisher","first-page":"76","DOI":"10.1186\/s13052-024-01657-2","volume":"50","author":"M El Hachem","year":"2024","unstructured":"El Hachem M, Diociaiuti A, Zambruno G, Samela T, Ferretti F, Carnevale C, et al. Quality of life in epidermolysis Bullosa and epidermolysis Bullosa burden of disease: Italian translation, cultural adaptation, and pilot testing of two disease-specific questionnaires. Ital J Pediatr. 2024;50(1):76.","journal-title":"Ital J Pediatr"},{"issue":"1","key":"4159_CR15","doi-asserted-by":"publisher","first-page":"133","DOI":"10.1186\/s13023-019-1086-5","volume":"14","author":"K Martin","year":"2019","unstructured":"Martin K, Geuens S, Asche JK, Bodan R, Browne F, Downe A, et al. Psychosocial recommendations for the care of children and adults with epidermolysis Bullosa and their family: evidence based guidelines. Orphanet J Rare Dis. 2019;14(1):133.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"4159_CR16","doi-asserted-by":"publisher","first-page":"313","DOI":"10.1186\/s13023-022-02462-y","volume":"17","author":"PJ Mauritz","year":"2022","unstructured":"Mauritz PJ, Bolling M, Duipmans JC, Hagedoorn M. Patients\u2019 and parents\u2019 experiences during wound care of epidermolysis Bullosa from a dyadic perspective: a survey study. Orphanet J Rare Dis. 2022;17(1):313.","journal-title":"Orphanet J Rare Dis"},{"issue":"4","key":"4159_CR17","doi-asserted-by":"publisher","first-page":"459","DOI":"10.1111\/ijd.16197","volume":"62","author":"AV Chateau","year":"2023","unstructured":"Chateau AV, Blackbeard D, Aldous C. The impact of epidermolysis Bullosa on the family and healthcare practitioners: a scoping review. Int J Dermatol. 2023;62(4):459\u201375.","journal-title":"Int J Dermatol"},{"issue":"1","key":"4159_CR18","doi-asserted-by":"publisher","first-page":"492","DOI":"10.1186\/s13023-024-03502-5","volume":"19","author":"E Daae","year":"2024","unstructured":"Daae E, Feragen KB, Naerland T, von der Lippe C. When care hurts: parents\u2019 experiences of caring for a child with epidermolysis Bullosa. Orphanet J Rare Dis. 2024;19(1):492.","journal-title":"Orphanet J Rare Dis"},{"key":"4159_CR19","doi-asserted-by":"publisher","first-page":"425","DOI":"10.2147\/JMDH.S113898","volume":"9","author":"LJ Pelentsov","year":"2016","unstructured":"Pelentsov LJ, Fielder AL, Laws TA, Esterman AJ. Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease. J Multidiscip Healthc. 2016;9:425\u201333.","journal-title":"J Multidiscip Healthc"},{"issue":"4","key":"4159_CR20","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1016\/j.dhjo.2015.03.009","volume":"8","author":"LJ Pelentsov","year":"2015","unstructured":"Pelentsov LJ, Laws TA, Esterman AJ. The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disabil Health J. 2015;8(4):475\u201391.","journal-title":"Disabil Health J"},{"key":"4159_CR21","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1016\/j.pedn.2025.01.003","volume":"81","author":"S Somanadhan","year":"2025","unstructured":"Somanadhan S, McAneney H, Awan A, McNulty S, Sweeney A, Buckle N, et al. Assessing the supportive care needs of parents of children with rare diseases in Ireland. J Pediatr Nurs. 2025;81:31\u201342.","journal-title":"J Pediatr Nurs"},{"issue":"5","key":"4159_CR22","doi-asserted-by":"publisher","first-page":"831","DOI":"10.1111\/hae.13826","volume":"25","author":"K Khair","year":"2019","unstructured":"Khair K, Pelentsov L. Assessing the supportive care needs of parents with a child with a bleeding disorder using the parental needs scale for rare diseases (PNS-RD): A single-centre pilot study. Haemophilia. 2019;25(5):831\u20137.","journal-title":"Haemophilia"},{"issue":"1","key":"4159_CR23","doi-asserted-by":"publisher","first-page":"129","DOI":"10.1186\/s13023-024-03125-w","volume":"19","author":"L Johansen","year":"2024","unstructured":"Johansen L, O\u2019Hare F, Shepard ER, Ayton LN, Pelentsov LJ, Kearns LS, et al. Exploring the support needs of Australian parents of young children with Usher syndrome: a qualitative thematic analysis. Orphanet J Rare Dis. 2024;19(1):129.","journal-title":"Orphanet J Rare Dis"},{"key":"4159_CR24","doi-asserted-by":"crossref","unstructured":"Ireland C, Pelentsov L, Kopecki Z. Caring for a child with epidermolysis bullosa: a scoping review on the family impacts and support needs. Wound Pract Res. 2021;29(2).","DOI":"10.33235\/wpr.29.2.86-97"},{"issue":"2","key":"4159_CR25","doi-asserted-by":"publisher","first-page":"122","DOI":"10.1111\/ajd.12431","volume":"58","author":"AG Harris","year":"2017","unstructured":"Harris AG, Todes-Taylor NR, Petrovi\u0107 N, Murrell DF. The distribution of epidermolysis Bullosa in Australia with a focus on rural and remote areas. Australas J Dermatol. 2017;58(2):122\u20135.","journal-title":"Australas J Dermatol"},{"issue":"2","key":"4159_CR26","doi-asserted-by":"publisher","first-page":"368","DOI":"10.1111\/hex.13006","volume":"23","author":"S Kearney","year":"2020","unstructured":"Kearney S, Donohoe A, McAuliffe E. Living with epidermolysis bullosa: daily challenges and health-care needs. Health Expect. 2020;23(2):368\u201376.","journal-title":"Health Expect"},{"key":"4159_CR27","doi-asserted-by":"crossref","unstructured":"Sandelowski M. Whatever happened to qualitative description? Research in nursing & health. 2000;23(4):334\u2009\u2013\u200940.","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G"},{"key":"4159_CR28","doi-asserted-by":"crossref","unstructured":"Lathlean J, Denicolo P, Collecting analyzing, and interpreting qualitative data. Thousand Oaks, California. 2022. Available from: https:\/\/sk.sagepub.com\/skills\/student-success\/collect-analyze-interpret-qualitative-data","DOI":"10.4135\/9781071885765"},{"issue":"2","key":"4159_CR29","doi-asserted-by":"publisher","first-page":"69","DOI":"10.12968\/ijtr.2008.15.2.28189","volume":"15","author":"P Plummer-D\u2019Amato","year":"2008","unstructured":"Plummer-D\u2019Amato P. Focus group methodology part 1: considerations for design. Int J Therapy Rehabilitation. 2008;15(2):69\u201373.","journal-title":"Int J Therapy Rehabilitation"},{"issue":"1","key":"4159_CR30","doi-asserted-by":"publisher","first-page":"58","DOI":"10.1186\/s13052-022-01252-3","volume":"48","author":"C Retrosi","year":"2022","unstructured":"Retrosi C, Diociaiuti A, De Ranieri C, Corbeddu M, Carnevale C, Giancristoforo S, et al. Multidisciplinary care for patients with epidermolysis Bullosa from birth to adolescence: experience of one Italian reference center. Ital J Pediatr. 2022;48(1):58.","journal-title":"Ital J Pediatr"},{"issue":"9\u201310","key":"4159_CR31","doi-asserted-by":"publisher","first-page":"1552","DOI":"10.1111\/jocn.15209","volume":"29","author":"YH Wu","year":"2020","unstructured":"Wu YH, Sun FK, Lee PY. Family caregivers\u2019 lived experiences of caring for epidermolysis Bullosa patients: A phenomenological study. J Clin Nurs. 2020;29(9\u201310):1552\u201360.","journal-title":"J Clin Nurs"},{"issue":"6","key":"4159_CR32","doi-asserted-by":"publisher","first-page":"758","DOI":"10.1002\/mgg3.315","volume":"5","author":"C Lippe","year":"2017","unstructured":"Lippe C, Diesen PS, Feragen KB. Living with a rare disorder: a systematic review of the qualitative literature. Mol Genet Genom Med. 2017;5(6):758\u201373.","journal-title":"Mol Genet Genom Med"},{"issue":"1","key":"4159_CR33","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s13023-019-1279-y","volume":"15","author":"AL Bruckner","year":"2020","unstructured":"Bruckner AL, Losow M, Wisk J, Patel N, Reha A, Lagast H, et al. The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers. Orphanet J Rare Dis. 2020;15(1):1.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"4159_CR34","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1186\/s13023-024-03475-5","volume":"20","author":"G Salamon","year":"2025","unstructured":"Salamon G, Strobl S, Matschnig M-S, Diem A. The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients\u2019 perspective. Orphanet J Rare Dis. 2025;20(1):3.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"4159_CR35","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s13023-023-02870-8","volume":"18","author":"MP Popenhagen","year":"2023","unstructured":"Popenhagen MP, Genovese P, Blishen M, Rajapakse D, Diem A, King A, et al. Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis Bullosa. Orphanet J Rare Dis. 2023;18(1):1\u2013268.","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"4159_CR36","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1186\/s13023-024-03397-2","volume":"19","author":"R Saad","year":"2024","unstructured":"Saad R, Pysar R, Blackwell A. Rare disease focused antenatal education and diagnosis support: two case studies of epidermolysis Bullosa simplex. Orphanet J Rare Dis. 2024;19(1):377\u20135.","journal-title":"Orphanet J Rare Dis"},{"key":"4159_CR37","doi-asserted-by":"crossref","unstructured":"Baumbusch J, Mayer S, Sloan-Yip I. Alone in a Crowd? Parents of children with rare diseases\u2019 experiences of navigating the healthcare system. J Genet Couns. 2018.","DOI":"10.1007\/s10897-018-0294-9"},{"issue":"6","key":"4159_CR38","doi-asserted-by":"publisher","first-page":"1251","DOI":"10.1111\/hex.12958","volume":"22","author":"G Currie","year":"2019","unstructured":"Currie G, Szabo J. It would be much easier if we were just quiet and disappeared\u2019: parents silenced in the experience of caring for children with rare diseases. Health Expect. 2019;22(6):1251\u20139.","journal-title":"Health Expect"}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-025-04159-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13023-025-04159-4","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-025-04159-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,5]],"date-time":"2026-01-05T16:58:48Z","timestamp":1767632328000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s13023-025-04159-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11,29]]},"references-count":38,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["4159"],"URL":"https:\/\/doi.org\/10.1186\/s13023-025-04159-4","relation":{},"ISSN":["1750-1172"],"issn-type":[{"value":"1750-1172","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11,29]]},"assertion":[{"value":"25 March 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 November 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 November 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":"Ethical approval for this study was obtained from the University of South Australia Human Research Ethics Committee (#201982). Written informed consent was obtained from parents prior to their inclusion in the study.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"All study participants provided written informed consent for their data to be used and published in this study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to publish"}},{"value":"ZK is a volunteer for DERBA Australia and DEBRA International in a non-financial capacity.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing Interests"}}],"article-number":"3"}}