{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,24]],"date-time":"2026-10-24T01:47:44Z","timestamp":1792806464655,"version":"4.5.0"},"reference-count":55,"publisher":"MDPI AG","issue":"15","license":[{"start":{"date-parts":[[2021,8,2]],"date-time":"2021-08-02T00:00:00Z","timestamp":1627862400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001797","name":"Curtin University of Technology","doi-asserted-by":"publisher","award":["RTS"],"award-info":[{"award-number":["RTS"]}],"id":[{"id":"10.13039\/501100001797","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Solaris Cancer Care","award":["na"],"award-info":[{"award-number":["na"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Purpose: Preparation for head and neck cancer treatment is focused on practicalities of treatment. Little or no time is spent prior to treatment discussing aesthetic results of treatment or the psychosocial impact of living with an altered appearance after treatment. The objective of this study was to explore the experiences of survivors of head and neck cancers, with a focus on the psychosocial impact of altered appearance. Methods: A qualitative research approach based on social constructionist theory was used. Twenty-one semi-structured interviews were conducted with survivors of head and neck cancer who had been diagnosed in the previous six years. Thematic analysis was used to identify themes. Results: People diagnosed with HNC reported feeling rushed into treatment, with adequate procedural preparation but little or no preparation related to appearance. The main themes included: Preparation (sub-themes: Decision-making; and Preparation for Altered Appearance); Altered Appearance (sub-themes: Weight Loss; Face, Skin and Hair Changes; and Reconstructive Surgery); and Consequences (sub-themes Reactions from Others; Adapting to Altered Appearance). Conclusions: Body image distress related to altered appearance, contributed to psychosocial issues for many people diagnosed with head and neck cancer. Current practice provides information pre-treatment about many aspects of coping; however, the subject of appearance is not routinely addressed. Communication skills training for health professionals that improves their comfort and sensitivity in discussing and conveying compassion around issues of altered appearance, body image, and trauma, is needed to decrease suffering for survivors, support healthy adaptation to living with altered appearance, and increase their satisfaction with health care.<\/jats:p>","DOI":"10.3390\/cancers13153893","type":"journal-article","created":{"date-parts":[[2021,8,2]],"date-time":"2021-08-02T08:44:11Z","timestamp":1627893851000},"page":"3893","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":36,"title":["\u2018I Didn\u2019t Even Recognise Myself\u2019: Survivors\u2019 Experiences of Altered Appearance and Body Image Distress during and after Treatment for Head and Neck Cancer"],"prefix":"10.3390","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1147-6608","authenticated-orcid":false,"given":"Chandrika","family":"Gibson","sequence":"first","affiliation":[{"name":"Curtin School of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6845, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Moira","family":"O\u2019Connor","sequence":"additional","affiliation":[{"name":"WA Cancer Prevention Research Unit (WACPRU), School of Population Health, Faculty of Health Sciences, Curtin University, Perth, WA 6845, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rohen","family":"White","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Sir Charles Gairdner Hospital, Nedlands, WA 6845, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melanie","family":"Jackson","sequence":"additional","affiliation":[{"name":"GenesisCare Perth Radiation Oncologist, Wembley, WA 6014, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siddhartha","family":"Baxi","sequence":"additional","affiliation":[{"name":"GenesisCare Gold Coast Radiation Oncologist, John Flynn Hospital, Tugun, QLD 4224, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4065-4044","authenticated-orcid":false,"given":"Georgia K. B.","family":"Halkett","sequence":"additional","affiliation":[{"name":"Curtin School of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6845, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,8,2]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"73","DOI":"10.1300\/J010v40n02_05","article-title":"Facial Disfigurement and Sense of Self in Head and Neck Cancer","volume":"40","author":"Callahan","year":"2005","journal-title":"Soc. Work. Health Care"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"717","DOI":"10.2217\/14796694.4.5.717","article-title":"Stigma in cancer patients whose behavior may have contributed to their disease","volume":"4","author":"Lebel","year":"2008","journal-title":"Futur. Oncol."},{"key":"ref_3","first-page":"S48","article-title":"Psychological distress (depression and anxiety) in people with head and neck cancers","volume":"193","author":"Pollard","year":"2010","journal-title":"Med. J. Aust."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"42","DOI":"10.1017\/S1478951515000711","article-title":"Persistence of psychological distress and correlated factors among patients with head and neck cancer","volume":"14","author":"Ichikura","year":"2015","journal-title":"Palliat. Support. Care"},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"2648","DOI":"10.1002\/pon.3343","article-title":"The psychological experience of living with head and neck cancer: A systematic review and meta-synthesis","volume":"22","author":"Lang","year":"2013","journal-title":"Psychooncology"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"559","DOI":"10.1097\/01.prs.0000267584.66732.e5","article-title":"Psychosocial Implications of Disfigurement and the Future of Human Face Transplantation","volume":"120","author":"Furr","year":"2007","journal-title":"Plast. Reconstr. Surg."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"1988","DOI":"10.1002\/pon.5399","article-title":"Evaluation of a novel telemedicine-based intervention to manage body image disturbance in head and neck cancer survivors","volume":"29","author":"Graboyes","year":"2020","journal-title":"Psychooncology"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"20553","DOI":"10.1200\/jco.2008.26.15_suppl.20553","article-title":"Long-term quality of life and psychological response after flap reconstructive surgery and radiotherapy in head and neck cancer patients","volume":"26","author":"Garzaro","year":"2008","journal-title":"J. Clin. Oncol."},{"key":"ref_9","first-page":"15","article-title":"Facing Disfigurement: Understanding Body Image Adaptation Following Surgical Treatment for Head and Neck Cancer","volume":"23","author":"Fingeret","year":"2014","journal-title":"Psychooncology"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"336","DOI":"10.1080\/07347332.2016.1195901","article-title":"Unmet needs and relationship challenges of head and neck cancer patients and their spouses","volume":"34","author":"Badr","year":"2016","journal-title":"J. Psychosoc. Oncol."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1002\/pon.2063","article-title":"The psychosocial impact of stigma in people with head and neck or lung cancer","volume":"22","author":"Lebel","year":"2011","journal-title":"Psychooncology"},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"157","DOI":"10.1111\/ecc.12320","article-title":"Cancer-related trauma, stigma and growth: The \u2018lived\u2019 experience of head and neck cancer","volume":"25","author":"Threader","year":"2016","journal-title":"Eur. J. Cancer Care"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"1243","DOI":"10.1177\/1359105315624751","article-title":"People living with facial disfigurement after having had noma disease: A systematic review of the literature","volume":"22","author":"Wali","year":"2017","journal-title":"J. Health Psychol."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"285","DOI":"10.1007\/s10746-017-9426-8","article-title":"Facing a Disruptive Face: Embodiment in the Everyday Experiences of \u201cDisfigured\u201d Individuals","volume":"40","author":"Yaron","year":"2017","journal-title":"Hum. Stud."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"99","DOI":"10.1177\/1359105310368448","article-title":"The Role of Identity in Adjustment among Survivors of Oesophageal Cancer","volume":"16","author":"Clarke","year":"2011","journal-title":"J. Health Psychol."},{"key":"ref_16","unstructured":"Dropkin, M.J. (1994). Anxiety, Problem-Focused Coping Strategies, Disfigurement\/Dysfunction and Postoperative Coping Behaviors Associated with Head and Neck Cancer. [Ph.D. Thesis, New York University]."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1001","DOI":"10.1111\/jan.12892","article-title":"Body image disturbance in adults treated for cancer\u2014A concept analysis","volume":"72","author":"Rhoten","year":"2016","journal-title":"J. Adv. Nurs."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"179","DOI":"10.12968\/ijpn.2000.6.4.8931","article-title":"Altered body image: Managing social encounters","volume":"6","author":"Price","year":"2000","journal-title":"Int. J. Palliat. Nurs."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"386","DOI":"10.1054\/bjps.1999.3273","article-title":"Psychological difficulties amongst plastic surgery ex-patients following surgery tothe face: A survey","volume":"53","author":"Newell","year":"2000","journal-title":"Br. J. Plast. Surg."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"514","DOI":"10.1007\/s004050100380","article-title":"Investigating quality of life and coping resources after laryngectomy","volume":"258","author":"Relic","year":"2001","journal-title":"Eur. Arch. Oto-Rhino-Laryngol."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"20","DOI":"10.7748\/cnp.2018.e1449","article-title":"A new normal: Reconciling change in appearance and function for men with head and neck cancer","volume":"17","author":"Rennie","year":"2018","journal-title":"Cancer Nurs. Pract."},{"key":"ref_22","doi-asserted-by":"crossref","unstructured":"Norman, A., and Moss, T.P. (2015). Psychosocial interventions for adults with visible differences: A systematic review. PeerJ, 3.","DOI":"10.7717\/peerj.870"},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1111\/j.1365-2354.2005.00643.x","article-title":"Patients with head and neck cancer prefer individualized cognitive behavioural therapy","volume":"15","author":"Semple","year":"2006","journal-title":"Eur. J. Cancer Care"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"434","DOI":"10.1097\/00002820-200411000-00002","article-title":"Psychosocial Interventions for Patients with Head and Neck Cancer","volume":"27","author":"Semple","year":"2004","journal-title":"Cancer Nurs."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"482","DOI":"10.1002\/pon.816","article-title":"Results of a feasibility study for a psycho-educational intervention in head and neck cancer","volume":"13","author":"Allison","year":"2004","journal-title":"Psychooncology"},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"871","DOI":"10.1007\/s00520-011-1119-7","article-title":"Evidence for interventions to improve psychological outcomes in people with head and neck cancer: A systematic review of the literature","volume":"19","author":"Luckett","year":"2011","journal-title":"Support. Care Cancer"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"1643","DOI":"10.1007\/s00520-020-05627-2","article-title":"Pre-treatment psychoeducational intervention and outcomes in head and neck cancer patients undergoing radiotherapy","volume":"29","author":"Malik","year":"2021","journal-title":"Support. Care Cancer"},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"260","DOI":"10.1097\/SLA.0000000000002723","article-title":"Achievements and Challenges in Facial Transplantation","volume":"268","author":"Rifkin","year":"2018","journal-title":"Ann. Surg."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"101881","DOI":"10.1016\/j.ejon.2020.101881","article-title":"Burnout or Fade Away; experiences of health professionals caring for patients with head and neck cancer","volume":"50","author":"Gibson","year":"2021","journal-title":"Eur. J. Oncol. Nurs."},{"key":"ref_30","doi-asserted-by":"crossref","unstructured":"Given, L.M. (2008). SAGE Encyclopedia of Qualitative Research Methods, Sage Publications.","DOI":"10.4135\/9781412963909"},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1080\/17439760.2016.1262613","article-title":"Thematic analysis","volume":"12","author":"Clarke","year":"2017","journal-title":"J. Posit. Psychol."},{"key":"ref_32","unstructured":"Strauss, A.L. (1998). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory\/Anselm Strauss, Juliet Corbin, Sage Publications. [2nd ed.]."},{"key":"ref_33","doi-asserted-by":"crossref","unstructured":"Lincoln, Y.S., and Guba, E.G. (1985). Naturalistic Inquiry, Sage Publications.","DOI":"10.1016\/0147-1767(85)90062-8"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups","volume":"19","author":"Tong","year":"2007","journal-title":"Int. J. Qual. Health Care"},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"1849","DOI":"10.1007\/s00405-015-3680-z","article-title":"Prevalence of swallowing and speech problems in daily life after chemoradiation for head and neck cancer based on cut-off scores of the patient-reported outcome measures SWAL-QOL and SHI","volume":"273","author":"Rinkel","year":"2015","journal-title":"Eur. Arch. Oto-Rhino-Laryngol."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"633","DOI":"10.1002\/pon.4558","article-title":"Perceived influence of psychological consultation on psychological well-being, body image, and intimacy following bilateral prophylactic mastectomy: A qualitative analysis","volume":"27","author":"Glassey","year":"2018","journal-title":"Psychooncology"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1016\/j.genhosppsych.2014.09.002","article-title":"The association between depression, weight loss and leptin\/ghrelin levels in male patients with head and neck cancer undergoing radiotherapy","volume":"37","author":"Ozsoy","year":"2015","journal-title":"Gen. Hosp. Psychiatry"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"1039","DOI":"10.1016\/j.jpainsymman.2012.06.013","article-title":"Association Between Body Image Dissatisfaction and Weight Loss Among Patients With Advanced Cancer and Their Caregivers: A Preliminary Report","volume":"45","author":"Rhondali","year":"2013","journal-title":"J. Pain Symptom Manag."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"898","DOI":"10.1002\/pon.3491","article-title":"Body image screening for cancer patients undergoing reconstructive surgery","volume":"23","author":"Fingeret","year":"2014","journal-title":"Psychooncology"},{"key":"ref_40","doi-asserted-by":"crossref","first-page":"303","DOI":"10.1007\/BF01577964","article-title":"Identity change as a consequence of oral surgery","volume":"2","author":"Brodsky","year":"1978","journal-title":"Aesthetic Plast. Surg."},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"641","DOI":"10.12968\/bjon.2005.14.12.18284","article-title":"Exploring supportive care needs and experiences of facial surgery patients","volume":"14","author":"Furness","year":"2005","journal-title":"Br. J. Nurs."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"1230","DOI":"10.1046\/j.1365-2648.1999.01185.x","article-title":"Altered body image: A fear-avoidance model of psycho-social difficulties following disfigurement","volume":"30","author":"Newell","year":"1999","journal-title":"J. Adv. Nurs."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"422","DOI":"10.1007\/s11912-014-0422-0","article-title":"Body Image: A Critical Psychosocial Issue for Patients with Head and Neck Cancer","volume":"17","author":"Fingeret","year":"2014","journal-title":"Curr. Oncol. Rep."},{"key":"ref_44","first-page":"13","article-title":"Facing disfigurement","volume":"1","author":"McCormick","year":"1995","journal-title":"Nurs. N. Z."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"127","DOI":"10.1080\/135485099106270","article-title":"Psychosocial aspects of facial disfigurement: Problems, management and the role of a lay-led organization","volume":"4","author":"Clarke","year":"1999","journal-title":"Psychol. Health Med."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"1376","DOI":"10.1002\/pon.4308","article-title":"Psychosocial effects of a skin camouflage program in female survivors with head and neck cancer: A randomized controlled trial","volume":"26","author":"Chen","year":"2016","journal-title":"Psychooncology"},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"e12351","DOI":"10.1111\/nin.12351","article-title":"Demystifying the mirror taboo: A neurocognitive model of viewing self in the mirror","volume":"27","author":"Freysteinson","year":"2020","journal-title":"Nurs. Inq."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1016\/j.biopsycho.2006.06.009","article-title":"The polyvagal perspective","volume":"74","author":"Porges","year":"2007","journal-title":"Biol. Psychol."},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1016\/S0266-4356(03)00241-9","article-title":"Experience of incorporating a mental health service into patient care after operations for cancers of the head and neck","volume":"42","author":"Wood","year":"2004","journal-title":"Br. J. Oral Maxillofac. Surg."},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"12","DOI":"10.7748\/cnp.5.10.12.s11","article-title":"Definitely not for the squeamish: Head and neck cancer is a relatively rare disease that most nursing teams never come across, therefore it requires a high level of specialist knowledge, says Tricia Feber and colleagues","volume":"12","author":"Feber","year":"2006","journal-title":"Cancer Nurs. Pract."},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"1089","DOI":"10.1007\/s11606-009-0979-8","article-title":"Differences between Older and Younger Cancer Survivors in Seeking Cancer Information and Using Complementary\/Alternative Medicine","volume":"24","author":"Bennett","year":"2009","journal-title":"J. Gen. Intern. Med."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"1695","DOI":"10.1002\/pon.5511","article-title":"From the carer\u2019s mouth: A phenomenological exploration of carer experiences with head and neck cancer patients","volume":"29","author":"Halkett","year":"2020","journal-title":"Psychooncology"},{"key":"ref_53","doi-asserted-by":"crossref","first-page":"189","DOI":"10.1016\/S0959-8049(00)00353-1","article-title":"A body image scale for use with cancer patients","volume":"37","author":"Hopwood","year":"2001","journal-title":"Eur. J. Cancer"},{"key":"ref_54","doi-asserted-by":"crossref","first-page":"285","DOI":"10.1348\/135910705X27613","article-title":"The DAS24: A short form of the Derriford Appearance Scale DAS59 to measure individual responses to living with problems of appearance","volume":"10","author":"Carr","year":"2005","journal-title":"Br. J. Health Psychol."},{"key":"ref_55","doi-asserted-by":"crossref","first-page":"3657","DOI":"10.1007\/s00520-019-04919-6","article-title":"A systematic review of body image measures for people diagnosed with head and neck cancer (HNC)","volume":"27","author":"Sundaram","year":"2019","journal-title":"Support. Care Cancer"}],"container-title":["Cancers"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2072-6694\/13\/15\/3893\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T06:39:04Z","timestamp":1760164744000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2072-6694\/13\/15\/3893"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,8,2]]},"references-count":55,"journal-issue":{"issue":"15","published-online":{"date-parts":[[2021,8]]}},"alternative-id":["cancers13153893"],"URL":"https:\/\/doi.org\/10.3390\/cancers13153893","relation":{},"ISSN":["2072-6694"],"issn-type":[{"value":"2072-6694","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,8,2]]}}}