{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,13]],"date-time":"2026-02-13T13:34:25Z","timestamp":1770989665482,"version":"3.50.1"},"reference-count":47,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2004,12,7]],"date-time":"2004-12-07T00:00:00Z","timestamp":1102377600000},"content-version":"vor","delay-in-days":6,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Scandinavian Caring Sciences"],"published-print":{"date-parts":[[2004,12]]},"abstract":"<jats:p>Despite the plethora of clinical literature on the medical treatment for paediatric acute myeloid leukaemia (AML), there is a dearth of psycho\u2010social literature on how families cope with either the disease or its treatments. The present article seeks to make a contribution by placing psychosocial aspects of childhood AML on the agenda. The findings are from a 5\u2010year longitudinal, qualitative study on the psychosocial aspects of paediatric leukaemia. Qualitative data is gathered from open\u2010ended interviews at three points in time on the experience of illness. The holistic findings from <jats:italic>T<\/jats:italic><jats:sub>1<\/jats:sub> present the impact of diagnosis and early treatment for childhood AML from the perspective of mothers, father, sibling and child patients. The study is also following up families with related disorders, thus it is possible to assess difference to other haematological groups. The findings indicate that the families bring scant prior understanding of the illness, and experience the diagnosis with fear and seriousness as a confrontation with death. At the point of entering treatment they are in a profound sense of shock and grief, which is exacerbated by a distressing, all pervading, sense of uncertainty. Families can be overwhelmed by the exhaustion of attending to the escalating practical demands of the situation combined with fatigue, worry and poor nutrition. All families find dealing with the invasive procedures and aggressive drug protocols emotionally challenging. However, in spite of the difficulties, parents have a strong desire to be with their child and find any separation painful. Families come to view the ward as a comfort zone where they have the support of the health and allied health team and the camaraderie of others experiencing a similar situation. However, even this support has to be qualified by the need for personal space, the difficulty of handling complex emotions, and the fear of being overwhelmed by difficulties other families face. The insights argue strongly for sensitive support for all individuals coping with childhood AML.<\/jats:p>","DOI":"10.1111\/j.1471-6712.2004.00293.x","type":"journal-article","created":{"date-parts":[[2004,12,7]],"date-time":"2004-12-07T08:50:43Z","timestamp":1102409443000},"page":"358-367","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":32,"title":["Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience"],"prefix":"10.1111","volume":"18","author":[{"given":"Pam","family":"McGrath","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary Anne","family":"Paton","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicole","family":"Huff","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2004,12,7]]},"reference":[{"key":"e_1_2_13_2_2","doi-asserted-by":"publisher","DOI":"10.1097\/00062752-200207000-00014"},{"key":"e_1_2_13_3_2","doi-asserted-by":"publisher","DOI":"10.1053\/jpdn.2003.9"},{"key":"e_1_2_13_4_2","doi-asserted-by":"publisher","DOI":"10.1081\/CNV-120005931"},{"key":"e_1_2_13_5_2","doi-asserted-by":"publisher","DOI":"10.3109\/10428190109064590"},{"key":"e_1_2_13_6_2","volume-title":"Qualitative Research in Nursing: Advancing the Humanistic Imperative","author":"Streubert J","year":"1995"},{"key":"e_1_2_13_7_2","doi-asserted-by":"publisher","DOI":"10.1007\/978-94-010-1670-4"},{"key":"e_1_2_13_8_2","volume-title":"Methods of Educational and Social Science Research: An Integrated Approach","author":"Krathwohl D.","year":"1993"},{"key":"e_1_2_13_9_2","volume-title":"Nursing Research: Principles and Methods","author":"Polit D","year":"1995"},{"key":"e_1_2_13_10_2","doi-asserted-by":"publisher","DOI":"10.17763\/haer.62.3.8323320856251826"},{"key":"e_1_2_13_11_2","volume-title":"Basic Concepts for Qualitative Research","author":"Holloway I.","year":"1997"},{"key":"e_1_2_13_12_2","doi-asserted-by":"publisher","DOI":"10.1007\/BF03351388"},{"key":"e_1_2_13_13_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.6997.109"},{"key":"e_1_2_13_14_2","first-page":"48","volume-title":"Existential\u2013Phenomenological Alternantives in Psychology","author":"Colaizzi P","year":"1978"},{"key":"e_1_2_13_15_2","volume-title":"Qualitative Research in Health","author":"Grbich C.","year":"1999"},{"key":"e_1_2_13_16_2","first-page":"1057","article-title":"What is the optimal therapy for childhood AML","volume":"16","author":"Loeb D","year":"2002","journal-title":"Oncology"},{"key":"e_1_2_13_17_2","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/22.5.749"},{"key":"e_1_2_13_18_2","doi-asserted-by":"publisher","DOI":"10.1037\/0022-006X.65.1.120"},{"key":"e_1_2_13_19_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0033-3182(96)71564-5"},{"key":"e_1_2_13_20_2","first-page":"6","article-title":"Depression among parents of children with acute lymphoblastic leukaemia","volume":"14","author":"Iqbal A","year":"2002","journal-title":"J Ayub Med Coll Abbottabad"},{"key":"e_1_2_13_21_2","volume-title":"The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer","author":"Koocher G","year":"1981"},{"key":"e_1_2_13_22_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.2044-8341.1986.tb02708.x"},{"key":"e_1_2_13_23_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2354.2000.00204.x"},{"key":"e_1_2_13_24_2","first-page":"3","article-title":"Diagnosis, disclosure, and informed consent: learning from parents of children with cancer","volume":"1","author":"Levi R","journal-title":"J Pediatr Hematol Oncol"},{"key":"e_1_2_13_25_2","doi-asserted-by":"publisher","DOI":"10.1097\/00004583-199712000-00022"},{"key":"e_1_2_13_26_2","first-page":"107","article-title":"Relocation for specialist treatment for pediatric acute lymphoblastic leukaemia","volume":"2","author":"McGrath P","year":"2003","journal-title":"Aust As J Can"},{"key":"e_1_2_13_27_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2206.2001.00200.x"},{"key":"e_1_2_13_28_2","doi-asserted-by":"publisher","DOI":"10.1188\/02.ONF.988-996"},{"key":"e_1_2_13_29_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1523-5394.2001.94008.x"},{"key":"e_1_2_13_30_2","first-page":"4","article-title":"Including the fathers\u2019 perspective in holistic care. 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