{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T17:01:01Z","timestamp":1791478861111,"version":"4.3.4"},"reference-count":24,"publisher":"Wiley","issue":"17-18","license":[{"start":{"date-parts":[[2016,8,1]],"date-time":"2016-08-01T00:00:00Z","timestamp":1470009600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Clinical Nursing"],"published-print":{"date-parts":[[2016,9]]},"abstract":"<jats:sec><jats:title>Aims and objectives<\/jats:title><jats:p>To probe into parents\u2019 anticipatory loss of school\u2010age children with Type I or <jats:styled-content style=\"fixed-case\">II<\/jats:styled-content> spinal muscular atrophy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Background<\/jats:title><jats:p>Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy or an infection of the lungs. Therefore, family members experience anticipatory loss, which causes grief before the actual loss. Family members feel physically and mentally exhausted, which results in a family crisis. Therefore, it is important to explore their experiences related to anticipatory loss to assist with the adjustment of the families to their circumstances.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>This study applied a phenomenology method and purposive sampling.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>The 19 parents who participated in this study were referred to us by two medical centers in Taiwan. Their average age was 32\u201349\u00a0years.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Using in\u2010depth interviews, this study explored parents\u2019 anticipatory loss. The interviews were recorded and transcribed. Meanings were extracted using Giorgi analysis, and precision was assessed according to Guba and Lincoln, which was treated as the evaluation standard.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Four themes were identified from the parents\u2019 interviews. The themes included enduring the helplessness and pressure of care, suffering due to the child's rare and unknown condition, loss of hope and a reinforcement of the parent\u2013child attachment, and avoiding the pressure of death and enriching the child's life.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The research findings help nurses identify anticipatory loss among parents of school\u2010age children with type I or <jats:styled-content style=\"fixed-case\">II<\/jats:styled-content> spinal muscular atrophy. They enhance health professionals\u2019 understanding of the panic that occurs in the society surrounding the families, family members\u2019 dynamic relationships, and the families\u2019 demands for care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Relevance to clinical practice<\/jats:title><jats:p>In an attempt to providing intersubjective empathy and support with family having a child with type I and II SMA, nurses may recognize relevant family reactions and enhancing their hope and parent\u2010child attachment. Encourage family members and child go beyond the pressure of death and create customized care plans meeting families\u2019 emotional and medical needs.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jocn.13312","type":"journal-article","created":{"date-parts":[[2016,8,2]],"date-time":"2016-08-02T16:36:22Z","timestamp":1470155782000},"page":"2648-2657","source":"Crossref","is-referenced-by-count":27,"title":["The experiences of families living with the anticipatory loss of a school\u2010age child with spinal muscular atrophy \u2013 the parents\u2019 perspectives"],"prefix":"10.1111","volume":"25","author":[{"given":"Bao\u2010Huan","family":"Yang","sequence":"first","affiliation":[{"name":"School of Nursing Chang Gung University of Science and Technology Guishan District Taoyuan City Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pei\u2010Fan","family":"Mu","sequence":"additional","affiliation":[{"name":"Institute of Clinical Nursing National Yang\u2010Ming University Taipei City Taiwan"},{"name":"Taiwan Joanna Briggis Collaborating Center National Yang\u2010Ming University Taipei City Taiwan"},{"name":"School of Nursing National Defense Medical Center Taipei City Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wen\u2010Sheng","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Philosophy National Chengchi University Wenshan District Taipei City Taiwan"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,8]]},"reference":[{"key":"e_1_2_11_2_1","first-page":"288","article-title":"Quality of life and anticipatory grieving among parents living with a child with cerebral palsy","volume":"19","author":"Al\u2010Gamal E","year":"2013","journal-title":"International Journal of Nursing Studies"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.22005"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2011.10.021"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2010.01381.x"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kep001"},{"key":"e_1_2_11_7_1","first-page":"85","volume-title":"The Descriptive Phenomenological Method in Psychology","author":"Giorgi A","year":"2008"},{"key":"e_1_2_11_8_1","first-page":"247","article-title":"Stress and coping in parents of children and adolescents with spinal muscular atrophy","volume":"224","author":"Gontard A","year":"2012","journal-title":"Clinical Pediatrics"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2013.06.008"},{"key":"e_1_2_11_10_1","first-page":"414","article-title":"Anticipatory grief in adolescents and young adults coping with parental cancer","volume":"61","author":"Gross J","year":"2012","journal-title":"Practice of child psychology and child psychiatry"},{"key":"e_1_2_11_11_1","first-page":"191","article-title":"Paradigmatic controversies, contradictions, and emerging confluences","volume":"8","author":"Guba EG","year":"2005","journal-title":"The Sage Handbook of Qualitative Research"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073812439345"},{"key":"e_1_2_11_13_1","doi-asserted-by":"crossref","first-page":"E1","DOI":"10.1097\/NCC.0b013e3182a3e585","article-title":"Grief related to the experience of being the sibling of a child with cancer","volume":"37","author":"Jenholt NM","year":"2014","journal-title":"Cancer Nursing"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1188\/11.ONF.E260-E271"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pediatrneurol.2014.01.037"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1097\/NCC.0000000000000178"},{"key":"e_1_2_11_17_1","unstructured":"Ministry of Health and Welfare Taiwan R.O.C.(2015)Spinal Muscular Atrophy; SMA. 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