{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,19]],"date-time":"2026-06-19T22:17:29Z","timestamp":1781907449817,"version":"3.54.5"},"reference-count":63,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2021,8,18]],"date-time":"2021-08-18T00:00:00Z","timestamp":1629244800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Scandinavian Caring Sciences"],"published-print":{"date-parts":[[2022,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life\u2010limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in subsequent years. The severity of the condition varies according to the specific type, ranging from very mild symptoms to, in most cases, complex healthcare needs, including mental and physical disabilities.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aims<\/jats:title><jats:p>This study aimed to elucidate the meanings of the transition experience of being a parent of a child with MPS. Van Gennep\u2019s three\u2010stage rite of passage theory and Turner\u2019s theory of liminality were utilised to understand these families\u2019 transition experiences are learning to live with their child\u2019s ongoing progressive illness trajectory.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A qualitative design utilising hermeneutic phenomenology was used. Longitudinal qualitative in\u2010depth interviews were carried out with eight parents at a three\u2010time point over 17\u2010months period.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>This study provided an interpretation of the lived experience of parents of children and young adults with MPS. As such, it embraces a liminal experience of living with a rare life\u2010limiting illness and the unique passage to becoming a parent of a child with MPS. Parents reported their experience of transition from being the parent of a normal healthy child to be the parent of a child with MPS. They described their transition experience as multi\u2010faceted and complex, neither linear nor time\u2010bound, but rather cyclical.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The rites of passage conceptual framework helped to identify specific and significant unmet supportive and social care needs of these families and their children. This information will enhance the development of a substantial support system to meet the family\u2019s emotional, psychological and social needs during the illness transitions from diagnosis and throughout their illness journey.<\/jats:p><\/jats:sec>","DOI":"10.1111\/scs.13026","type":"journal-article","created":{"date-parts":[[2021,8,18]],"date-time":"2021-08-18T13:13:28Z","timestamp":1629292408000},"page":"614-624","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Living through liminality? Situating the transitional experience of parents of children with mucopolysaccharidoses"],"prefix":"10.1111","volume":"36","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0590-0126","authenticated-orcid":false,"given":"Suja","family":"Somanadhan","sequence":"first","affiliation":[{"name":"UCD School of Nursing, Midwifery and Health Systems University College Dublin  Dublin Ireland"},{"name":"Children's Health Ireland at Temple Street  Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aoife","family":"Brinkley","sequence":"additional","affiliation":[{"name":"Children's Health Ireland at Temple Street  Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8424-3920","authenticated-orcid":false,"given":"Philip J.","family":"Larkin","sequence":"additional","affiliation":[{"name":"UCD School of Nursing, Midwifery and Health Systems University College Dublin  Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,8,18]]},"reference":[{"key":"e_1_2_15_2_1","unstructured":"National Institute of Health (NIH).Mucopolysaccharidosis. 6701 Democracy Boulevard Bethesda MD:National Center for Advancing Translational Sciences (NCATS);2018."},{"key":"e_1_2_15_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2013.11.015"},{"key":"e_1_2_15_4_1","volume-title":"Mucopolysaccharidoses: a guide for physicians and parents","author":"Kircher GS","year":"2007"},{"key":"e_1_2_15_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/2326409815613804"},{"key":"e_1_2_15_6_1","volume-title":"A guide to children\u2019s palliative care","author":"Together for Short Lives","year":"2018"},{"key":"e_1_2_15_7_1","doi-asserted-by":"publisher","DOI":"10.3390\/children5070085"},{"key":"e_1_2_15_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2014.10.010"},{"key":"e_1_2_15_9_1","unstructured":"Together for Short Lives.The BIG Study.Bristol:Together for Short Lives."},{"key":"e_1_2_15_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0882-5963(05)80065-X"},{"key":"e_1_2_15_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2015.01.024"},{"issue":"6","key":"e_1_2_15_12_1","first-page":"306","article-title":"Coping interventions for parents of children newly diagnosed with cancer: an evidence review with implications for clinical practice and future","volume":"36","author":"Peek G","year":"2010","journal-title":"Pediatr Nurs"},{"key":"e_1_2_15_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.jp.7211755"},{"key":"e_1_2_15_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1651-2227.2012.02680.x"},{"key":"e_1_2_15_15_1","volume-title":"Transitions theory, middle\u2010range theory and situational specific theories in nursing research and practice","author":"Meleis AI","year":"2010"},{"key":"e_1_2_15_16_1","doi-asserted-by":"publisher","DOI":"10.1097\/00012272-200009000-00006"},{"key":"e_1_2_15_17_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2006.12.12.22544"},{"key":"e_1_2_15_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.12546"},{"key":"e_1_2_15_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/0898010113498823"},{"key":"e_1_2_15_20_1","doi-asserted-by":"publisher","DOI":"10.1080\/15524256.2011.623471"},{"key":"e_1_2_15_21_1","doi-asserted-by":"publisher","DOI":"10.1080\/15524256.2016.1156601"},{"key":"e_1_2_15_22_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10882-013-9332-6"},{"key":"e_1_2_15_23_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10545-012-9558-y"},{"key":"e_1_2_15_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216314560008"},{"key":"e_1_2_15_25_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2010.16.1.46182"},{"key":"e_1_2_15_26_1","volume-title":"Exploring the palliative care needs and delivery of services to young children with life\u2010limiting neurodevelopmental disabilities and their families: a mixed methods study","author":"Courtney E","year":"2011"},{"key":"e_1_2_15_27_1","doi-asserted-by":"publisher","DOI":"10.1186\/1472\u2010684X\u201012"},{"key":"e_1_2_15_28_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2014.20.4.165"},{"key":"e_1_2_15_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840718772808"},{"key":"e_1_2_15_30_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2015.0464"},{"key":"e_1_2_15_31_1","volume-title":"An investigation into the social support needs of families who experience rare disorders on the Island of Ireland","author":"McGarvey B","year":"2008"},{"key":"e_1_2_15_32_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0017004"},{"key":"e_1_2_15_33_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2008.04748.x"},{"key":"e_1_2_15_34_1","doi-asserted-by":"publisher","DOI":"10.1037\/h0089280"},{"key":"e_1_2_15_35_1","volume-title":"The rites of passage","author":"Gennep A","year":"1960"},{"key":"e_1_2_15_36_1","volume-title":"Dramas, fields, and metaphors: symbolic action in human societies","author":"Turner V","year":"1975"},{"key":"e_1_2_15_37_1","volume-title":"Cultural anthropology","author":"Nanda S","year":"2011"},{"key":"e_1_2_15_38_1","volume-title":"Translating chronic illness research into practice","author":"Kralik D","year":"2010"},{"key":"e_1_2_15_39_1","volume-title":"From ritual to theatre, the human seriousness of play","author":"Turner V","year":"1982"},{"issue":"4","key":"e_1_2_15_40_1","first-page":"347","article-title":"Initiation into a dialysis\u2010dependent life: an examination of rites of passage","volume":"29","author":"Martin\u2010McDonald K","journal-title":"Nephrol Nurs J."},{"key":"e_1_2_15_41_1","doi-asserted-by":"publisher","DOI":"10.5172\/conu.11.2-3.206"},{"key":"e_1_2_15_42_1","doi-asserted-by":"publisher","DOI":"10.1080\/713685862"},{"key":"e_1_2_15_43_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.1997.3.1.42"},{"key":"e_1_2_15_44_1","doi-asserted-by":"publisher","DOI":"10.1177\/082585970702300202"},{"key":"e_1_2_15_45_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1440-1800.2003.00157.x"},{"key":"e_1_2_15_46_1","first-page":"94","volume-title":"The forest of symbols \u2013 aspects of Ndembu ritual","author":"Turner V","year":"1967"},{"key":"e_1_2_15_47_1","doi-asserted-by":"publisher","DOI":"10.1525\/aeq.2006.37.2.110"},{"key":"e_1_2_15_48_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010016\u20100521\u20100"},{"key":"e_1_2_15_49_1","unstructured":"HeideggerM.Being and Time(Trans. By J. Macquarrie And E. Robinson) New York:Harper and Row;1962."},{"key":"e_1_2_15_50_1","volume-title":"Philosophical hermeneutics","author":"Gadamer HG","year":"1976"},{"key":"e_1_2_15_51_1","volume-title":"Phenomenology of practice","author":"Manen M","year":"2014"},{"key":"e_1_2_15_52_1","volume-title":"Researching lived experience: human science for an action sensitive pedagogy","author":"Manen M","year":"2007"},{"key":"e_1_2_15_53_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(06)69350-1"},{"key":"e_1_2_15_54_1","first-page":"339","article-title":"Use of serial qualitative interviews to understand patients\u2019 evolving experiences and needs","volume":"28","author":"Murray SA","year":"2009","journal-title":"BMJ"},{"key":"e_1_2_15_55_1","doi-asserted-by":"publisher","DOI":"10.1080\/13698570412331323261"},{"key":"e_1_2_15_56_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12904\u2010018\u20100275\u20107"},{"key":"e_1_2_15_57_1","doi-asserted-by":"crossref","volume-title":"Families caring for an aging America","author":"Schulz R","DOI":"10.17226\/23606"},{"key":"e_1_2_15_58_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2011.07.003"},{"key":"e_1_2_15_59_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2011.300298"},{"key":"e_1_2_15_60_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2006.03899.x"},{"key":"e_1_2_15_61_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0020-7489(00)00046-8"},{"key":"e_1_2_15_62_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840713512750"},{"key":"e_1_2_15_63_1","volume-title":"Social research methods","author":"Bryman A","year":"2008"},{"key":"e_1_2_15_64_1","volume-title":"Nursing research: generating and assessing evidence for nursing practice","author":"Polit FD","year":"2008"}],"container-title":["Scandinavian Journal of Caring Sciences"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/scs.13026","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/scs.13026","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/scs.13026","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,22]],"date-time":"2023-08-22T22:56:39Z","timestamp":1692744999000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/scs.13026"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,8,18]]},"references-count":63,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2022,9]]}},"alternative-id":["10.1111\/scs.13026"],"URL":"https:\/\/doi.org\/10.1111\/scs.13026","archive":["Portico"],"relation":{},"ISSN":["0283-9318","1471-6712"],"issn-type":[{"value":"0283-9318","type":"print"},{"value":"1471-6712","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,8,18]]},"assertion":[{"value":"2020-03-30","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-07-30","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-08-18","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}