{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T22:54:18Z","timestamp":1792796058851,"version":"4.5.0"},"reference-count":63,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2024,9,9]],"date-time":"2024-09-09T00:00:00Z","timestamp":1725840000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as the possibility of the genetic disease leading to physical health problems. Huntington's disease (HD) is a genetic, neurodegenerative condition. It causes motor dysfunction, cognitive decline and, during the progression of the disease, different psychological difficulties are common. A total of 12 participants living at risk of HD were interviewed and interpretative phenomenological analysis methodology was used to understand their experiences of maintaining psychological well\u2010being. This resulted in three themes: (1) \u201cyou're constantly in limbo\u201d: living in two worlds; (2) \u201cI have to live, just bloody live\u201d: managing the possibility of a time\u2010limited lifespan; and (3) \u201cI try and try my hardest to look past the disease\u201d: the exhausting quest to keep living well. The findings indicated a need for improved knowledge within professional settings, such as for family doctors, counselors, and other health professionals, specific strategies that genetic counselors can use to support this group, and provision of accessible support and implementation of systemic interventions that would offer support for psychological coping strategies and communication around well\u2010being to the individual and their family unit. Future research could contribute to the formation of such knowledge and the provision of HD\u2010aligned services to help support the psychological well\u2010being of people living at risk of HD.<\/jats:p>","DOI":"10.1002\/jgc4.1965","type":"journal-article","created":{"date-parts":[[2024,9,10]],"date-time":"2024-09-10T05:38:57Z","timestamp":1725946737000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Maintaining psychological well\u2010being when living at risk of Huntington's disease: An interpretative phenomenological analysis"],"prefix":"10.1002","volume":"34","author":[{"given":"Hollie","family":"Cooper","sequence":"first","affiliation":[{"name":"Division of Health Research Lancaster University  Lancaster UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5071-4077","authenticated-orcid":false,"given":"Jane","family":"Simpson","sequence":"additional","affiliation":[{"name":"Division of Health Research Lancaster University  Lancaster UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6769-771X","authenticated-orcid":false,"given":"Maria","family":"Dale","sequence":"additional","affiliation":[{"name":"Leicestershire Partnership NHS Trust, Mill Lodge, The Rise  Narborough UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1484-2703","authenticated-orcid":false,"given":"Fiona J. R.","family":"Eccles","sequence":"additional","affiliation":[{"name":"Division of Health Research Lancaster University  Lancaster UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,9,9]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1080\/13548506.2013.802355"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136\u2010011\u20100062\u2010x"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2016.81"},{"key":"e_1_2_11_5_1","volume-title":"Psychological interventions for people with Huntington's disease, Parkinson's disease, motor neurone disease, and multiple sclerosis: Evidence\u2010based guidance","author":"British Psychological Society","year":"2021"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/s42466\u2010020\u201000059\u2010z"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnab116"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/0277\u20109536(90)90256\u2010r"},{"key":"e_1_2_11_9_1","volume-title":"Good days, bad days: The self in chronic illness and time","author":"Charmaz K.","year":"1991"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105312444646"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1891\/0889-7182.5.3.155"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467\u20109566.00176"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/s13311\u2010020\u201000891\u2010w"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140\u20106736(08)61078\u20108"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.30.4.289"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/s0895\u20104356(01)00457\u20107"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(10)70170\u20108"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12144\u2010009\u20109061\u20102"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/1363459310364162"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0738\u20103991(98)00086\u2010X"},{"key":"e_1_2_11_21_1","volume-title":"Reflexivity: A practical guide for researchers in health and social sciences","author":"Finlay L.","year":"2008"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1017\/s0033291700047966"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399\u20100004.2006.00702.x"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687\u2010022\u201000624\u2010w"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010016\u20109951\u2010z"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1037\/1089\u20102680.2.3.271"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1177\/1363459316688516"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1038\/ejhg.2012.147"},{"issue":"19","key":"e_1_2_11_29_1","first-page":"2214","article-title":"Huntington's disease","volume":"128","author":"Heiberg A.","year":"2008","journal-title":"Tidsskrift for den Norske L\u00e6geforening"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136\u2010015\u20101169\u20102"},{"key":"e_1_2_11_31_1","volume-title":"Neurogenetics","author":"Klein C.","year":"2014"},{"key":"e_1_2_11_32_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e3181bfd212"},{"key":"e_1_2_11_33_1","first-page":"17","volume-title":"Contributions to medical psychology","author":"Leventhal H.","year":"1980"},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.1016\/0092\u20108674(93)90585\u2010E"},{"key":"e_1_2_11_35_1","doi-asserted-by":"publisher","DOI":"10.3233\/JHD-170276"},{"key":"e_1_2_11_36_1","doi-asserted-by":"publisher","DOI":"10.1002\/mds.29228"},{"key":"e_1_2_11_37_1","doi-asserted-by":"publisher","DOI":"10.4337\/9781785363214.00015"},{"key":"e_1_2_11_38_1","doi-asserted-by":"publisher","DOI":"10.1080\/13548500410001721936"},{"key":"e_1_2_11_39_1","doi-asserted-by":"publisher","DOI":"10.1093\/bjsw\/bcw173"},{"key":"e_1_2_11_40_1","doi-asserted-by":"publisher","DOI":"10.14691\/CPPJ.20.1.7"},{"key":"e_1_2_11_41_1","doi-asserted-by":"publisher","DOI":"10.1111\/cge.12893"},{"key":"e_1_2_11_42_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010007\u20109133\u20100"},{"key":"e_1_2_11_43_1","doi-asserted-by":"publisher","DOI":"10.3109\/09638280903362712"},{"key":"e_1_2_11_44_1","doi-asserted-by":"publisher","DOI":"10.1155\/2011\/958439"},{"key":"e_1_2_11_45_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.20823"},{"key":"e_1_2_11_46_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010015\u20109840\u2010x"},{"key":"e_1_2_11_47_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.28.8.515"},{"key":"e_1_2_11_48_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102648.2009.05217.x"},{"key":"e_1_2_11_49_1","doi-asserted-by":"publisher","DOI":"10.1037\/0000252-008"},{"key":"e_1_2_11_50_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781446217870.n14"},{"key":"e_1_2_11_51_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897\u2010008\u20109151\u20106"},{"key":"e_1_2_11_52_1","doi-asserted-by":"publisher","DOI":"10.1177\/016224399502000406"},{"key":"e_1_2_11_53_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12687\u2010019\u201000416\u20109"},{"key":"e_1_2_11_54_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0039047"},{"key":"e_1_2_11_55_1","doi-asserted-by":"publisher","DOI":"10.1037\/\/0278\u20106133.16.1.20"},{"key":"e_1_2_11_56_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140\u20106736(10)60809\u20104"},{"key":"e_1_2_11_57_1","doi-asserted-by":"publisher","DOI":"10.3399\/bjgp12X629955"},{"key":"e_1_2_11_58_1","doi-asserted-by":"publisher","DOI":"10.1016\/s0140\u20106736(10)60957\u20109"},{"key":"e_1_2_11_59_1","doi-asserted-by":"publisher","DOI":"10.1002\/jgc4.1497"},{"key":"e_1_2_11_60_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870440008400302"},{"key":"e_1_2_11_61_1","doi-asserted-by":"publisher","DOI":"10.3233\/JHD\u2010200418"},{"key":"e_1_2_11_62_1","doi-asserted-by":"publisher","DOI":"10.3390\/jpm12010064"},{"key":"e_1_2_11_63_1","doi-asserted-by":"publisher","DOI":"10.3390\/neurosci5020007"},{"key":"e_1_2_11_64_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuropsychologia.2018.02.030"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jgc4.1965","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,31]],"date-time":"2025-03-31T05:32:00Z","timestamp":1743399120000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jgc4.1965"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,9,9]]},"references-count":63,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2025,4]]}},"alternative-id":["10.1002\/jgc4.1965"],"URL":"https:\/\/doi.org\/10.1002\/jgc4.1965","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,9,9]]},"assertion":[{"value":"2024-03-13","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-08-15","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-09-09","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e1965"}}