{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,17]],"date-time":"2026-01-17T05:12:17Z","timestamp":1768626737396,"version":"3.49.0"},"reference-count":50,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2013,11,10]],"date-time":"2013-11-10T00:00:00Z","timestamp":1384041600000},"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 Genetic Counseling"],"published-print":{"date-parts":[[2014,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Huntington's disease (HD) is a hereditary, late onset, neurodegenerative disorder. Children of affected parents have a 50 % chance of inheriting HD. Research into the psychological consequences of HD for the family has focussed on individual family members, but little is known about the ways in which its impact is jointly experienced by members of these families. This is particularly important due to the hereditary nature of HD. To address this, the current study examined the experiences of dyads within affected families. Seven parent\/adult child dyads were interviewed jointly about their experiences and relationships with their family and each other and interpretative phenomenological analysis was used to analyse the resultant data. Identified themes were: \u201cA spectre hanging over us\u201d: HD as a presence within the family, \u201cUs against the world\u201d: Protection, knowledge and control, and \u201cThat could be me in 50 years\u201d: Cyclical changes in identity and role. These findings are examined in relation to previous research and indicate the need for an increased understanding of the needs of HD families. Clinical implications and suggestions for further research are discussed.<\/jats:p>","DOI":"10.1007\/s10897-013-9666-3","type":"journal-article","created":{"date-parts":[[2013,11,9]],"date-time":"2013-11-09T05:18:03Z","timestamp":1383974283000},"page":"339-349","source":"Crossref","is-referenced-by-count":18,"title":["An Exploration of the Experience of Huntington's Disease in Family Dyads: An Interpretative Phenomenological Analysis"],"prefix":"10.1002","volume":"23","author":[{"given":"Caroline","family":"Maxted","sequence":"first","affiliation":[{"name":"Lancaster University Lancaster UK"},{"name":"Northumberland, Tyne and Wear NHS Foundation Trust Newcastle upon Tyne UK"},{"name":"Department of Clinical Psychology Bensham Hospital Gateshead NE8 4YL UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane","family":"Simpson","sequence":"additional","affiliation":[{"name":"Lancaster University Lancaster UK"},{"name":"Northumberland, Tyne and Wear NHS Foundation Trust Newcastle upon Tyne UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephen","family":"Weatherhead","sequence":"additional","affiliation":[{"name":"Lancaster University Lancaster UK"},{"name":"Northumberland, Tyne and Wear NHS Foundation Trust Newcastle upon Tyne UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2013,11,10]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1080\/14753634.2012.664871"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105307084307"},{"key":"e_1_2_7_4_1","volume-title":"Report on the genetic testing of children 2010","author":"British Society for Human Genetics","year":"2010"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/14768320500230185"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1545-5300.2002.00677.x"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.ep11339939"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1037\/0022-3514.56.2.267"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00176"},{"key":"e_1_2_7_10_1","volume-title":"An Introduction to Family Therapy, Systemic Theory and Practice.","author":"Dallos R.","year":"2010"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1192\/apt.7.4.243"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-0619-3"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2010.533241"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.drugalcdep.2006.06.009"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1348\/147608309X471514"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1034\/j.1399-0004.2003.00142.x"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2009.02.049"},{"key":"e_1_2_7_18_1","unstructured":"Genetic Counsellor Registration Board(2010).Code of Conduct.Retrieved from:http:\/\/www.gcrb.org.uk\/Files\/Code%20of%20Conduct.pdf"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0005-7894(04)80013-3"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1037\/h0089382"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.69.6.773"},{"key":"e_1_2_7_22_1","first-page":"17","volume-title":"Contributions to medical psychology","author":"Leventhal H.","year":"1980"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/003435520104400305"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1080\/1354850042000267030"},{"issue":"38","key":"e_1_2_7_25_1","first-page":"1","article-title":"Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients","volume":"6","author":"Lowit A.","year":"2005","journal-title":"BMC Family Practice"},{"key":"e_1_2_7_26_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2006.00892.x"},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32013"},{"key":"e_1_2_7_28_1","volume-title":"Mental Capacity Act 2005"},{"key":"e_1_2_7_29_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2013.770513"},{"key":"e_1_2_7_30_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301211421070"},{"key":"e_1_2_7_31_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.71.3.310"},{"key":"e_1_2_7_32_1","first-page":"35","volume-title":"Theorizing About Intercultural Communication","author":"Pearce B.","year":"2005"},{"key":"e_1_2_7_33_1","doi-asserted-by":"publisher","DOI":"10.1037\/h0089626"},{"key":"e_1_2_7_34_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-137-12098-4_7"},{"key":"e_1_2_7_35_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.20583"},{"key":"e_1_2_7_36_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1545-5300.1987.00203.x"},{"key":"e_1_2_7_37_1","doi-asserted-by":"publisher","DOI":"10.1080\/10410230902804133"},{"key":"e_1_2_7_38_1","volume-title":"Interpretative Phenomenological Analysis: Theory, method and Research.","author":"Smith J.A.","year":"2009"},{"key":"e_1_2_7_39_1","doi-asserted-by":"publisher","DOI":"10.1521\/jscp.2000.19.1.11"},{"key":"e_1_2_7_40_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1545-5300.2003.00047.x"},{"key":"e_1_2_7_41_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-008-9151-6"},{"key":"e_1_2_7_42_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006199-200005000-00002"},{"key":"e_1_2_7_43_1","doi-asserted-by":"publisher","DOI":"10.1176\/jnp.14.1.37"},{"key":"e_1_2_7_44_1","volume-title":"Mental Capacity Act (c.9)","year":"2005"},{"key":"e_1_2_7_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpsychores.2006.04.015"},{"key":"e_1_2_7_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2005.11.019"},{"key":"e_1_2_7_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.biopsych.2006.12.016"},{"key":"e_1_2_7_48_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1077-7229(05)80069-0"},{"key":"e_1_2_7_49_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2008.04946.x"},{"key":"e_1_2_7_50_1","doi-asserted-by":"publisher","DOI":"10.1177\/1074840709337126"},{"key":"e_1_2_7_51_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.b.30479"}],"container-title":["Journal of Genetic Counseling"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1007\/s10897-013-9666-3","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,15]],"date-time":"2023-09-15T01:41:50Z","timestamp":1694742110000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1007\/s10897-013-9666-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,11,10]]},"references-count":50,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2014,6]]}},"alternative-id":["10.1007\/s10897-013-9666-3"],"URL":"https:\/\/doi.org\/10.1007\/s10897-013-9666-3","archive":["Portico"],"relation":{},"ISSN":["1059-7700","1573-3599"],"issn-type":[{"value":"1059-7700","type":"print"},{"value":"1573-3599","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,11,10]]}}}