{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,4]],"date-time":"2026-10-04T03:15:46Z","timestamp":1791083746010,"version":"4.1.0"},"reference-count":33,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T00:00:00Z","timestamp":1707177600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T00:00:00Z","timestamp":1707177600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Nurs"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>In the daily life of individuals living with Parkinson's disease, their loved ones are crucial. Adapting family members to the patient's condition, support in providing care, and psychosocial adaptations is essential.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Aim<\/jats:title>\n                <jats:p>To explore family members' perception of everyday caregiving for a family member living with Parkinson's disease and to describe their role in the care and everyday life.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>In a descriptive, qualitative thematic analysis study, semi-structured interviews were conducted with ten people between the ages of 20 and 70, the closest family members of people living with Parkinson's disease. The analysis of the collected data was carried out using thematic analysis.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>We generated the main theme: \"Living with a family member with Parkinson\u2019s disease\", with associated secondary-level sub-themes: \u201cResponse\u201d, \u201cChange\u201d, \u201cCare\u201d, and \u201cSupport\u201d. Family members of individuals living with Parkinson's disease frequently encounter similar life situations. The most notable transformation in their daily lives primarily revolves around adapting to various activities.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Family members are the ones who most often take on the role of caregiver and provide help to their loved ones. Many of them accept the disease as a part of everyday life and learn to live with it. It is of fundamental importance that we offer family members the necessary support, knowledge, and involvement in holistic treatment and care.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12912-024-01767-6","type":"journal-article","created":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T07:02:07Z","timestamp":1707202927000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Family members\u2019 experiences of everyday caregiving for a family member living with Parkinson\u2019s disease: a qualitative thematic analysis study"],"prefix":"10.1186","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4224-8843","authenticated-orcid":false,"given":"Zvonka","family":"Fekonja","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadja","family":"Irgoli\u010d","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4952-078X","authenticated-orcid":false,"given":"Dominika","family":"Vrbnjak","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,2,6]]},"reference":[{"issue":"Suppl 1","key":"1767_CR1","doi-asserted-by":"publisher","first-page":"318","DOI":"10.1111\/jnc.13691","volume":"139","author":"S Sveinbjornsdottir","year":"2016","unstructured":"Sveinbjornsdottir S. The clinical symptoms of Parkinson\u2019s disease. J Neurochem. 2016;139(Suppl 1):318\u201324.","journal-title":"J Neurochem"},{"issue":"1","key":"1767_CR2","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1038\/s41598-021-04356-8","volume":"12","author":"LL Raket","year":"2022","unstructured":"Raket LL, Oudin \u00c5str\u00f6m D, Norlin JM, Kellerborg K, Martinez-Martin P, Odin P. Impact of age at onset on symptom profiles, treatment characteristics and health-related quality of life in Parkinson\u2019s disease. Sci Rep. 2022;12(1):526.","journal-title":"Sci Rep"},{"key":"1767_CR3","doi-asserted-by":"crossref","unstructured":"Schneider SA, Obeso JA. Clinical and Pathological Features of Parkinson\u2019s Disease. In: Behavioral Neurobiology of Huntington's Disease and Parkinson's Disease. edn. Edited by Nguyen HHP, Cenci MA. Berlin, Heidelberg: Springer Berlin Heidelberg; 2015: 205\u2013220.","DOI":"10.1007\/7854_2014_317"},{"issue":"9996","key":"1767_CR4","doi-asserted-by":"publisher","first-page":"896","DOI":"10.1016\/S0140-6736(14)61393-3","volume":"386","author":"LV Kalia","year":"2015","unstructured":"Kalia LV, Lang AE. Parkinson\u2019s disease. Lancet. 2015;386(9996):896\u2013912.","journal-title":"Lancet"},{"issue":"5","key":"1767_CR5","doi-asserted-by":"publisher","first-page":"235","DOI":"10.1177\/0891988717720302","volume":"30","author":"PE Mosley","year":"2017","unstructured":"Mosley PE, Moodie R, Dissanayaka N. Caregiver burden in parkinson disease: a critical review of recent literature. J Geriatr Psychiatry Neurol. 2017;30(5):235\u201352.","journal-title":"J Geriatr Psychiatry Neurol"},{"issue":"1","key":"1767_CR6","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1186\/s40035-017-0099-z","volume":"6","author":"P Maiti","year":"2017","unstructured":"Maiti P, Manna J, Dunbar GL. Current understanding of the molecular mechanisms in Parkinson\u2019s disease: Targets for potential treatments. Translatl Neurodegen. 2017;6(1):28.","journal-title":"Translatl Neurodegen"},{"key":"1767_CR7","doi-asserted-by":"publisher","first-page":"2076942","DOI":"10.1155\/2020\/2076942","volume":"2020","author":"C Fang","year":"2020","unstructured":"Fang C, Lv L, Mao S, Dong H, Liu B. cognition deficits in parkinson\u2019s disease: mechanisms and treatment. Parkinson\u2019s disease. 2020;2020:2076942.","journal-title":"Parkinson's disease"},{"issue":"1","key":"1767_CR8","doi-asserted-by":"publisher","first-page":"1967263","DOI":"10.1080\/17482631.2021.1967263","volume":"16","author":"SK Bhasin","year":"2021","unstructured":"Bhasin SK, Bharadwaj IU. Perceptions and meanings of living with Parkinson\u2019s disease: an account of caregivers lived experiences. Int J Qual Stud Health Well-being. 2021;16(1):1967263.","journal-title":"Int J Qual Stud Health Well-being"},{"issue":"2","key":"1767_CR9","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1007\/s12152-023-09520-7","volume":"16","author":"M Boulicault","year":"2023","unstructured":"Boulicault M, Goering S, Klein E, Dougherty D, Widge AS. The role of family members in psychiatric deep brain stimulation trials: more than psychosocial support. Neuroethics. 2023;16(2):14.","journal-title":"Neuroethics"},{"issue":"1","key":"1767_CR10","doi-asserted-by":"publisher","first-page":"45","DOI":"10.1111\/1440-1630.12437","volume":"65","author":"J Liddle","year":"2018","unstructured":"Liddle J, Phillips J, Gustafsson L, Silburn P. Understanding the lived experiences of Parkinson\u2019s disease and deep brain stimulation (DBS) through occupational changes. Aust Occup Ther J. 2018;65(1):45\u201353.","journal-title":"Aust Occup Ther J"},{"issue":"1","key":"1767_CR11","doi-asserted-by":"publisher","first-page":"65","DOI":"10.1186\/s41687-020-00230-9","volume":"4","author":"N Bonner","year":"2020","unstructured":"Bonner N, Bozzi S, Morgan L, Mason B, Peterschmitt MJ, Fischer TZ, Arbuckle R, Reaney M. Patients\u2019 experiences of Parkinson\u2019s disease: a qualitative study in glucocerebrosidase and idiopathic Parkinson\u2019s disease. J Patient-Rep Outcomes. 2020;4(1):65.","journal-title":"J Patient-Rep Outcomes"},{"issue":"1","key":"1767_CR12","doi-asserted-by":"publisher","first-page":"109","DOI":"10.1007\/s41999-021-00548-7","volume":"13","author":"D Churm","year":"2022","unstructured":"Churm D, Dickinson C, Robinson L, Paes P, Cronin T, Walker R. Understanding how people with Parkinson\u2019s disease and their relatives approach advance care planning. European Geriatr Med. 2022;13(1):109\u201317.","journal-title":"European Geriatr Med"},{"issue":"3","key":"1767_CR13","doi-asserted-by":"publisher","first-page":"337","DOI":"10.1080\/13607863.2017.1421612","volume":"23","author":"A Hand","year":"2019","unstructured":"Hand A, Oates LL, Gray WK, Walker RW. The role and profile of the informal carer in meeting the needs of people with advancing Parkinson\u2019s disease. Aging Ment Health. 2019;23(3):337\u201344.","journal-title":"Aging Ment Health"},{"key":"1767_CR14","doi-asserted-by":"publisher","first-page":"151590","DOI":"10.1016\/j.apnr.2022.151590","volume":"66","author":"JY Shin","year":"2022","unstructured":"Shin JY, Habermann B. Nursing research in caregivers of people with Parkinson\u2019s disease from 2011 to 2021: a scoping review. Appl Nurs Res. 2022;66:151590.","journal-title":"Appl Nurs Res"},{"issue":"4","key":"1767_CR15","doi-asserted-by":"publisher","first-page":"292","DOI":"10.1159\/000445751","volume":"46","author":"L Hirsch","year":"2016","unstructured":"Hirsch L, Jette N, Frolkis A, Steeves T, Pringsheim T. The incidence of Parkinson\u2019s disease: a systematic review and meta-analysis. Neuroepidemiology. 2016;46(4):292\u2013300.","journal-title":"Neuroepidemiology"},{"issue":"Suppl 6","key":"1767_CR16","doi-asserted-by":"publisher","first-page":"2628","DOI":"10.1590\/0034-7167-2017-0008","volume":"71","author":"C Padovani","year":"2018","unstructured":"Padovani C, Lopes MCDL, Higahashi IH, Pelloso SM, Paiano M, Christophoro R. Being caregiver of people with Parkinson\u2019s Disease: experienced situations. Revista Brasileira De Enfermagem. 2018;71(Suppl 6):2628\u201334.","journal-title":"Revista Brasileira De Enfermagem"},{"issue":"19\u201320","key":"1767_CR17","doi-asserted-by":"publisher","first-page":"3719","DOI":"10.1111\/jocn.14522","volume":"27","author":"C Hellqvist","year":"2018","unstructured":"Hellqvist C, Dizdar N, Hagell P, Berter\u00f6 C, Sund-Levander M. Improving self-management for persons with Parkinson\u2019s disease through education focusing on management of daily life: Patients\u2019 and relatives\u2019 experience of the Swedish National Parkinson School. J Clin Nurs. 2018;27(19\u201320):3719\u201328.","journal-title":"J Clin Nurs"},{"issue":"5","key":"1767_CR18","doi-asserted-by":"publisher","first-page":"1284","DOI":"10.1111\/jonm.13267","volume":"29","author":"Z Fekonja","year":"2021","unstructured":"Fekonja Z, Kmetec S, Novak B, McCormack B, Mlinar RN. A qualitative study of family members\u2019 experiences of their loved one developing dementia and their subsequent placement in a nursing home. J Nurs Manag. 2021;29(5):1284\u201392.","journal-title":"J Nurs Manag"},{"issue":"5","key":"1767_CR19","doi-asserted-by":"publisher","first-page":"317","DOI":"10.1177\/1744987118816361","volume":"24","author":"A Dekawaty","year":"2019","unstructured":"Dekawaty A, Malini H, Fernandes F. Family experiences as a caregiver for patients with Parkinson\u2019s disease: a qualitative study. J Res Nurs. 2019;24(5):317\u201327.","journal-title":"J Res Nurs"},{"key":"1767_CR20","doi-asserted-by":"publisher","first-page":"272","DOI":"10.1590\/0034-7167-2016-0577","volume":"71","author":"RV Valcarenghi","year":"2018","unstructured":"Valcarenghi RV, Alvarez AM, Santos SSC, Siewert JS, Nunes SFL, Tomasi AVR. The daily lives of people with Parkinson\u2019s disease. Revista Brasileira De Enfermagem. 2018;71:272\u20139.","journal-title":"Revista Brasileira De Enfermagem"},{"key":"1767_CR21","first-page":"2086834","volume":"2020","author":"MC Lopes Dos Santos","year":"2020","unstructured":"Lopes Dos Santos MC, Navarta-S\u00e1nchez MV, Moler JA, Garc\u00eda-Lautre I, Anaut-Bravo S, Portillo MC. Psychosocial adjustment of in-home caregivers of family members with dementia and Parkinson\u2019s disease: a comparative study. Parkinson\u2019s Dis. 2020;2020:2086834.","journal-title":"Parkinson\u2019s Dis"},{"issue":"4","key":"1767_CR22","doi-asserted-by":"publisher","first-page":"1030","DOI":"10.1111\/hsc.13137","volume":"29","author":"L Ambrosio","year":"2021","unstructured":"Ambrosio L, Navarta-S\u00e1nchez MV, Portillo MC, Martin-Lanas R, Recio M, Riverol M. Psychosocial adjustment to illness scale in family caregivers of patients with parkinson\u2019s disease: Spanish validation study. Health Soc Care Community. 2021;29(4):1030\u201340.","journal-title":"Health Soc Care Community"},{"issue":"2","key":"1767_CR23","doi-asserted-by":"publisher","first-page":"206","DOI":"10.1177\/1074840715576794","volume":"21","author":"L \u00c5restedt","year":"2015","unstructured":"\u00c5restedt L, Benzein E, Persson C. Families living with chronic illness: beliefs about illness, family, and health care. J Fam Nurs. 2015;21(2):206\u201331.","journal-title":"J Fam Nurs"},{"issue":"6","key":"1767_CR24","doi-asserted-by":"publisher","first-page":"3308","DOI":"10.3390\/ijerph18063308","volume":"18","author":"L Rosengren","year":"2021","unstructured":"Rosengren L, Forsberg A, Brog\u00e5rdh C, Lexell J. Life Satisfaction and adaptation in persons with parkinson\u2019s disease\u2014a qualitative study. Int J Environ Res Public Health. 2021;18(6):3308.","journal-title":"Int J Environ Res Public Health"},{"issue":"1","key":"1767_CR25","doi-asserted-by":"publisher","first-page":"221","DOI":"10.3233\/JPD-181456","volume":"9","author":"D Sturm","year":"2019","unstructured":"Sturm D, Folkerts AK, Kalbe E. Easing burden and stress: intervention needs of family members of patients with parkinson\u2019s disease. J Parkinsons Dis. 2019;9(1):221\u20137.","journal-title":"J Parkinsons Dis"},{"issue":"1","key":"1767_CR26","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1186\/s12916-023-02933-4","volume":"21","author":"AD Geerlings","year":"2023","unstructured":"Geerlings AD, Kapelle WM, Sederel CJ, Tenison E, Wijngaards-Berenbroek H, Meinders MJ, Munneke M, Ben-Shlomo Y, Bloem BR, Darweesh SKL. Caregiver burden in Parkinson\u2019s disease: a mixed-methods study. BMC Med. 2023;21(1):247.","journal-title":"BMC Med"},{"key":"1767_CR27","doi-asserted-by":"crossref","unstructured":"Braun V, Clarke V. Thematic analysis: a practical guide. London [etc.]: Sage; 2022.","DOI":"10.1007\/978-3-319-69909-7_3470-2"},{"issue":"6","key":"1767_CR28","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","volume":"19","author":"A Tong","year":"2007","unstructured":"Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349\u201357.","journal-title":"Int J Qual Health Care"},{"key":"1767_CR29","doi-asserted-by":"publisher","DOI":"10.1016\/0147-1767(85)90062-8","volume-title":"Naturalistic inquiry","author":"YS Lincoln","year":"1985","unstructured":"Lincoln YS, Guba EG. Naturalistic inquiry. Newbury Park: Sage; 1985."},{"issue":"4","key":"1767_CR30","doi-asserted-by":"publisher","first-page":"1631","DOI":"10.3233\/JPD-191884","volume":"10","author":"H Lennaerts-Kats","year":"2020","unstructured":"Lennaerts-Kats H, Ebenau A, Steppe M, van der Steen JT, Meinders MJ, Vissers K, Munneke M, Groot M, Bloem BR. \u201cHow long can i carry on?\u201d the need for palliative care in parkinson\u2019s disease: a qualitative study from the perspective of bereaved family caregivers. J Parkinsons Dis. 2020;10(4):1631\u201342.","journal-title":"J Parkinsons Dis"},{"issue":"8","key":"1767_CR31","doi-asserted-by":"publisher","first-page":"1128","DOI":"10.1002\/gps.5137","volume":"34","author":"K Perepezko","year":"2019","unstructured":"Perepezko K, Hinkle JT, Shepard MD, Fischer N, Broen MPG, Leentjens AFG, Gallo JJ, Pontone GM. Social role functioning in Parkinson\u2019s disease: a mixed-methods systematic review. Int J Geriatr Psychiatry. 2019;34(8):1128\u201338.","journal-title":"Int J Geriatr Psychiatry"},{"issue":"1","key":"1767_CR32","doi-asserted-by":"publisher","first-page":"1967263","DOI":"10.1080\/17482631.2021.1967263","volume":"16","author":"SK Bhasin","year":"2021","unstructured":"Bhasin SK, Bharadwaj IU. Perceptions and meanings of living with Parkinson\u2019s disease: an account of caregivers lived experiences. Int J Qual Stud Health Well-being. 2021;16(1):1967263.","journal-title":"Int J Qual Stud Health Well-being"},{"issue":"Suppl 1","key":"1767_CR33","doi-asserted-by":"publisher","first-page":"S34","DOI":"10.21037\/apm.2020.02.04","volume":"9","author":"S Fox","year":"2020","unstructured":"Fox S, Azman A, Timmons S. Palliative care needs in Parkinson\u2019s disease: focus on anticipatory grief in family carers. Ann Palliative Med. 2020;9(Suppl 1):S34-s43.","journal-title":"Ann Palliative Med"}],"container-title":["BMC Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12912-024-01767-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12912-024-01767-6\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12912-024-01767-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,6]],"date-time":"2024-02-06T07:07:23Z","timestamp":1707203243000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcnurs.biomedcentral.com\/articles\/10.1186\/s12912-024-01767-6"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,6]]},"references-count":33,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["1767"],"URL":"https:\/\/doi.org\/10.1186\/s12912-024-01767-6","relation":{},"ISSN":["1472-6955"],"issn-type":[{"value":"1472-6955","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,6]]},"assertion":[{"value":"18 August 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 January 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"6 February 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Approval was obtained from the Ethics Committee of the Faculty of Health Sciences (number 038\/2022\/5475\u20135\/902). All methods were carried out in accordance with relevant guidelines and regulations. Each participant gave their informed consent before taking part in the research. The techniques used in the study followed the rules and standards that oversee qualitative research. The recorded conversations went through a coding procedure in which the participants' identities were kept anonymous, and numerical symbols were used in all later publications and sharing of research results.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"98"}}