{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T23:02:27Z","timestamp":1792796547420,"version":"4.5.0"},"reference-count":58,"publisher":"Public Library of Science (PLoS)","issue":"3","license":[{"start":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T00:00:00Z","timestamp":1741651200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Translational Research Program, University of Toronto"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec040\">\n<jats:title>\nBackground\n<\/jats:title>\n<jats:p>Parkinson\u2019s disease (PD) is a common neurodegenerative disorder that negatively impacts thousands of patients in Canada. The unexpected nature of PD is associated with a decline in mental health. The highest level of psychological stress occurs during the early years following the diagnosis.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec041\">\n<jats:title>\nObjectives\n<\/jats:title>\n<jats:p>To understand the psychological stress associated with prognostic uncertainties in recently diagnosed PD patients, uncover the gaps in the current support systems, and recommend areas for improvement in the support services that aim to decrease the psychological stress associated with receiving the PD diagnosis.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec042\">\n<jats:title>\nMethods\n<\/jats:title>\n<jats:p>An exploratory qualitative study was conducted using semi-structured interviews with 13 PD patients diagnosed for more than 6 months and less than 5 years. Participants were recruited from the Toronto Western Hospital Movement Disorders Clinic, Toronto, Ontario, Canada until saturation of key themes was reached.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec043\">\n<jats:title>\nResults\n<\/jats:title>\n<jats:p>Five major themes were identified capturing the lived experiences of PD patients following diagnosis: 1) the circumstances of receiving the diagnosis and its psychological impact on PD patients, 2) the impact of intrapersonal factors on the PD journey, 3) the role of social relationships in PD patient\u2019s life, 4) the interaction of PD patients with different elements of the healthcare system, and 5) support services available for recently diagnosed PD patients.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec044\">\n<jats:title>\nConclusions\n<\/jats:title>\n<jats:p>This study uncovers the psychological burden faced by PD patients due to prognostic uncertainties and insufficient support systems. It emphasizes the importance of a patient-centered approach for improving their quality of life and healthcare experiences through personalized support services.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0319576","type":"journal-article","created":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T17:22:16Z","timestamp":1741713736000},"page":"e0319576","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":8,"title":["Psychological stress associated with prognostic uncertainties in recently diagnosed Parkinson\u2019s disease patients: A qualitative study"],"prefix":"10.1371","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-5561-4095","authenticated-orcid":true,"given":"Yasmin H.","family":"Aboelzahab","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Azadeh","family":"Bojmehrani","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4472-3345","authenticated-orcid":true,"given":"Yomna Elsheikh","family":"Ahmed","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Boon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Connie","family":"Marras","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard","family":"Foty","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2025,3,11]]},"reference":[{"issue":"3","key":"pone.0319576.ref001","doi-asserted-by":"crossref","first-page":"411","DOI":"10.5604\/12321966.1232774","article-title":"Motor assessment in Parkinson`s disease","volume":"24","author":"J Opara","year":"2017","journal-title":"Ann Agric Environ Med"},{"issue":"1","key":"pone.0319576.ref002","doi-asserted-by":"crossref","first-page":"65","DOI":"10.2741\/S415","article-title":"Parkinson\u2019s disease: a review","volume":"6","author":"JM Beitz","year":"2014","journal-title":"Front Biosci (Schol Ed)"},{"issue":"9996","key":"pone.0319576.ref003","doi-asserted-by":"crossref","first-page":"896","DOI":"10.1016\/S0140-6736(14)61393-3","article-title":"Parkinson\u2019s disease","volume":"386","author":"LV Kalia","year":"2015","journal-title":"Lancet"},{"key":"pone.0319576.ref004","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1016\/j.neubiorev.2016.07.010","article-title":"Motor symptoms in Parkinson\u2019s disease: A unified framework","volume":"68","author":"AA Moustafa","year":"2016","journal-title":"Neurosci Biobehav Rev"},{"issue":"1","key":"pone.0319576.ref005","doi-asserted-by":"crossref","first-page":"39","DOI":"10.1007\/s12264-012-1050-z","article-title":"Progression of motor symptoms in Parkinson\u2019s disease","volume":"28","author":"R Xia","year":"2012","journal-title":"Neurosci Bull"},{"issue":"4","key":"pone.0319576.ref006","doi-asserted-by":"crossref","first-page":"217","DOI":"10.1038\/nrneurol.2017.27","article-title":"Cognitive decline in Parkinson disease","volume":"13","author":"D Aarsland","year":"2017","journal-title":"Nat Rev Neurol"},{"issue":"1","key":"pone.0319576.ref007","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1007\/PL00007725","article-title":"Cognitive deficits in Parkinson\u2019s disease","volume":"244","author":"B Dubois","year":"1997","journal-title":"J Neurol"},{"issue":"2","key":"pone.0319576.ref008","doi-asserted-by":"crossref","first-page":"183","DOI":"10.3233\/JPD-181306","article-title":"Progression of Cognitive Decline in Parkinson\u2019s Disease","volume":"8","author":"M Roheger","year":"2018","journal-title":"J Parkinsons Dis"},{"issue":"3","key":"pone.0319576.ref009","doi-asserted-by":"crossref","first-page":"760","DOI":"10.1111\/papt.12321","article-title":"Psychological interventions for people with Parkinson\u2019s disease in the early 2020s: Where do we stand?","volume":"94","author":"N Zarotti","year":"2021","journal-title":"Psychol Psychother"},{"issue":"7","key":"pone.0319576.ref010","doi-asserted-by":"crossref","first-page":"838","DOI":"10.1002\/mds.22833","article-title":"Anxiety disorders in Parkinson\u2019s disease: prevalence and risk factors","volume":"25","author":"NNW Dissanayaka","year":"2010","journal-title":"Mov Disord"},{"issue":"8","key":"pone.0319576.ref011","doi-asserted-by":"crossref","first-page":"2547","DOI":"10.1016\/j.clnu.2019.11.015","article-title":"Interventions to promote oral nutritional behaviours in people living with neurodegenerative disorders of the motor system: A systematic review","volume":"39","author":"M Essat","year":"2020","journal-title":"Clin Nutr"},{"issue":"3","key":"pone.0319576.ref012","doi-asserted-by":"crossref","first-page":"478","DOI":"10.1080\/09638288.2023.2181409","article-title":"Perceived control as a predictor of medication adherence in people with Parkinson\u2019s: a large-scale cross-sectional study","volume":"46","author":"N Zarotti","year":"2024","journal-title":"Disabil Rehabil"},{"issue":"4","key":"pone.0319576.ref013","doi-asserted-by":"crossref","first-page":"860","DOI":"10.1177\/17423953211043101","article-title":"\u201cIt\u2019s a double whammy\u201d: A qualitative study of illness uncertainty in individuals with Parkinson\u2019s disease in the context of COVID-19","volume":"18","author":"J Simpson","year":"2022","journal-title":"Chronic Illn"},{"issue":"1","key":"pone.0319576.ref014","doi-asserted-by":"crossref","first-page":"81","DOI":"10.1038\/s41531-024-00692-4","article-title":"Predictors of stress resilience in Parkinson\u2019s disease and associations with symptom progression","volume":"10","author":"A van der Heide","year":"2024","journal-title":"NPJ Parkinsons Dis"},{"issue":"3","key":"pone.0319576.ref015","doi-asserted-by":"crossref","first-page":"501","DOI":"10.3233\/JPD-191683","article-title":"Parkinson\u2019s Disease in Women and Men: What\u2019s the Difference?","volume":"9","author":"S Cerri","year":"2019","journal-title":"J Parkinsons Dis"},{"issue":"9423","key":"pone.0319576.ref016","doi-asserted-by":"crossref","first-page":"1783","DOI":"10.1016\/S0140-6736(04)16305-8","article-title":"Parkinson\u2019s disease","volume":"363","author":"A Samii","year":"2004","journal-title":"Lancet"},{"issue":"2","key":"pone.0319576.ref017","doi-asserted-by":"crossref","first-page":"220","DOI":"10.1111\/nhs.12332","article-title":"Uncertainty and depression in people with Parkinson\u2019s disease: A cross-sectional study","volume":"19","author":"S Ahn","year":"2017","journal-title":"Nurs Health Sci"},{"issue":"2","key":"pone.0319576.ref018","doi-asserted-by":"crossref","first-page":"715","DOI":"10.3233\/JPD-202346","article-title":"People with Parkinson\u2019s disease: what symptoms do they most want to improve and how does this change with disease duration?","volume":"11","author":"RJ Port","year":"2021","journal-title":"J Parkinsons Dis"},{"issue":"11","key":"pone.0319576.ref019","doi-asserted-by":"crossref","first-page":"e050284","DOI":"10.1136\/bmjopen-2021-050284","article-title":"Use of environmental scans in health services delivery research: a scoping review","volume":"11","author":"P Charlton","year":"2021","journal-title":"BMJ Open"},{"issue":"7","key":"pone.0319576.ref020","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1177\/1054773818788492","article-title":"Factors Associated With Uncertainty in Illness Among People With Parkinson\u2019s Disease","volume":"29","author":"M Choi","year":"2020","journal-title":"Clin Nurs Res"},{"issue":"4","key":"pone.0319576.ref021","doi-asserted-by":"crossref","first-page":"872","DOI":"10.1111\/1467-9566.13622","article-title":"Constructing the detecting stage: Social processes and the diagnostic journey of early onset Parkinson\u2019s disease","volume":"45","author":"M Valasaki","year":"2023","journal-title":"Sociol Health Illn"},{"key":"pone.0319576.ref022","doi-asserted-by":"crossref","first-page":"105926","DOI":"10.1016\/j.parkreldis.2023.105926","article-title":"Delivering the diagnosis of Parkinson\u2019s disease- setting the stage with hope and compassion","volume":"118","author":"I Subramanian","year":"2024","journal-title":"Parkinsonism Relat Disord"},{"issue":"3","key":"pone.0319576.ref023","doi-asserted-by":"crossref","first-page":"369","DOI":"10.1111\/1471-0528.15198","article-title":"Qualitative research: what it is and what it is not: Study design: qualitative research","volume":"126","author":"E Denny","year":"2019","journal-title":"BJOG"},{"key":"pone.0319576.ref024","article-title":"Chapter 7: Observational Methods. 4th Edition","volume-title":"Qualitative Methods for Health Research","author":"J Green","year":"2018"},{"issue":"4","key":"pone.0319576.ref025","doi-asserted-by":"crossref","first-page":"314","DOI":"10.1111\/j.1365-2929.2006.02418.x","article-title":"The qualitative research interview","volume":"40","author":"B DiCicco-Bloom","year":"2006","journal-title":"Med Educ"},{"key":"pone.0319576.ref026","article-title":"Chapter 5: In-depth Interviews. 4th Edition","volume-title":"Qualitative Methods for Health Research","author":"J Green","year":"2018"},{"key":"pone.0319576.ref027","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1007\/978-981-16-1677-8_7","article-title":"In-depth interviewing.","volume-title":"Methods in Urban analysis","author":"N Osborne","year":"2021"},{"issue":"4","key":"pone.0319576.ref028","doi-asserted-by":"crossref","first-page":"256","DOI":"10.1111\/j.1547-5069.1990.tb00225.x","article-title":"Reconceptualization of the uncertainty in illness theory","volume":"22","author":"MH Mishel","year":"1990","journal-title":"Image J Nurs Sch"},{"issue":"6","key":"pone.0319576.ref029","doi-asserted-by":"crossref","first-page":"645","DOI":"10.1188\/17.ONF.645-649","article-title":"Uncertainty in Illness: Theory Review, Application, and Extension","volume":"44","author":"Y Zhang","year":"2017","journal-title":"Oncol Nurs Forum"},{"issue":"4","key":"pone.0319576.ref030","doi-asserted-by":"crossref","first-page":"1893","DOI":"10.1007\/s11135-017-0574-8","article-title":"Saturation in qualitative research: exploring its conceptualization and operationalization","volume":"52","author":"B Saunders","year":"2018","journal-title":"Qual Quant"},{"key":"pone.0319576.ref031","first-page":"1408","article-title":"Are we there yet? Data saturation in qualitative research","volume":"20","author":"P Fusch","year":"2015","journal-title":"Qual Rep"},{"issue":"2","key":"pone.0319576.ref032","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1080\/2159676X.2019.1704846","article-title":"To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales","volume":"13","author":"V Braun","year":"2021","journal-title":"Qual Res Sport Exerc Health"},{"issue":"13","key":"pone.0319576.ref033","doi-asserted-by":"crossref","first-page":"1753","DOI":"10.1177\/1049732315617444","article-title":"Sample Size in Qualitative Interview Studies: Guided by Information Power","volume":"26","author":"K Malterud","year":"2016","journal-title":"Qual Health Res"},{"issue":"5","key":"pone.0319576.ref034","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1007\/s10488-013-0528-y","article-title":"Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research","volume":"42","author":"LA Palinkas","year":"2015","journal-title":"Adm Policy Ment Health"},{"key":"pone.0319576.ref035","article-title":"Purposeful Sampling. 3rd Edition","volume-title":"Qualitative Research & Evaluation Methods: Integrating Theory and Practice","author":"MQ Patton","year":"2014"},{"issue":"23","key":"pone.0319576.ref036","doi-asserted-by":"crossref","first-page":"35","DOI":"10.7748\/ns2008.02.22.23.35.c6420","article-title":"Semi-structured interviews: guidance for novice researchers","volume":"22","author":"LS Whiting","year":"2008","journal-title":"Nurs Stand"},{"issue":"12","key":"pone.0319576.ref037","doi-asserted-by":"crossref","first-page":"2954","DOI":"10.1111\/jan.13031","article-title":"Systematic methodological review: developing a framework for a qualitative semi-structured interview guide","volume":"72","author":"H Kallio","year":"2016","journal-title":"J Adv Nurs"},{"issue":"4","key":"pone.0319576.ref038","doi-asserted-by":"crossref","first-page":"87","DOI":"10.4103\/0976-0105.141942","article-title":"Qualitative research method-interviewing and observation","volume":"5","author":"S Jamshed","year":"2014","journal-title":"J Basic Clin Pharm"},{"issue":"9","key":"pone.0319576.ref039","doi-asserted-by":"crossref","first-page":"1277","DOI":"10.1177\/1049732305276687","article-title":"Three approaches to qualitative content analysis","volume":"15","author":"H-F Hsieh","year":"2005","journal-title":"Qual Health Res"},{"issue":"6","key":"pone.0319576.ref040","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups","volume":"19","author":"A Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"issue":"1","key":"pone.0319576.ref041","doi-asserted-by":"crossref","first-page":"e17-29","DOI":"10.1016\/j.sapharm.2014.04.006","article-title":"A qualitative study of English community pharmacists\u2019 experiences of providing lifestyle advice to patients with cardiovascular disease","volume":"11","author":"K Morton","year":"2015","journal-title":"Res Social Adm Pharm"},{"key":"pone.0319576.ref042","first-page":"191","article-title":"Paradigmatic Controversies, Contradictions, and Emerging Confluences","volume-title":"The Sage handbook of qualitative research","author":"EG Guba","year":"2005"},{"key":"pone.0319576.ref043","first-page":"5857","article-title":"Understanding research paradigms: A scientific guide","volume":"27","author":"WK Yong","year":"2021","journal-title":"The J Contemp Issues Bus Govern"},{"issue":"s1","key":"pone.0319576.ref044","doi-asserted-by":"crossref","first-page":"S147","DOI":"10.3233\/JPD-230211","article-title":"Alleviating Stress in Parkinson\u2019s Disease: Symptomatic Treatment, Disease Modification, or Both?","volume":"14","author":"F Goltz","year":"2024","journal-title":"J Parkinsons Dis"},{"issue":"6","key":"pone.0319576.ref045","doi-asserted-by":"crossref","first-page":"362","DOI":"10.1016\/j.gerinurse.2006.10.012","article-title":"Dropping the bomb: the experience of being diagnosed with Parkinson\u2019s disease","volume":"27","author":"LJ Phillips","year":"2006","journal-title":"Geriatr Nurs"},{"issue":"10291","key":"pone.0319576.ref046","doi-asserted-by":"crossref","first-page":"2284","DOI":"10.1016\/S0140-6736(21)00218-X","article-title":"Parkinson\u2019s disease","volume":"397","author":"BR Bloem","year":"2021","journal-title":"Lancet"},{"issue":"1","key":"pone.0319576.ref047","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1038\/s41531-023-00512-1","article-title":"The experience of Anxiety for people with Parkinson\u2019s disease","volume":"9","author":"EK Blundell","year":"2023","journal-title":"NPJ Parkinsons Dis"},{"key":"pone.0319576.ref048","article-title":"p.","volume-title":"Psychological interventions for people with Huntington\u2019s disease, Parkinson\u2019s disease, motor neurone disease, and multiple sclerosis: Evidence-based guidance","year":"2021"},{"issue":"7","key":"pone.0319576.ref049","doi-asserted-by":"crossref","first-page":"802","DOI":"10.1016\/j.amjmed.2019.03.001","article-title":"Parkinson\u2019s Disease and Parkinsonism","volume":"132","author":"MT Hayes","year":"2019","journal-title":"Am J Med"},{"key":"pone.0319576.ref050","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1016\/j.gerinurse.2023.01.014","article-title":"The mediating role of psychological capital between post-traumatic growth and uncertainty in illness among patients with Parkinson\u2019s disease","volume":"50","author":"Y Wang","year":"2023","journal-title":"Geriatr Nurs"},{"key":"pone.0319576.ref051","first-page":"100038","article-title":"Patient perceptions and knowledge of Parkinson\u2019s disease and treatment (KnowPD)","volume":"3","author":"MR Salinas","year":"2020","journal-title":"Clin Park Relat Disord"},{"issue":"1","key":"pone.0319576.ref052","doi-asserted-by":"crossref","first-page":"247","DOI":"10.1186\/s12916-023-02933-4","article-title":"Caregiver burden in Parkinson\u2019s disease: a mixed-methods study","volume":"21","author":"AD Geerlings","year":"2023","journal-title":"BMC Med"},{"key":"pone.0319576.ref053","year":"2021"},{"issue":"5","key":"pone.0319576.ref054","doi-asserted-by":"crossref","first-page":"e068019","DOI":"10.1136\/bmjopen-2022-068019","article-title":"Efficacy of non-pharmacological interventions on depressive symptoms in patients with Parkinson\u2019s disease: a study protocol for a systematic review and network meta-analysis","volume":"13","author":"X Jiang","year":"2023","journal-title":"BMJ Open"},{"key":"pone.0319576.ref055"},{"issue":"3","key":"pone.0319576.ref056","doi-asserted-by":"crossref","first-page":"499","DOI":"10.3390\/brainsci13030499","article-title":"The Role of Telemedicine in the Treatment of Cognitive and Psychological Disorders in Parkinson\u2019s Disease: An Overview","volume":"13","author":"D Latella","year":"2023","journal-title":"Brain Sci"},{"issue":"3","key":"pone.0319576.ref057","doi-asserted-by":"crossref","first-page":"425","DOI":"10.1080\/09638288.2022.2037743","article-title":"Stigma, self-compassion, and psychological distress among people with Parkinson\u2019s","volume":"45","author":"FJR Eccles","year":"2023","journal-title":"Disabil Rehabil"},{"issue":"6","key":"pone.0319576.ref058","doi-asserted-by":"crossref","first-page":"548","DOI":"10.1001\/jama.2019.22360","article-title":"Diagnosis and Treatment of Parkinson Disease: A Review","volume":"323","author":"MJ Armstrong","year":"2020","journal-title":"JAMA"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0319576","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T17:22:37Z","timestamp":1741713757000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0319576"}},"subtitle":[],"editor":[{"given":"Clare","family":"Eddy","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2025,3,11]]},"references-count":58,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2025,3,11]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0319576","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,3,11]]}}}