Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature.Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach.Methods: Purposive maximum variation sampling was used. Semi-structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency.Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two-tiered and under-resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland.Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under-provision and under-resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology-enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed.
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Washington Univ, Program Occupat Therapy, Sch Med, St Louis, MO USA
Washington Univ, Program Occupat Therapy, Sch Med, 4480 Clayton Ave,1200, St Louis, MO 63110 USAWashington Univ, Program Occupat Therapy, Sch Med, St Louis, MO USA
Kang, Eunyoung
Friz, Danielle
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Barnes Jewish Hosp, Gynecol Gynecol Oncol, St Louis, MO USAWashington Univ, Program Occupat Therapy, Sch Med, St Louis, MO USA
Friz, Danielle
Lipsey, Kim
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Washington Univ, Bernard Becker Med Lib, Sch Med, St Louis, MO USAWashington Univ, Program Occupat Therapy, Sch Med, St Louis, MO USA
Lipsey, Kim
Foster, Erin R.
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Washington Univ, Dept Neurol, Dept Psychiat, Program Occupat Therapy,Sch Med, St Louis, MO USAWashington Univ, Program Occupat Therapy, Sch Med, St Louis, MO USA
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Univ Lancaster, Div Hlth Res, Lancaster LA1 4YT, EnglandUniv Lancaster, Div Hlth Res, Lancaster LA1 4YT, England
Simpson, Jane
McMillan, Helen
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Pennine Care NHS Trust Fdn Trust, Older Peoples Psychol Therapies Serv, Ashton Under Lyne, EnglandUniv Lancaster, Div Hlth Res, Lancaster LA1 4YT, England
McMillan, Helen
Leroi, Ira
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Univ Manchester, Inst Brain Behav & Mental Hlth, Fac Med & Human Sci, Manchester, Lancs, EnglandUniv Lancaster, Div Hlth Res, Lancaster LA1 4YT, England
Leroi, Ira
Murray, Craig D.
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Univ Lancaster, Div Hlth Res, Lancaster LA1 4YT, EnglandUniv Lancaster, Div Hlth Res, Lancaster LA1 4YT, England
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Ersta Skondal Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden
Ersta Skondal Univ Coll, Palliat Res Ctr, Stockholm, Sweden
Capio Palliat Care Unit, Stockholm, Sweden
Linkoping Univ, Dept Med & Hlth Sci, S-58183 Linkoping, SwedenLund Univ, Dept Hlth Sci, Lund, Sweden
Alvariza, Anette
Arestedt, Kristofer
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Ersta Skondal Univ Coll, Dept Hlth Care Sci, Stockholm, Sweden
Ersta Skondal Univ Coll, Palliat Res Ctr, Stockholm, Sweden
Linnaeus Univ, Ctr Collaborat Palliat Care, Kalmar, SwedenLund Univ, Dept Hlth Sci, Lund, Sweden
Arestedt, Kristofer
Hagell, Peter
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Kristianstad Univ, Sch Hlth & Soc, PRO CARE Grp, Kristianstad, SwedenLund Univ, Dept Hlth Sci, Lund, Sweden