Preferences for rural specialist health care in the treatment of Parkinson’s disease: exploring the role of community-based nursing specialists
Veronica Coady A B , Narelle Warren C D G , Nancy Bilkhu E and Darshini Ayton FA Department of Social Work, Monash University, Building C, Level 4, 900 Dandenong Road, Caulfield East, Vic. 3145, Australia.
B Department of Rural Health, University of Melbourne, 49 Graham Street, Shepparton, Vic. 3632, Australia.
C School of Social Sciences, Monash University, Menzies Building, 20 Chancellors Walk, Clayton, Vic. 3800, Australia.
D Alfred Hospital, Psychology, 55 Commercial Road, Melbourne, Vic. 3004, Australia.
E Wangaratta Medical Specialists, 29 Clark Street, Wangaratta, Vic. 3677, Australia.
F School of Public Health and Preventive Medicine, Monash University, 553 St Kilda Road, Melbourne, Vic. 3004, Australia.
G Corresponding author. Email: narelle.warren@monash.edu
Australian Journal of Primary Health 25(1) 49-53 https://doi.org/10.1071/PY17119
Submitted: 29 August 2017 Accepted: 18 July 2018 Published: 12 December 2018
Abstract
People living with Parkinson’s disease (PWPD) in rural areas have limited access to local condition-specific care. This paper examines the healthcare preferences of PWPD living in rural areas and how a community-driven initiative to employ a movement disorder nurse (MDN) functioned to address barriers to health services access. A qualitative design facilitated an understanding of how interactions with the health system shaped PWPD and their carer’s experiences of living in a regional community. A total of 42 semi-structured interviews were conducted 6–9 months apart; 19 interviews with PWPD and 23 dyadic interviews. The findings support the contention that specialist care can be effectively delivered through allied health professionals in some settings. In particular, having access to a specialist MDN can cushion the effects of living with Parkinson’s disease in regional and rural areas where continuity of care and access to timely support is often difficult for people to find. The quality of social support provided by the MDN may increase people’s ability to cope in the face of an unpredictable disease course. This is consistent with prior research, which identified that a specialist nurse or allied health services for people living with chronic conditions is enhances quality of life.
References
Access Economics (2011) Living with Parkinson’s Disease - update. Challenges and Positive Steps for the Future. Report for Parkinson’s Australia. (Deloitte Access Economics: ACT, NSW, Australia) Available at https://www2.deloitte.com/au/en/pages/economics/articles/living-with-parkinsons-disease.html [Verified 19 September 2018]Aspinal F, Gridley K, Bernard S, Parker G (2012) Promoting continuity of care for people with long‐term neurological conditions: the role of the neurology nurse specialist. Journal of Advanced Nursing 68, 2309–2319.
| Promoting continuity of care for people with long‐term neurological conditions: the role of the neurology nurse specialist.Crossref | GoogleScholarGoogle Scholar |
Warren N, Ayton D (2018) (Re) negotiating normal every day: phenomenological uncertainty in Parkinson’s disease. In ‘Disability, normalcy and the everyday’. (Eds G Thomas, D Sakellariou) pp. 142–157. (Routledge: London)
Bourke L, Humphreys JS, Wakerman J, Taylor J (2012) Understanding rural and remote health: a framework for analysis in Australia. Health & Place 18, 496–503.
| Understanding rural and remote health: a framework for analysis in Australia.Crossref | GoogleScholarGoogle Scholar |
Brabenec L, Mekyska J, Galaz Z, Rektorova I (2017) Speech disorders in Parkinson’s disease: early diagnostics and effects of medication and brain stimulation. Journal of Neural Transmission 124, 303–334.
| Speech disorders in Parkinson’s disease: early diagnostics and effects of medication and brain stimulation.Crossref | GoogleScholarGoogle Scholar |
Charmaz K (1990) ‘Discovering’ chronic illness: using grounded theory. Social Science & Medicine 30, 1161–1172.
| ‘Discovering’ chronic illness: using grounded theory.Crossref | GoogleScholarGoogle Scholar |
Charmaz K (2006) ‘Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis: Introducing Qualitative Methods Series.’ (Sage: Thousand Oaks, CA, USA)
Davis JT, Ehrhart A, Trizcinski BH, Killie S, Mount J (2003) Variability of experiences for individuals living with Parkinson’s disease. Neurology Report 27, 38–45.
| Variability of experiences for individuals living with Parkinson’s disease.Crossref | GoogleScholarGoogle Scholar |
Duncan GF, Rositano P (2011) Parkinson’s disease in regional Australia. Rural and Remote Health 11, 1658–1670.
FitzGerald M, Pearson A, McCutcheon H (2001) Impact of rural living on the experience of chronic illness. The Australian Journal of Rural Health 9, 235–240.
| Impact of rural living on the experience of chronic illness.Crossref | GoogleScholarGoogle Scholar |
Glazebrook RM, Harrison SL (2006) Obstacles and solutions to maintenance of advanced procedural skills for rural and remote medical practitioners in Australia. Rural and Remote Health 6, 502
Hagell P (2007) Nursing and multidisciplinary interventions for Parkinson’s disease: what is the evidence? Parkinsonism & Related Disorders 13, S501–S508.
| Nursing and multidisciplinary interventions for Parkinson’s disease: what is the evidence?Crossref | GoogleScholarGoogle Scholar |
Hydén LC (2011a) The importance of providing scaffolding to support patient narratives when brain damage impairs story telling ability. Topics in Stroke Rehabilitation 18, 52–54.
| The importance of providing scaffolding to support patient narratives when brain damage impairs story telling ability.Crossref | GoogleScholarGoogle Scholar |
Hydén LC (2011b) Narrative collaboration and scaffolding in dementia. Journal of Aging Studies 25, 339–347.
| Narrative collaboration and scaffolding in dementia.Crossref | GoogleScholarGoogle Scholar |
Jarman B, Hurwitz B, Cook A, Bajekal M, Lee A (2002) Effects of community based nurses specialising in Parkinson’s disease on health outcome and costs: randomised controlled trial. BMJ (Clinical Research Ed.) 324, 1072
| Effects of community based nurses specialising in Parkinson’s disease on health outcome and costs: randomised controlled trial.Crossref | GoogleScholarGoogle Scholar |
Jones B, Hopkins G, Wherry SA, Lueck J, Das CP, Dugdale P (2016) Evaluation of a regional Australian nurse-led Parkinson’s service using the context, input, process, and product evaluation model. Clinical Nurse Specialist 30, 264–270.
| Evaluation of a regional Australian nurse-led Parkinson’s service using the context, input, process, and product evaluation model.Crossref | GoogleScholarGoogle Scholar |
Manderson L, Warren N (2010) The art of (re)learning to walk: trust on the rehabilitation ward. Qualitative Health Research 20, 1418–1432.
| The art of (re)learning to walk: trust on the rehabilitation ward.Crossref | GoogleScholarGoogle Scholar |
Markovic M. (2006) Analyzing qualitative data: health care experiences of women with gynecological cancer. Field Methods 18, 413–429.
| Analyzing qualitative data: health care experiences of women with gynecological cancer.Crossref | GoogleScholarGoogle Scholar |
Polak L, Green J (2016) Using joint interviews to add analytic value. Qualitative Health Research 26, 1638–1648.
| Using joint interviews to add analytic value.Crossref | GoogleScholarGoogle Scholar |
Reynolds H, Wilson-Barnett J, Richardson G (2000) Evaluation of the role of the Parkinson’s disease nurse specialist. International Journal of Nursing Studies 37, 337–349.
| Evaluation of the role of the Parkinson’s disease nurse specialist.Crossref | GoogleScholarGoogle Scholar |
Roberts DP, Ward BM, Russell DJ, O’Sullivan BG (2017) Accessibility and outcomes from a rural diabetes nurse-educator led self-management program. The Australian Journal of Advanced Nursing (Online) 34, 26–33.
Rygh EM, Hjortdahl P (2007) Continuous and integrated health care services in rural areas. A literature study. Rural and Remote Health 7, 766
Sakellariou D, Boniface G, Brown P (2013) Using joint interviews in a narrative based study on illness experiences. Qualitative Health Research 23, 1563–1570.
| Using joint interviews in a narrative based study on illness experiences.Crossref | GoogleScholarGoogle Scholar |
Smith KB, Humphreys JS, Wilson MG (2008) Addressing the health disadvantage of rural populations: how does epidemiological evidence inform rural health policies and research? The Australian Journal of Rural Health 16, 56–66.
| Addressing the health disadvantage of rural populations: how does epidemiological evidence inform rural health policies and research?Crossref | GoogleScholarGoogle Scholar |
Taylor B, de Vocht H (2011) Interviewing separately or as couples? Considerations of authenticity of method. Qualitative Health Research 21, 1576–1587.
| Interviewing separately or as couples? Considerations of authenticity of method.Crossref | GoogleScholarGoogle Scholar |
