Preferences for rural specialist health care in the treatment of Parkinson's disease: exploring the role of community-based nursing specialists

2019 ◽  
Vol 25 (1) ◽  
pp. 49
Author(s):  
Veronica Coady ◽  
Narelle Warren ◽  
Nancy Bilkhu ◽  
Darshini Ayton

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.

2016 ◽  
Vol 40 (2) ◽  
pp. 194 ◽  
Author(s):  
Lucylynn Lizarondo ◽  
Catherine Turnbull ◽  
Tracey Kroon ◽  
Karen Grimmer ◽  
Alison Bell ◽  
...  

Objective South Australia is taking an innovative step in transforming the way its healthcare is organised and delivered to better manage current and future demands on the health system. In an environment of transforming health services, there are clear opportunities for allied health to assist in determining solutions to various healthcare challenges. A recent opinion piece proposed 10 clinician-driven strategies to assist in maximising value and sustainability of healthcare in Australia. The present study aimed to seek the perspectives of allied health clinicians, educators, researchers, policy makers and managers on these strategies and their relevance to allied health. Methods A survey of allied health practitioners was undertaken to capture their perspectives on the 10 clinician-driven strategies for maximising value and sustainability of healthcare in Australia. Survey findings were then layered with evidence from the literature. Results Highly relevant across allied health are the strategies of discontinuation of low value practices, targeting clinical interventions to those getting greatest benefit, active involvement of patients in shared decision making and self-management and advocating for integrated systems of care. Conclusions Allied health professionals have been involved in the South Australian healthcare system for a prolonged period, but their services are poorly recognised, often overlooked and not greatly supported in existing traditional practices. The results of the present study highlight ways in which healthcare services can implement strategies not only to improve the quality of patient outcomes, but also to offer innovative solutions for future, sustainable healthcare. The findings call for concerted efforts to increase the utilisation of allied health services to ensure the ‘maximum value for spend’ of the increasingly scarce health dollar. What is known about the topic? In medicine, clinician-driven strategies have been proposed to minimise inappropriate and costly care and maximise highly appropriate and less expensive care. These strategies were developed based on clinical experiences and with supporting evidence from scientific studies. What does this paper add? Major changes to the health system are required to slow down the growth in healthcare expenditure. This paper describes opportunities in which allied health practitioners can implement similar strategies not only to improve the quality of patient outcomes, but also to offer cost-effective solutions for a sustainable healthcare. What are the implications for practitioners? Allied health practitioners can provide solutions to healthcare challenges and assist in the transformation of healthcare in Australia. However, for this to happen, there should be concerted efforts to increase recognition of and support for the use of allied health services.


2018 ◽  
Vol 16 (3) ◽  
pp. 201-211
Author(s):  
Rachel Schwartz ◽  
Donna Zulman ◽  
Caroline Gray ◽  
Mary K Goldstein ◽  
Ranak Trivedi

Objectives Parkinson’s disease presents an evolving challenge for patients and families due to an unpredictable disease trajectory and symptoms that complicate social interactions. In this study, we explore neurologists’ perspectives on the challenges Parkinson’s disease presents for families and the strategies they use to improve communication and quality of life. Methods We conducted hour-long semi-structured interviews with 16 neurologists at 4 care delivery institutions in the San Francisco Bay Area, focusing on techniques neurologists use to support families through the Parkinson’s disease journey. Results Neurologists identified strategies for addressing caregiver–patient disagreements around symptom accuracy and negotiating driving safety. Family education is needed to contextualize patient symptoms and to identify psychosocial support resources. Unmet caregiver needs remain, particularly in the form of psychosocial support, respite care and support for unequal gender dynamics in the Parkinson’s disease caregiving experience. Discussion Family members of Parkinson’s disease patients face unique caregiving and interpersonal challenges due to the nature of the disease. Targeted education and structural support are needed to alleviate current burdens and allow for improved patient- and family-centered care.


2015 ◽  
Vol 156 (12) ◽  
pp. 472-478 ◽  
Author(s):  
Péter Kincses ◽  
Norbert Kovács ◽  
Kázmér Karádi ◽  
János Kállai

This paper is a summary report on the basic questions of the biopsychosocial approach to Parkinson’s disease. It deals with cognitive, affective and psychological health issues which significantly influence the outcome of the physical rehabilitation. In spite of the unchanged cognitive status, the psychological burden of the changes in the quality of life, the obstruction, the change in the affective tone, and the shrinking ability to fulfil social roles decrease the patient’s quality of life. An interdisciplinary approach is best suited for mitigating these effects. Not only the patient but also his/her family and environment is seriously affected by the disease and its consequences. Treatment and rehabilitation options for increasing or maintaining the quality of life of the affected patients are diverse, and significantly depend on the features of the health care system. The authors believe that the following review emphasizing health psychological principles may contribute to the work of professionals working in clinical and rehabilitational fields and through them may increase the quality of life of patients and their family. Orv. Hetil., 2015, 156(12), 472–478.


2021 ◽  
pp. 1-15
Author(s):  
Eduardo Tolosa ◽  
Georg Ebersbach ◽  
Joaquim J. Ferreira ◽  
Olivier Rascol ◽  
Angelo Antonini ◽  
...  

Background: A greater understanding of the everyday experiences of people with Parkinson’s disease (PD) and their carers may help improve clinical practice. Objective: The Parkinson’s Real-world Impact assesSMent (PRISM) study evaluated medication use, health-related quality of life (HRQoL) and the use of healthcare resources by people with PD and their carers. Methods: PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI). Results: Data were collected from 861 people with PD (mean age, 65.0 years; mean disease duration, 7.7 years) and 256 carers from six European countries. People with PD reported a large number of different co-morbidities, non-motor symptoms (mean NMSQuest score, 12.8), and impaired HRQoL (median PDQ-39 summary score, 29.1). Forty-five percent of people with PD reported at least one impulse control behaviour. Treatment patterns varied considerably between different European countries. Levodopa was taken in the last 12 months by 85.9% of participants, and as monotherapy by 21.8% . Carers, who were mostly female (64.8%) and the partner/spouse of the person with PD (82.1%), reported mild to moderate burden (mean ZBI total score, 26.6). Conclusions: The PRISM study sheds light on the lives of people with PD and those who care for them, re-emphasising the many challenges they face in everyday life. The study also provides insights into the current treatment of PD in Europe.


2021 ◽  
pp. 026921552199052
Author(s):  
Zonglei Zhou ◽  
Ruzhen Zhou ◽  
Wen Wei ◽  
Rongsheng Luan ◽  
Kunpeng Li

Objective: To conduct a systematic review evaluating the effects of music-based movement therapy on motor function, balance, gait, mental health, and quality of life among individuals with Parkinson’s disease. Data sources: A systematic search of PubMed, Embase, Cochrane Library, Web of Science, PsycINFO, CINAHL, and Physiotherapy Evidence Database was carried out to identify eligible papers published up to December 10, 2020. Review methods: Literature selection, data extraction, and methodological quality assessment were independently performed by two investigators. Publication bias was determined by funnel plot and Egger’s regression test. “Trim and fill” analysis was performed to adjust any potential publication bias. Results: Seventeen studies involving 598 participants were included in this meta-analysis. Music-based movement therapy significantly improved motor function (Unified Parkinson’s Disease Rating Scale motor subscale, MD = −5.44, P = 0.002; Timed Up and Go Test, MD = −1.02, P = 0.001), balance (Berg Balance Scale, MD = 2.02, P < 0.001; Mini-Balance Evaluation Systems Test, MD = 2.95, P = 0.001), freezing of gait (MD = −2.35, P = 0.039), walking velocity (MD = 0.18, P < 0.001), and mental health (SMD = −0.38, P = 0.003). However, no significant effects were observed on gait cadence, stride length, and quality of life. Conclusion: The findings of this study show that music-based movement therapy is an effective treatment approach for improving motor function, balance, freezing of gait, walking velocity, and mental health for patients with Parkinson’s disease.


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