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Self-Management Education for Persons with Parkinson’s Disease and Their Care Partners: A Quasi-Experimental Case-Control Study in Clinical Practice
Get PDFBackground. Parkinson’s disease is a neurodegenerative condition with both physical and mental consequences that affect many aspects of everyday life. Persons with Parkinson’s disease and their care partners want guidance from healthcare services in order to develop skills to adjust to life with a long-term condition. The Swedish National Parkinson School is a dyadic self-management programme to support both persons with Parkinson’s disease and care partners. Objective. To assess the outcomes of the Swedish National Parkinson School as reported by participants. Design. A quasi-experimental case-control study in clinical care using self-reported questionnaires. Participants. Swedish National Parkinson School was offered by health care professionals working in clinical care. Participants in the programme were also asked to participate in the study. A matched control group was recruited for a comparison of findings. In total, 92 persons with Parkinson’s disease and 55 care partners were included. Settings. Five Swedish geriatric and neurologic outpatient clinics. Method. Data were collected during 2015–2017, before and after participation in the National Parkinson School or before and after seven weeks of standard care. Outcomes were assessed using generic and Parkinson’s specific questionnaires. Descriptive statistics were used to describe baseline characteristics. Mann–Whitney U and Chi2 tests were used to test for between-group differences and within-group differences were tested by the Wilcoxon signed-ranks test. Results. Improvements regarding health status, constructive attitudes and approaches, and skill and technique acquisition were found after the intervention among persons with Parkinson’s disease. No changes were found among care partners. Conclusion. The findings indicate that the Swedish National Parkinson School may improve health status and self-management among persons with Parkinson’s disease, but further studies are needed to better understand the effects of the programme
Bør epilepsipasienter og pårørende informeres om risikoen for plutselig død?
Get PDFÅ høre eller lese om personer med epilepsi som dør brått og uventet, skremmer både epilepsipasienter og pårørende. Vi mener likevel det er riktig å informere om denne risikoen.måsjekke
Deltaking og medverknad for tilsette i helse- og omsorgssektoren - En oppsummering av kunnskap
Get PDFBakgrunn: Forsking og utviklingsarbeid har vist at dagens norske arbeidsliv har eit ubrukt potensiale når det gjeld tilsette sin medverknad og deltaking i sektoren. I denne sektoren er sjukefråværet høgare enn ønska, og det er eit problem med for tidleg avgang frå arbeidslivet. Arbeidslivshelsa er med andre ord ikkje god nok. Denne kunnskapsoppsummeringa har som mål å gje tilsette og leiarar i dei kommunale helse- og omsorgstenestene meir kunnskap om medverknad og deltaking og korleis ein kan påverka prosessar som støttar arbeidslivdemokratiet, fremja effektive og gode tenester, og betra arbeidshelsa.
Kunnskapsbidrag: Arbeidsgjevar har rett og plikt til å leggja til rette for reell medverknad og deltaking, og denne plikta er stadfesta i statlege føringar. Denne plikta vert i mange høve ikkje etterlevd av dei ansvarlege. Oppsummeringa viser at mange tilsette opplever ubalanse mellom ansvar og mynde og svak medverknad når det gjeld eige arbeid, i organiseringa av arbeidet og i plan- og strategiarbeid. Den viser at tilsette kan betra arbeidsmiljøet, medverka og delta på arbeidsplassen dersom dei får høve til det. Arbeidslivsdemokrati og effektivitet i tenestene (dvs. tilhøvet mellom det som vert gjort/produsert og kostnadene) og arbeidslivshelse er truga om ikkje medverknad og deltakinga frå tilsette og deira representantar vert tatt på alvor, og integrert i dagleg drift og styring.
Kunnskapsoppsummeringa svarar på fylgjande hovudspørsmål:
• Kva fremjar og kva hemmar medverknad og deltaking for tilsette i helse- og omsorgstenestene i kommunal sektor?
• Kva for ressursar og verkty kan takast i bruk for å sikra medverknad, deltaking og inkluderande arbeidsliv i helse- og omsorgstenestene i kommunal sektor
Kunnskapsbasert stemme- og fysisk trening for personer med Parkinsons sykdom: Medvirkningsbasert forsknings- og kvalitetsutviklingsprosjekt: Sluttrapport
Get PDFDenne studien viser hvordan kunnskapsbasert fysisk gruppetrening og stemmetrening i grupper kan tilpasses og gjennomføres for hjemmeboende personer med Parkinsons sykdom i en kommune.
Metode: Medvirkningsbasert aksjonsforsknings- og kvalitetsutviklingsdesign. Gjennomført i samarbeid med to private fysioterapeuter og en privat logoped, Asker kommune og forskere fra Universitetet i Sørøst-Norge, representanter fra Unicare og Norges Parkinsonforbund, samt faglige ressurspersoner. Organisert i faser som bygger på hverandre med lokal forankring og nettverksbygging, kunnskapstilegning, hospitering og opplæring av terapeutene, individuell kartlegging og opplæring av personer med Parkinsons sykdom, tilpassing og gjennomføring av stemme- og fysisk gruppetrening, individuell retesting og evalueringer. Data: PDQ-39, MNA, VHI, ROMP, Voice Analyst, TUG, 5xReise/sette seg, Step Test, 8M gangtest, 6 Min Gåtest, Borg skala. Individuelle kvalitative intervjuer ved inklusjon, etter 6 og 12 mnd trening, samt fokusgruppeintervjuer. Multivariate forskningsanalyser.
Resultater. 31 personer med Parkinsons sykdom gjennomførte 60 minutter fysisk treningsprogram inspirert av Parkinson Wellness Recovery, PWR to ganger pr uke i 12 mnd. PDQ-39 viste ingen signifikante endringer. Fysiske tester med StepTest, Reise/sette seg test, 8M gangtest, 6Min gåtest viste signifikante forskjeller med bedring i funksjon fra oppstart og etter 12 måneders fysisk gruppetrening. Deltagerne rapporterte at treningsprogrammet bidro til økt styrke, balanse og hurtighet. Standardisert testing hver 6 mnd og trening i gruppe styrket treningsmotivasjonen.
14 personer med Parkinsons sykdom gjennomførte 60 minutter stemmetreningsprogram inspirert av Pitch Limiting Voice Treatment, PLVT tre ganger pr. måned i 12 mnd. Radbound Oral Motor Inventory for Parkinsons disease (ROMP) og Voice Handicap Index (VHI) viste ingen signifikante endringer. Stemmetest med Voice Analyst Test viste signifikant forskjeller med bedring i stemmekvaliteten, pitch, fra oppstart til etter 12 måneder stemmetrening. Deltagerne rapporterte at de lærte å korrigere stemmen og bruke den dype stemmen ved bevisstgjøring, terping på øvelser samt ny kunnskap. Standardisert testing hver 6 mnd, stemmetreningsøvelser og samtaler i grupper var motiverende.
Konklusjon og anbefalinger: Personer med Parkinsons sykdom har ulik fysisk funksjon og ulik grad av endringer i stemmen. Gruppetrening må organiseres kontinuerlig, tilpasses den enkelte og ledes av fysioterapeuter og logoped med spesiell opplæring. Treningen er diagnosespesifikk og antiparkinsonistisk. Personer med Parkinsons sykdom trenger tid og repetisjoner for å lære øvelsene, gjøre de riktig og gjennomføre 60 minutters gruppetreningsprogram. Informasjon om effekten av stemme – og fysisk gruppetrening for personer med Parkinsons sykdom bør spres til alt helsepersonell; ‘Trening nytter’
What are the mechanisms that support healthcare professionals to adopt assisted decision-making practice? A rapid realist review
Get PDFBackground
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) establishes a right to legal capacity for all people, including those with support needs. People with disabilities have a legal right to be given the appropriate supports to make informed decisions in all aspects of their lives, including health. In Ireland, the Assisted Decision-Making (Capacity) Act (2015) ratifies the Convention and has established a legal framework for Assisted Decision Making (ADM). The main provisions of the Act are not yet implemented. Codes of Practice to guide health and social care professionals are currently being developed. Internationally, concerns are expressed that ADM implementation is poorly understood. Using realist synthesis, this study aims to identify Programme Theory (PT) that will inform ADM implementation in healthcare.
Methods
A Rapid Realist Review using collaborative methods was chosen to appraise relevant literature and engage knowledge users from Irish health and social care. The review was led by an expert panel of relevant stakeholders that developed the research question which asks, ‘what mechanisms enable healthcare professionals to adopt ADM into practice?’
To ensure the PT was inclusive of local contextual influences, five reference panels were conducted with healthcare professionals, family carers and people with dementia. PT was refined and tested iteratively through knowledge synthesis informed by forty-seven primary studies, reference panel discussions and expert panel refinement and consensus.
Results
The review has developed an explanatory PT on ADM implementation in healthcare practice. The review identified four implementation domains as significant. These are Personalisation of Health & ADM Service Provision, Culture & Leadership, Environmental & Social Re-structuring and Education, Training & Enablement. Each domain is presented as an explanatory PT statement using realist convention that identifies context, mechanism and outcome configurations.
Conclusions
This realist review makes a unique contribution to this field. The PT can be applied by policymakers to inform intervention development and implementation strategy. It informs the imminent policy and practice developments in Ireland and has relevance for other worldwide healthcare systems dealing with similar legislative changes in line with UNCRPD
High-Intensity Respiratory Muscle Training Improves Strength and Dyspnea Poststroke: A Double-Blind Randomized Trial
Get PDFObjective
To examine whether high-intensity home-based respiratory muscle training, that is, with higher loads, delivered more frequently and for longer duration, than previously applied, would increase the strength and endurance of the respiratory muscles, reduce dyspnea and respiratory complications, and improve walking capacity post-stroke.
Design
Randomized trial with concealed allocation, blinded participants and assessors, and intention-to-treat analysis.
Setting
Community-dwelling patients.
Participants
Patients with stroke, who had respiratory muscle weakness (N=38).
Interventions
The experimental group received 40-minute high-intensity home-based respiratory muscle training, 7 days per week, for 8 weeks, progressed weekly. The control group received a sham intervention of similar dose.
Main Outcome Measures
Primary outcome was inspiratory muscle strength (via maximal inspiratory pressure), whereas secondary outcomes were expiratory muscle strength (maximal expiratory pressure), inspiratory muscle endurance, dyspnea (Medical Research Council score), respiratory complications (hospitalizations), and walking capacity (6-minute walk test). Outcomes were measured at baseline, after intervention, and 1 month beyond intervention.
Results
Compared to the control, the experimental group increased inspiratory (27cmH2O; 95% confidence interval [95% CI], 15 to 40) and expiratory (42cmH2O; 95% CI, 25 to 59) strength, inspiratory endurance (33 breaths; 95% CI, 20 to 47), and reduced dyspnea (-1.3 out of 5.0; 95% CI, -2.1 to -0.6), and the benefits were maintained at 1 month beyond training. There was no significant between-group difference for walking capacity or respiratory complications.
Conclusion
High-intensity home-based respiratory muscle training was effective in increasing strength and endurance of the respiratory muscles and reducing dyspnea for people with respiratory muscle weakness post-stroke, and the magnitude of the effect was higher, than that previously reported in studies, which applied standard protocols.måsjekke
What constitutes ‘good care’ and ‘good carers’?: The normative implications of introducing reablement in Danish home care
Get PDFAs populations worldwide are ageing, Western welfare states are currently implementing welfare reforms aimed at curbing the rising need for social and healthcare services for ageing populations. A central element in home-care reforms in several welfare countries is reablement: short-term home-based training programmes aimed at re-enabling older people to live in their own homes independently of care. In this paper, we explore how transitioning from compensatory care to reablement care is not merely a practical process, but also a deeply normative one. Drawing on Annemarie Mol's concept of ‘ontonorms’ we analyse the normative dynamics involved in transitioning from one form of care to another as reflected in reablement professionals' practices and discourses. The paper draws on 10 months of multisited ethnographic fieldwork carried out from April 2015 to February 2016 in a Danish municipality, including participant observations of reablement practices as well as qualitative interviews with 13 professionals working with reablement. We demonstrate that professionals generally consider reablement to represent a desirable shift in home care from ‘bad care’ practices of making people passive through compensatory care, towards ‘good care’ practices of ‘keeping people going’ despite their limitations. Moreover, we demonstrate that while therapists are valued as ‘good carers’ due to their ability to focus on development and training, nurses and in particular home helpers are devalued as ‘bad carers’ due to their ‘caring genes’ and lack of technical and theoretical skills necessary for documentation work. Finally, we discuss the implications of these normative dynamics, which may risk stigmatising compensating care practices, although this form of care to a large extent continues to coexist with reablement practices. In conclusion, we argue for a more nuanced approach to care, recognising compensatory care and reablement as complementary forms of care, each doing good under different circumstances
Improving Walking Ability in People With Neurologic Conditions: A Theoretical Framework for Biomechanics-Driven Exercise Prescription
Get PDFThe purpose of this paper is to discuss how knowledge of the biomechanics of walking can be used to inform the prescription of resistance exercises for people with mobility limitations. Muscle weakness is a key physical impairment that limits walking in commonly occurring neurologic conditions such as cerebral palsy, traumatic brain injury, and stroke. Few randomized trials to date have shown conclusively that strength training improves walking in people living with these conditions. This appears to be because (1) the most important muscle groups for forward propulsion when walking have not been targeted for strengthening, and (2) strength training protocols have focused on slow and heavy resistance exercises, which do not improve the fast muscle contractions required for walking. We propose a theoretical framework to improve exercise prescription by integrating the biomechanics of walking with the principles of strength training outlined by the American College of Sports Medicine to prescribe exercises that are specific to improving the task of walking. The high angular velocities that occur in the lower limb joints during walking indicate that resistance exercises targeting power generation would be most appropriate. Therefore, we propose the prescription of plyometric and ballistic resistance exercise, applied using the American College of Sports Medicine guidelines for task specificity, once people with neurologic conditions are ambulating, to improve walking outcomes. This new theoretical framework for resistance training ensures that exercise prescription matches how the muscles work during walking.måsjekke
The effects of pressure redistribution of an innovative cradle-shaped turning mattress compared to manual re-positioning of bed-ridden patients
Get PDFAim:
The aim of this work was to investigate the pressure distribution in an innovative mattresssystem that is automatically shaped as a cradle before it slowly starts the turning process.
Method:
We have tested a system where the base is shaped as a cradle before the turning process starts. Pressure Imaging tests were performed when the test person was lying in different positions on a flat mattress (supine, 30o and 90o) over time and with the automated cradle turning (ACT) program.
Results / Discussion:
Pressure or pressure in combination with shear of the skin and underlying tissues over bony prominences is seen as the main cause of pressure ulcers (EPUAP). The amount of pressure/shear over time is a major factor for cell deformation and cell death. To reduce the time tissues are deformed, repositioning is paramount. A 30o side-lying position is recommended according to the EPUAP guidelines. However, reposition is seen as a challenge for the patient, i.e. as a disturbance, strongly affecting the sleep pattern and thus their Quality of Life. For caregivers, it is also challenging to reposition the patient in a stable, comfortable and secure 30o side-lying position. When comparing pressure images of the test person lying in a manual positioned 30o position with cushion support, with images while being rotated by the ACT system, we clearly observed better readings in the cradle system then in the manual positioned situation.
Conclusion:
The CT system had several advantages compared to manual repositioning.måsjekke