In the late stage of Parkinson’s disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients’ and their informal caregivers’ satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients (n = 11) and informal caregivers (n = 9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: “We are trying to get by both with and without the formal care” and five subcategories: “Availability of health care is important for managing symptoms and everyday life”; “Dependence on others and scheduled days form everyday life”; “There is a wish to get adequate help when it is needed”; “Mixed feelings on future housing and respite care”; and “Family responsibility and loyalty for a functioning everyday life”. Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.
BackgroundHousing environments that hinder performance of daily activities and impede participation in social life have negative health consequences particularly for the older segment of the population. From a public health perspective accessible housing that supports active and healthy ageing is therefore crucial. The objective of the present study was to make an inventory of environmental barriers and investigate accessibility problems in the ordinary housing stock in Sweden as related to the functional capacity of senior citizens. Particular attention was paid to differences between housing types and building periods and to identify environmental barriers generating the most accessibility problems for sub-groups of senior citizens.MethodsData on environmental barriers in dwellings from three databases on housing and health in old age was analysed (N = 1021). Four functional profiles representing large groups of senior citizens were used in analyses of the magnitude and severity of potential accessibility problems. Differences in terms of type of housing and building period were examined.ResultsHigh proportions of one-family houses as well as multi-dwellings had substantial numbers of environmental barriers, with significantly lower numbers in later building periods. Accessibility problems occurred already for senior citizens with few functional limitations, but more profound for those dependent on mobility devices. The most problematic housing sections were entrances in one-family houses and kitchens of multi-dwellings.ConclusionsDespite a high housing standard in the Swedish ordinary housing stock the results show substantial accessibility problems for senior citizens with functional limitations. To make housing accessible large-scale and systematic efforts are required.
397-405. DOI: 10.3109/11038128.2013.779321 General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.• Users may download and print one copy of any publication from the public portal for the purpose of private study or research.• You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. AbstractThe aim of this study was to explore experiences of mobility device (
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.