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Residential care for those with neurological conditions: an exploration of three specialist neurological care facilities in the UK
- Authors:
- WILSON Eleanor, AUBEELUCK Aimee
- Journal article citation:
- Journal of Care Services Management, 7(2), 2013, pp.61-71.
- Publisher:
- Taylor and Francis
Neurological conditions account for a high number of years lived with disability. Progressive long-term neurological conditions include Huntington's disease, Parkinson's disease, motor neurone disease, and multiple sclerosis. A multidisciplinary approach is recommended, but there is little evidence of the types of support needed for people living in long-term residential care facilities with these conditions. The authors used a qualitative case study approach to evaluate the care provided by three long-term residential care facilities. Focus groups (n = 5), interviews (n = 13), and observations were undertaken to engage 35 staff members, service users, and family members. Findings show an ethos of personalised and tailored care where continuity of staffing created a homely environment. Physical spaces were adapted to meet the needs of residents. On-site physiotherapy services were provided for all residents to proactively manage conditions and maintain as much function as possible. A range of social activities were also provided to engage residents in a variety of ways. These were felt to be delivered by dedicated staff members in specialist spaces and in consultation with residents. Participants based at the facilities reported high levels of specialist expertise. Findings from this evaluation highlight a number of areas of best practice. However, large-scale, longitudinal studies designed to capture measurable outcomes or provide cost–benefits analysis are now needed. (Edited publisher abstract)
Future planning and financial education needs for asset building among persons with multiple sclerosis in rural areas
- Authors:
- PUTMAN Michelle, TANG Fengyan
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 5(2), 2006, pp.69-93.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This paper presents findings from a study of individuals with multiple sclerosis examining their planning and preparation activities for their future independent living and long-term care needs. Data collected from a representative sample of National Multiple Sclerosis Society members in the greater metropolitan St. Louis and eastern Illinois area of the United States indicate significant differences in income, assets, education, health and functional limitation status between individuals living in rural versus urban areas. Additionally, findings show respondents with greater levels of education and assets, and those living in urban areas, are more likely to have saved for retirement, made legal preparations, or engaged in planning activities for future needs. Recommendations for asset building programs include incorporating education and training on planning for independent living and long-term care into financial planning curriculum, particularly for people with multiple sclerosis living in rural areas. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Measuring carer burden in informal carers of patients with long-term conditions
- Authors:
- KUDRA Aleksandra, LEES Carolyn, MORRELL-SCOTT Nicola
- Journal article citation:
- British Journal of Community Nursing, 22(5), 2017, p.230–236.
- Publisher:
- MA Healthcare
- Place of publication:
- London
Introduction: The aim of this literature review is to identify the most common tools used to measure burden in carers of people with Parkinson's disease (PD), heart failure (HF), multiple sclerosis (MS) and chronic obstructive pulmonary disease (COPD). Method: Databases such as Medline, PsycINFO, CINAHL and Academic Search Complete were searched. Studies in which carer burden was measured were included. Results: Zarit Burden Inventory and Caregiver Reaction Assessment were most commonly used to measure carer burden, regardless of the chronic condition. A wide range of other instruments were also used. Conclusions: Even though a range of tools are available, further improvements are necessary in order to enable healthcare professionals to identify carers experiencing high burden. (Publisher abstract)
Developing collective advocacy for people who have long-term contact with health or social services: final report
- Authors:
- SCOTTISH HUMAN SERVICES TRUST,., SCOTTISH DEVELOPMENT CENTRE FOR MENTAL HEALTH
- Publisher:
- Scottish Human Services Trust
- Publication year:
- 2003
- Pagination:
- 66p.
- Place of publication:
- Edinburgh
This report is a result of a research project commissioned by the Scottish Human Services Trust that studies collective advocacy for people who have long-term contact with health or social care services. The purpose of the study was to map, in two geographical areas, the range of groups whose role includes, or potentially includes, collective advocacy. Also, to identify the issues currently faced by groups in promoting the interests of members and achieving involvement and influence, and to highlight key areas for development that would be required to enhance capacity for collective advocacy. Five different illnesses and health conditions were selected for the study: cancer, heart disease, multiple sclerosis, diabetes and motor neurone disease.