Conceptualizing autonomy in the context of chronic physical illness: relating philosophical theories to social scientific perspectives

The aim of this article is to conceptualize autonomy in the context of chronic physical illness. To this end, we compare and contrast a selection of contemporary philosophical theories of autonomy with social scientific perspectives on chronic illness, particularly models of disability and symbolic interactionism. The philosophical theories mainly depart from a positive conceptualization of autonomy, which involves actively shaping one's life and identifying with fundamental values. This conceptualization is preferred over a negative conceptualization, which defines autonomy as non-interference, for its compatibility with social models of disability and with the assumption that people are interdependent. Interference may disable, but also enable people with a chronic illness to shape their lives. What matters is that people can realize what they want to realize. We suggest that, in the context of chronic physical illness, autonomy might be conceptualized as correspondence between what people want their lives to be like and what their lives are actually like. Disturbed autonomy might be restored either by expanding opportunities to arrange life or by adjusting how one wants life to be arranged. The grounds for the latter approach might be questioned, first, if people have not adjusted what they want carefully, and second, if reorganization of the material and social environment would have made it unnecessary to adjust one's arrangement of life

Uitdagingen in de geriatrische revalidatiezorg: de ontwikkeling van een zorgpad

De geriatrische revalidatiezorg heeft te maken met een aantal uitdagingen op het gebied van coördinatie en continuïteit van de zorg. Om deze uitdagingen aan te pakken is een zorgpad ontwikkeld voor de betrokken organisaties (ziekenhuis, geriatrische revalidatiezorg en eerstelijnszorg). Het doel van dit artikel is het proces van (door)ontwikkeling van dit zorgpad toe te lichten en het resultaat ervan te beschrijven en te bediscussiëren. Het zorgpad is (door)ontwikkeld op basis van de eerste vier stappen van het cyclische implementatiemodel van Grol en Wensing: (1) ontwikkeling voorstel voor verandering; (2) analyse feitelijke zorg; (3) analyse doelgroep en setting; (4) ontwikkeling en selectie van interventies/strategieën. Volgens de betrokken partijen moest het zorgpad zich primair richten op verbetering van de zorgprocessen, waaronder de transfers, overdrachten en communicatie tussen de instellingen. Om dit te bereiken werden via literatuuronderzoek, consultatie van experts, interviews met betrokkenen, en werkgroepen van zorgverleners, patiënten en mantelzorgers, de huidige zorg en bestaande problemen geanalyseerd en oplossingen aangedragen voor verbetering. Dit heeft geresulteerd in een zorgpad waarin afspraken zijn vastgelegd over: (a) triage in het ziekenhuis; (b) betrekken van patiënt en mantelzorger bij (keuzemomenten in) de zorg; (c) tijdige en kwalitatief hoogwaardige overdrachten; en (d) adequate communicatie en afstemming tussen zorgverleners

Epidemiology of heart failure in a community-based study of subjects aged >= 57 years:Incidence and long-term survival

Background: Survival data from hospital-based or clinical trial studies of patients with chronic heart failure (CHF) do not represent survival in community-based settings. Aims: To determine the incidence of CHF and the associated long-term Survival in a community-based sample aged >= 57 years and to assess the mortality risk associated with sex and age. Methods: This study was part of the Groningen Longitudinal Aging Study. Results: Annual incidence of CHF per 1000 ranged from 2.5 in middle aged adults (57-60 years) up to 22.4 in older females (>= 80 years) and 28.2 in older males (>= 80 years). The 1, 2, 5 and 7-year survival rates were 74%, 65%, 45%, 32% for patients with CHF, compared to 97%, 94%, 80% and 70% in a matched reference group without CHF. Higher age (>= 76 years) was a risk factor for mortality (OR=2.1) and male sex was a risk Factor in those aged Conclusion: Long-term survival rates for patients with CHF in the community were worse than the known survival rates front clinical trials. There is a need for Studies describing the care of patients with CHF in the community, including the type of care, the provider, the quality of care and the outcome. (c) 2005 European Society of Cardiology. Published by Elsevier B.V. All rights reserved

Measurement properties of the EQ-5D across four major geriatric conditions: Findings from TOPICS-MDS

Background: As populations age, chronic geriatric conditions linked to progressive organ failure jeopardize health-related quality of life (HRQoL). Thus, this research assessed the validity and applicability of the EQ-5D (a common HRQoL instrument) across four major chronic geriatric conditions: hearing issues, joint damage, urinary incontinence, or dizziness with falls. Methods: The study sample comprised 25,637 community-dwelling persons aged 65 years and older residing in the Netherlands (Data source: TOPICS-MDS, www.topics-mds.eu ). Floor and ceiling effects were examined. To assess convergent validity, random effects meta-correlations (Spearman's rho) were derived between individual EQ-5D domains and related survey items. To further examine construct validity, the association between sociodemographic characteristics and EQ-5D summary scores were assessed using linear mixed models. Outcomes were compared to the overall study population as well as a 'healthy' subgroup reporting no major chronic conditions. Results: Whereas ceiling effects were observed in the overall study population and the 'healthy' subgroup, such was not the case in the geriatric condition subgroups. The majority of hypotheses regarding correlations between survey items and sociodemographic associations were supported. EQ-5D summary scores were lower in respondents who were older, female, widowed/single, lower educated, and living alone. Increasing co-morbidity had a clear negative effect on EQ-5D scores. Conclusion: This study supported the construct validity of the EQ-5D across four major geriatric conditions. For older persons who are generally healthy, i.e. reporting few to no chronic conditions, the EQ-5D confers poor discriminative ability due to ceiling effects. Although the overall dataset initially suggested poor discriminative ability for the EQ-5D, such was not the case within subgroups presenting with major geriatric conditions

What Are Effective Program Characteristics of Self-Management Interventions in Patients With Heart Failure? An Individual Patient Data Meta-analysis

To identify those characteristics of self-management interventions in patients with heart failure (HF) that are effective in influencing health-related quality of life, mortality, and hospitalizations

Ageing in place: een veelzijdig concept

Ageing in place is een veelvuldig genoemd concept. Echter, het is de vraag wat dit volgens de wetenschappelijke literatuur inhoudt. In dit artikel wordt het concept ageing in place in kaart gebracht aan de hand van de vijf hoofdthema’s zoals die uit de literatuur zijn gedestilleerd. Een meer eenduidig begrip van ageing in place zal professionals, beleidsmakers, onderzoekers en sociale netwerken kunnen helpen de veelzijdigheid van het concept te zien en toe te passen

Promoting functional activity among nursing home residents: a cross-sectional study on barriers experienced by nursing staff

Objective: To obtain insight into (a) the prevalence of nursing staff–experienced barriers regarding the promotion of functional activity among nursing home residents, and (b) the association between these barriers and nursing staff–perceived promotion of functional activity. Method: Barriers experienced by 368 nurses from 41 nursing homes in the Netherlands were measured with the MAastrIcht Nurses Activity INventory (MAINtAIN)-barriers; perceived promotion of functional activities was measured with the MAINtAIN-behaviors. Descriptive statistics and hierarchical linear regression analyses were performed. Results: Most often experienced barriers were staffing levels, capabilities of residents, and availability of resources. Barriers that were most strongly associated with the promotion of functional activity were communication within the team, (a lack of) referral to responsibilities, and care routines. Discussion: Barriers that are most often experienced among nursing staff are not necessarily the barriers that are most strongly associated with nursing staff–perceived promotion of functional activity

Dementia care redesigned: effects of small-scale living facilities on residents, their family caregivers, and staff

Objective: The purpose of this study was to evaluate the effects of small-scale living facilities in dementia care on residents, family caregivers, and staff. Design: This was a quasi-experimental study including 2 types of institutional nursing care: small-scale living facilities (experimental group), and regular psychogeriatric nursing home wards (control group). Three measures were conducted: at baseline and followups after 6 and 12 months. Setting: Twenty-eight houses in small-scale living facilities and 21 regular psychogeriatric nursing home wards. Participants: In total, 259 residents were included in the study: 124 in small-scale living facilities and 135 controls, matched on cognitive and functional status. Furthermore, 229 family caregivers were included and 305 staff members. Measurements: For residents, main outcome measures were quality of life, neuropsychiatric symptoms, and agitation. Main outcome measures for family caregivers included perceived burden, satisfaction, and involvement with care. Main outcome measures for staff were job satisfaction and motivation. Results: No effects were found for residents’ total quality of life, neuropsychiatric symptoms, and agitation. Family caregivers in small-scale living reported significantly less burden (adjusted mean difference 0.8, 95% CI 0.1–1.5) and were more satisfied with nursing staff (0.3, 0.2–0.5) than family caregivers in regular wards. No differences were found in their involvement with care. Overall, no significant differences were found for staff’s job satisfaction and motivation, although subgroup analyses using contrast groups (regarding typical small-scale living and regular wards) revealed more job satisfaction (2.0, 0.5-3.5) and motivation (0.6, 0.0–1.3) in small-scale living compared with regular wards. Conclusion: This study was unable to demonstrate convincing overall effects of small-scale living facilities. Because governmental policies and, in some countries, financial support, are increasingly aimed at providing small-scale, homelike care, it is suggested that this may not be a final solution to accomplish high-quality dementia care and that other options should be considered. Copyright © 2010 American Medical Directors Association, Inc