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The same old process?: older people, participation and deliberation
- Author:
- BARNES Marian
- Journal article citation:
- Ageing and Society, 25(2), March 2005, pp.245-259.
- Publisher:
- Cambridge University Press
Opportunities for older people to take part in decision making about public policies and services are expanding in the United Kingdom and elsewhere. This paper considers the potential of older people's participation in policy processes for both transforming the policy process and for achieving socially just outcomes. It argues that the way in which such participation takes place, in particular the nature of the deliberative processes, affects both who will feel able to take part and the capacity to develop new policy discourses which can challenge official perspectives and assumptions. It draws from critical perspectives on deliberative democracy to provide a theoretical framework. This work emphasises the importance of story telling and forms of exchange designed to offer recognition to others, as well as the rational argument more usually associated with deliberation on matters of public policy. The argument is illustrated with examples of participation initiatives that have involved ‘active’ older people and those who are users of social care services. Different styles and processes of exchange are distinguished in the three case studies. In one, active facilitation enables individual stories of ageing and of service use to be woven into collective narratives that offer an alternative vision of care services. In another, a strong emphasis on ‘greeting’ enables conflicting views to be expressed without participants falling out. In the third, styles of exchange familiar in formal debate limit the development of an alternative discourse. The conclusion suggests that attention needs to be given to the process of participation as well as to outcomes.
Decision-making tools and their influence on caseworkers' room for discretion
- Author:
- HOYBYE-MORTENSEN Matilde
- Journal article citation:
- British Journal of Social Work, 45(2), 2015, pp.600-615.
- Publisher:
- Oxford University Press
One of the cornerstones in the provision of social services in modern welfare states is decision making about who is eligible for particular services or benefits. Here, the central decision maker is the caseworker who assesses clients’ needs and obligations. In response to concerns regarding decision-making processes and outcomes, decision-making tools directing how a decision should be made and documented are implemented. The literature on front line workers and regulation provides no clear answers concerning the relationship between regulation, such as decision-making tools, and room for discretion. This article explores how decision-making tools affect caseworkers’ room for discretion. The article reports on findings from a qualitative cross-sector study of three decision-making tools used in employment services, child protection and elderly services in Denmark. The empirical data consist of thirty group interviews with caseworkers. Even though all of the tools are in the shape of a form that is to be filled in, differences are found across decision-making tools. For instance, it seems as though forms based on a theoretical foundation have greater impact on caseworkers’ room for discretion than those based on an understanding of information as neutral and objective, since the latter requires intensive interpretation on the part of the caseworkers. (Publisher abstract)
End of life care for community dwelling older people with dementia: an integrated review
- Authors:
- GOODMAN Claire, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 25(4), April 2010, pp.329-337.
- Publisher:
- Wiley
This paper reviews the literature for end-of-life care for older people with dementia living in the community. Reviewing studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included, a user representative group informed decisions on the breadth of literature used, with each study selected being screened independently by two reviewers using a standardised check list. Of the 68 papers included, only 12 were exclusively concerned living and dying with dementia at home, and 6 studies included evidence from people with dementia. The studies grouped into four broad categories: dementia care towards the end of life; palliative symptom management for people with dementia; predicting the approach of death for people with dementia; and decision-making. The few studies that developed dementia specific tools to guide end of life care and outcome measures demonstrated both what could be achieved, and how much more needs to be done. The authors concluded that research pertaining to end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses, and that there is a need for further investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.
Micromanaging death: process preferences, values, and goals in end-of-life medical decision making
- Authors:
- HAWKINS Nikki Ayers, et al
- Journal article citation:
- Gerontologist, 45(1), February 2005, pp.107-117.
- Publisher:
- Oxford University Press
This study examined patients' and surrogates' attitudes about using advance directives to manage end-of-life medical care. It also explored process preferences, or how patients want decisions to be made. Data come from the third wave of the Advance Directives, Values Assessment, and Communication Enhancement project, a longitudinal study designed to investigate psychological assumptions underlying the use of advance directives. Three-hundred thirty-seven outpatients aged 65 and older and their designated surrogate decision makers completed interviews and questionnaires. Very few individuals wished to document specific medical treatment preferences and mandate that they be followed, without exception, near death. Most desired to express more general preferences, such as values and goals for care, in addition to (or, instead of) specific treatment preferences and to allow surrogate decision makers leeway in decision making. Patient-to-patient variability with regard to process preferences was substantial, as was surrogates' misunderstanding of the patients' process preferences. Very few individuals may desire the standard approach to advance care planning whereby preferences for specific life-sustaining treatments are documented and these requests are strictly followed near death. Instead, patient autonomy may be better served by emphasizing discussion of process preferences and leeway in decision making.
'Making the best of things’: relatives' experiences of decisions about care-home entry
- Authors:
- DAVIES Sue, NOLAN Mike
- Journal article citation:
- Ageing and Society, 23(4), July 2003, pp.429-450.
- Publisher:
- Cambridge University Press
Despite the growing awareness of the significance of helping a relative to relocate to a care home as a key phase in the care-giving career, relatively few British studies have explored this experience in depth. Informed by a constructivist perspective, this study sought a better understanding of nursing home placements from the viewpoint of relatives. Data were collected in 37 semi-structured interviews involving 48 people who had assisted a close relative to move into a nursing home. Analysis revealed three perceived phases to the transition: ‘making the best of it’, ‘making the move’ and ‘making it better’. The relatives' experiences through these phases had five perceived elements, all of which were continua, from absent to very strong, reflecting the extent to which they were felt. They were: operating ‘under pressure’ or not; ‘in the know’ or ‘working in the dark’; ‘working together’ or ‘working alone’; ‘in control of events’ or not, and ‘supported’ or ‘unsupported’ both practically and emotionally. This paper reports findings about the first phase of the transition, ‘making the best of it’, and documents the experiences of decision-making about nursing home placements. It is argued that health and social care practitioners have enormous potential to influence whether or not helping a relative to move into a nursing home is perceived as a positive choice.
Meaning as outcome: understanding the complexity of decision-making around residential placement in aged care
- Author:
- TILSE Cheryl
- Journal article citation:
- Australian Social Work, 53(4), December 2000, pp.15-19.
- Publisher:
- Taylor and Francis
Changes in aged care and health policy have introduced an increasingly complex assessment, resource option, and economic and regulatory context for decision-making regarding relocation to residential care. This article reports on an Australian study exploring residential placement from the perspective of spouses who place a long-term partner in an aged care facility. It highlights the importance of understanding the meaning of such decision-making for the spouse who remains at home and explores that ways in which the placement is constructed as either a continuation of, or a refusal to, care for a long-term partner. The paper draws out the implications for social work practice and identifies the challenge to merge knowledge of resource packages, care options and financial arrangements with a concern with the processes of decision-making and the emotional and symbolic aspects of such decisions.
Health effects of the relocation of patients with dementia: a scoping review to inform medical and policy decision-making
- Authors:
- RYMAN Frida V M, et al
- Journal article citation:
- Gerontologist, 59(6), 2019, pp.e674-e682.
- Publisher:
- Oxford University Press
Background and Objectives: Research into the relocation (including international relocation) of people with dementia is increasingly important due to the ageing population and latest developments in the international politics (including globalisation and concerns over international migration). There is need for an overview of the health effects of relocation to facilitate and inform decision- and policy-making regarding these relocations. The aim of this literature review was to provide insight into the physical, psychological, and social consequences of varied types of relocations of older adults suffering from dementia. Research Design and Methods: A scoping literature review with a systematic search was performed in PubMed, Web of Science, PsychInfo, JSTOR, and ScienceDirect. The articles dealing with subject of relocation of older adults from 1994 to 2017 were included and analysed. Methodological quality assessment was performed for all articles. Results: Final list included 13 articles. The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioural, and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress. Discussion and Implications: The outcomes of the study suggest definite evidence for the negative effects of relocation of the older adults. This research aims to be used as the support of the legal and medical decisions of relocation of patients with dementia. (Edited publisher abstract)
Experiences with and outcomes of Advance Care Planning in bereaved relatives of frail older patients: a mixed methods study
- Authors:
- OVERBEEK Anouk, et al
- Journal article citation:
- Age and Ageing, 48(2), 2019, pp.299-306.
- Publisher:
- Oxford University Press
Background: Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making. Objective: to investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives’ preparation for decision-making and on their levels of anxiety and depression. Design: cluster randomised controlled trial. Setting: residential care homes in the Netherlands and community setting. Subjects: bereaved relatives of care home residents and community-dwelling frail older patients. Methods:16 residential care homes were randomised to either the intervention group, where patient-participants were offered facilitated ACP, or the control group (n= 201), where they received ‘care as usual’. If patient-participants died, relatives were approached for an interview. Relatives were asked who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, this study compared relatives’ preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454). Results interviews were conducted with 39/51 (76%) bereaved relatives (intervention group: n = 20, control group: n = 19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patients’ preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to 5 of 11 relatives in the control group (P = 0.03). Relatives’ levels of anxiety and depression did not differ significantly between groups. Conclusions: in our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression. (Edited publisher abstract)
The impact of the 2005 Mental Capacity Act on social workers' decision making and approaches to the assessment of risk
- Author:
- McDONALD Ann
- Journal article citation:
- British Journal of Social Work, 40(4), June 2010, pp.1229-1246.
- Publisher:
- Oxford University Press
While there is no body of law relating directly to older people, the 2005 Mental Capacity Act in England and Wales has introduced a statutory system for assessment and substituted decision making for people lacking the capacity to make independent decisions, including decision making by older people with dementia. This paper, based on research into the early impact of the Act on social work practice, identifies three distinct types of approach to risk emerged: legalistic; actuarial; and rights-based. These three types of social work practice are discussed in the context of modernist assumptions of rationality and self-interest, the demands of a risk society for proficiency at decision making, and the relationship between moral and legal dialogue where social workers intervene when capacity is challenged. The author highlights how the outcomes are relevant to the changing context of social work with people with dementia, the introduction of individual budgets replacing directly provided services and the development of a National Dementia Strategy. The author argues that, although risk-based and actuarial types currently govern practice, rights-based approaches are necessary to support older people in making choices, counteract stereotypes and promoting well-being.
The role of individual, interpersonal, and organisational factors in mitigating burnout among elderly Chinese volunteers
- Authors:
- YAN Elsie Chau-wai, TANG Catherine So-kum
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(9), September 2003, pp.795-802.
- Publisher:
- Wiley
This study examined the role of individual, interpersonal, and organisational factors in mitigating burnout among elderly Chinese volunteers in Hong Kong. A total of 295 elderly Chinese volunteers were individually interviewed on their demographic characteristics, voluntary service experience, physical health status, general self-efficacy, social support, satisfaction and perceived benefit from volunteer work, and burnout symptoms. Exploratory factor analysis was first performed to determine the underlying dimensions of burnout experience. Correlation analyses were then conducted to explore associations among major variables. Hierarchical regression analyses were also performed to unearth the relative contribution of various factors in predicting burnout among elderly volunteers. A two-factor structure of burnout, namely lack of personal accomplishment and emotional depletion, was found. Demographics, individual, interpersonal, and organizational factors were significant predictors of lack of personal accomplishment. In particular, personal accomplishment was best predicted by a long duration of voluntary work service and high levels of self-efficacy, work satisfaction, and perceived benefit. For emotional depletion, only demographics and individual factors were significant predictors. A low level of emotional depletion was best predicted by older age, a short duration of voluntary work experience, and good health. Burnout experience was evident among elderly Chinese volunteers. There were different predictors of affective and cognitive components of burnout. Findings have significant implications to attenuate burnout symptoms among elderly volunteers.