Objectives: Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.Design: A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioural mechanisms underlying the process of decision making and looked at how the support of carers comes into play in making deliberate choices. Results:The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decisionmaking, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia. Conclusions:Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making-process, and therefore which mechanisms need to be promoted or discouraged through training.Words 246/250
This project investigated parents' and caregivers' perceptions of the fast-track surgery process with regard to their child's surgical procedure and hospital stay. The goal of this project was to review and improve the fast-track process. Participants were parents/caregivers of pediatric patients (ie, younger than 18 years) who had undergone a low-complexity cardiac surgical procedure on a fast-track basis at Great Ormond Street Hospital for Children, London, United Kingdom, between January 2006 and January 2008. Findings suggest that parents/caregivers overestimate the time it takes for several key milestones in the fast-track process to occur and that there is a need for preoperative and preadmission education that will allow parents/caregivers to be more involved in their child's care.
Background Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. Methods The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). Results One hundred sixty-five candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48 to 92/100. The median score for the crisis teams was 74.5 (range 67–92), and the median score for non-crisis teams was 60 (range 48–72). Conclusions With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future.
Background: Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. Methods: The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). Results: 165 candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48-92/100. The median score for the crisis teams was 74.5 (range 67-92), and the median score for non-crisis teams was 60 (range 48-72).Conclusions: With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future.
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