Dataset Information

Shared decision-making for people living with dementia in extended care settings: a systematic review.

ABSTRACT:

Background

Shared decision-making is recognised as an important element of person-centred dementia care.

Objectives

The aim of this review was to explore how people living with dementia and cognitive impairment can be included in day-to-day decisions about their health and care in extended care settings.

Design

A systematic review including primary research relating to shared decision-making, with cognitively impaired adults in (or transferrable to) extended care settings. Databases searched were: CINAHL, PubMed, the Cochrane Library, NICE Evidence, OpenGrey, Autism Data, Google Scholar, Scopus and Medicines Complete (June to October 2016 and updated 2018) for studies published in the last 20 years.

Results

Of the 19 included studies 15 involved people with living dementia, seven in extended care settings. People living with cognitive impairment often have the desire and ability to participate in decision-making about their everyday care, although this is regularly underestimated by their staff and family care partners. Shared decision-making has the potential to improve quality of life for both the person living with dementia and those who support them. How resources to support shared decision-making are implemented in extended care settings is less well understood.

Conclusions

Evidence suggests that people living with cognitive impairment value opportunities to be involved in everyday decision-making about their care. How these opportunities are created, understood, supported and sustained in extended care settings remains to be determined.

Trial registration number

CRD42016035919.

SUBMITTER: Daly RL

PROVIDER: S-EPMC6009462 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Shared decision-making for people living with dementia in extended care settings: a systematic review.

Daly Rachel Louise RL Bunn Frances F Goodman Claire C

BMJ open 20180609 6

<h4>Background</h4>Shared decision-making is recognised as an important element of person-centred dementia care.<h4>Objectives</h4>The aim of this review was to explore how people living with dementia and cognitive impairment can be included in day-to-day decisions about their health and care in extended care settings.<h4>Design</h4>A systematic review including primary research relating to shared decision-making, with cognitively impaired adults in (or transferrable to) extended care settings. ...[more]

PMID: 29886439

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Project description:ObjectiveShared decision-making (SDM) supports patients to make informed and value-based decisions about their care. We are developing an intervention to enable healthcare professionals to support patients' pulmonary rehabilitation (PR) decision-making. To identify intervention components we needed to evaluate others carried out in chronic respiratory diseases (CRDs). We aimed to evaluate the impact of SDM interventions on patient decision-making (primary outcome) and downstream health-related outcomes (secondary outcome).DesignWe conducted a systematic review using the risk of bias (Cochrane ROB2, ROBINS-I) and certainty of evidence (Grading of Recommendations Assessment, Development and Evaluation) tools.Data sourcesMEDLINE, EMBASE, PSYCHINFO, CINAHL, PEDRO, Cochrane Central Register of Controlled Trials, the International Clinical Trials Registry Platform Search Portal, ClinicalTrials.gov, PROSPERO, ISRCTN were search through to 11th April 2023.Eligibility criteriaTrials evaluating SDM interventions in patients living with CRD using quantitative or mixed methods were included.Data extraction and synthesisTwo independent reviewers extracted data, assessed risk of bias and certainty of evidence. A narrative synthesis, with reference to The Making Informed Decisions Individually and Together (MIND-IT) model, was undertaken.ResultsEight studies (n=1596 (of 17 466 citations identified)) fulfilled the inclusion criteria.Five studies included components targeting the patient, healthcare professionals and consultation process (demonstrating adherence to the MIND-IT model). All studies reported their interventions improved patient decision-making and health-related outcomes. No outcome was reported consistently across studies. Four studies had high risk of bias, three had low quality of evidence. Intervention fidelity was reported in two studies.ConclusionsThese findings suggest developing an SDM intervention including a patient decision aid, healthcare professional training, and a consultation prompt could support patient PR decisions, and health-related outcomes. Using a complex intervention development and evaluation research framework will likely lead to more robust research, and a greater understanding of service needs when integrating the intervention within practice.Prospero registration numberCRD42020169897.

Project description:BackgroundThis systematic review aimed to explore the process of decision-making for nutrition and hydration for people living with dementia from the perspectives and experiences of all involved.MethodsWe searched CINAHL, the Cochrane Library, EMBASE, MEDLINE and PsycINFO databases. Search terms were related to dementia, decision-making, nutrition and hydration. Qualitative, quantitative and case studies that focused on decision-making about nutrition and hydration for people living with dementia were included. The CASP and Murad tools were used to appraise the quality of included studies. Data extraction was guided by the Interprofessional Shared Decision Making (IP-SDM) model. We conducted a narrative synthesis using thematic analysis. PROSPERO registration number CRD42019131497.ResultsForty-five studies were included (20 qualitative, 15 quantitative and 10 case studies), comprising data from 17 countries and 6020 patients, family caregivers and practitioners. The studies covered a range of decisions from managing oral feeding to the use of tube feeding. We found that decisions about nutrition and hydration for people living with dementia were generally too complex to be mapped onto the precise linear steps of the existing decision-making model. Decision-making processes around feeding for people living with dementia were largely influenced by medical evidence, personal values, cultures and organizational routine. Although the process involved multiple people, family caregivers and non-physician practitioners were often excluded in making a final decision. Upon disagreement, nutrition interventions were sometimes delivered with conflicting feelings concealed by family caregivers or practitioners. Most conflicts and negative feelings were resolved by good relationship, honest communication, multidisciplinary team meetings and renegotiation.ConclusionsThe decision-making process regarding nutrition and hydration for people living with dementia does not follow a linear process. It needs an informed, value-sensitive, and collaborative process. However, it often characterized by unclear procedures and with a lack of support. Decisional support is needed and should be approached in a shared and stepwise manner.

Project description:OBJECTIVE:To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. DESIGN:A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. SETTING:Community settings and nursing homes in the Netherlands. PARTICIPANTS:19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). RESULTS:The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. CONCLUSION:Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

Project description:Shared decision making (SDM) is important in achieving patient-centered care. SDM tools such as decision aids are intended to inform the patient. When used to assist in decision making between treatments, decision aids have been shown to reduce decisional conflict, increase ease of decision making, and increase modification of previous decisions.The purpose of this systematic review is to assess the impact of computerized decision aids on patient-centered outcomes related to SDM for seriously ill patients.PubMed and Scopus databases were searched to identify randomized controlled trials (RCTs) that assessed the impact of computerized decision aids on patient-centered outcomes and SDM in serious illness. Six RCTs were identified and data were extracted on study population, design, and results. Risk of bias was assessed by a modified Cochrane Risk of Bias Tool for Quality Assessment of Randomized Controlled Trials.Six RCTs tested decision tools in varying serious illnesses. Three studies compared different computerized decision aids against each other and a control. All but one study demonstrated improvement in at least one patient-centered outcome. Computerized decision tools may reduce unnecessary treatment in patients with low disease severity in comparison with informational pamphlets. Additionally, electronic health record (EHR) portals may provide the opportunity to manage care from the home for individuals affected by illness. The quality of decision aids is of great importance. Furthermore, satisfaction with the use of tools is associated with increased patient satisfaction and reduced decisional conflict. Finally, patients may benefit from computerized decision tools without the need for increased physician involvement.Most computerized decision aids improved at least one patient-centered outcome. All RCTs identified were at a High Risk of Bias or Unclear Risk of Bias. Effort should be made to improve the quality of RCTs testing SDM aids in serious illness.

Dataset Information

Shared decision-making for people living with dementia in extended care settings: a systematic review.

Background

Objectives

Design

Results

Conclusions

Trial registration number

Publications

Shared decision-making for people living with dementia in extended care settings: a systematic review.

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