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: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.

Project description:Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.

Project description:BackgroundHealth care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models.MethodsIterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included.ResultsWe included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM.ConclusionsTo embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.

Project description:Background Shared decision-making provides an approach to discuss advance care planning in a participative and informed manner, embodying the principles of person-centered care. A number of guided approaches to achieve shared decision-making already exist, such as the three-talk model. However, it is uncertain whether daily practice methods in nursing home wards for persons with dementia comply with the underpinnings of this model. It is also uncertain whether professionals consider shared decision-making to be important in this context, and whether they perceive themselves sufficiently competent to practice this approach frequently. Methods The study has a cross-sectional design, with 65 wards (46 Belgian nursing homes) participating in the study. We compared nursing home professionals’ and residents’ perspectives on the level of shared decision-making during advance care planning conversations with ratings from external raters. Residents and professionals rated the level of shared decision-making by means of a questionnaire, which included the topic of the conversation. External raters assessed audio recordings of the conversations. Professionals filled in an additional self-report questionnaire on the importance of shared decision-making, their competence in practicing the approach, and with what frequency. Results At ward level, professionals and residents rated the average achieved level of shared decision-making 71.53/100 (??=?16.09) and 81.11/100 (??=?19.18) respectively. Meanwhile, raters gave average scores of 26.97/100 (??=?10.45). Only 23.8% of residents referred to advance care planning as the topic of the conversation. Professionals considered shared decision-making to be important (x?=4.48/5, ??=?0.26). This result contrasted significantly with the frequency (x?=3.48/5, ??=?0.51) and competence (x?=3.76/5, ??=?0.27) with which these skills were practiced (P?<?0.001). Conclusions Residents with dementia are grateful when involved in discussing their care, but find it difficult to report what is discussed during these conversations. Receiving more information about advance care planning could provide them with the knowledge needed to prepare for such a conversation. External raters observe a discrepancy between the three-talk model and daily practice methods. Training programs should focus on providing professionals with better knowledge of and skills for shared decision-making. They should also promote team-based collaboration to increase the level of person-centered care in nursing home wards for persons with dementia.

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.

Similar Datasets

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