Decision-Making Process of Family Caregivers Regarding Placement of a Cognitively Impaired Elderly Relative

2012 ◽  
Vol 31 (3) ◽  
pp. 197-218 ◽  
Author(s):  
Francine Ducharme ◽  
Mélanie Couture ◽  
Julie Lamontagne
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Cognitively Impaired ◽  
Decision Making Process

scholarly journals Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Kanthee Anantapong ◽  
Nathan Davies ◽  
Justin Chan ◽  
Daisy McInnerney ◽  
Elizabeth L. Sampson
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Family Caregivers ◽  
Case Studies ◽  
Tube Feeding ◽  
Oral Feeding ◽  
Cochrane Library ◽  
Decision Making Process ◽  
Final Decision ◽  
Nutrition And Hydration

Abstract Background This 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. Methods We 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. Results Forty-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. Conclusions The 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.

scholarly journals Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: a scoping review

BMJ Open ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. e050208
Author(s):  
Clayon B Hamilton ◽  
Maryam Dehnadi ◽  
M Elizabeth Snow ◽  
Nancy Clark ◽  
Michelle Lui ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Scoping Review ◽  
Healthcare Quality ◽  
Healthcare Systems ◽  
Decision Making Process ◽  
Journal Articles ◽  
Rich Description ◽  
Literature Reviews

ObjectiveTo identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems.MethodsWe conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme.ResultsOf 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness.ConclusionsThe 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.

What Patients and Families Want to Know About Hospice (DRAFT)

2018 ◽  
Author(s):  
Regina Mackey ◽  
Kimberson Tanco
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Clinical Case ◽  
Decision Making Process ◽  
Advanced Illness ◽  
Initial Information ◽  
Dying Patients ◽  
Hospice Patients ◽  
The Family ◽  
Gain Access

Hospice services are widely used in the care of dying patients. With hospice, patients and their families gain access to various benefits and services. However, the decision to enroll into hospice can be difficult for patients with advanced illness and also the family caregivers. This study explores the hospice decision-making process and how the enrollment decision is shared between patients and their families. This study also explores the knowledge of hospice at the time of initial information visit and the patients’ and families’ priorities for information. The chapter also briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a relevant clinical case.

Medical Decision-Making around the Time of Death of Cognitively Impaired Nursing Home Residents: A Pilot Study

2004 ◽  
Vol 48 (2) ◽  
pp. 103-114 ◽  
Author(s):  
Jiska Cohen-Mansfield ◽  
Steven Lipson
Keyword(s):  
Decision Making ◽  
Nursing Home ◽  
Medical Decision Making ◽  
Nursing Home Residents ◽  
Medical Decision ◽  
Cognitively Impaired ◽  
Decision Making Process ◽  
Status Change ◽  
Comfort Care ◽  
Change Event

The purpose of this article is to describe the end-of-life process in the nursing home for three groups of cognitively–impaired nursing home residents: those who died with a medical decision-making process prior to death; those who died without such a decision-making process; and those who had a status–change event and a medical decision-making process, and did not die prior to data collection. Residents had experienced a medical status–change event within the 24 hours prior to data collection, and were unable to make their own decisions due to cognitive impairment. Data on the decision-making process during the event, including the type of event, the considerations used in making the decisions, and who was involved in making these decisions were collected from the residents' charts and through interviews with their physicians or nurse practitioners. When there was no decision-making process immediately prior to death, a decision-making process was usually reported to have occurred previously, with most decisions calling either for comfort care or limitation of care. When comparing those events leading to death with other status–change events, those who died were more likely to have suffered from troubled breathing than those who remained alive. Hospitalization was used only among those who survived, whereas diagnostic tests and comfort care were used more often with those who died. Those who died had more treatments considered and chosen than did those who remained alive. For half of those who died, physicians felt that they would have preferred less treatment for themselves if they were in the place of the decedents. The results represent preliminary data concerning decision-making processes surrounding death of the cognitively–impaired in the nursing home. Additional research is needed to elucidate the trends uncovered in this study.

Deciding on Institutionalization for a Relative with Dementia: The Most Difficult Decision for Caregivers

2006 ◽  
Vol 25 (2) ◽  
pp. 193-205 ◽  
Author(s):  
Chantal D. Caron ◽  
Francine Ducharme ◽  
Jennifer Griffith
Keyword(s):  
Decision Making ◽  
Nursing Home ◽  
Comparative Analysis ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Long Term Care ◽  
Decision Making Process ◽  
Term Care ◽  
Difficult Decision

ABSTRACTThe decision to move a family member with dementia to a nursing home is a difficult experience for caregivers. Complex psychosocial factors are involved and knowledge of predictive factors alone is insufficient. Using grounded theory, this study explores the decision-making process with regards to institutionalization, from the perspective of family caregivers. Fourteen people who moved a relative to long-term care in the preceding 6 months were interviewed. Data analysis using comparative analysis and line-by-line dimensional analysis was used to develop a theoretical model of the decision-making process. Three factors within the model were central to the process: (a) caregivers' perceptions of their ability to provide care, (b) caregivers' evaluations of their relatives' ability to make care decisions, and (c) the evolving influence of contextual factors and interactions with healthcare professionals. The contribution of these findings to new conceptualizations of institutionalization is discussed.

AAC Decision-Making and Mobile Technology: Points to Ponder

2014 ◽  
Vol 23 (2) ◽  
pp. 104-111 ◽  
Author(s):  
Mary Ann Abbott ◽  
Debby McBride
Keyword(s):  
Decision Making ◽  
Mobile Technology ◽  
Communication System ◽  
Augmentative And Alternative Communication ◽  
Evaluation Process ◽  
Decision Making Process ◽  
Alternative Communication ◽  
Ipod Touch ◽  
Feature Match

The purpose of this article is to outline a decision-making process and highlight which portions of the augmentative and alternative communication (AAC) evaluation process deserve special attention when deciding which features are required for a communication system in order to provide optimal benefit for the user. The clinician then will be able to use a feature-match approach as part of the decision-making process to determine whether mobile technology or a dedicated device is the best choice for communication. The term mobile technology will be used to describe off-the-shelf, commercially available, tablet-style devices like an iPhone®, iPod Touch®, iPad®, and Android® or Windows® tablet.

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