scholarly journals ‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

2019 ◽  
Vol 48 (6) ◽  
pp. 903-909 ◽  
Author(s):  
Victoria Shepherd ◽  
Kerenza Hood ◽  
Mark Sheehan ◽  
Richard Griffith ◽  
Fiona Wood
Keyword(s):  
Decision Making ◽  
Family Members ◽  
Research Participation ◽  
Structured Interviews ◽  
Number Of Factors ◽  
Complex Process ◽  
Decision Making Capacity ◽  
Supportive Interventions ◽  
Proxy Decision Making ◽  
Conducting Research

Abstract Background Research into dementia and other conditions connected with cognitive impairments is essential but conducting research with populations who lack capacity to provide consent involves a number of ethical, legal and practical challenges. In England and Wales, family members can act as a consultee or legal representative on behalf of someone who lacks capacity. However, there is a paucity of research about how family members make decisions concerning research participation. Objective To explore family members’ experiences of proxy decision-making for research. Understanding how proxy decisions are made could lead to interventions to support greater inclusion of individuals in research who have impaired decision-making capacity. Methods Semi-structured interviews were conducted with a purposive sample of 17 family members who had experience as a proxy for making decisions about participation in research, including those who had agreed to participation and those who declined. Thematic analysis was used to examine experiences and generate findings for research practice and to develop future supportive interventions. Results Proxy decision-making is highly contextualised. Proxies balance a number of factors when deciding about research participation, including the person’s values and preferences, within the specific context of the study, and the practicalities of being involved. Proxies use these factors to construct a decision that is authentic to the person they care for. Conclusions Proxy decision-making for research is a complex process with inter-woven layers of decision-making. Decisions can be problematic for some proxies who may benefit from decision support to make an informed decision about research participation on behalf of a family member.

Decision-making capacity for research participation among individuals in the CATIE schizophrenia trial

2005 ◽  
Vol 80 (1) ◽  
pp. 1-8 ◽  
Author(s):  
Scott Stroup ◽  
Paul Appelbaum ◽  
Marvin Swartz ◽  
Mukesh Patel ◽  
Sonia Davis ◽  
...  
Keyword(s):  
Decision Making ◽  
Research Participation ◽  
Decision Making Capacity

scholarly journals DECISION-MAKING AT THE FIRST MANAGEMENT LEVEL: THE INTERFERENCE OF THE ORGANIZATIONAL CULTURE

2018 ◽  
Vol 19 (3) ◽  
Author(s):  
GUSTAVO G. MARCHISOTTI ◽  
MARIA DE L. C. DOMINGOS ◽  
RODRIGO L. DE ALMEIDA
Keyword(s):  
Decision Making ◽  
Organizational Culture ◽  
Treatment Technique ◽  
Exploratory Research ◽  
Structured Interviews ◽  
Management Level ◽  
Decision Making Capacity ◽  
Practical Usefulness ◽  
The One ◽  
Different Origins

ABSTRACT Purpose: This article aims at explaining how a decision is made in the first management level, within five different organizations, from different origins - American, Brazilian and Chinese - in different branches of activity. Originality/value: This is an original work, since it goes beyond the frontiers of knowledge about the subject researched, both for its approach and for its practical usefulness in the day-to-day of the decision makers, being useful for both professionals - and decision making - and for companies - on how to improve the decision-making capacity of their managers. Design/methodology/approach: Fifty managers were interviewed, through the application of a qualitative exploratory research, with the collection of data through semi-structured interviews and content analysis as data analysis and treatment technique. Findings: One may conclude that the decision-making of the first level decision-making managers is more rational. Also, the organizational culture, among the studied variables is the one with the greater impact in the way this management level makes the decisions. This influence of the organizational culture contains three important elements: 1. the need of the manager to act procedurally, using the rules and standards of the company, 2. the use of supporting tools for the decision-making and 3. the learning from the current relationship - or from the past one - with their peers. To go deeper in the theme, we suggest the analysis of the influence of gender in decision-making, under the focus of rationality or intuition, in the first level of the managerial function of the organizations.

The Concerns and Experience of Decision-Making Regarding Do-Not-Resuscitate Orders Among Caregivers in Hospice Palliative Care

2020 ◽  
Vol 38 (2) ◽  
pp. 123-129
Author(s):  
Ching-Chun Chiang ◽  
Shu-Chuan Chang ◽  
Sheng-Yu Fan
Keyword(s):  
Decision Making ◽  
Health Care Professionals ◽  
Medical Staff ◽  
Hospice Care ◽  
Family Members ◽  
Emotional Reactions ◽  
Do Not Resuscitate ◽  
Structured Interviews ◽  
End Of Life Decision ◽  
Hospice Palliative Care

A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Four themes were identified: (1) Patients: The caregivers respected the patients’ willingness and did not want to make them feel like “giving up.” (2) Caregivers’ self: They did not want to intensify the patients’ suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members’ opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals’ supports to deal with the concerns from patients and other family members as well as their emotional reactions.

scholarly journals Diversity or disarray? A systematic review of decision-making capacity for treatment and research in schizophrenia and other non-affective psychoses

2017 ◽  
Vol 47 (11) ◽  
pp. 1906-1922 ◽  
Author(s):  
B. W. J. Spencer ◽  
G. Shields ◽  
T. Gergel ◽  
M. Hotopf ◽  
G. S. Owen
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Wide Spectrum ◽  
Meta Analysis ◽  
Research Participation ◽  
Demographic Factors ◽  
Neurocognitive Deficits ◽  
Ovid Medline ◽  
Decision Making Capacity ◽  
Socio Demographic Factors

BackgroundValid consent for treatment or research participation requires that an individual has decision-making capacity (DMC), which is the ability to make a specific decision. There is evidence that the psychopathology of schizophrenia can compromise DMC. The objective of this review was to examine the presence or absence of DMC in schizophrenia and the socio-demographic/psychopathological factors associated.MethodsWe searched three databases Embase, Ovid MEDLINE(R), and PsycINFO for studies reporting data on the proportion of DMC for treatment and research (DMC-T and DMC-R), and/or socio-demographic/psychopathological associations with ability to make such decisions, in people with schizophrenia and related illnesses.ResultsA total of 40 studies were identified. While high levels of heterogeneity limited direct comparison, meta-analysis of inpatient data showed that DMC-T was present in 48% of people. Insight was strongly associated with DMC-T. Neurocognitive deficits were strongly associated with lack of DMC-R and to a lesser extent DMC-T. With the exception of years of education, there was no evidence for an association with socio-demographic factors.ConclusionsInsight and neurocognitive deficits are most closely associated with DMC in schizophrenia. The lack of an association with socio-demographic factors dispels common misperceptions regarding DMC and characteristics such as age. Although our results reveal a wide spectrum of DMC-T and DMC-R in schizophrenia, this could be partly due to the complexity of the DMC construct and the heterogeneity of existing studies. To facilitate systematic review research, there is a need for improvement within research study design and increased consistency of concepts and tools.

P02.186 Anxiety and depression in family members of ICU patients: Ethical considerations regarding decision-making capacity

2000 ◽  
Vol 15 (S2) ◽  
pp. 372s-372s
Author(s):  
F. Pochard ◽  
E. Azoulay ◽  
S. Chevret ◽  
I. Ferrand ◽  
J.F Dhainaut ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Members ◽  
Anxiety And Depression ◽  
Ethical Considerations ◽  
Icu Patients ◽  
Decision Making Capacity

scholarly journals P.137 A qualitative study of families’ experiences with medical assistance in dying (MAiD) in Nova Scotia

2021 ◽  
Vol 48 (s3) ◽  
pp. S59-S59
Author(s):  
E Leck ◽  
C Jackson-Tarlton ◽  
E Crumley ◽  
G Gubitz
Keyword(s):  
Decision Making ◽  
Nova Scotia ◽  
Family Members ◽  
Sense Of Control ◽  
Medical Assistance ◽  
Structured Interviews ◽  
Eligibility Criteria ◽  
Medical Assistance In Dying ◽  
Life Journey ◽  
Iterative Coding

Background: MAiD became legal in Canada in 2015, with Bill C-14 delineating eligibility criteria and access. Previous research found families are intimately involved with decision-making, with conflicting perspectives on how they cope. Our study sought to learn about the experiences of family members, and determine what supports might be beneficial to improve MAiD delivery and aftercare. Methods: We conducted hour-long semi-structured interviews with 20 family members of individuals who had MAiD. Interviews took place by telephone or virtually via MS Teams, and transcripts were analyzed using an iterative coding process and thematic analysis. Results: Prominent themes emphasized the importance of respecting autonomy, decision-making, and allowing people to regain a sense of control, particularly with so much taken away. The death itself was described as peaceful. Interviewees were overwhelmingly filled with relief and gratitude for being able to respect the individual’s wishes. Interviewees spoke of importance of support for themselves, and the desire to build a network of individuals with similar experiences; to share their stories, grieve together, and support the next generation. Conclusions: These results will help improve MAiD delivery and aftercare in Nova Scotia, by informing, developing and enabling access to resources for individuals who accompany a family member on their end-of-life journey.

Symptoms of anxiety and depression in family members of intensive care unit patients: Ethical hypothesis regarding decision-making capacity

2001 ◽  
Vol 29 (10) ◽  
pp. 1893-1897 ◽  
Author(s):  
Frédéric Pochard ◽  
Elie Azoulay ◽  
Sylvie Chevret ◽  
François Lemaire ◽  
Philippe Hubert ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
Family Members ◽  
Anxiety And Depression ◽  
Decision Making Capacity

scholarly journals The Priorities of People with Mesothelioma: A Qualitative Study of Trial Participation and Treatment Decisions

2021 ◽  
Author(s):  
Anna Bibby ◽  
Anna J Morley ◽  
Emma Keenan ◽  
Nick A Maskell ◽  
Rachael Gooberman-Hill
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Treatment Options ◽  
Randomised Trial ◽  
Research Participation ◽  
Trial Participation ◽  
Structured Interviews ◽  
Care Needs ◽  
Physical Strength

Abstract BackgroundTreatment options for mesothelioma are increasing, as are the number of clinical trials available to patients. However, little is known about patients’ and relatives’ priorities when making decisions about treatment and trial participation. MethodsFace to face, semi-structured interviews were undertaken with mesothelioma patients who were participating in the TILT trial (a randomised trial of intra-pleural immunotherapy) and their relatives. Interviews were audio-recorded, transcribed and analysed thematically. ResultsTwelve people were interviewed, comprising five mesothelioma patients and seven relatives. Four themes were identified relating to the experience of mesothelioma: physicality, quality of life, uncertainty and risk, and anxiety and the future. A further theme related to attitudes to research participation.Participants valued physical strength and were careful not to jeopardise this with potential side effects of medication. Quality of life was important and was often prioritised over survival. Participants found ambiguity challenging and sought certainty, potentially in response to the uncertainty surrounding their future. The desire for certainty impacted on risk perception; an important factor in decision-making. Relatives often advocated on behalf of patients and were more reluctant about research participation due to concern about potential risks.ConclusionThe study confirmed previous qualitative findings around physicality, uncertainty and relatives as advocates, building on these themes to highlight their influence on decision-making. Important findings for practice include the challenges associated with risk communication and the differing care needs of relatives.

Ongoing Consent in Situations of Cognitive Vulnerability

2019 ◽  
pp. 3-14 ◽  
Author(s):  
Lauren R. Sankary ◽  
Paul J. Ford
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Ethical Issues ◽  
Cognitive Vulnerability ◽  
Research Participation ◽  
Proxy Consent ◽  
Decision Making Capacity ◽  
Research Oversight ◽  
Vulnerable Patient ◽  
Study Participants

This chapter explores ethical issues in obtaining ongoing consent for clinical research involving cognitively vulnerable patient populations. Stakeholders in these challenges include researchers, sponsors, study participants, caregivers and other legally authorized representatives, and research oversight boards. First, this chapter examines existing conceptual frameworks and proposed safeguards for the protection of cognitively vulnerable research participants, including double consent, proxy consent with participant assent, advance consent, and process consent. This chapter then proposes an inclusionary approach to obtaining ongoing consent to research participation when cognition could fluctuate over the course of research participation. Proposed safeguards and modifications to the consent process should address duration of research participation, the nature and timing of research-related risks, expected and unexpected fluctuations in decision-making capacity, and the process of exiting a clinical trial. The proposed framework is then applied to the specific context of implanted neural device trials, with special attention to considerations for device explant.

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