Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

2011 ◽  
Vol 23 (9) ◽  
pp. 1479-1488 ◽  
Author(s):  
Marie-France Dubois ◽  
Gina Bravo ◽  
Janice Graham ◽  
Sheila Wildeman ◽  
Carole Cohen ◽  
...  
Keyword(s):  
Older Adults ◽  
Informal Caregivers ◽  
Research Participation ◽  
Low Risk ◽  
Board Members ◽  
Proxy Consent ◽  
People With Dementia ◽  
Random Samples ◽  
Dementia Research ◽  
Canadian Provinces

ABSTRACTBackground: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile.Methods: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario.Results: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent.Conclusions: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

scholarly journals Preliminary Efficacy of a Recruitment Educational Strategy on Alzheimer’s Disease Knowledge, Research Participation Attitudes, and Enrollment Among Hispanics

2019 ◽  
Vol 18 (3) ◽  
pp. 144-149 ◽  
Author(s):  
Jaime Perales-Puchalt ◽  
Ashley Shaw ◽  
Jerrihlyn L. McGee ◽  
W. Todd Moore ◽  
Ladson Hinton ◽  
...  
Keyword(s):  
Older Adults ◽  
Clinical Research ◽  
Research Participation ◽  
Recruitment Strategy ◽  
Educational Strategy ◽  
Disease Knowledge ◽  
Culturally Tailored ◽  
Contact Information ◽  
Dementia Research ◽  
Dementia Education

Introduction: Hispanics remain underrepresented in dementia clinical research. This one-arm trial aimed to assess the preliminary efficacy of a culturally tailored recruitment educational strategy among Hispanic older adults on dementia knowledge, research participation attitudes, and enrollment. Method: The recruitment strategy included 6 one-session culturally tailored dementia education events at trusted community senior centers. Participants received a pre–post survey including a 5-point Likert-type scale and the Epidemiology/Etiology Disease Scale to assess dementia knowledge, and a 4-point Likert-type scale assessing research participation attitudes. We gave participants contact information slips to complete if interested in dementia research. We also tracked participants’ enrollment into the National Alzheimer’s Coordinating Center Cohort. Results: Dementia knowledge increased 0.9 points (5-point Likert-type scale) and 2.2 points (epidemiology/etiology disease scale, p < .001). Interest in participating in dementia research increased from 61.7% to 80.9% ( p = .039), 64.0% returned their contact information slips, and 41.1% successfully enrolled into the National Alzheimer’s Coordinating Center Cohort. Conclusion: A recruitment strategy including culturally tailored dementia education improves dementia knowledge, research participation attitudes, and enrollment among Hispanic older adults.

scholarly journals Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

2020 ◽  
pp. 073346482090200
Author(s):  
Shoshana H. Bardach ◽  
Markeda Yarbrough ◽  
Charlene Walker ◽  
Doris L. Alfred ◽  
Eseosa Ighodaro ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Health Research ◽  
Research Participation ◽  
Elevated Risk ◽  
Brain Health ◽  
Research Engagement ◽  
Disease Research ◽  
Dementia Research ◽  
Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

scholarly journals Reasons for nonparticipation in the Valuing Active Life in Dementia randomised controlled trial of a dyadic occupational therapy intervention: An interview study

2020 ◽  
Vol 8 ◽  
pp. 205031212095892
Author(s):  
Jacqueline Mundy ◽  
Jacki Stansfeld ◽  
Martin Orrell ◽  
Martin Cartwright ◽  
Jennifer Wenborn
Keyword(s):  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Research Participation ◽  
Interview Study ◽  
Small Sample ◽  
Recruitment Strategies ◽  
Active Life ◽  
People With Dementia ◽  
Dementia Research ◽  
Randomised Controlled

Objectives: There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia research trial. Methods: Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. Findings: Two themes with related sub-themes were identified: (1) Protectiveness – protecting the person with dementia, themselves as carers and their current lifestyle; (2) ‘It’s not for us’ – the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision-making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and the child carers were apparent in the small sample. Conclusion: Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial.

scholarly journals Qualitative, Quantitative, or Mixed Methods? A Systematic Scoping Review on Methodological Applications in Ageing and Dementia Studies

2020 ◽  
Author(s):  
Atiqur sm-Rahman ◽  
Yasmin Jahan
Keyword(s):  
Older Adults ◽  
Mixed Methods ◽  
Data Collection ◽  
Scoping Review ◽  
Measurement Tool ◽  
People With Dementia ◽  
Dementia Research ◽  
Questionnaire Surveys ◽  
Key Aspects ◽  
Cultural Interventions

Abstract Background: Older adults (with and without dementia) are discriminated against at different social levels and often over-generalized in a stereotypical manner is called ageism. Despite advancements in gerontological research, the methodological implementations in the field of ageing and dementia studies have not been shared equally. This article reports on a systematic scoping review of the emerging methodological trends (use and application of research designs and methods) in this combined field.Methods: The study reviewed evidence-based articles published from 2009 to 2018 and indexed in five scientific electronic databases Web of Science, PubMed, Scopus, PsycINFO, and CINAHL complete by following PRISMA-ScR protocol. Both visual scanning of reference lists and hand searching of leading journals were performed in the field of ageing and dementia in order to maximize the search result.Results: A total of 112 papers were included. The review reveals that the predominant form of methodological application was a quantitative design (74.1%) compared to a qualitative (19.6%) and mixed methods (6.2%) in the combined field of ageing and dementia. Furthermore, the data collection instruments mostly used a variety of questionnaire surveys (with and without validated scales) and interviews. Both quantitative, qualitative, and mixed-methods studies have targeted the general public and healthcare professionals by and large, not older adults or people with dementia in particular. Conclusions: The results have important implications for the methodological advancement of ageing and dementia research, as well as for the development of inter-disciplinary and cross-cultural interventions considering the potentialities and limitations of data collection tools. The study provides a first step towards understanding key aspects in any study setting and recommends to be purposeful about what information will be gathered, which measurement tool or instrument is consistent with study purpose, and how the knowledge will be utilized.

scholarly journals Conducting Research in Persons With Dementia During the COVID-19 Pandemic: Challenges and Strategies

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 310-310
Author(s):  
Ying-Ling Jao ◽  
Diane Berish ◽  
Ann Kolanowski
Keyword(s):  
Older Adults ◽  
Nursing Homes ◽  
Assisted Living ◽  
Ongoing Research ◽  
Health Crisis ◽  
Emergency Situations ◽  
Research Activities ◽  
People With Dementia ◽  
Dementia Research ◽  
Challenges And Strategies

Abstract The COVID-19 pandemic has caused a health crisis for vulnerable older adults, physically and psychologically. Despite the urgent demand for clinical research for people with dementia, research activities are restricted due to the pandemic. This symposium will share the experiences of researchers conducting studies with older persons with dementia during the COVID-19 pandemic. The presenters share their strategies to overcome challenges at different stages of the study process during the pandemic. The research projects include work conducted in acute care, assisted living, nursing homes, and the community. The presentations include perspectives from different geographic areas and across countries in North America. The first presenter reports the challenges in continuing an ongoing research project, and shares strategies to engage stakeholders and plan a new protocol for recruitment and in-person data collection with residents with dementia in nursing homes. The second presenter reports on the barriers and facilitators of conducting an ongoing clinical trial with older adults with dementia across hospital and community settings and discusses strategies to meet project goals which include modifications to the protocol and analytic plan. The third presenter describes adaptations made to a study intervention designed to promote quality resident-staff interactions in assisted living and alterations to stakeholder engagement. The fourth presenter describes challenges and strategies to engage older adults with dementia via technology. The discussant will synthesize the findings across studies and highlight policy and research implications for the COVID-19 pandemic as well as other emergency situations.

scholarly journals Improving Dementia Clinical Research Participation: Strategies From a Portland, Oregon, Pilot Study

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 57-58
Author(s):  
Nicole Bouranis ◽  
Sherril Gelmon ◽  
Elizabeth Needham Waddell ◽  
Dawn Richardson ◽  
Hyeyoung Woo ◽  
...  
Keyword(s):  
Clinical Research ◽  
Family Caregivers ◽  
Local Community ◽  
Research Participation ◽  
Healthcare Research ◽  
Community Advisory Board ◽  
Community Collaboration ◽  
People With Dementia ◽  
Dementia Research ◽  
Health Action

Abstract The NIA’s strategy to improve ADRD clinical research participation emphasizes local community collaboration. Literature that focuses on a person with dementia’s decision to participate in research does not speak to specific state or local factors nor the effects of local efforts. This study aimed to develop strategies to improve dementia research participation in the Portland, OR metropolitan area. A community advisory board comprised of clinicians, researchers, advocates, people with dementia, family caregivers, and older African Americans was established for this project. Thirty-three interviews were conducted with clinicians, researchers, advocates, people with ADRD, and family caregivers. The Robert Wood Johnson Foundation’s Culture of Health Action Framework was used to conceptualize motivation strategies and reflect elements that describe research participation among people with dementia. Strategies were identified to improve dementia clinical research participation: 1) Identify and promote local champions for ADRD clinical research participation; 2) Promote policies and processes that incentive cross-sector collaboration; 3) Recognize caregivers as full research participants; 4) Include people with ADRD and caregivers in the research design process; 5) Offer alternative options to reduce participation burden; 6) Evaluate and improve relationships between healthcare/research staff and patients/participants. These strategies can be used in conjunction with the Culture of Health Action Framework as a roadmap to form organization-community partnerships, facilitate motivation and empowerment, give decision-making power to people with ADRD and promote a local culture of research. Studies should be conducted in a larger context or as pilots in other communities to determine contextual relevance and generalizability for other areas.

Uitbraak COVID-19 in de verpleeghuiszorg

2020 ◽  
Keyword(s):  
Older Adults ◽  
Nursing Home ◽  
Nursing Homes ◽  
Long Term Care ◽  
Informal Caregivers ◽  
Rapid Review ◽  
Daily Routine ◽  
Term Care ◽  
Care Facilities

Long-term care for older adults is highly affect by the COVID-19 outbreak. The objective of this rapid review is to understand what we can learn from previous crises or disasters worldwide to optimize the care for older adults in long term care facilities during the outbreak of COVID-19. We searched five electronic databases to identify potentially relevant articles. In total, 23 articles were included in this study. Based on the articles, it appeared that nursing homes benefit from preparing for the situation as best as they can. For instance, by having proper protocols and clear division of tasks and collaboration within the organization. In addition, it is helpful for nursing homes to collaborate closely with other healthcare organizations, general practitioners, informal caregivers and local authorities. It is recommended that nursing homes pay attention to capacity and employability of staff and that they support or relieve staff where possible. With regard to care for the older adults, it is important that staff tries to find a new daily routine in the care for residents as soon as possible. Some practical tips were found on how to communicate with people who have dementia. Furthermore, behavior of people with dementia may change during a crisis. We found tips for staff how to respond and act upon behavior change. After the COVID-19 outbreak, aftercare for staff, residents, and informal caregivers is essential to timely detect psychosocial problems. The consideration between, on the one hand, acute safety and risk reduction (e.g. by closing residential care facilities and isolating residents), and on the other hand, the psychosocial consequences for residents and staff, were discussed in case of other disasters. Furthermore, the search of how to provide good (palliative) care and to maintain quality of life for older adults who suffer from COVID-19 is also of concern to nursing home organizations. In the included articles, the perspective of older adults, informal caregivers and staff is often lacking. Especially the experiences of older adults, informal caregivers, and nursing home staff with the care for older adults in the current situation, are important in formulating lessons about how to act before, during and after the coronacrisis. This may further enhance person-centered care, even in times of crisis. Therefore, we recommend to study these experiences in future research.

Involving people with dementia and their informal caregivers in the development process of assistive technology: Description and evaluation of a user-centered design (Preprint)

2020 ◽  
Author(s):  
Iris A.G.M. Geerts ◽  
Liselore J.A.E Snaphaan ◽  
Inge M.B. Bongers
Keyword(s):  
Focus Groups ◽  
Assistive Technology ◽  
Field Study ◽  
Development Process ◽  
Technology Development ◽  
Informal Caregivers ◽  
Assistive Technologies ◽  
User Centered Design ◽  
People With Dementia ◽  
User Centered

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.

Sign in / Sign up

Export Citation Format

Share Document