Advance Research Directives: Dementia Researchers' Views on a Prototype Directive and Implementation Strategies

Ries, Nola M.; Mansfield, Elise

doi:10.1002/eahr.500091

Cited by 7 publications

(12 citation statements)

References 39 publications

(58 reference statements)

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“…The findings from the present study contribute new perspectives on promotion and documentation of advance research planning. Our participants advocated multifaceted measures to raise awareness of advance research planning by reaching people through their interactions with health, aged‐care, legal, and government entities, strategies similar to ones endorsed by dementia researchers 37 . Promotion of advance research planning could also be integrated into initiatives that connect prospective participants and researchers, such as dementia or other research registries 38 and outreach by community health workers 39 …”

Section: Discussionmentioning

confidence: 99%

“…Our participants advocated multifaceted measures to raise awareness of advance research planning by reaching people through their interactions with health, agedcare, legal, and government entities, strategies similar to ones endorsed by dementia researchers. 37 Promotion of advance research planning could also be integrated into initiatives that connect prospective participants and researchers, such as dementia or other research registries 38 and outreach by community health workers. 39 Participants in this study received an ARD form and an accompanying guidance booklet designed to assist their understanding of health-related research, with a focus on dementia research.…”

Section: Discussionmentioning

confidence: 99%

“…The ARD form and guidance booklet were developed as part of earlier work with input from dementia researchers on a prototype form. 17 Eligible participants were people aged 55 and older who were living in their own home or with a relative or friend and who had one or more of the following characteristics: concerns about their memory, a family history of dementia or related conditions, a diagnosis of mild cognitive impairment or dementia, and/or another chronic health condition. Participants were invited to involve a support person to take part in the study with them.…”

Section: Study Methodsmentioning

confidence: 99%

“…In this case, the interventions are an ARD form to document one's values and preferences about being involved in future research, as well as strategies to support advance research planning. The ARD form and guidance booklet were developed as part of earlier work with input from dementia researchers on a prototype form 17 .…”

Section: Study Methodsmentioning

confidence: 99%

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Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research

Ries

Johnston

2023

Ethics & Human Research

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Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources. This Australian interview study elicited the views of people aged 55 years and older about the content of an ARD form and guidance booklet and processes to support research planning. Participants (n = 25; 55 to 83 years) had interests in dementia research. All participants described the ARD materials as easy to understand, and all expressed willingness to take part in future research. Nearly half believed that an ARD should be legally enforceable, while others saw it as a nonbinding document to guide decisions about their participation in research. Close family members were preferred as proxy decision‐makers. The ARD form and guidance booklet may be adapted for use elsewhere.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Study Methodsmentioning

confidence: 99%

Section: Study Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research

Ries

Johnston

2023

Ethics & Human Research

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“…Prior to the workshop, participants received the following materials as preparatory reading: a workshop agenda; brief participant biographies; a sample advance research directive form and an accompanying guidance booklet (see Appendix S1). The latter documents were developed as part of earlier work (led by authors NR, EM and BJ) with input from dementia researchers 11 and consumers aged 50 and older with interests in dementia research. (The consumer interview study is reported in a separate research article that is under review).…”

Section: Methodsmentioning

confidence: 99%

Advance planning for research participation: Time to translate this innovation into practice

et al. 2022

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Objectives Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health‐related research, policy‐making, advocacy and service delivery in health and aged care. Methods An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. Results Raising awareness of advance research planning requires multi‐faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person‐centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. Conclusions As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area.

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Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning

Shepherd

Hood

Wood

2023

Preprint

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Introduction: To date, anticipatory planning in the UK has focused on supporting people who anticipate periods of impaired decisional capacity to express their wishes about their future care through processes such as advance care planning. Other countries have extended anticipatory planning to include mechanisms for people to prospectively express their preferences about research participation. Advance research planning (ARP) could extend peoples autonomy and ensure that proxy decisions about research are based on their wishes and preferences. Objectives: To explore a range of public and professional stakeholders views about the acceptability and feasibility of planning for future research participation and identify barriers and facilitators to implementing ARP. Design: Cross-sectional survey Main outcomes: Acceptability and feasibility of ARP Participants: Between November 2022 and March 2023, two groups of stakeholders (members of the public including people living with capacity-affecting conditions and their carers; researchers and other professionals) were invited to participate in a cross-sectional survey via multiple recruitment routes. Online questionnaires were used to capture the perspectives of the two groups. Results: Responses from members of the public (n=277) and professionals (n=50) were analysed using descriptive statistics and content analysis. Introducing ARP in the UK was supported by 97% of public contributors and 94% of professionals, who recommended it include the persons general wishes about research, specific types of studies if known, and who should make decisions on their behalf. Challenges include how ARP takes account of changes in individuals preferences or circumstances and protecting their rights and interests. Implementation barriers include the potential time, complexity, and cost involved. These may be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust have a key role, including underpinning who supports the delivery of ARP, how they are trained, and when it is undertaken. Conclusions: There are high levels of support for implementing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. ARP interventions should be developed alongside training and other resources. Activities should focus on public awareness campaigns, and engaging policymakers and other stakeholders.

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Advance Research Directives: Dementia Researchers' Views on a Prototype Directive and Implementation Strategies

Cited by 7 publications

References 39 publications

Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research

Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research

Advance planning for research participation: Time to translate this innovation into practice

Planning ahead for research participation: survey of public and professional stakeholders’ views about the acceptability and feasibility of advance research planning

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