Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers

Bavelaar, Laura; Nicula, Maria; Morris, Sophie; Kaasalainen, Sharon; Achterberg, Wilco P.; Loučka, Martin; Vlčková, Karolína; Thompson, Genevieve; Cornally, Nicola; Hartigan, Irene; Harding, Andrew; Preston, Nancy; Walshe, Catherine; Cousins, Emily; Dening, Karen Harrison; Vries, Kay de; Brazil, Kevin; Steen, Jenny T. van der

doi:10.1016/j.pec.2021.07.031

Cited by 12 publications

(18 citation statements)

References 31 publications

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“…This reflects a broader definition of ‘advance care planning’ in dementia, including family caregiver engagement in advance care planning as proxy for the person with dementia who does not have the capacity to partake [ 15 ]. The intervention was adapted for implementation across countries by the international consortium [ 7 , 16 , 17 ]. A full description of the intervention has been published before [ 7 ].…”

Section: Methodsmentioning

confidence: 99%

“…The booklet discusses the dementia trajectory, possible symptoms and complications, shared decision-making, palliative care options and the dying phase and grief. In each country, we developed a question prompt list together with family caregivers (as part of our Patient and Public Involvement strategy) [ 16 ]. This list of sample questions served as a conversation aid for family caregivers during a meeting with a nursing home staff member.…”

Section: Methodsmentioning

confidence: 99%

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The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

et al. 2023

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Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative’s future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers’ uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents’ hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers’ scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents’ hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

et al. 2023

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“…Participants consisted of investigators, with various roles within academic institutions and organizations, from six countries in Europe and North America who were part of the mySupport study. Every researcher in the mySupport study was invited to participate and provide rich descriptions of their experiences in engaging in research with people with lived experiences 10,12 . Individual interviews were conducted virtually and scheduled at the convenience of participants.…”

Section: Methodsmentioning

confidence: 99%

“…Their perspectives on engagement in the mySupport study is presented in another manuscript which is currently prepared for submission. Details of PPI strategy in the context of mySupport study including how the groups were formed, their composition, role and communication exchange; as well as; blogs, videos and a podcast can be found on the official study website, https://mysupportstudy.eu/ and in previous publications 12,13 . As such, the purpose of this qualitative study was to acquire international perspectives from the project investigators to inform a public engagement plan that accommodates the unique cultural context of each participating country.…”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

Vellani,

Yous,

Rivas

et al. 2023

Health Expectations

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BackgroundPatient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.Research Design and ObjectiveAn interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.FindingsThirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.Discussion and ImplicationsInternational projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.Patient or Public ContributionPPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

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“…We will translate the booklet into Czech. We will produce a question prompt list for each national context, which is set of questions that can be used by family carers as discussion prompts in family care conferences [ 27 ].…”

Section: Interventionmentioning

confidence: 99%

A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study)

Harding

Doherty²,

Bavelaar³

et al. 2022

BMC Geriatr

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Background Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. Methods This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. Discussion The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

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Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers

Cited by 12 publications

References 31 publications

The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study)

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