Methodological and ethical challenges in designing and conducting research at the end of life: A systematic review of qualitative and textual evidence.

AIM: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. BACKGROUND: Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex. DESIGN: A systematic review was conducted. DATA SOURCES: Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. REVIEW METHODS: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. RESULTS: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. CONCLUSION: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.

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.

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.

[Evaluation of an information booklet on end-of-life care in dementia: a mixed-methods study assessing the preferences of family caregivers and healthcare professionals]. / Een 'mixed-methods' evaluatie-onderzoek naar voorkeuren van naasten en zorgprofessionals voor een handreiking over levenseindezorg bij dementie.

A booklet was developed in Canada in 2005 to inform family caregivers of people with dementia about end-of-life care. A Dutch version was published in 2011 after evaluation and revision. Developments in research and society call for a second revision. The aim of this study was to map out users' (family caregivers and healthcare professionals) preferences regarding the look and feel, and content of the booklet. To this end, in addition to the current paper booklet, we created a prototype website and app, along with three illustration options. Twenty-one family caregivers and nineteen healthcare professionals completed a questionnaire about their preferences. Open ended questions were analyzed using content analysis, multiple-choice questions using descriptive analysis. The participants valued the question-answer format. They perceived the text as too medically oriented and they expressed a need for more inclusive language and broader information. The participants found images of people suitable for the booklet and they preferred the illustrations to be less focused on the medical context. The participants preferred the paper booklet and a website. By understanding family caregivers' and healthcare professionals' preferences, in the second revision, the booklet can be tailored to the user. It is expected that this tailoring will support informing family caregivers about end-of-life care.

Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review.

BACKGROUND: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative's care and experience high level of strain at the end of life. AIM: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. DESIGN: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. DATA SOURCES: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. RESULTS: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers' preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. CONCLUSION: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

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).

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.

Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study.

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

Exploring the Holistic Needs of People Living with Cancer in Care Homes: An Integrative Review.

Up to 26% of individuals residing in care homes are impacted by cancer. This underscores the importance of understanding the holistic needs of care home residents living with cancer to enhance the quality of their care. The primary objective of this integrative literature review was to consolidate the available evidence concerning the comprehensive needs of people living with cancer in care home settings, providing valuable insights into addressing their diverse needs. An integrative literature review was conducted using a systematic approach. Extensive searches were conducted in three databases, complemented by a thorough examination of grey literature and reference lists of relevant papers. The review focused on literature published between 2012 and 2022. The screening process involved two independent reviewers, with a third reviewer resolving any discrepancies. The review identified twenty research papers that met the eligibility criteria. These papers shed light on three primary themes related to the holistic needs of care home residents with cancer: physical, psychological, and end-of-life needs. Physical needs encompassed pain management, symptom control, and nutrition, while psychological needs involved social support, emotional well-being, and mental health care. End-of-life needs addressed end-of-life care and advance care planning. These themes highlight the multifaceted nature of cancer care in care homes and underscore the importance of addressing residents' holistic needs in a comprehensive and integrated manner. Improving care home education about cancer and integrating palliative and hospice services within this setting are vital for addressing the diverse needs of residents with cancer.

Change in Advance Care Plans of Nursing Home Residents With Dementia and Pneumonia: Secondary Analysis of Randomized Controlled Trial Data.

OBJECTIVES: To explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the person perceived by elderly care physicians as most influential in advance treatment decision making. DESIGN: Secondary analysis of physician-reported PneuMonitor trial data. SETTING AND PARTICIPANTS: The PneuMonitor trial took place between January 2012 and May 2015 in 32 nursing homes across the Netherlands; it involved 429 residents with dementia who developed pneumonia. METHODS: We compared advance care plans before and after the first pneumonia episode. Generalized logistic linear mixed models were used to explore associations of advance care plan changes with the person most influential in decision making, with demographics and indicators of disease progression. Exploratory analyses assessed associations with the person most influential in decision making. RESULTS: For >90% of the residents, advance care plans had been established before the pneumonia. After pneumonia, treatment goals were revised in 15.9% of residents; 72% of all changes entailed refinements of goals. Significant associations with treatment goal changes were not found. Treatment plans changed in 20.0% of residents. Changes in treatment decisions were more likely for residents who were more severely ill (odds ratio 1.5, 95% CI 1.2-1.9) and those estimated to live <3 months (odds ratio 3.3, 95% CI 1.9-5.8). Physicians reported that a family member was often (47.4%) most influential in decision making. Who is most influential was associated with the resident's dementia severity. CONCLUSIONS AND IMPLICATIONS: Overall, changes in advance care plans after pneumonia diagnosis were small, suggesting stability of most preferences or limited dynamics in the advance care planning process. Advance care planning involving family is common for nursing home residents with dementia, but advance care planning with persons with dementia themselves is rare and requires more attention.

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

OBJECTIVE: We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative's end-of-life care. METHODS: We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. RESULTS: Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country's QPL. One question was included in all QPLs: "Can you tell me more about palliative care in dementia?". CONCLUSION: Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. PRACTICE IMPLICATIONS: Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs' use.

Physicians' perceived barriers and proposed solutions for high-quality palliative care in dementia in the Netherlands: Qualitative analysis of survey data.

Background: The literature indicates that palliative care for people with dementia needs to be enhanced. Objectives: To assess barriers to providing high-quality palliative dementia care and potential solutions to overcome these barriers, as perceived by physicians responsible for end-of-life care with dementia. Design: Cross-sectional study. Setting: The Netherlands. Participants: A representative sample of 311 elderly care physicians of whom 67% (n=207) responded. Measurements: A postal survey in 2013 containing open-ended items probing for barriers in the elderly care physicians' practices and possible solutions. Answers were coded and grouped using qualitative content analysis and presented to expert physicians in 2021. Results: Barriers to palliative care in dementia were (1) beliefs held by family, healthcare professionals or the public that are not in line with a palliative care approach, (2) obstacles in recognizing and addressing care needs, (3) poor interdisciplinary team approach and consensus, (4) limited use or availability of resources, and (5) poor family support and involvement. Suggested solutions were improving communication and information transfer, and educating healthcare staff, families and the public about palliative care in dementia. Timely and frequent communication with the family, including advance care planning, and more highly skilled nursing staff were also proposed as solutions. Conclusions: The results suggest a strong need for ongoing education for healthcare professionals about palliative dementia care. Strengthening interprofessional collaboration and shared responsibility for advance care planning is also key. Increasing public awareness of the dementia trajectory and the need for a proactive approach call for a broader societal agenda setting.