A shared decision-making model about care for people with severe dementia: a qualitative study based on nutrition and hydration decisions in acute hospitals

Objectives: To understand the decision-making processes regarding eating and drinking for hospital patients with severe dementia and use this data to modify a decision-making model about care for people with severe dementia. Methods: From January to May 2021, qualitative semi-structured interviews were conducted with 29 family carers and hospital staff in England who cared for people with severe dementia during hospital admissions. Interviews were transcribed verbatim and analysed using codebook thematic analysis. Results: We demonstrated a modified decision-making model consisting of six stages of the decision-making process: (i) identify a decision to be made; (ii) exchange information and recognise emotions; (iii) clarify values and preferences of all involved; (iv) consider feasibility of each choice; (v) share preferred choice and make a final decision; and (vi) deliver the decision, monitor outcomes and renegotiation. From this study, decision-making needed to be shared among all people involved and address holistic needs and personal values of people with dementia and family carers. However, hospital staff often made assumptions about the persons' ability to eat and drink without adequate consultation with family carers. The process was impacted by ward culture, professional practice, and legal framework, which might overlook cultural and personal beliefs of the persons and families. Treatment escalation plans could help inform stepwise treatments, create realistic expectations, and guide future decisions. Conclusions: Our decision-making model provides clear stages of decision-making processes and can be used to guide clinical practice and policy around care decisions for eating and drinking, which is often poorly supported

Exploring the palliative care ecosystem in Thailand:a protocol for a scoping review and bibliometric analysis

Introduction: Palliative care is an approach that aims to holistically improve the quality of life, care and death of people living with life-limiting conditions as well as their families. In Thailand, palliative care became one of its national strategies as of 2014. However, the access to as well as the quality of palliative care being delivered still varies across the nation, due to multiple factors spanning multiple levels. Consequently, there is a need to comprehensively understand the current palliative care ecosystem in Thailand. This review aims to explore, map and conceptualise the literature available on the palliative care ecosystem in Thailand, and how the service being delivered influences the quality of life, death and care of people living with life-limiting conditions alongside their families.Methods and analysis: This review will consist of two stages. First, a scoping review guided by the Joanna Briggs Institute methodology for scoping reviews will be initially conducted. A systematic literature search using Medical Subject Heading and text words related to palliative care will be performed in PubMed, CINAHL and Thai Citation Index from 2013 to 2023. Grey literature will be searched via alternative sources: Google keyword searching and stakeholders consultation. References of included sources will be handsearched to identify further resources.The population, concept and context framework is used to frame the inclusion and exclusion criteria. This will be further refined after the initial search, reflecting the iterative nature of a scoping review. Articles will be independently screened by three reviewers. A Microsoft Excel spreadsheet will be used as the data extraction tool. Data will be extracted and presented using a narrative synthesis approach.Second, included articles from the scoping review will be further analysed and visualised using a bibliometric analysis technique. This stage involves a computational method, including statistical analysis and content analysis of the articles’ bibliographic details.Ethics and dissemination: This paper describes a protocol for a scoping review and bibliographical analysis. As such, ethical approval was not required. Information relating to the review will be stored with Open Science Framework Registries. The findings of this proposed scoping review will be distributed through a peer-reviewed publication, academic seminars, conferences and patients and public involvement groups

Exploring the palliative care ecosystem in Thailand:a protocol for a scoping review and bibliometric analysis

Introduction: Palliative care is an approach that aims to holistically improve the quality of life, care and death of people living with life-limiting conditions as well as their families. In Thailand, palliative care became one of its national strategies as of 2014. However, the access to as well as the quality of palliative care being delivered still varies across the nation, due to multiple factors spanning multiple levels. Consequently, there is a need to comprehensively understand the current palliative care ecosystem in Thailand. This review aims to explore, map and conceptualise the literature available on the palliative care ecosystem in Thailand, and how the service being delivered influences the quality of life, death and care of people living with life-limiting conditions alongside their families.Methods and analysis: This review will consist of two stages. First, a scoping review guided by the Joanna Briggs Institute methodology for scoping reviews will be initially conducted. A systematic literature search using Medical Subject Heading and text words related to palliative care will be performed in PubMed, CINAHL and Thai Citation Index from 2013 to 2023. Grey literature will be searched via alternative sources: Google keyword searching and stakeholders consultation. References of included sources will be handsearched to identify further resources.The population, concept and context framework is used to frame the inclusion and exclusion criteria. This will be further refined after the initial search, reflecting the iterative nature of a scoping review. Articles will be independently screened by three reviewers. A Microsoft Excel spreadsheet will be used as the data extraction tool. Data will be extracted and presented using a narrative synthesis approach.Second, included articles from the scoping review will be further analysed and visualised using a bibliometric analysis technique. This stage involves a computational method, including statistical analysis and content analysis of the articles’ bibliographic details.Ethics and dissemination: This paper describes a protocol for a scoping review and bibliographical analysis. As such, ethical approval was not required. Information relating to the review will be stored with Open Science Framework Registries. The findings of this proposed scoping review will be distributed through a peer-reviewed publication, academic seminars, conferences and patients and public involvement groups

Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia

BACKGROUND: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. METHODS: This was a mixed methods cross-sectional study. Family carers of people with dementia (n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample (n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. RESULTS: We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers' feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. CONCLUSIONS: While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative's death

Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia

BACKGROUND: When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. METHODS: This was a mixed methods cross-sectional study. Family carers of people with dementia (n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample (n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. RESULTS: We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. CONCLUSIONS: While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death

Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom

Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers’ experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices

Emotional disclosure in palliative care: A scoping review of intervention characteristics and implementation factors

Background:: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. Aim:: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by: (1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and (2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. Design:: A scoping review drawing on Intervention Component Analysis to combine evidence from studies’ methods, results, and discussion sections. Data sources:: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. Results:: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. Conclusions:: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions.Peer reviewedFinal Published versio

Emotional disclosure in palliative care : a scoping review of intervention characteristics and implementation factors

Background: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. Aim: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by: (1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and (2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. Design: A scoping review drawing on Intervention Component Analysis to combine evidence from studies’ methods, results, and discussion sections. Data sources: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. Results: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. Conclusions: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions

Developing a shared decision guide for nutrition and hydration for people with severe dementia in acute hospitals

Background: Decisions about eating and drinking problems are challenging for family carers and healthcare professionals caring for people with severe dementia, particularly in acute hospitals. I aimed to better understand this process and develop a guide that will support family carers and hospital professionals to have a conversation and make decisions. Methods: This PhD consisted of four workstreams to co-design a decision guide: WS1) a systematic review about the decision-making processes; WS2) an interview study with people with mild dementia; WS3) an interview study with family carers and hospital professionals; and WS4) a co-design workshop study with family carers and hospital professionals. Findings: Decision-making processes about eating and drinking for people with dementia are complex and often characterised by unclear procedures and a lack of support. People with mild dementia were not familiar with eating and drinking problems resulting from dementia. They preferred to leave the discussion and decisions to family carers and healthcare professionals until issues arose. It was consequently demanding for family and professionals to make the decisions on a patients’ behalf, especially in acute hospitals where they reported poor communication, limited resources, and emotional involvement. I developed a decision guide through co-design workshops to facilitate conversations and discussions about eating and drinking problems and treatment options between family carers and hospital professionals to support their decision-making. Participants from the interview and workshop studies helped co-design and check the final prototype of my decision guide to make sure it was comprehensible for all parties, addressed cultural and language differences, and focused on the patients’ best interest. Conclusion: In acute hospitals, decisions about the care around eating and drinking for people with severe dementia are challenging. Decisional support for family carers and hospital professionals, for example, the decision guide developed in this PhD, is potentially helpful and could lead to better care. An evaluation study is still warranted to test its usefulness in actual clinical practice

Attitudes towards frailty assessment in clinical practice among psychiatrists in the UK

Purpose: Although there is substantial evidence about the association between frailty and mental illnesses in older people, there is currently little evidence about how this is integrated into psychiatric clinical practice. The purpose of this paper is to explore the attitudes of a sample of psychiatrists in the UK about the concept and assessment of frailty in their clinical practice. Design/methodology/approach: This research used a qualitative approach with semi-structured interviews. Interview schedules and transcripts were analysed using thematic analysis. NVivo software and an audit trail were used for the data analysis. Findings: There were ten respondents (all psychiatrists) in this study. From the interviews, it appeared that some respondents were not be fully familiar with existing concepts of frailty. However, from their perspectives, frailty appeared to be multidimensional, reversible and for some could be enhanced by older people’s ability. Negative stereotypes of being frail could undermine the accessibility to appropriate assessment and care. Existing multidisciplinary assessments, with some adjustments to the particular needs of psychiatric patients, can be used to establish a frailty index. Originality/value: The concept of frailty, especially those concerning its multidimensional and homeostatic nature, should be further examined to make it more applicable to psychiatric practice. Without much more effort, frailty could be assessed within current psychiatric practices. This could constitute a care plan tailored for frail people with a psychiatric illness, so as to improve the outcomes of their treatment and quality of life