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Background: Advance care planning is a process through which people communicate their goals and preferences for future medical care. Due to the complexity of the decision‐making process, decision aids can assist individuals in balancing potential benefits and risks of treatment options. Objective: While decision aids have the potential to better promote advance care planning, their characteristics, content and application effectiveness are unclear and lack systematic review. Therefore, we aimed to explore these three aspects and establish a foundation for future research. Design: Scoping review. Methods: This scoping review adheres to the framework proposed by Arksey and O'Malley and the PRISMA‐ScR list. Six English‐language databases were systematically searched from the time of construction until 1 December 2023. Two researchers conducted the article screening and data extraction, and the extracted data was presented in written tables and narrative summaries. Results: Of the 1479 titles and abstracts, 20 studies fulfilled the inclusion criteria. Types of decision aids were employed, mainly websites and videos. Decision aid's primary components center around 11 areas, such as furnishing information, exploring treatment and care preferences. The main manifestations were a significant increase in knowledge and improved recognition of patients' target value preferences. Among the aids, websites and videos for advance care planning have relatively high content acceptability and decision‐making process satisfaction, but their feasibility has yet to be tested. Conclusions: Decision aids were varied, with content focused on describing key information and exploring treatment and care preferences. Regarding application effects, the aids successfully facilitated the advance care planning process and improved the quality of participants' decisions. Overall, decision aids are efficient in improving the decision‐making process for implementing advance care planning in cancer and geriatric populations. In the future, personalised decision aids should be developed based on continuous optimization of tools' quality and promoted for clinical application. Reporting Method: The paper has adhered to the EQUATOR guidelines and referenced the PRISMAg‐ScR checklist. No Patient or Public Contribution: This is a review without patient and public contribution. Registration: https://doi.org/10.17605/OSF.IO/YPHKF, Open Science DOI: 10.17605/OSF.IO/YPHKF. [ABSTRACT FROM AUTHOR]

Aims and objectives: To describe advance care planning (ACP) for patients with cancer in palliative care from professionals' perspective. Background: The number of patients with cancer is increasing. Palliative care should be based on timely ACP so that patients receive the care they prefer. Design: A scoping review. Methods: A systematic literature search was conducted in January 2019. The Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) checklist was used. The methodological quality of the studies was evaluated using the Joanna Briggs Institute (JBI) Critical Appraisal tools. Data were analysed with content analysis. Results: Of 739 studies identified, 12 were eligible for inclusion. The settings were inpatient and outpatient facilities in special and primary care including oncology, palliative and hospice care. ACP consisted of patient‐oriented issues, current and future treatment, and end‐of‐life matters. The participants were nursing, medical or social professionals. ACP conversations rarely occurred; if they did, they took place at the onset, throughout and late in the cancer. Conclusions: Professionals could not separate day‐to‐day care planning and ACP. ACP documentation was scattered and difficult to find and use. Professionals were unfamiliar with ACP, and established practices were lacking. ACP conversations mostly occurred in late cancer. Further research clarifying concepts and exploring the significance of ACP for patients and relatives is recommended. Relevance to clinical practice: Our results support the use of ACP by a multidisciplinary team from the early stages of cancer as a discussion forum around patients' wishes and choices. We showed the need to raise professionals' awareness of ACP. Education and appropriate data tools for ACP are important as they may reduce reluctance and promote ACP use. This paper contributes to the wider global clinical community by pointing out the importance of standardising ACP contents and practices. [ABSTRACT FROM AUTHOR]

Aim: To describe the development of a shared decision making intervention for planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services. Background: End‐of‐life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End‐of‐life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end‐of‐life conversations. Health professionals report needing more skills to raise the issue of end‐of‐life care options within consultations and patients want to be able to discuss issues important to them about future care plans. Methods: The development design was guided by the UK Medical Research Council's framework and a user‐centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Results: Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end‐of‐life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. Conclusion: An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. Implications for practice: DESIRE is intended to support shared decision making about planning end‐of‐life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. Impact: What problem did the study address?: International guidelines recommend health professionals involve patients with kidney failure in making decisions about end‐of‐life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end‐of‐life care. What were the main findings?: The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact?: The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. Reporting Method: This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patient or Public Contribution: Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Aim: To develop an advance care planning intervention based on the needs of patients with chronic kidney disease, families and healthcare professionals. Background: Patients with chronic kidney disease and their families request early advance care planning that continues throughout their illness trajectory. Healthcare professionals experience barriers to initiating advance care planning. Involvement of stakeholders in development of health interventions is important, to identify priorities, understand the problem and find solutions. Method: The development was inspired by the Medical Research Council's framework, and codesign was applied. One future workshop and one design workshop were conducted with the consumers. The process was iterative, and data were analysed using the action research spiral. The Guidance for reporting intervention development studies in healthcare (GUIDED) was used. Results: Five areas were considered significant to an advance care planning intervention; a biopsychosocial approach, early palliative care, a family‐focused approach, early and continuous advance care planning and a consumer‐centred approach. Based on these, a conversation process with healthcare professionals was designed to give patients and families the opportunity to share values, preferences and wishes for treatment and their family and everyday life. Conclusion: Codesign facilitated a collaborative process that allowed the consumers to have a significant impact on the design of an advance care planning intervention. A conversation process concerning everyday life, illness and treatment was designed for patients and families. The intervention included an advance care planning tool to guide the healthcare professionals. Practice Implications: The intervention has the intention to improve the communication between healthcare professionals, patients and families. The study provides important knowledge about the significance of giving the patients and their families support in sharing their values, preferences and wishes for treatment and everyday life, thus, to improve care and treatment in their illness trajectory. Impact: What problem did the study addressPatients with chronic kidney disease and their families strongly request early initiation of advance care planning that continues throughout the illness trajectory. Healthcare professionals experience barriers to the initiation of the advance care planning and request a more systematic approach.What were the main findingsDevelopment of a conversation process about everyday life, illness and treatment for patients diagnosed with chronic kidney disease and families, including an advance care planning tool to guide the healthcare professionals.Where and on whom will the research have an impactThe study contributes an advance care planning intervention to patients in the early stages of chronic kidney disease and their families. We believe that the intervention could be included during consultations with healthcare professionals in other stages of chronic kidney disease as well as other chronic disease. Reporting Method: To strengthen the reporting of the development of the advance care planning intervention, we used the Guidance for reporting intervention development studies in healthcare (GUIDED). Patient or Public Contribution: The development of the intervention in this study was a collaborative process between patients, families, healthcare professionals and representatives from the Danish Kidney Association, the department's user council and the research team. [ABSTRACT FROM AUTHOR]

Aim: To synthesise the evidence regarding older adults' perception of advance care planning in preparation for end‐of‐life care. Background: Advance care planning involves continuous communication of end‐of‐life care goals involving an individual's medical treatment preferences. However, its uptake among older adults remains low. Design: The meta‐synthesis was conducted according to the Enhancing Transparency in Reporting the Synthesis of Qualitative research (ENTREQ) guidelines and thematic synthesis was employed to synthesise the qualitative findings in an inductive manner. Data Source: A search was completed on six electronic databases (PubMed, EMBASE, CINAHL, PsycINFO, Web of Science, Scopus), for publications from 1 January 2000 to 4 December 2021. Review Method: The certainty of the evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation and Confidence (GRADE‐CERQual) in the Evidence from Reviews of Qualitative research. Two independent reviewers conducted this process, and disagreements were resolved through discussions. Results: Fourteen studies were analysed. Four major themes and eleven subthemes emerged from the thematic synthesis: (1) psychosocial preparedness, (2) medical preparedness, (3) psychological barriers towards advance care planning and (4) extrinsic barriers towards advance care planning. Discussion These themes consolidated older adults' views of advance care planning and how engagement in this planning affected their end‐of‐life preparedness. Conclusion: This review suggested psychological and extrinsic factors were barriers to the uptake of advance care planning and provided directions for future research to achieve a holistic understanding of the impact of advance care planning on end‐of‐life preparedness. Relevance to Clinical Practice: Healthcare professionals could maintain close communication with older adults and families periodically to evaluate their readiness to discuss advance care planning to improve their preparedness. Healthcare professionals could also provide psychological support during the discussion of clinical decision‐making to enhance readiness and confidence among older adults and their families. [ABSTRACT FROM AUTHOR]

Aim and Objectives: To assess (1) the experience, knowledge and preferences of end‐of‐life care among frail nursing home residents and (2) the preferences of residents' family caregivers. Background: Globally, nursing homes are becoming an important place where many older people will receive their end‐of‐life care. Thus, assessing the end‐of‐life care preferences among nursing home residents is crucial. Design: Cross‐sectional survey. Methods: Residents aged ≥65 years, with frail or pre‐frail status (n = 286) in 34 nursing homes were interviewed using a structured questionnaire. Descriptive statistics were used to describe the outcomes and regression analyses were used to evaluate factors related to the outcomes. Kappa statistics were used to examine the agreement between the preferences among 21 residents and their family caregivers. The manuscript was guided by the STROBE checklist. Results: 5.9% and 10.5% of the participants had heard of advance care planning and advance directive respectively. After explanations of the terms by the research team, 42.3% of the participants preferred advance care planning, whereas 22.0% preferred advance directive. The top reason for not preferring advance care planning/advance directive is perceiving them as 'not necessary'. Nursing homes were the most preferred place to receive end‐of‐life care (41.6%). Whereas hospitals were the most preferred place for death (36.0%). The agreement among resident and family caregiver dyads ranged from none to minimal in most outcomes. Conclusions: This study revealed the lack of awareness around advance care planning and advance directive among frail nursing home residents. Future research should focus on developing effective educational interventions to enhance the residents' awareness of these topics. Relevance to clinical practice: To increase awareness among nursing home residents, more educational programs should be implemented. Frail older residents might not see the relevance of advance care planning; interventions need to include both current and future care to increase its relevance. [ABSTRACT FROM AUTHOR]

Aims and objectives: To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations. Background: Awareness about perspectives of people with dementia should decrease stigmatisation and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning. Design: Qualitative descriptive design. Methods: We performed in‐depth interviews with 18 community‐dwelling persons with dementia in South‐Limburg, the Netherlands. Transcripts were analysed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines. Results: Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings. Conclusions: Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life. Relevance to clinical practice: This study demonstrates capability and willingness of people with dementia to discuss the future and end‐of‐life topics. Public and professional awareness may facilitate opportunities for informal end‐of‐life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To identify and synthesise existing literature about action research in the implementation of advance care planning in a hospital setting. Background: Despite the proven added value of advance care planning, there is a lack of wide integration of this concept. There are several obstacles known for the implementation but it remains unclear how these can be overcome. Action research is described in the literature as a plausible way to overcome obstacles to the implementation of quality enhancing projects. Design: An integrative literature review was conducted using the Preferred Reporting Items for Systematic Review and Meta‐Analysis (PRISMA) and reported in accordance with the PRISMA statement. Methods: We searched databases MEDLINE, EMBASE, CINAHL and Web of Science to identify executed action research for the implementation of advance care planning programs within a hospital setting, from January 2005 until November 2019. Studies were assessed for comprehensiveness and were supplemented by studies in reference lists of included articles. A quality appraisal and a thematic synthesis were performed on all included studies. Results: Five studies met inclusion criteria. Interventions focused on both nurses, physicians and hospitalised patients. Interventions targeted three different themes: identifying at‐risk patients, adapting documentation to the local context and using communication improvement tools. Conclusions: A Supportive and Palliative Care Indicators Tool is proposed to identify patients in need of advance care planning to work more efficiently. Furthermore, adapting documentation and instruments to a specific care context are shown to make advance care planning more effective. Communication challenges can be addressed by promoting communication skills and increase stakeholder self‐confidence. [ABSTRACT FROM AUTHOR]

Aims and objective: Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. Background: Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. Design: The study was mixed methods and observational. Methods: Participants completed self‐report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. Results: Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'. Conclusions: The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender‐specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. Relevance to Clinical Practice: Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life‐sustaining treatments at end‐of‐life. ACP is crucial now more than ever, as COVID‐19 complicates care for older adults with HIV at high risk of complications. [ABSTRACT FROM AUTHOR]

Aim: To explore how people with heart failure develop and change their views of dying and death. Design: A Straussian grounded theory approach. Methods: Purposive and theoretical sampling were used. Data collection and analysis were repeated until reaching data saturation using the constant comparative method. We conducted semi‐structured interviews between January 2019 and July 2020 with 24 people with heart failure from a university and a community hospital in Japan. Results: Initially, participants' views of dying and death were unrelated to their disease. After the first turning point, namely the confirmation of the deterioration and incurability of the disease, their views became related to their own disease, adding to the suffering caused by the exacerbated symptoms. After the second turning point, namely when participants became tormented by the inevitability of death, they added their struggles with physical, psychological, and spiritual pain owing to medical interventions to their views of dying and death. Only a few participants reached the last stage of this process as it was emotionally distressing; some chose not to proceed to the next stage. Conclusion: Participants develop their views of dying and death gradually and in stages while they experience two turning points. Healthcare providers need to address this process while keeping in mind that proceeding this process requires some turning points, and it can be painful. Impact: This study provides a theoretical framework on the development of the views regarding dying and death of people with heart failure; it showed that these people need some turning points and to pass through stages to develop/individualize their views, and that this process is inherently distressing. This theory provides a cornerstone for healthcare professionals to understand the disease‐specific transition in views of dying and psychological readiness, and it may help establish a therapeutic relationship that includes advance care planning. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Advanced Nursing (John Wiley & Sons, Inc.) is the property of John Wiley & Sons, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aims and objectives: To describe healthcare professionals' perceptions of advance care planning (ACP) in palliative care unit in hospital ward or outpatient clinic. Background: Clinical guidelines recommend timely ACP as a central component of patient‐centred palliative care. However, the ACP concept and terminology have been judged to be confusing, and practices are not established. Professionals' views are needed for ACP adoption and usage. Design: Qualitative descriptive design. Methods: The study used purposive sampling. The data were collected through focus group interviews with registered nurses and practical nurses and individual or couple interviews with physicians and social workers. The data (n = 33) were analysed by inductive content analysis. The study complied with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Results: Three main categories emerged: Information content of ACP, coordination of care activities through ACP, and support for patients' and family members' coping. The information content of ACP included assessment of need for patient care, preparing for changes in patient's state of health and proactive medication. Coordination of care activities through ACP contained ACP care planning, cooperation and work practices between healthcare professionals. Support for patients' and family members' coping included communication between patient, family members and professionals and promoting patient self‐care. Conclusions: ACP is a useful and proactive tool for integrating patient‐centred information, care and services as well as support for patients' and family members' coping. Palliative care activities can be coordinated through ACP in a multidisciplinary manner. ACP is significant and relevant for both professionals' work and patient care throughout the service system. Relevance to clinical practice: Results highlight the importance of proactive, concrete and holistic ACP. ACP should be up to date to reflect patient's current wishes. Raising professional awareness and implementing ACP into work processes are essential. Results can be utilised in planning and implementing interprofessional in‐service training. [ABSTRACT FROM AUTHOR]

Introduction: Advance care planning is a means for patients to communicate their wishes, fears and desires for future health decisions should they lose the ability to consider or communicate these. Despite being supported by governments and healthcare leaders, uptake amongst the general population remains low. Nurses play a crucial role in promoting and engaging with these discussions given their close relationship with patients and families in a range of clinical settings. Aim: To describe the barriers that nurses and healthcare professionals believe prevent them from exploring advance care planning with their patients. Method: We carried out a systematic review of peer‐reviewed journal articles from the databases MEDLINE, Embase, CINAHL Plus, Web of Science and ProQuest Central, guided by the PRISMA checklist. Results: Eleven articles were identified: all were self‐reporting surveys using a mix of open and closed questions. They originated in the USA, Canada, Australia and Ireland. The participants included various healthcare professionals, with the majority of studies focussing on nurses. The two most important barriers to advance care planning are lack of education and insufficient time. Advance care planning appears to be well supported, and nurses and healthcare professionals report themselves to be comfortable and confident to take on the responsibility. Conclusion: There is a need for greater education and training for nurses and healthcare professionals. In particular, there needs to be better understanding of professional and legal responsibilities. The need for sufficient time to be made available to allow these conversations, in often busy settings, will need institutional and financial support. Relevance to clinical practice: Increased training and knowledge are likely to lead to more positive attitudes and greater confidence for nurses, and other healthcare professionals, which should help support and encourage patient engagement with advance care planning. [ABSTRACT FROM AUTHOR]

Aims and objectives: To explore the experiences and processes of advance care planning (ACP) discussions in older residents of a long‐term care institution. Background: Advance care planning can facilitate discussion about end‐of‐life care and help to identify individual's views, wishes and beliefs about dying at a time when they have the cognitive capacity to reflect on and/or make such decisions. Design: A qualitative study was conducted. Methods: Twenty‐eight older adults in a long‐term care institution participated in person‐to‐person interviews using an ACP booklet, which included topics such as life review, healthy habits and behaviours, and end‐of‐life care issues and information. The discussions were recorded, and thematic analysis was used to analyse the qualitative data. The Standards for Reporting Qualitative Research (SRQR) checklist was followed. Results: Three themes were identified. First, participants identified that ACP could help to ensure that they achieved their view of a "good death." Second, the process of ACP bought up difficult decisions that many participants expressed uncertainty about making. Third, participants' ability and willingness to plan for end of life were shaped by considerations about their family members' needs, views and potential role as their future carer. Conclusions: The ACP process involved not only personal ideas about good death but also families' concerns. Uncertainty and lack of information created difficult barriers. Relevance to clinical practice: Healthcare professionals could address the concept of good death, deliver information for their concerns and promote communication with family members. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Advanced Nursing (John Wiley & Sons, Inc.) is the property of John Wiley & Sons, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aims and objectives: To identify factors that influence the engagement of Chinese Australians with advance care planning. Background: Despite the benefits of advance care planning, there is a low prevalence of advance care planning in the Chinese Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death; however, other logistical factors may also be important. Design: This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in advance care planning. Methods: Semistructured interviews were conducted in‐language (Mandarin or Cantonese) exploring the views of a purposive sample of 30 community‐dwelling older Chinese Australians within Victoria, Australia. Results: Three key themes were identified: knowledge of, attitudes towards and needs for undertaking advance care planning amongst the Chinese Australians. There was a low awareness of advance care planning amongst the participants and some confusion regarding the concept. Most participants reported positive attitudes towards advance care planning but acknowledged that others may be uncomfortable discussing death‐related topics. Participants would want to know the true status of their health and plan ahead in consultation with family members to reduce the burden on the family and suffering for themselves. Language was identified as the largest barrier to overcome to increase advance care planning awareness. In‐language materials and key support networks including GPs, family and Chinese community groups were identified as ideal forums for the promotion of advance care planning. Conclusions: The participants of this study were open to conversations regarding future medical planning and end‐of‐life care, suggesting the low uptake of advance care planning amongst Chinese Australians is not culturally motivated but may be due a lack of knowledge relating to advance care planning. Relevance to clinical practice: The results highlight the need to provide access to appropriate in‐language advance care planning resources and promotion of advance care planning across the Chinese community. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To conduct a formative evaluation of the iPad-Enhanced Shared Care Intervention for Partners (iSCIP) among persons with heart failure (HF), family caregivers and clinicians. Together, persons with HF and family caregivers are referred to as partners. Background: There is growing awareness of the caregiver’s contributions to HF self management, social support and reciprocal benefits of interventions that involve both partners. The iSCIP engages both partners in a six-session psychosocial intervention to address three preventable causes of poor outcomes in a HF population: poor self-management skills, inadequate social support and underutilisation of palliative care. An iPad app is used to organise the intervention. The goals of the iSCIP are to engage partners in HF self-management, communication about the HF patient’s care values and preferences, and future planning. Design: A qualitative focus group design was used. Methods: Seven clinicians and eight partners participated in focus groups to explore their experiences, needs and reaction to the iSCIP content and technologies employed. Open-ended questions and closed-ended surveys were used to collect data. Deductive content analysis was used to analyse the qualitative data. NVivo software was used for qualitative data analysis. Bayesian statistical models were used to analyse numeric data. Results: The iSCIP met partners’ and clinicians’ needs to improve self-management, communicate about care values and preferences and plan for the future. Quantitative analysis of numeric data supported our qualitative findings, in that both groups rated the intervention components useful to very useful. Implications for practice: These findings add to the growing evidence of the feasibility and acceptability of programs that address care values and preferences, and care planning. The iSCIP can be used as a guide for developing interventions and software applications, which involve both partners in care and palliative-care discussions. [ABSTRACT FROM AUTHOR]

Aims and objectives To examine nursing home managers' knowledge, attitudes, beliefs and current practice regarding advance care planning for people with dementia in long-term care settings informed by the theory of planned behaviour. Background Internationally, advance care planning is advocated for people with dementia. However, evidence suggests that discussions with people with dementia are rare, particularly in long-term care settings. Whilst nursing home managers can be considered central to implementation in this setting, there is a dearth of research that has examined their perspective. This study reports on their role with regard to advance care planning and the perceived factors which influence this. Design A cross-sectional postal survey was carried out as part of a larger scale sequential explanatory mixed-methods study between January-March 2015. Setting and participants Nursing home managers in a region in the UK ( n = 178). Results A response rate of 66% ( n = 116) was achieved. Nursing home managers demonstrated a lack of knowledge of advance care planning, with negative attitudes underpinned by concerns regarding the capacity and lack of perceived benefits to the person with dementia. Currently, they do not view advance care planning as part of their role, with lack of ownership impacting upon current practice behaviours. Conclusions Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate. Targeted training to address the knowledge deficit is required, with the wider components of advance care planning promoted. There is a need for greater role clarification to ensure nurses in long-term care settings identify with the process in the future. A gap between rhetoric and reality of implementation is evident; therefore, long-term care settings must critically examine system, organisational and individual factors for failure to implement advance care planning for people with dementia. Relevance to Clinical Practice Increased cognisance of the context in which advance care planning takes place is vital for improved implementation in this context. In addition strong nursing leadership is imperative to facilitate initiation, engagement and re-evaluation of the process of advance care planning. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore specific cultural and religious beliefs and values concerning death and dying, truth telling, and advance care planning, and the preferences for end-of-life care among older persons from culturally and linguistically diverse backgrounds. Background Whilst literature indicates that culture impacts on end-of-life decision-making significantly, there is limited evidence on the topic. Design A cross-sectional survey. Methods A total of 171 community older persons who make regular visits to 17 day care centres expressed in a questionnaire their; (1) beliefs about death and dying, truth telling, and advance care planning, and (2) preferences for end-of-life care. Results More than 92% of respondents believed that dying is a normal part of life, and more than 70% felt comfortable talking about death. Whilst respondents accepted dying as a normal part of life, 64% of Eastern Europeans and 53% of Asia/Pacific groups believed that death should be avoided at all costs. People from the Asia/Pacific group reported the most consensual view against all of the life-prolonging measures. Conclusion Cultural and religious beliefs and values may have an impact on preferences for treatment at end-of-life. The study offers nurses empirical data to help shape conversations about end-of-life care, and thus to enhance their commitment to help people 'die well'. Relevance to clinical practice Information acquisition to extend understanding of each individual before proceeding with documentation of advance care planning is essential and should include retrieval of individuals' cultural and religious beliefs and values, and preferences for care. An institutional system and/or protocol that promote conversations about these among nurses and other healthcare professionals are warranted. [ABSTRACT FROM AUTHOR]

Aims and objectives We used a question from the Healthcare Equality Index to explore nurses' knowledge and understanding of medical advance directives, medical power of attorney and other legal documents for lesbian, gay, bisexual and transgender patients. Background Until the landmark ruling in Obergefell vs. Hodges, lesbian, gay, bisexual and transgender individuals and same-sex couples have had limited relationship rights as only a few states recognised marriages and provided legal protections for same-sex couples. Health care providers' knowledge of and attitudes towards advance care planning plays a significant role in determining whether or not individuals successfully complete advance directives, yet advance care planning for lesbian, gay, bisexual and transgender individuals is poorly understood among both health care providers and same-sex couples. Design These data were part of a larger research study that explored the current state of lesbian, gay, bisexual and transgender-sensitive nursing practice. Method Undergraduate nursing students recruited and interviewed nurse key informants ( n = 268) about medical advance directives, medical power of attorney and other legal documents for lesbian, gay, bisexual and transgender patients. Results Nearly 50% of key informants indicated a lack of knowledge of advance directives, over 26% reported the difficulties nurses face regarding advance directives are the same for both lesbian, gay, bisexual and transgender and heterosexual patients, and nearly 25% indicated difficulties including having to decide who has the legal right to make decisions for the patient. Conclusion The study demonstrated the need for education and training for practising nurses in advance care planning for lesbian, gay, bisexual and transgender patients and same-sex couples. Relevance to clinical practice Nurses are in a position to act as educators, advocates and decision makers for their patients. Nurse's lack of understanding of advance care planning may negatively impact the type and quality of care lesbian, gay, bisexual and transgender patients receive. [ABSTRACT FROM AUTHOR]

Aims and objectives The purpose of the study was to examine nurses' and nursing assistants' perspectives of a palliative approach in a variety of nursing care settings that do not specialise in palliative care. Background Ageing populations worldwide are drawing increasing attention to palliative care. In particular, people with advancing chronic life-limiting conditions often have unmet needs and may die in acute medical, residential care and home health settings without access to palliative care. A palliative approach offers an upstream orientation to adopt palliative care principles to meet the needs of people with life-limiting chronic conditions, adapt palliative care knowledge to other chronic illness conditions, and integrate and contextualise this knowledge within the healthcare system (Sawatzky et al. 2016). Design A qualitative study using the method of interpretive description carried out by a nursing research-practice collaborative, Initiative for a Palliative Approach: Evidence and Leadership (iPANEL). Methods Twenty-five nurses and five nursing assistants from across British Columbia, Canada participated in interviews and focus groups. Thematic analysis was used to analyse the data. Results The overarching theme was that of participants close to a palliative approach in that they cared for people who would benefit from a palliative approach, they were committed to providing better end-of-life care, and they understood palliative approach as an extension of specialised palliative care services. Participants varied in their self-reported capacity to integrate a palliative approach, as they were influenced by role clarity, interprofessional collaboration and knowledge. Conclusions Integration of a palliative approach requires a conceptual shift and can be enhanced through interpersonal relationships and communication, role clarification and education. Relevance to clinical practice Nurses care for people with advancing chronic life-limiting conditions in a variety of settings who would benefit from a palliative approach. [ABSTRACT FROM AUTHOR]

Aims The aims of this study were: to evaluate the advance care planning policy for people with dementia in nursing homes; to gain insight in the involvement of residents with dementia and their families in advance care planning, and in the relationship between the policy and the actual practice of advance care planning. Background Through advance care planning, nursing home residents with dementia are involved in care decisions, anticipating their reduced decision-making capacity. However, advance care planning is rarely realized for this group. Prevalence and outcomes have been researched, but hardly any research has focused on the involvement of residents/families in advance care planning. Design Observational cross-sectional study in 20 nursing homes. Methods The ACP audit assessed the views of the nursing homes' staff on the advance care planning policy. In addition, individual conversations were analysed with ' ACP criteria' (realization of advance care planning) and the ' OPTION' instrument (involvement of residents/families). Data collection: June 2013-September 2013. Results Nursing homes generally met three quarters of the pre-defined criteria for advance care planning policy. In almost half of the conversations, advance care planning was explained and discussed substantively. Generally, healthcare professionals only managed to involve residents/families on a baseline skill level. There were no statistically significant correlations between policy and practice. Conclusion The evaluations of the policy were promising, but the actual practice needs improvement. Future assessment of both policy and practice is recommended. Further research should focus on communication interventions for implementing advance care planning in the daily practice. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore nurses' views regarding implementing advance care planning for older people. Background Advance care planning is recommended as a way for older people to discuss their future care with family members and health professionals. Nurses play key roles in the process of advance care planning, including ensuring that patients are informed of their rights and that decisions are known to, and respected by, the health care team. Thus, understanding of nurses' experiences and perspectives regarding implementing advance care planning for older people is a significant topic for review. Design Qualitative meta-synthesis. Methods Four databases including CINAHL plus, Medline [ EBSCOhost], EMBASE, and Psyc INFO were searched, and 1844 articles were initially screened. Finally, 18 articles were critically appraised and a thematic synthesis was undertaken. Results Four themes were identified regarding implementation of advance care planning: perceived disadvantages and advantages of advance directives; nurses' responsibility and roles; facilitators and barriers; and nurses' needs and recommendations. Nurses felt that advance directives provided more advantages than disadvantages. Nurses generally believed that they were well positioned to engage in advance care planning conversations. Nurses perceived barriers relating to older people, families, environment, time, culture, cost, language and knowledge of health care teams with regard to advance care planning. In nurses' needs, education and support were highlighted. Conclusions This study provides useful knowledge for implementing advance care planning through illustrating nurses' experiences and perspectives. The results showed that nurses were more concerned about barriers in relation to working environment, teamwork, time and knowledge of health care team members than older people's characteristics, when implementing advance care planning. Relevance to clinical practice The findings provide nurses and administrators with information to develop related policies and education. Additionally, the appointment of nurses to formal roles related to advance care planning is appropriate and warranted. [ABSTRACT FROM AUTHOR]

Aim To evaluate the effects of 'we DECide', an educational intervention for nursing home staff on shared decision-making in the context of advance care planning for residents with dementia. Background Advance care planning (preparing care choices for when persons no longer have decision-making capacity) is of utmost importance for nursing home residents with dementia, but is mostly not realized for this group. Advance care planning consists of discussing care choices and making decisions and corresponds to shared decision-making (the involvement of persons and their families in care and treatment decisions). Design This quasi-experimental pre-test-post-test study is conducted in 19 nursing homes (Belgium). Participants are nursing home staff. Methods 'We DECide' focuses on three crucial moments for discussing advance care planning: the time of admission, crisis situations and everyday conversations. The ' ACP-audit' assesses participants' views on the organization of advance care planning (organizational level), the ' OPTION scale' evaluates the degree of shared decision-making in individual conversations (clinical level) and the ' IFC- SDM Questionnaire' assesses participants' views on Importance, Frequency and Competence of realizing shared decision-making (clinical level). (Project funded: July 2010). Discussion The study hypothesis is that 'we DECide' results in a higher realization of shared decision-making in individual conversations on advance care planning. A better implementation of advance care planning will lead to a higher quality of end-of-life care and more person-centred care. We believe our study will be of interest to researchers and to professional nursing home caregivers and policy-makers. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore preparedness of end-of-life care planning among community-dwelling older persons of culturally and linguistically diverse background. Background To improve end-of-life care through advance care planning, the key concept 'Planning ahead' has been promoted in Australia. However, since the introduction of the model in 2008, it is not known whether 'Planning Ahead' practice by older people from culturally and linguistically diverse backgrounds has improved. Design A cross-sectional survey. Methods A total of 453 community older adults (65+) who attended 17 day care centres in a region were invited to participate in the study. A total of 229 people completed the survey with a response rate of 50·5%. The questions relevant to this study include: (1) awareness of enduring guardian, advance care directive and advance care planning, (2) the preference for substitute decision-makers and (3) the challenges experienced with advance care planning. Results Awareness of advance care planning was low, and completion of advance care directive was very low. 37·5% of Anglo Celtic group had an enduring guardian, compared with 15·5, 24·1 and 13·3% from Mediterranean, Eastern European and Asia/Pacific group, respectively. Children were the most preferred substitute decision-makers more for Asia/Pacific group than Anglo Celtic, Mediterranean and Eastern Europeans. The various difficulties experienced included being time-consuming, difficult to understand terms and forms, and do not know how to do it. Conclusion Regardless of cultural and ethnic backgrounds, a low level of 'Planning ahead' practices was apparent because of a lack of understanding of the concept, the forms and the processes involved. The gap identified between the existing legal/ethical frameworks and the preferences of older people as substitute decision-makers adds new knowledge for further discussion. Relevance to clinical practice Nursing professionals are provided with an opportunity to improve their practice to meet the needs of older persons and their families in planning ahead for future treatment options. [ABSTRACT FROM AUTHOR]

Aims and objectives To report on the effectiveness of an eight-week palliative care programme in Hong Kong. Background A recent survey reported that the quality of palliative care services in Hong Kong ranked the 20th among 40 countries and it is far behind other Asian countries. There are disagreement and inadequate communication in clinical decision-making among patients, families and healthcare professionals, and that the nurses lack sufficient knowledge and skills in providing palliative care and advance care planning. Design A pretest post-test design and semi-structured interviews were adopted. Methods A total of 108 home care patients with life-limiting disease and their family caregivers in Hong Kong were recruited to complete a set of questionnaire including The Mc Gill Quality of Life Questionnaire for Hong Kong Chinese and the Family Satisfaction Scale before and after they attended an eight-week programme. The programme comprised the elements of symptom management, intensive communication on advance care planning and psychosocial intervention. Results Pearson's chi-square tests and Wilcoxon matched paired tests show a general trend that the patients' quality of life was improved after the programme. Their understanding and active participation in advance care planning was also improved. The hospital readmission rate and the days of hospital stays were significantly reduced. In qualitative interview, four major themes were identified that are as follows: improvement in the communication of treatment plans and after-death arrangements, symptom management, emotional support and suggested areas of improvement. Conclusion The study supports the benefit of implementing a palliative care programme to patients with life-limiting disease. Patients demonstrated improved understanding and changed behaviour as regards the preparation for death and dying after the eight-week programme. Relevance to clinical practice The programme could be replicated in other hospitals and infirmaries that offer home care services. [ABSTRACT FROM AUTHOR]

blackford j. & street a. (2012) Is an advance care planning model feasible in community palliative care? A multi-site action research approach. Journal of Advanced Nursing 68(9), 2021-2033. Abstract Aim. This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services. Background. An effective advance care planning programme involves an organizational wide commitment and preparedness for health service reform to embed advance care planning into routine practice. Internationally, such programmes have been implemented predominantly in aged and acute care with more recent work in primary care. Methods. A multi-site action research was conducted over a 16-month period in 2007-2009 with three Victorian community palliative care services. Using mixed method data collection strategies to assess feasibility, we conducted a baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted key informant interviews ( n = 9). Settings and participants. Three community palliative care services: one regional and two metropolitan services in Victoria, Australia. Results. The services demonstrated that it was feasible to embed the Model into their organizational structures. Advance care planning conversations and involvement of family was an important outcome measure rather than completion rate of advance care planning documents in community settings. Services adapted and applied their own concept of community, which widened the impact of the Model. Changes to quality audit processes were essential to consolidate the Model into routine palliative care practice. Conclusion. An advance care planning model is feasible for community palliative care services. Quality audit processes are an essential component of the Model with documentation of advance care planning discussion established as an important outcome measure. [ABSTRACT FROM AUTHOR]

Aims and objectives. This study attempted to test the plausibility of engaging frail nursing home residents in advance care planning (ACP). Background. Advance care planning fosters communication among individuals, family and health professionals regarding end-of-life care. Yet, such practice seldom takes place in a timely fashion because of its sensitive nature; thus, the concerns of these residents are often left unattended. Design. This was a one-year quasi-experimental study to test the feasibility of the Let Me Talk ACP programme, with its design being inspired by literature and our earlier work, among frail nursing home residents. Method. Three assessments were conducted at six-month intervals to monitor the programme effects. The storytelling approach, which allowed participants to thread together their past, present and future, was the key feature of the programme. Results. Findings showed that the treatment preference stability was significantly higher in the intervention group (κ = 0·53, p ≤ 0·001). Significantly more participants in this group also communicated their treatment preferences to their family or caregivers ( p = 0·012), with an odds ratio of 4·52. The programme also had a positive effect on mitigating participants' existential distress. Conclusions. The programme was found effective in clarifying participants' treatment preferences and encouraging them to communicate their preferences to significant others. However, it was also found that involving participants' family in open discussion remained difficult. Extensive promotion in the community is therefore necessary. Relevance to clinical practice. It is recommended that such ACP programmes should be integrated into nursing home care practice, as they can be initiated in a relaxed atmosphere and maintained as an ongoing process. The trusting relationship between the nurse in the homes and the residents enables in-depth discussion. The nurse is also well placed to play the facilitator role in guiding the process, providing information and mediating the family discussion. [ABSTRACT FROM AUTHOR]

Aims and objectives. The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care. Background. Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services. Design. Multisite action research approach. Methods. Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool. Results. The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies. Conclusion. The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes. Relevance to clinical practice. The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services. [ABSTRACT FROM AUTHOR]