Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early.

Background: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. Aim: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. Design: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. Setting/Participants: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. Results: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. Conclusions: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.

OBJECTIVES:People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.METHODS:A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals' (n = 28) perceptions of informational needs were explored within focus groups (n = 6).RESULTS:Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.SIGNIFICANCE OF RESULTS:New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

Abstract Background There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life‐limiting or life‐threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition. Methods Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool. Results Nine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self‐management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self‐advocacy and communication. Conclusion Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.

Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care.Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers.Findings: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. Conclusion: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context. Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom. Design: Exploratory, sequential, mixed-methods design. Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom were used to explore ethical issues in palliative care. The ‘Ethical Issues in Palliative Care for Nursing Homes’ instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015. Ethical considerations: Ethical approval was granted by Queen’s University’s School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home’s manager. Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress. Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change.

BACKGROUND:An increase in the number of patients with long-term conditions has required a greater focus on nurse-led educational interventions to enable patients to develop self-management strategies. However, patient education is frequently taken for granted, and nurses sometimes consider that their undergraduate training does not prepare them to participate in effective patient teaching.AIM:The study aimed to formatively evaluate a simulated role-play scenario facilitated with third-year nursing students to support the development of patient-teaching skills.METHOD:The study combined two approaches to simulation, using high-fidelity and mid-fidelity simulation scenarios sequentially. This enabled students (n=20) to apply the communication strategies learnt to both a skills-based procedural situation and a patient-teaching simulation. A five-item pro forma with four open questions and one closed question was used for formative evaluation.FINDINGS:The results indicated that using a simulated patient to practise patient-teaching skills was perceived by the students to be a valuable method of learning that they could transfer to clinical practice.CONCLUSION:The findings suggested that facilitating learning with a simulated patient is useful in replicating authentic verbal and practical interactions with a patient in practice.

People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs.To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care.This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers.This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support.It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.

Objectives With an increased dependency on nursing homes to provide care to the ageing population, it is likely that ethical issues will also increase. This study aimed to identify the type of ethical issues and level of associated distress experienced by nurses providing palliative care in nursing homes in the UK and Canada, and pilot the Ethical issues in Palliative Care for Nursing Homes (EPiCNH) instrument in Canada. Methods A cross-sectional survey design was used. One hundred and twenty-three nurses located in 21 nursing homes across the UK and Canada completed the EPiCNH instrument. Results Frequent ethical issues include upholding resident autonomy, managing family distress, lack of staff communication and lack of time in both countries. Higher levels of distress resulted from poor communication, insufficient training, lack of time and family disagreements. Nurses in Canada experienced a greater frequency of ethical issues (p=0.022); however, there was no statistical difference in reported distress levels (p=0.53). The survey was positively rated for ease of completion, relevance and comprehensiveness. Conclusions Nurses’ reported comparable experiences of providing palliative care in UK and Canadian nursing homes. These findings have implications on the practice of care in nursing homes, including how care is organised as well as capacity of staff to care for residents at the end of life. Training staff to take account of patient and family values during decision-making may address many ethical issues, in line with global policy recommendations. The EPiCNH instrument has demonstrated international relevance and applicability.

AimTo explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. BackgroundThe prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. DesignDescriptive qualitative study. MethodsDuring 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. ResultsThree themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. ConclusionThe experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (−10.5, 95% confidence interval: −16.4 to −4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

Commentary on : Lord A, Field S, Smith IC. The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: a metasynthesis. J Appl Res Intellect Disabil 2017;30:1007–21. Research studies evidence that staff in both intellectual disability and palliative care services lack confidence, knowledge …

AIMS AND OBJECTIVES:To develop and psychometrically assess a survey instrument identifying ethical issues during palliative care provision in nursing homes. BACKGROUND:Registered nurses and healthcare assistants have reported ethical issues in everyday palliative care provision. Identifying these issues provides evidence to inform practice development to support healthcare workers. DESIGN:Cross-sectional survey of Registered nurses and healthcare assistants in nursing homes in one region of the UK. METHOD:A survey instrument, "Ethical issues in Palliative Care for Nursing homes", was developed through the findings of qualitative interviews with Registered nurses and healthcare assistants in nursing homes and a literature review. It was reviewed by an expert panel and piloted prior to implementation in a survey in 2015 with a convenience sample of 596 Registered nurses and healthcare assistants. Descriptive and exploratory factor analyses were used to assess the underlying structure of the Frequency and Distress Scales within the instrument. RESULTS:Analysis of 201 responses (response rate = 33.7%) revealed four factors for the Frequency Scale and five factors for the Distress Scale that comprise the Ethical issues in Palliative Care for Nursing homes. Factors common to both scales included "Processes of care," "Resident autonomy" and "Burdensome treatment." Additionally, the Frequency Scale included "Competency," and the Distress Scale included "Quality of care" and "Communication." CONCLUSION:The Ethical issues in Palliative Care for Nursing homes instrument has added to the palliative care knowledge base by considering the ethical issues experienced specifically by Registered nurses and healthcare assistants within the nursing home. This research offers preliminary evidence of the psychometric properties of the Ethical issues in Palliative Care for Nursing homes survey instrument. RELEVANCE TO PRACTICE:The two largest factors highlight the need to address the organisational aspects of caring and provide training in negotiating conflicting ethical principles.

BackgroundDementia is a leading cause of death worldwide. Often, people with moderate to advanced dementia are admitted to nursing homes for specialist care. When a person with dementia no longer has the capacity to make decisions about their care, nursing home staff, in combination with family members, may have to make decisions based on a person’s best interests. Family carers often report feeling unprepared to participate in these decisions. Advance Care Planning (ACP) can support family carers in best interest decision-making on goals of care at the end of life. However, given its relative importance, the prevalence of ACP in dementia care is poor. This study set out to examine the effectiveness of an intervention designed to facilitate ACP with family carers.MethodsA paired cluster randomised controlled trial was employed. The intervention comprised: a trained facilitator; family education; family meetings; documentation of ACP decisions; and intervention orientation for GPs and nursing home staff. Twenty-four nursing homes with a dementia nursing category located in Northern Ireland, UK participated. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in ACP discussions were invited to take part. Participants completed postal questionnaires prior to receiving the intervention or usual care and again, six weeks later.Results12 nursing homes were allocated to each group, 11 from intervention and 12 from usual care were analysed. The primary outcome was family carer uncertainty in decision-making about the care of the resident as measured by the Decisional Conflict Scale (DCS). There was evidence of a reduction in total DCS score in the intervention group compared with the usual care group (−10.5, 95% confidence interval −16.4 to −4.7; p<0.001).ConclusionsThe ACP was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Implications for clinicians and policy makers include the need to recognise the importance of family carer education and improving communication between family carers and formal care providers.

Background: The experience of care transitions for family carers of a relative living with dementia do not necessarily lessen once their relative is admitted to a care home.Goals of care and end of life care decisions need to be made. The process of reaching these decisions can be significantly challenging.Aim: To explore the experience of family carers responsible for decision-making on behalf of a relative living with advanced dementia through their transitions from the community into a care home.Method: Carers of a resident living with dementia were offered an individual interview in a qualitative study within a randomised trial evaluating an Advanced Care Planning intervention in care homes in Northern Ireland,UK. Twenty participants completed a semi-structured audio recorded interview, from which transcripts were thematically analysed.Results: Interviews highlighted that carers were at differentstages of the decision-making process for their relative’s carewhen they were admitted to the care home. Some had previouslydiscussed end of life care wishes with their relative,whereas others had to make an informed choice for the care without prior discussions. The emotional impact of this transition varied from high levels of stress and extreme guilt, to a sense of relief that their relative was content and safe in their new setting. Some carers reported that this decision process left them feeling isolated due to family conflict, but support was also available for others from their new ‘family’:the care home staff. However, reports of poor communication with and amongst staff, and inconsistencies of healthcare provision were an additional source of distress.Conclusion: Key findings which require further investigation include: holding goals of care decision-making earlier in the dementia disease trajectory; recognition of family dynamics; the need for improved knowledge to facilitate informed decision-making, and improving communication with and between staff.

BACKGROUND:Ethical issues are increasingly being reported by care-providers; however, little is known about the nature of these issues within the nursing home. Ethical issues are unavoidable in healthcare and can result in opportunities for improving work and care conditions; however, they are also associated with detrimental outcomes including staff burnout and moral distress.OBJECTIVES:The purpose of this review was to identify prior research which focuses on ethical issues in the nursing home and to explore staffs' experiences of ethical issues.METHODS:Using a systematic approach based on Aveyard (2014), a literature review was conducted which focused on ethical and moral issues, nurses and nursing assistants, and the nursing home.FINDINGS:The most salient themes identified in the review included clashing ethical principles, issues related to communication, lack of resources and quality of care provision. The review also identified solutions for overcoming the ethical issues that were identified and revealed the definitional challenges that permeate this area of work.CONCLUSIONS:The review highlighted a need for improved ethics education for care-providers.

Objectives To report on the feasibility and acceptability of an ACP model for individuals living with dementia in a sample of care homes in the United Kingdom. Method As part of a cluster randomised controlled trial including 25 Care Homes, carers of residents living with dementia in 13 of these homes were exposed to an ACP intervention. This comprised of five elements: an ACP facilitator; family education; a family meeting with a follow-up; documentation of ACP decisions; and, orientation for GPs and care home staff about the intervention. One feature of the evaluation included a detailed documentation on the delivery of the intervention, supplemented with stakeholder interviews to assess its feasibility and acceptability. The ACP Facilitator maintained both a narrative journal and a log of activities associated with tasks during the delivery of the intervention. A qualitative interview was held with the ACP Facilitator to discuss their perceptions of the implementation, challenges and benefits of the ACP model. Participating care home managers and family carers also completed a qualitative interview to determine whether they perceived such a model helped or hindered care. Results On average administration of the ACP intervention took two hours to complete on an individual family basis. Care home managers (five from each study arm) and family carers in combination with the findings from the ACP facilitator highlighted the acceptability of the intervention, the importance of such a role to be fulfilled within the care home environment was stressed, however time and staff restraints were noted as key barriers. Nonetheless, the interest and motivation of staff to make such a role possible was clear. Conclusions This presentation identifies the feasibility and perceived acceptability of an ACP intervention suitable for dementia residents in care homes in the UK.