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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. SettingParticipants: 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.

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.

ObjectivesPeople 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.MethodsA 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).ResultsFamily 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 resultsNew 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.

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: 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.

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.

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

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.

Aim: To 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. Background: The 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.Design: Descriptive qualitative study Methods: During 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.Results: Three 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.Conclusion: The 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 maximise 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 for similar nursing homes across the world.

To develop and psychometrically assess a survey instrument identifying ethical issues during palliative care provision in nursing homes.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.Cross-sectional survey of Registered nurses and healthcare assistants in nursing homes in one region of the UK.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.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."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.The two largest factors highlight the need to address the organisational aspects of caring and provide training in negotiating conflicting ethical principles.

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.

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public’s understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice. Aim: To explore public perceptions of palliative care and identify strategies to raise awareness. Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken ( N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed. Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant’s expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies. Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

ObjectivesWith 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.MethodsA 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.ResultsFrequent 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.ConclusionsNurses’ 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.

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female ( n = 17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met. © 2010 The Author(s).

The aim of this study was to explore the bereaved caregivers’ experience of the Hospice at Home service delivered in one region of the UK. Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002. In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one’s wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support. The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers’ views and experiences of accessing the Hospice at Home service.

Summary Background Palliative care is delivered in a number of settings, including nursing homes, where staff often have limited training in palliative care. Aim We explored the level of palliative care knowledge among qualified staff delivering end-of-life care in nursing home settings, to inform the development of an appropriate education and training programme. Design An audit of the educational needs assessment was performed using an anonymous postal questionnaire sent to 528 qualified nursing staff within 48 nursing homes. Findings In total, 227 questionnaires were returned giving a response rate of 43%. Results indicated that less than half the sample had obtained formal training in the area of pain assessment and management and less than a quarter had obtained training in non-malignant conditions. Registered nurses in this study reported a lack of awareness of palliative care principles or national guidelines. Conclusion Qualified nursing home staff agree that palliative care is a valuable model for care in their setting. There are clear opportunities for improvement in nursing home care, based on education and training in palliative care. Results also support the need for enhanced liaison between nursing homes and specialist palliative care services.

Background Hospice at home (HAH) services complement the role of the district nursing team, providing 24-hour palliative home care. However, little is known about district nurses’ experience or perceptions of working alongside the HAH service. Aim This study surveyed a representative sample of district nurses (DNs) to ascertain their experience of working alongside a HAH service. Method A self-completed postal questionnaire comprised of 14 items was distributed to 128 DNs. Results The evaluation found significant levels of satisfaction. All respondents indicated that they would refer a patient to the service again. However, the need for improved communication and increased awareness among DNs about the HAH service were also identified. Conclusion The findings support the idea that a HAH service can enable patients with advanced progressive disease to be cared for at home. While the findings of this study cannot be generalized, they add to the growing body of research about HAH services in palliative care.

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 …

Background: The palliative care clinical nurse specialist (PC-CNS) is a core member of the specialist palliative care team. According to professional policy, the role has four specific components: clinical practice, education, research, and leadership and management. Little is known about how to support staff in this role. Aim: The aim of this study was to explore what learning, development, and support PC-CNSs in one hospice need to enable them to fulfil all components of their role. Design: Using a descriptive exploratory approach, semi-structured interviews were undertaken with a purposive sample of community PC-CNSs from a hospice in Northern Ireland. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Findings: Seventeen interviews were analysed and three themes identified: influence of organisational culture, influence of the individual, and learning and development solutions. Conclusions: Participants reported that the PC-CNS role was stressful. They identified that the organisational culture and indeed individuals themselves influenced the learning and development support available to help them fulfil the four components of the role. Working relationships and stability within teams affected how supported individuals felt and had implications for managers in meeting the needs of staff while balancing the needs of the service.

Background and objectives Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training. Methods A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed. Results Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’. Conclusions This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Aim. To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context. Background. In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent. Method. Questionnaire to CAs in 48 of 91 private nursing homes in one UK region. Findings. A population of 1135 CAs were targeted with a response rate of 45% (n = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes. Conclusion. Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.

Aim: This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD). Method: Semi-structured interviews were undertaken with nine carers who had lost a loved one in the preceding 6 to 24 months. These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis. Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support. Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced.

This article describes health and social care professionals' perceptions of palliative care and facilitators and barriers to the delivery of such care for patients with advanced chronic obstructive pulmonary disease. Health professionals participated in semi structured interviews and focus groups which were analysed using content analysis. According to participants, care of patients with chronic obstructive pulmonary disease is focused upon the management of symptoms, with emphasis focused predominately on an acute model of care. Key barriers towards the delivery of palliative care included the reluctance to negotiatie end-of-life decisions and a perceived lack of understanding among patients and carers regarding the illness trajectory. Consequently the delivery of palliative care was viewed as a specialist role rather than an integral component of care. There is a need for education and training for health and social care professions to plan and provide high quality end-of-life care. © 2009 SAGE Publications.

Title. The palliative care link nurse role in nursing homes: barriers and facilitators. Aim. This paper is a report of a study to explore link nurses’ views and experiences regarding the development, barriers and facilitators to the implementation of the role in palliative care in the nursing home. Background. The delivery of palliative care in nursing homes is widely advocated; one approach is to develop the link nurse role to cascade good practice and training to nurses and other care staff to enhance patient care. Method. A descriptive qualitative study was conducted with a purposive sample of 14 link nurses from 10 nursing homes in Northern Ireland during 2006. Three focus groups, composed of all Registered Nurses currently acting as link nurses in their nursing homes participated, and the data were audio recorded, fully transcribed and content analysed. Findings. The link nurse system shows potential to enhance palliative care within nursing homes. However, link nurses experienced a number of difficulties in implementing education programmes. Facilitators of the role included external support, monthly meetings, access to a resource file and peer support among link nurses themselves. Lack of management support, a transient workforce and lack of adequate preparation for link nurses were barriers to fulfilling this role. Conclusion. Whilst palliative care link nurses can improve care for residents in nursing homes, consideration must be given to overcome the types of barriers identified in order to enable the link nurse system to function effectively.

Background The importance of good end-of-life care for older people in nursing homes is recognised internationally and competence based training has been highlighted to improve palliative care provision in this care setting. Aim This aim of this study was to evaluate a three day competency based, Regional Palliative and End-of-Life Care Learning and Development Programme targeted at nursing staff (n=1330) working within nursing homes (n=266) in Northern Ireland. Methods Both quantitative and qualitative methods were used in two key phases. In Phase 1 participants were asked to complete the Regional Palliative and End-of-Life Care Competency Assessment Tool before and after the training. The content of the programme was mapped to the domains of this tool. In Phase 2, following the programme, seven focus groups with registered nurses (n=29), telephone interviews with managers (n=8) and one focus group, which two managers chose, took place. Results 619 participants completed the programme and 95.3% (n=590) completed the competency tool before and after the training. Descriptive statistics show participants self-reported a significant increase in core palliative care knowledge and skills across all five competency domains after training. Common themes emerging from focus groups and telephone interviews were: ‘Outcomes of attending the programme’, programme delivery and issues of access9, challenges to palliative care in care homes9 and ‘enablers to palliative care in the nursing home setting’. Conclusions This example of training mapped to a competency tool may have relevance given other national and international competency frameworks which exist. Factors relating to attrition have also been identified.

Introduction The symptoms of PD vary but with no cure, people with advanced disease experience distressing symptoms, such as motor complications, dementia, depression, pain and gastro intestinal symptoms which can be difficult to manage. There are many unmet needs such as lack of information, ad hoc delivery of services and a lack of preparation. Aims & Methods To investigate the palliative care needs of people with Parkinson9s Disease as perceived by support workers. Semi structured interviews were undertaken with seven PDUK support workers. With permission interviews were audio recorded, transcribed and analysed using content analysis. Demographic variables were recorded. Results Participants included two information and support workers, an information manager, a branch and voluntary support officer, a manager, a service development officer and an education and training officer who provide advice to people with PD. Seminars with nursing home staff and in-service GP training sessions are held to increase understanding of PD and its symptoms such as ‘freezing’. The participants stressed the importance of clients9 PD medication timetable when in a hospital or nursing home settings. They also advocate for more nurse specialists and for early referral to therapists for clients to learn how to deal with symptoms and improve their quality of life. Conclusion People with PD can experience distressing symptoms both physically and psychologically. Increasing the knowledge and understanding of their health professionals regarding PD symptom control and medication effects within a palliative care approach would help alleviate their distress and increase their quality of life.

It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world. To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers’ needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.

Background: The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods: A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate.Results: A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested.Conclusions: Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those withoutprevious family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care.