Continuing Bonds With Children and Bereaved Young People: A Narrative Review.

BACKGROUND: Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children or young people establish and develop a "continuing bond" with deceased family members. AIM: To investigate how bereaved young people continue bonds with deceased family members. DESIGN: A systematically conducted narrative review was conducted using six electronic databases: CINAHL, Medline, EMBASE, PsycINFO, PubMed, and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the Joanna Briggs Institute Critical Appraisal Tools. RESULTS: Twenty articles were included in the review. Three overarching themes were generated: unintended connections, intended connections, and internalized connections. CONCLUSION: Bereaved young people establish a sense of connection with deceased family members through various means (e.g., unprovoked or spontaneous reminders, physical mementos, internalized memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection.

The use of digital legacies with people affected by motor neurone disease for continuing bonds: An interpretative phenomenological analysis study.

BACKGROUND: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person's life, memories and achievements. AIM: To investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. DESIGN: A qualitative study underpinned by interpretative phenomenological analysis. SETTING/PARTICIPANTS: People living with motor neurone disease (n = 4) and bereaved young people (n = 3) in the United Kingdom. Open-ended interviews were conducted in person. Ethical approval was granted by a University ethics committee. RESULTS: Five key themes emerged exemplifying mutual challenges and benefits for people with motor neurone disease and bereaved young people. Creating a digital legacy provides a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos. CONCLUSION: This study expands the existing continuing bonds model of grief to include an 'autobiographical chapter', creating 'The Model of Reciprocal Bonds Formation'.

Teaching nurses to teach: A qualitative study of nurses' perceptions of the impact of education and skills training to prepare them to teach end-of-life care.

AIMS AND OBJECTIVES: To explore nurses' perceptions of the impact of a programme designed to train them to teach end-of-life care. BACKGROUND: Central to national and international policies are the need for generalist healthcare staff to have education in end-of-life care. Much end-of-life care education is provided by specialist nurses who often have no specific education development to prepare them to teach. To address this gap, an Education Development Programme (EDP) was developed and delivered to specialist nurses. We report on the evaluation of the programme. DESIGN: A qualitative programme evaluation methodology was adopted. METHODS: Data were collected through focus groups, at three hospice education centres in North West England, with a total of 20 participants. Nurses who had completed the EDP were purposively sampled. Data were digitally audio-recorded and subjected to thematic analysis to organise, reduce and refine the data. Ethical approval was obtained. COREQ guidelines have been adhered to in the reporting of this study. RESULTS: Two main themes were identified; learning to teach and building skills to change teaching practice. Participants felt more confident and better prepared to teach. CONCLUSIONS: It cannot be assumed that specialist staff, with teaching in their role, have the skills to facilitate learning. This programme offers a potential method of improving facilitation skills for nurses who have an education element to their role. RELEVANCE TO CLINICAL PRACTICE: Quality end-of-life care is only possible with a skilled workforce, confident and able to apply the principles of compassionate end-of-life care to everyday practice. Appropriately trained, specialist staff are better able to teach others how to deliver good quality end-of-life care. Specialist staff with teaching responsibilities should be provided with, or engage in, continuous professional development to develop their skills and improve their efficacy when teaching.

Meeting patients' spiritual needs during end-of-life care: A qualitative study of nurses' and healthcare professionals' perceptions of spiritual care training.

AIMS AND OBJECTIVES: To explore nurses' and healthcare professionals' perceptions of spiritual care and the impact of spiritual care training on their clinical roles. BACKGROUND: Many nurses and healthcare professionals feel unprepared and lack confidence, competence and skills, to recognise, assess and address patients' spiritual issues. Patients with unmet spiritual needs are at increased risk of poorer psychological outcomes, diminished quality of life and reduced sense of spiritual peace. There are implications for patient care if nurses and healthcare professionals cannot attend to patients' spiritual needs. DESIGN: A qualitative methodology was adopted. METHODS: Recruitment was purposive. A total of 21 generalist and specialist nursing and healthcare professionals from North West and South West England, who undertook spiritual care training between 2015-2017, were recruited. Participants were required to be a minimum of 3 months posttraining. Digitally audio-recorded semistructured interviews lasting 11-40 min were undertaken in 2016-2017. Data were subjected to thematic analysis. Ethical committee approval was obtained. COREQ reporting guidelines were utilised. RESULTS: Two main themes were identified, recognising spirituality, with subthemes of what spirituality means and what matters, and supporting spiritual needs, with subthemes of recognition of spiritual distress, communication skills, not having the answers and going beyond the physical. CONCLUSIONS: Supporting patients as they approach the end of life needs a skilled workforce; acknowledging the importance of spiritual care and having skills to address it are central to delivery of best holistic care. RELEVANCE TO CLINICAL PRACTICE: Spiritual care is as important as physical care and supporting patients spiritually as they approach the end of life is vital. Appropriately trained, nurses and healthcare professionals are better able to assess, explore and meet patients' spiritual needs.

A qualitative study of health care professionals' views and experiences of paediatric advance care planning.

BACKGROUND: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals' views and experiences of paediatric advance care planning in hospitals, community settings and hospices. METHODS: A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0-18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children's hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. RESULTS: Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. CONCLUSION: The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.

Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices.

AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.

Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care.

AIM: To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. BACKGROUND: The public indicate a preference to be cared for and to die at home. This has inherent challenges, with a key factor being the family caregiver. Supporting end-of-life care at home has resulted in the expansion of Hospice at Home services. A wide configuration of services exists with a lack of robust evidence as to what is valued by recipients, particularly those who are older people. DESIGN: A prospective descriptive qualitative study. METHODS: Recruitment was purposive. Eligible participants were in receipt of Hospice at Home service on at least three occasions and were deemed to have a life expectancy measured in weeks rather than days. Digitally recorded semistructured interviews with 41 participants (16 patients and 25 family caregivers) were undertaken between October 2014 - July 2015. Data were analysed and organized thematically. RESULTS: Several subthemes: 'Talking about'; 'Knowing and Doing'; 'Caring for the Caregivers'; and 'Promoting Choice' contributed to the overall theme of Embracing Holism. A positive impact on emotional, psychological, social and physical well-being was apparent. CONCLUSIONS: This study has provided additional insights as to the value of Hospice at Home care where Hospice Nurses are helping to bring Hospice care into the home. This is helping to support older people who are dying and their caregivers, to live as well as possible and facilitate their wish to be cared for and die in their own home.

Gaining consensus on family carer needs when caring for someone dying at home to develop the Carers' Alert Thermometer (CAT): a modified Delphi study.

AIM: To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home. BACKGROUND: Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support. Development of an alert tool to identify carers' needs in everyday practice required identification and consensus of the priority areas of need for inclusion. DESIGN: Multi-phase modified Delphi study and instrument development. METHOD: Qualitative and quantitative data collection took place between 2011-2013 with 111 carers and 93 professionals to identify carers' needs and gain consensus on the priority areas for inclusion in the alert tool. An expert panel stage and final evidence review post-Delphi were used. RESULTS: The Delphi panels had high levels of agreement and consensus. Ten areas of carer need across two themes of 'the current caring situation' and 'the carer's own health and well-being' were prioritized for inclusion in the alert tool. An optional end-of-life planning question was included following the final stages. CONCLUSIONS: The results provide evidence of carers' needs to be assessed, areas for consideration in the education of those who support carers and someone dying at home and targeting of services, while demonstrating the usefulness and adaptability of the Delphi method.

Short break and emergency respite care: what options for young people with life-limiting conditions?

BACKGROUND: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care. OBJECTIVE: To explore alternative short break and emergency respite care options to children's hospice care. METHODS: A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only. RESULTS: There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria. CONCLUSION: Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.

The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

OBJECTIVE: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. METHOD: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. RESULTS: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. SIGNIFICANCE OF RESULTS: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.

BACKGROUND: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. METHODS: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers' Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011-2014). RESULTS: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer's own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel. CONCLUSIONS: The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service.

AIMS AND OBJECTIVES: To explore bereaved family carers' perceptions and experiences of a hospice at home service. BACKGROUND: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources. DESIGN: A qualitative study. METHODS: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis. RESULTS: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life. CONCLUSIONS: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments. RELEVANCE TO CLINICAL PRACTICE: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.

Supporting home care for the dying: an evaluation of healthcare professionals' perspectives of an individually tailored hospice at home service.

AIMS AND OBJECTIVES: To explore health care professionals' perspective of hospice at home service that has different components, individually tailored to meet the needs of patients. BACKGROUND: Over 50% of adults diagnosed with a terminal illness and the majority of people who have cancer, prefer to be cared for and to die in their own home. Despite this, most deaths occur in hospital. Increasing the options available for patients, including their place of care and death is central to current UK policy initiatives. Hospice at home services aim to support patients to remain at home, yet there are wide variations in the design of services and delivery. A hospice at home service was developed to provide various components (accompanied transfer home, crisis intervention and hospice aides) that could be tailored to meet the individual needs of patients. DESIGN: An evaluation study. METHODS: Data were collected from 75 health care professionals. District nurses participated in one focus group (13) and 31 completed an electronic survey. Palliative care specialist nurses participated in a focus group (9). One hospital discharge co-ordinator and two general practitioners participated in semi-structured interviews and a further 19 general practitioners completed the electronic survey. RESULTS: Health care professionals reported the impact and value of each of the components of the service, as helping to support patients to remain at home, by individually tailoring care. They also positively reported that support for family carers appeared to enable them to continue coping, rapid access to the service was suggested to contribute to faster hospital discharges and the crisis intervention service was identified as helping patients remain in their own home, where they wanted to be. CONCLUSIONS: Health care professionals perceived that the additional individualised support provided by this service contributed to enabling patients to continue be cared for and to die at home in their place of choice. RELEVANCE TO CLINICAL PRACTICE: This service offers various components of a hospice at home service, enabling a tailor made package to meet individual and local area needs. Developing an individually tailored package of care appears to be able to meet specific needs.

Experiences of dying, death and bereavement in motor neurone disease: a qualitative study.

OBJECTIVES: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. METHODS: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. RESULTS: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. CONCLUSION: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

The personal value of being a palliative care Community Volunteer Worker in Uganda: a qualitative study.

BACKGROUND: Volunteers in palliative care play a key role, particularly in the hospice setting. The expansion of palliative care into developing countries has been accompanied by the emergence of volunteer workers, who are providing a main source of support and care for patients, many of whom never see a health professional. AIM: The aim of this study was to evaluate the motivation for becoming a volunteer and the personal impact of being a palliative care Community Volunteer Worker in Uganda. DESIGN: A qualitative methodology using semi-structured individual and group digitally recorded interviews was adopted for the study. Data were analysed for emerging themes using thematic analysis. SETTING/PARTICIPANTS: Forty-three interviews were undertaken, 32 with Community Volunteer Workers and 11 with the Hospice clinical teams, using semi-structured digitally recorded individual, group and focus group interviews at the Hospice Africa sites in Uganda. RESULTS: The results identified the cultural wish to help people as a key motivator in becoming a volunteer. Additionally, the volunteers reported having a sense of pride in their volunteering role, and this role had a positive impact on their perceived status in their local community. CONCLUSION: This model of volunteering is clearly having an impact on the volunteers, both personally and also in terms of how they are treated in their communities. Further research to explore the long-term personal benefits of being a palliative care volunteer is recommended.

Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: why are such services used or refused?

Many patients with the terminal condition motor neurone disease/amyotrophic lateral sclerosis (MND/ALS) do not access social service homecare, which may have implications for the location of end-of-life care. We aimed to identify factors related to uptake of such care in MND/ALS. A case note review of patients at a UK MND/ALS clinic (N = 97) provided data concerning disease onset and severity, demographic variables and care received. Narrative interviews with people with MND/ALS (N = 24) and family carers (N = 18) explored their perspectives on social services homecare. Quantitative analyses highlighted the role of increasing disease severity and age for social services homecare uptake. However, qualitative findings revealed a number of barriers delaying the uptake of such care. 'Internal' issues focused on retaining control and normality within the home. 'External' issues arose from limited understanding of the disease amongst service providers and lack of awareness of service entitlement amongst patients and carers. Multiple factors are implicated in the uptake of social services homecare. Uncertainties surrounding service entitlement must be addressed, including the simplification of bureaucratic procedures and clarification of the roles of health and social care professionals. Service providers need a greater awareness of the nature of the disease and their role in its management.

Care of patients with neurological conditions: the impact of a Generic Neurology Nursing Service development on patients and their carers.

AIMS AND OBJECTIVES: The aim of this study was to explore patients and carers views and experiences of the impact of the Generic Neurology Nursing Service. BACKGROUND: Neurological conditions are a major cause of disability and are estimated to affect up to one billion people worldwide. It is clear that this number is set to rise as the world's population is ageing. Although there are established disease specific neurological specialist nursing services that have been reported as benefitting patients and carers, not all neurological patients are captured in these services. To address this deficit and to provide a rapidly accessible service the Generic Neurology Service was established. DESIGN: A qualitative study using joint and one to one semi structured interviews. A purposive sample of 20 patients and carers participated in the study. RESULTS: Two broad themes emerged which are inextricably linked: longer consultation times and the benefit of seeing a knowledgeable specialist nurse. CONCLUSIONS: The respondents in this study reported the benefits of a longer consultation time coupled with the opportunity to talk freely about their symptoms and to ask more questions. All the patients and carers interviewed in this study were satisfied with the care provided by the Generic Neurology Nurse Service, with the majority highlighting improvements it has made in their lives. RELEVANCE TO CLINICAL PRACTICE: This study has shown how a novel approach to service design and delivery can help to bridge the gap in the provision of a bespoke service for patients with a neurological condition who currently are receiving sub optimal care. Having a service that patients can rapidly access can be suggested as preventing clinical emergencies, maintaining patients' self management and resulting in care of the level of the best.

Why do students fail to disclose health problems?

BACKGROUND: At the university where this study took place, pre-qualifying healthcare students had previously been enrolled on programmes and were found to have pre-existing and ongoing health problems, which caused difficulties for some students during clinical placements. AIM: To develop a web-based information zone dealing with students' concerns about fitness-to-practise issues. METHOD: A three-stage study involving an online student survey, in-depth student interviews and development of a university web-based information zone was carried out. RESULTS: The web zone's content is based on key areas of importance identified by students who participated in the study. CONCLUSION: Early indications show that prospective and current students regularly use the web zone, demonstrated by the number of site hits.

From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers - a qualitative study.

Our objectives were to explore the personal perspectives of the diagnostic experience for people with ALS/MND and their family carers identifying issues that could impact positively or negatively on these experiences. We conducted a qualitative study with face-to-face interviews to capture experiences from 24 people with ALS/MND and 18 current family carers. Ten former family carers were also interviewed. The diagnostic experience was fraught with difficulties. There was failure to recognize the significance of some symptoms by patients, carers and primary and secondary care health professionals, which ultimately delayed diagnosis. Delivery of the diagnosis was frequently unsatisfactory despite international guidelines on the subject. Immediate post-diagnosis support often compared negatively to that provided for people with cancer. In conclusion, this study has identified a need for a more streamlined and empathetic diagnostic pathway for people with ALS/MND. Improvements to medical curricula are required to increase awareness of the condition and reduce the likelihood of diagnostic delays resulting from a failure to recognize the need for a neurological referral. Greater public awareness of the illness is also needed. Furthermore, delivery of the diagnosis should more closely adhere to established guidelines.

'A bridge to the hospice': the impact of a Community Volunteer Programme in Uganda.

In Africa, the need for palliative care provision is escalating with an increasing number of people living with HIV/AIDS, coupled with rising cancer and AIDS-related cancer diagnoses. In Uganda there is a shortage of doctors, particularly in rural areas. To address this Hospice Africa Uganda developed a Community Volunteer Programme to train volunteers to help by providing support to patients in their own homes. The aim of this qualitative study was to evaluate the impact of the Community Volunteer Programme. Sixty-four interviews, with patients (21), community volunteer workers (CVWs) (32), and the hospice clinical teams (11) were conducted, using semi-structured digitally recorded individual, group and focus group interviews, at the Hospice Africa Uganda sites. The results reported the value of the Community Volunteer Programme, including the impact on patients and families, and how the CVWs acted as a 'bridge to the hospice' in identifying patients. Developing financial challenges that are emerging which could potentially impact on the programme were reported. The Community Volunteer Programme appears to be having a positive impact on patients, families and the hospice team, and is a model worthy of consideration by other developing countries to allow the expansion of palliative care.