A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home.

There are approximately 1.3 million stroke survivors in the UK, with the majority of them relying on family caregivers for support. However, the needs of family caregivers are not routinely assessed by most services. The aim of this study was to explore the experiences of stroke family caregivers following the implementation of the Care Act, 2014. A total of 16 semi-structured, digitally recorded face-to-face qualitative interviews were conducted with a purposive sample of stroke family caregivers in north-west England. Thematic analysis was undertaken. Two themes were identified: the effects of caregiving and the unmet needs of the family caregivers. Despite changes to legislation, family caregivers of stroke survivors continue to experience challenges, such as financial problems, information needs, and a lack of respite and emotional support when providing care. Existing approaches to identifying and supporting caregiver needs are insufficient. Proactive approaches are required to ensure the needs of family caregivers are identified and addressed on a regular basis.

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.

The engagement of young people in their own advance care planning process: A systematic narrative synthesis.

BACKGROUND: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their own advance care plan is important to shape future practice and facilitate young people's wishes. AIM: To identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process. DESIGN: A systematic narrative synthesis according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using a quality assessment framework previously used in similar research. DATA SOURCES: CINAHL Complete, MEDLINE, PubMed and PsycINFO were searched for articles published between 1 January 1990 and 31 October 2017. Grey literature was searched using Google Scholar and Open Grey. RESULTS: Most studies related to the engagement of young people were conducted in hospitals or other institutions. Research reported not only the aim to include young people in their own advance care planning but also potential barriers to engagement. Barriers include poor communication, conflict within relationships of those in the planning process and patchy education and training for healthcare professionals. Some existing studies are characterised by a lack of rigorous, high-quality research, limiting their impact. CONCLUSION: Irrespective of setting, engagement of young people would benefit their advance care planning. More detailed, high-quality research is needed to understand the extent of the barriers to young people's engagement in their own advance care plan and how to facilitate their involvement.

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.

Difficult decisions: An interpretative phenomenological analysis study of healthcare professionals' perceptions of oxygen therapy in palliative care.

BACKGROUND: The role of oxygen therapy to palliate dyspnoea is controversial. Without a clear evidence base oxygen is commonly prescribed, sometimes to the detriment of patients. This use of oxygen appears to be an entrenched culture, the roots of which remain obscure. AIM: To explore healthcare professionals' perceptions of oxygen therapy in palliative care. DESIGN: Interpretative phenomenological analysis study utilising semi-structured interviews to explore beliefs and behaviours of healthcare professionals regarding palliative oxygen therapy. Data were recorded, transcribed and analysed using interpretative phenomenological analysis. SETTING/PARTICIPANTS: A total of 34 healthcare professionals, including doctors, nurses, pharmacists and paramedics in the United Kingdom, who were involved in prescribing, or administering, oxygen therapy to palliate dyspnoea. RESULTS: Most healthcare professionals in this study were well informed about oxygen therapy; all recognised the role of oxygen in palliative care setting as important. The overarching theme of compassion identified sub-themes of 'comfort', 'do anything and everything' and 'family benefit'. However, the use of oxygen in the palliative care setting was not without its dilemmas, as additional sub-themes of 'controversy', 'doubt' and 'dependency' illustrated. CONCLUSION: Findings suggest that oxygen therapy in palliative care poses an on-going dilemma for healthcare professionals striving to provide optimum care. It seems patients and families often expect and welcome oxygen, but the perception of oxygen as a solution to dyspnoea can conflict with healthcare professionals' own doubt and experiences. There appears to be an emotional cost associated with this dilemma and the choices that need to be made.

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.

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

OBJECTIVE: The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death. METHOD: Unsolicited narratives (internet and print-published) written by individuals diagnosed with the terminal condition of ALS/MND were analyzed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years (from 1968 to 2005) were included. RESULTS: Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them. SIGNIFICANCE OF RESULTS: The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team.

Delivering compassionate care: the enablers and barriers.

The importance of providing compassionate care to patients is well established. While compassionate care can be understood as an individual response to others' vulnerability, it is acknowledged that healthcare environments can impact significantly on this aspect of practice. This study sought to explore how health professionals and pre-qualifying healthcare students (HCS) understand compassionate care and factors that hinder or enable them to practice compassionately. The perceptions of health professionals (n=146) and HCS (n=166) registered at a university in Northwest England were explored using mixed methods. This article reports on the data gained from the qualitative interviews and responses to open-text questions from the mainly quantitative questionnaire. The findings are discussed under the following themes: individual and relationship factors that impact on compassionate care practice; organisational factors that impact on the clinical environment and team; and leadership factors that hinder or enable a compassionate care culture. This article argues that there are a number of enabling factors that enhance a culture conducive to providing compassionate care. These include leaders who act as positive role models, good relationships between team members and a focus on staff wellbeing.

Using the Carers' Alert Thermometer tool to identify needs and support family caregivers of people with motor neurone disease: moving beyond needs assessments.

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. Methods: This mixed-method study was conducted in Western Australia (2020-2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6-8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks.

The diagnostic experience for people with MND and their caregivers in the U.K.

OBJECTIVE: How an MND diagnosis is communicated has implications for how individuals adapt to their illness. The consultation process with the neurologist, diagnosis delivery, and adherence to UK guidelines, were explored from the perspectives of people diagnosed with MND and family caregivers. METHODS: A cross-sectional approach with people with MND and their caregivers in UK. An anonymous online survey, based on the SPIKES protocol for delivering bad news and containing questions focusing on the UK NICE MND guideline, was distributed in 2018-19. RESULTS: 69 people with MND and 39 caregivers responded. People with MND were more likely than caregivers to rate highly their neurologist's skills and ability and their satisfaction with delivery of the diagnosis. The amount of time spent with the neurologist at diagnosis had an impact on the level of satisfaction and rating of the neurologist's skills and abilities. The SPIKES criteria were generally not met. Many of the NICE MND guideline recommendations were not met, though adherence was greater in MND Centres. CONCLUSIONS: While there is evidence of satisfaction with the delivery of the diagnosis amongst people with MND and caregivers, there is room for improvement. There is a need for greater awareness of the requirements of people with MND and caregivers. There is also a need to raise awareness of the NICE MND guideline and ensure adequate training, time and funding to ensure communication at this difficult time is acceptable and effective. Where possible it would be preferable for referrals to be made to MND centres.

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.

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.