Showing papers in "Palliative Medicine in 2012"
TL;DR: Following trends in the USA and Canada, dying is also shifting to people’s homes in Britain and home deaths increased for the first time since 1974 amongst people aged 85 years and over.
Abstract: Background: Increased attention is being paid to the place where people die with a view to providing choice and adequately planning care for terminally ill patients. Secular trends towards an institutionalised dying have been reported in Britain and other developed world regions.Aim: This study aimed to examine British national trends in place of death from 2004 to 2010.Design and setting: Descriptive analysis of death registration data from the Office for National Statistics, representing all 3,525,564 decedents in England and Wales from 2004 to 2010.Results: There was a slow but steady increase in the proportion of deaths at home, from 18.3% in 2004 to 20.8% in 2010. Absolute numbers of home deaths increased by 9.1%, whilst overall numbers of deaths decreased by 3.8%. The rise in home deaths was more pronounced in cancer, happened for both genders and across all age groups, except for those younger than 14 years and for those aged 65–84, but only up to 2006. The rise was more evident when ageing was acc...
178 citations
TL;DR: This study confirms that OXN PR is well tolerated and efficacious in cancer pain patients and results are in line with those seen in non-malignant pain patients.
Abstract: Objective: An examination of whether oxycodone/naloxone prolonged-release tablets (OXN PR) can improve constipation and maintain analgesia, compared with oxycodone prolonged-release tablets (OxyPR) in patients with moderate/severe cancer pain.
Methods: Randomized, double-blind, active-controlled, double-dummy, parallel-group study in which 185 patients were randomized to receive up to 120 mg/day of OXN PR or OxyPR over 4 weeks. Efficacy assessments included Bowel Function Index (BFI), Brief Pain Inventory Short-Form (BPI-SF), laxative and rescue medication use. Quality of life (QoL) and safety assessments were conducted.
Results: After 4 weeks, mean BFI score was significantly lower with OXN PR; mean total laxative intake was 20% lower with OXN PR. Mean BPI-SF scores were similar for both treatments and the average rate of analgesic rescue medication use was low and comparable. QoL assessments were stable and comparable with greater improvements in constipation-specific QoL assessments with OXN PR. Overall, rates of adverse drug reactions were similar.
Conclusions: OXN PR provides superior bowel function in cancer pain patients, compared with OxyPR, without compromising analgesic efficacy or safety. This study confirms that OXN PR is well tolerated and efficacious in cancer pain patients and results are in line with those seen in non-malignant pain patients.
150 citations
TL;DR: The evidence suggests a rapid increase in the number of robust intervention studies, however, the range of models remains narrow in relation to caregivers’ needs and preferences.
Abstract: Introduction: Informal caregivers needs in cancer/advanced disease are largely unmet. The science of carer intervention evaluation is methodologically challenging, and the evidence historically weak.Objective: This systematic review updates an earlier effectiveness review to determine both the effectiveness of subsequently published intervention studies, and the current state of science.Method: The evidence was identified and appraised using a comprehensive search strategy. Articles were searched from 2001 to 2010 using the following electronic databases: Medline, PsychINFO and CINAHL. Inclusion criteria were studies reporting intervention data for informal adult caregivers of a patient with a diagnosis of cancer or receiving palliative care. The design and evidence rigour were assessed using the Jadad Rating Scale, and the Quality Rating Scale.Results: 33 studies met inclusion criteria. From the original review, an encouraging increase was identified in the number of evaluations (from 8 to 33), in carer-...
146 citations
TL;DR: Data indicate that the policy rhetoric of universal palliative care provision is not being straightforwardly translated into service delivery and individual clinical practice within England and New Zealand.
Abstract: Background: the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of c...
115 citations
TL;DR: There is not enough evidence to support a net benefit of n-3-FA in cachexia in advanced cancer, and the results from the review led to a weak negative GRADE recommendation.
Abstract: Background: The European Palliative Care Research Collaboration is developing clinical guidelines on cachexia in patients with advanced cancer. A systematic review on the use of fish oil/omega-3-fatty acids (n-3-FA)/eicosapentaenoic acids (EPA) in advanced cancer patients suffering from cancer cachexia was performed as part of the guideline development.Methods: The systematic literature search in Medline on the use of fish oil/n-3-FA/EPA identified 244 papers, with 38 publications included in the final evaluation. Some smaller trials, often unrandomized and without a control group, reported a good effect of n-3-FA in patients with advanced cancer and cachexia. However, the results of the larger randomized controlled trials could not support the positive results, as they mostly did not find a significant effect.Results: Adverse effects such as abdominal discomfort, fish belching, fish aftertaste, nausea and diarrhoea were reported with a low incidence. No serious adverse effects were documented, but advers...
112 citations
TL;DR: The experiences of MND family carers are explored, both during their time as carers and following bereavement, to provide a basis for more research into the role palliative care services has in supporting MND carers before and after the death of their spouse.
Abstract: Background:Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care.Aim:This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers’ prolonged grief status and to the implications for service delivery, including palliative care.Design:A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers’ prolonged grief.Setting/participants:sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia.Results:The thematic analysis of the interview transcripts revealed five themes – the work of family car...
104 citations
TL;DR: Findings from a qualitative study suggest that the CALM intervention provides substantial benefits for patients with advanced cancer prior to the end of life.
Abstract: Background:Although psychosocial care has been regarded as central to palliative and supportive care, there have been few empirically tested approaches to individual intervention.Aim:The subjective...
99 citations
TL;DR: Although it was feasible to deliver the intervention in this setting, it took longer to complete than anticipated, and this intervention may be a way of enhancing the end-of-life experiences of residents.
Abstract: Background:A pilot study of Dignity Therapy conducted with hospice patients reported high levels of self-reported benefits of the psychotherapy.Aim:To assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to reduce distress in older people in care homes.Design:A randomized controlled open-label trial (ISRCTN37589515). Setting and participants: 60 residents aged 65+ with no major cognitive impairment living in care homes in London, UK.Intervention:Dignity Therapy, a brief palliative care psychotherapy.Outcomes:Potential effectiveness (dignity-related distress, depression, hopefulness, quality of life at baseline and 1 and 8-week follow-up); acceptability (residents’ views on self-reported benefits of Dignity Therapy/the Dignity Therapy study); and feasibility (time taken to deliver the intervention).Results:We randomized 60/755 (8%) residents: 29 – control, 31 – intervention. We found no significant differences between groups on measures of potential effectiveness at any time...
96 citations
TL;DR: UK doctors appear to oppose the introduction of AVE and PAS, even when one considers the methodological limitations of included studies, and degree of religiosity appeared as a statistically significant factor in influencing doctors' attitudes.
Abstract: Objectives: To review studies over a 20-year period that assess the attitudes of UK doctors concerning active, voluntary euthanasia (AVE) and physician-assisted suicide (PAS), assess efforts to minimise bias in included studies, determine the effect of subgroup variables (e.g. age, gender) on doctors’ attitudes, and make recommendations for future research.Data sources: Three electronic databases, four pertinent journals, reference lists of included studies.Review methods: Literature search of English articles between January 1990 and April 2010. Studies were excluded if they did not present independent data (e.g. commentaries) or if they related to doctors outside the UK, patients younger than 18 years old, terminal sedation, withdrawing or withholding treatment, or double-effect. Quantitative and qualitative data were extracted.Results: Following study selection and data extraction, 15 studies were included. UK doctors oppose the introduction of both AVE and PAS in the majority of studies. Degree of rel...
94 citations
TL;DR: Qualitative observational data collection methods can contribute to theoretical and conceptual development and the explanation of social processes in palliative care and should improve understanding of patients’ experiences of their care journey and thus impact on care outcomes.
Abstract: Background:Observational research methods are important for understanding people’s actions, roles and behaviour. However, these techniques are underused generally in healthcare research, including research in the palliative care field.Aim:The aim in this paper is to place qualitative observational data collection methods in their methodological context and provide an overview of issues to consider when using observation as a method of data collection. This paper discusses practical considerations when conducting palliative care research using observation.Findings:Observational data collection methods span research paradigms, and qualitative approaches contribute by their focus on ‘natural’ settings which allow the explanation of social processes and phenomena. In particular, they can facilitate understanding of what people do and how these can alter in response to situations and over time, especially where people find their own practice difficult to articulate. Observational studies can be challenging to ...
90 citations
TL;DR: The evidence from the available clinical trials is of limited amount and quality, but it weakly supports the proposal that the addition of an NSAIDs to WHO Step III opioids can improve analgesia or reduce opioid dose requirement.
Abstract: Background: Nonsteroidal anti-inflammatory drugs (NSAIDs) and paracetamol are used widely in the management of mild to moderate cancer pain and are frequently combined with opioids in the treatment of moderate to severe pain.Aim: To perform a systematic literature review of the evidence of the efficacy and toxicity of NSAIDs or paracetamol added to WHO Step III opioid treatment for cancer pain.Design and data sources: A systematic literature review of MedLine, EMBASE and Cochrane Central register of controlled trials database was carried out using both text words and MeSH/EMTREE terms.Results: Seven eligible papers were retrieved from the new search and five from the Cochrane review. Five of seven studies showed an additive effect of NSAIDs when combined with opioids either by improving analgesia (three studies) or by reducing the opioid dose (two studies). Paracetamol was only marginally effective in one of five trials. The study designs were not adequate to assess differences in side effects between the...
TL;DR: Asian cancer patients’ perceived barriers to managing cancer pain were significantly higher than those for Western patients (especially for concerns about disease progression, tolerance, and fatalism), and Asian cancer patients need to be assessed and carefully treated for perceived barrier barriers to optimize cancer pain management.
Abstract: Purpose: barriers to managing cancer pain contribute to cancer patients’ reluctance to report pain and use prescribed analgesics, resulting in inadequate pain control. Patients’ perceived barriers ...
TL;DR: Qualitative research conducted in the UK sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia.
Abstract: Background:The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care.Aim:This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia.Design:Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach.Setting/participants:The study included palliative care practitioners (n = 58) including medical, nursing and allied healt...
TL;DR: A number of issues people with MND and their carers face in the final stages of the illness are identified, 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.
Abstract: 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...
TL;DR: Adding professionals’ perspective to that of patients is essential to gain a holistic view on patients’ unmet needs and to further optimize their care.
Abstract: Background: Research has only started recently to specifically concentrate on the group of patients severely affected by multiple sclerosis (MS).Aim: The aim of this study was to assess the perception on patients’ unmet needs by healthcare professionals.Methods: Focus groups and expert interviews were recorded, transcribed verbatim and analysed by qualitative content analysis.Results: Unmet needs were identified in four main categories (‘support from family/friends’; ‘healthcare services’; ‘managing everyday life’; ‘maintaining biographical continuity’). Whereas physicians assessed most unmet needs in the category ‘healthcare services’, nurses and social workers focussed on unmet needs in the categories ‘support from family/friends’ and ‘maintaining biographical continuity’. Although the study focused on unmet needs of patients, professionals also voiced their unmet needs when caring for these patients. The group of professionals identified more subcategories than patients and included unmet needs of rela...
TL;DR: It is shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system and will show in what way this initiative can lead to improved quality of life for patients and their families.
Abstract: Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostica ...
TL;DR: The barriers to pediatric palliative care as reported by a group of pediatricians practicing in two large States in the US can be used to develop targeted educational interventions towards providers and families.
Abstract: Purpose: The provision and uptake of pediatric palliative care continues to be plagued by barriers. Several studies have documented these barriers, but none have done so with a diverse sample (most are at a single institution) or specifically about pediatric palliative care. Moreover, none have investigated the factors associated with perceived barriers. Our study has two aims: (1) to describe the barriers to pediatric palliative care as reported by a group of pediatricians practicing in two large States in the US; and (2) to identify factors associated with these perceived barriers.Methods: Cross-sectional survey data were collected from 303 pediatricians in Florida and California.Results: The two greatest barriers reported by the pediatricians were related to families’ reluctance to accept palliative care (95%) and families viewing palliative care as giving up (94%). Only 42% of pediatricians noted that reimbursement was a barrier. Across all the regressions, three factors were consistently associated w...
TL;DR: Advanced palliative and end-of-life care strategies should be developed for and provided to this group of patients, with the dual aims of reduction of unwarranted therapies and enhancement of the quality of death and dying.
Abstract: Adults with congenital heart disease represent a growing patient population. Notwithstanding dramatic improvements in survival and life expectancy over recent decades, many of these patients remain at risk of premature death from progressive heart disease and would benefit from the principles of palliative and end-of-life care. Data on end-of-life care in this patient group are, however, lacking. We report a retrospective study of 48 patients with congenital heart disease who died while admitted to our hospital (mean age at death 37 ± 14 years). We describe circumstances of death, end-of-life discussions, and the provision of end-of-life care. The majority of patients had complex congenital heart disease and were considered to be in the end stage of their disease. Despite this, only a minority of patients had documented end-of-life discussions prior to their terminal admission and most received continuing aggressive medical treatment up to their demise. Advanced palliative and end-of-life care strategies should be developed for and provided to this group of patients, with the dual aims of reduction of unwarranted therapies and enhancement of the quality of death and dying.
TL;DR: In Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death.
Abstract: Purpose: We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in KoreaMethods: A multi-center, cross-sectional survey was performed on 93 terminal cancer patients The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version)Results: A total of 785% of the patients had awareness of their terminal status, while 215% did not; 424% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 217% made decisions on their own, and 359% left the decision-making responsibility to others Patients who were aware of their illness and who actively pa
TL;DR: Core to the older person’s ability to discuss end-of-life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives.
Abstract: Background:Older people living in a care home have a limited life expectancy, and care homes are an important setting for end-of-life care provision.Aim:This research aimed to explore the views, experiences and expectations of end-of-life care among care home residents to understand if key events or living in a residential environment influenced their views.Design:The research used a prospective design. The paper draws on the qualitative interviews of 63 care home residents who were interviewed up to three times over a year. This was a sub-sample of the larger data set of 121 care home residents.Setting/Participants:The residents were recruited from six care homes (providing personal care with no on-site nursing) in the UK. Results: Four main themes were identified; Living in the Past, Living in the Present, Thinking about the Future and Actively Engaged with planning the future. Many residents said they had not spoken to the care staff about end-of-life care; many assumed their family or General Practiti...
TL;DR: The results in this study indicate that the Swedish versions of The Preparedness for caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales.
Abstract: Background: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts tha ...
TL;DR: The majority of nurses had a superficial understanding of delirium management, and adopted a task-orientated approach aimed at addressing the more noticeable problems, which have implications for both education and knowledge translation.
Abstract: Background:Delirium has a significant impact on nursing practice from diagnosis and management, with under-detection and variable management of delirium being international problems. This study aimed to explore nurses’ assessment and management of delirium when caring for people with cancer, the elderly or older people requiring psychiatric care in the inpatient setting.Methods:Participants in this qualitative study were nurses working in Australian public hospital inpatient dedicated units in palliative care, aged care (geriatrics), aged care (geriatric) psychiatry and oncology. Semi-structured interviews were used to explore nurses’ views about specific areas of delirium assessment and management. Purposive sampling was used and interviews conducted until thematic saturation reached. A thematic content analysis was performed from a grounded theory perspective.Results:A total of 40 participants were included in the study. The analysis revealed four broad analytical themes: (1) superficial recognition and...
TL;DR: The provision of palliative care for the increasing prison population remains under-researched globally, with a notable lack of evidence from the United Kingdom.
Abstract: Background: models of care based on the hospice model have delivered effective support to dying people since their inception. Over the last 20 years this form of care has also been introduced into the prison system (mainly in the United States) to afford terminally ill inmates the right to die with dignity.
Aim: the aim of this review is to examine the evidence from the United States and the United Kingdom on the promotion of palliative care in the prison sector, summarizing examples of good practice and identifying barriers for the provision of end-of-life care within the prison environment both in the USA and UK.
Design: an integrative review design was adopted using the Green et al. model incorporating theoretical and scientific lines of enquiry.
Data sources: literature was sourced from six electronic databases between the years 2000 and 2011; the search rendered both qualitative and quantitative papers, discussion papers, ‘grey literature’ and other review articles.
Results: the results highlight a number of issues surrounding the implementation of palliative care services within the prison setting and emphasize the disparity between the USA model of care (which emphasizes the in-prison hospice) and the UK model of care (which emphasizes palliative care in-reach) for dying prisoners.
Conclusion: the provision of palliative care for the increasing prison population remains under-researched globally, with a notable lack of evidence from the United Kingdom.
TL;DR: There is a need for increased research on the role of harm reduction in end-of-life care settings to address the challenges faced by homeless illicit drug users in health and social care settings.
Abstract: Homeless persons tend to die younger than the housed population and have complex, often unmet, end-of-life care needs. High levels of illicit drug use among this population are a particular challenge for health and social services professionals involved in end-of-life care services delivery. This article explores the challenges of end-of-life care services to homeless illicit drug users based on data collected during a national study on end-of-life care services delivery to homeless persons in Canada. The authors conducted qualitative interviews with 50 health and social services professionals involved in health services delivery to homeless persons in five cities. Interviews were transcribed verbatim and analysed thematically. Themes were organised into two domains. First, barriers preventing homeless illicit drug users from accessing end-of-life care services, such as competing priorities (e.g. withdrawal management), lack of trust in healthcare providers and discrimination. Second, challenges to end-of...
TL;DR: It is shown that the distress tool picks up a broader array of signs, which may be useful both in practice and in research, and the pain tool also picks up distress, which is not caused by pain.
Abstract: Objective:There is a concern that pain is under-recognized in dementia. However, there may be other causes of distress. We wished to evaluate the utility of a distress tool and a pain tool.Methods:Nursing home residents with advanced dementia were observed using pain (Pain Assessment in Advanced Dementia scale (PAINAD)) and distress (Disability Distress Assessment Tool (DisDAT)) assessment tools. Those in pain were treated. Reassessment occurred at one and three months.Results:From 79 participants, 13 were assessed as being in pain. Psychosocial factors explained the behaviour of a false positive group. Both tools showed a significant decrease in pain following intervention (p = 0.008). Behaviours were similar in both groups.Conclusions:Both tools are useful. However, the pain tool also picks up distress, which is not caused by pain. It could potentially lead to false ascriptions of pain. The distress tool picks up a broader array of signs, which may be useful both in practice and in research.
TL;DR: The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative.
Abstract: There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland.
TL;DR: The results identified the cultural wish to help people as a key motivator in becoming a volunteer and this role had a positive impact on their perceived status in their local community.
Abstract: 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...
TL;DR: Practical considerations from a forum held to discuss issues by active palliative care clinical researchers are highlighted, including guidance on design; methodologies; and strategies for maximizing recruitment and retention that will help to inform future trial design and conduct in palliatives care.
Abstract: Rigorous clinical research in palliative care is challenging but achievable. Trial participants are likely to have deteriorating performance status, co-morbidities and progressive disease. It is difficult to recruit patients, and attrition unrelated to the intervention being trialled is high. The aim of this paper is to highlight practical considerations from a forum held to discuss these issues by active palliative care clinical researchers. To date, the Australian Palliative Care Clinical Studies Collaborative (PaCCSC) has randomized more than 500 participants across 12 sites in 8 Phase III studies. Insights from the 2010 clinical research forum of the PaCCSC are reported. All active Australian researchers in palliative care were invited to present their current research and address three specific questions: (1) What has worked well? (2) What didn't work well? and (3) How should the research be done differently next time? Fourteen studies were presented, including six double-blind, randomized, controlled, multi-site trials run by the PaCCSC. Key recommendations are reported, including guidance on design; methodologies; and strategies for maximizing recruitment and retention. These recommendations will help to inform future trial design and conduct in palliative care.
TL;DR: There is new evidence that although engaging in follow-back surveys can evoke distress, many participants report it to be a positive experience and it is believed that this approach is acceptable when conducted sensitively.
Abstract: Background: Bereaved relatives are considered to be a vulnerable group and there is debate as to whether it is ethical to engage them in research at a time that can be difficult for them.Aim: We co...
TL;DR: Qualitative findings revealed a number of barriers delaying the uptake of social services homecare in MND/ALS, including limited understanding of the disease amongst service providers and lack of awareness of service entitlement amongst patients and carers.
Abstract: 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...