RESUMO
BACKGROUND: An ageing prison population with complex health needs combined with punitive sentencing practices means palliative care for incarcerated individuals is increasingly important. However, there is limited evidence regarding the models of care delivery in high-income countries, and their associated challenges and benefits. AIM: To develop a typology of models of palliative care provision for incarcerated individuals, synthesise evidence of their outcomes and describe facilitators of and challenges in delivering different models of palliative and end-of-life care in prisons. DESIGN: Scoping review following Arksey and O'Malley, with narrative synthesis. The protocol was registered prospectively (reviewregistry1260). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO, the Social Sciences Citation Index and grey literature were searched on 15th March 2023. The Mixed Methods Appraisal Tool (MMAT) was used for quality appraisal. RESULTS: A total of 16,865 records were screened; 22 peer-reviewed articles and 18 grey literature sources met the inclusion criteria. Three models were identified: Embedded Hospice, Outsourcing Care and Community Collaboration. The Embedded Hospice model shows potential benefits for patients and prisons. Outsourcing Care may miss opportunities for comprehensive care. Collaborative Care relies on proactive prison-community relationships that could be formalised for improvement. Psychosocial and bereavement needs of those dying in prison and their caregivers lack sufficient documentation. CONCLUSION: Further research is needed to evaluate prison hospice costs and examine how prison hospices impact compassionate release usage. Beyond the USA, policies might formalise care pathways and recognise best practices. Further investigation to address psychosocial needs of people in prison with life-limiting illnesses and post-death bereavement support is required.
Assuntos
Países Desenvolvidos , Cuidados Paliativos , Prisioneiros , Humanos , Atenção à Saúde , Acessibilidade aos Serviços de Saúde , Prisioneiros/psicologia , PrisõesRESUMO
The objective of this study was to understand the conceptualisation and development of a novel way of providing end-of-life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017-2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty-six individual and eight follow-up interviews, two group interviews and five discrete action cycles were completed. At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home-like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.
Assuntos
Cuidadores , Cuidados Paliativos na Terminalidade da Vida , Morte , Pesquisa sobre Serviços de Saúde , Humanos , Cuidados Paliativos , VoluntáriosRESUMO
This study sought to assess the value of multiparametric magnetic resonance image (mp-MRI) in patients with a prostate cancer (PCa) Gleason score of 6 or less under consideration for or already in active surveillance and to determine the rate of upgrading by target biopsy. Three hundred and fifty-four consecutive men with an initial transrectal ultrasound-guided (TRUS) biopsy-confirmed PCa Gleason score of 6 or less under clinical consideration for or already in active surveillance underwent mp-MRI and were retrospectively reviewed. One hundred and nineteen of 354 patients had cancer-suspicious regions (CSRs) at mp-MRI. Each CSR was assigned a Prostate Imaging Reporting and Data System (PI-RADS) score based on PI-RADS v2. One hundred and eight of 119 patients underwent confirmatory imaging-guided biopsy for CSRs. Pathology results including Gleason score (GS) and percentage of specimens positive for PCa were recorded. Associations between PI-RADS scores and findings at target biopsy were evaluated using logistic regression. At target biopsy, 81 of 108 patients had PCa (75%). Among them, 77 patients had upgrading (22%, 77 of 354 patients). One hundred and forty-six CSRs in 108 patients had PI-RADS 3 n = 28, 4 n = 66, and 5 n = 52. The upgraded rate for each category of CSR was for PI-RADS 3 (5 of 28, 18%), 4 (47 of 66, 71%) and 5 (49 of 52, 94%). Using logistic regression analysis, differences in PI-RADS scores from 3 to 5 are significantly associated with the probability of disease upgrade (20%, 73%, and 96% for PI-RADS score of 3, 4, and 5, respectively). Adding mp-MRI to patients under consideration for or already in active surveillance helps to identify undiagnosed PCa of a higher GS or higher volume resulting in upgrading in 22%.
RESUMO
Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of 'historic' sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a 'double burden' when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a 'de facto life sentence', whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice.
Assuntos
Envelhecimento , Morte , Política , Prisioneiros/estatística & dados numéricos , Prisões , Idoso , Idoso de 80 Anos ou mais , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Reino UnidoRESUMO
BACKGROUND: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. AIM: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. DESIGN: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers ( n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts ( n = 30) where narrative analysis was undertaken. SETTING/PARTICIPANTS: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants ( n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. RESULTS: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. CONCLUSION: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.
Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Morte , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Inglaterra , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Narração , Pesquisa QualitativaAssuntos
Política de Saúde , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Prisioneiros , Prisões/organização & administração , Assistência Terminal/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Pulmonary arterial hypertension (PAH) has demonstrated multi-serotonin receptor dependent pathologies, characterized by increased tone (5-HT1B receptor) and complex lesions (SERT, 5-HT1B, 5-HT2B receptors) of the pulmonary vasculature together with right ventricular hypertrophy, ischemia and fibrosis (5-HT2B receptor). Selective inhibitors of individual signaling elements - SERT, 5-HT2A, 5HT2B, and combined 5-HT2A/B receptors, have all been tested clinically and failed. Thus, inhibition of tryptophan hydroxylase 1 (TPH1), the rate limiting step in 5-HT synthesis, has been suggested as a more broad, and thereby more effective, mode of 5-HT inhibition. However, selectivity over non-pathogenic enzyme family members, TPH2, phenylalanine hydroxylase, and tyrosine hydroxylase has hampered therapeutic development. Here we describe the site/sequence, biochemical, and biophysical characterization of a novel allosteric site on TPH1 through which selectivity over TPH2 and related aromatic amino acid hydroxylases is achieved. We demonstrate the mechanism of action by which novel compounds selectively inhibit TPH1 using surface plasma resonance and enzyme competition assays with both tryptophan ligand and BH4 co-factor. We demonstrate 15-fold greater potency within a human carcinoid cell line versus the most potent known TPH1/2 non-specific inhibitor. Lastly, we detail a novel canine in vivo system utilized to determine effective biologic inhibition of newly synthesized 5-HT. These findings are the first to demonstrate TPH1-selective inhibition and may pave the way to a truly effective means to reduce pathologic 5-HT and thereby treat complex remodeling diseases such as PAH.
RESUMO
Many of the current clinical screening methods for prostate cancer (PCa) such as prostate-specific antigen (PSA) testing or transrectal ultrasound-guided prostate biopsy lack sensitivity and specificity for diagnosis of PCa of the transition zone (TZ). Recent technical advances in multiparametric-MRI have markedly improved detection of PCa of the TZ. However, there are many diagnostic challenges that we still encounter in our daily practice that compromise the accuracy of the diagnosis. By performing both MRI-guided and ultrasound/MRI fusion-guided biopsies, we have gained extensive experience in the diagnosis of PCa of the TZ. Biopsy-proven examples including but not limited to typical and atypical PCa of the TZ as well as a wide variety of its mimics will be presented. Recognition of the MR features of typical and atypical PCa of the TZ and its mimics on multiparametric-MRI along with findings that help to differentiate these mimics from PCa is important in establishing an accurate diagnosis and in guiding clinical management.
Assuntos
Imageamento por Ressonância Magnética/métodos , Neoplasias da Próstata/diagnóstico por imagem , Neoplasias da Próstata/patologia , Humanos , MasculinoRESUMO
Despite falling crime rates in England and Wales over the past 20 years, the number of prisoners has doubled. People over the age of 50 constitute the fastest growing section of the prison population, and increasing numbers of older prisoners are dying in custody. This article discusses some of the issues raised by these changing demographics and draws on preliminary findings from a study underway in North West England. It describes the context behind the rise in the numbers of older prisoners; explores the particular needs of this growing population; and discusses some of the practical and emotional challenges for prison officers, health care staff, and fellow prisoners who are involved in caring for dying prisoners in a custodial environment.
Assuntos
Cuidados Paliativos/organização & administração , Prisões/organização & administração , Assistência Terminal/organização & administração , Idoso , Demografia , Inglaterra , Feminino , Idoso Fragilizado , Humanos , Masculino , Pessoa de Meia-Idade , País de GalesRESUMO
OBJECTIVE: The Society of Abdominal Radiology established a panel to prepare a consensus statement on the role of barium esophagography in gastroesophageal reflux disease (GERD), as well as recommended techniques for performing the fluoroscopic examination and the gamut of findings associated with this condition. CONCLUSION: Because it is an inexpensive, noninvasive, and widely available study that requires no sedation, barium esophagography may be performed as the initial test for GERD or in conjunction with other tests such as endoscopy.
Assuntos
Sulfato de Bário , Consenso , Refluxo Gastroesofágico/diagnóstico por imagem , Esôfago de Barrett/diagnóstico por imagem , Meios de Contraste , Neoplasias Esofágicas/diagnóstico por imagem , Esofagite/diagnóstico por imagem , Esofagoscopia , Esôfago/anormalidades , Esôfago/diagnóstico por imagem , Hérnia Hiatal/diagnóstico por imagem , Humanos , Faringe/anormalidades , Faringe/diagnóstico por imagemRESUMO
Multiparametric-MRI is an important tool in the diagnosis of prostate cancer (PCa), particularly diffusion-weighted imaging for peripheral zone (PZ) cancer in the untreated prostate. However, there are many benign entities that demonstrate diffusion restriction in the PZ mimicking PCa resulting in diagnostic challenges. Fortunately, these benign entities usually have unique MR features that may help to distinguish them from PCa. The purpose of this pictorial review is to discuss benign entities with diffusion restriction in the PZ and to emphasize the key MR features of these entities that may help to differentiate them from PCa.
Assuntos
Imageamento por Ressonância Magnética/métodos , Doenças Prostáticas/diagnóstico por imagem , Doenças Prostáticas/patologia , Diagnóstico Diferencial , Imagem de Difusão por Ressonância Magnética , Humanos , Biópsia Guiada por Imagem , MasculinoRESUMO
Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place. Hence, there are major gaps in our understanding of firstly, where and how care work undertaken by family members within domestic settings takes place; and secondly, how it can create tensions between home and care that fundamentally disrupt the physical and socio-emotional meaning of home for family carers, impacting on their sense of home post-death. This can have consequences for their own well-being. In this paper we draw on interview data from our 'Unpacking the Home' study to elicit an in-depth understanding of how facilitating a home death can create an ambiguity of place for family carers, where the issues faced by them in caring for a dying older person at home, and the home death itself, can fundamentally reshape the meaning and sense of home.
Assuntos
Atitude Frente a Morte , Cuidadores/psicologia , Habitação , Idoso , Inglaterra , Feminino , Política de Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Preferência do Paciente , Inquéritos e QuestionáriosRESUMO
Biochemical recurrence after treatment for prostate cancer (PCa) is a significant issue. Early diagnosis of local recurrence is important for making prompt treatment decisions and is strongly associated with patient prognosis. Without salvage therapy, the average time from development of local recurrence to distant metastasis is approximately 3 years. Biochemical recurrence does not differentiate local recurrence from systemic disease; there is no reliable way to clinically diagnose local recurrence. Recent advances in multiparametric MRI (mp-MRI) techniques have markedly improved detection of local recurrence following therapy. However, a wide variety of entities can mimic recurrent PCa at mp-MRI. Therefore, the purpose of this pictorial review is to discuss the MRI findings of locally recurrent PCa and its mimics, emphasizing the key MRI features that help to differentiate local recurrence from its mimics.
Assuntos
Imageamento por Ressonância Magnética , Recidiva Local de Neoplasia/diagnóstico , Próstata/patologia , Neoplasias da Próstata/diagnóstico , Diagnóstico Diferencial , Humanos , MasculinoRESUMO
OBJECTIVE: The objective of our study was to assess the frequency, cause, and time course of dysphagia after anterior cervical fusion (ACF). MATERIALS AND METHODS: A review of the surgical database revealed that 1789 patients underwent ACF procedures during the 8-year study period. A radiologic database review indicated that 80 of the 1789 patients underwent radiologic evaluation for the assessment of dysphagia after ACF. Three patients were excluded from the study because they had a history of dysphagia before ACF, and three additional patients were excluded because they had more recently undergone Nissen fundoplication, intubation, and radiation therapy, respectively. Modified barium swallow (MBS) studies and esophagrams of the 74 remaining patients were collected and analyzed to determine the cause of dysphagia and time course of dysphagia onset after surgery. RESULTS: Dysphagia was evaluated radiologically in 74 of the 1789 ACF patients (4.1%) using video MBS studies (n=66) and esophagography (n=26). Patients underwent radiologic evaluation from 1 to 1150 days after surgery (mean, 120 days after surgery); 76% of the patients presented more than 2 weeks after surgery. The location of the ACF in the study group was the upper, mid, and lower cervical spine in 5.4% (n=4), 55.4% (n=41), and 39.2% (n=29) of patients, respectively. Soft-tissue swelling with displacement of the pharynx or esophagus was identified in 91% of patients (n=67). More serious complications of ACF that resulted in dysphagia included surgical hardware displacement or bone graft displacement (n=18), esophageal perforation (n=3), and a retropharyngeal abscess (n=3). Pharyngeal functional abnormalities were detected in 50 patients, with penetration, aspiration, or both seen in 32. CONCLUSION: Dysphagia is an underrecognized but significant complication of ACF. After ACF, 4.1% of patients presented for radiologic evaluation of dysphagia. Although ACF procedures are most frequently performed in the lower cervical spine, dysphagia is a more common clinical problem after ACF in the mid cervical spine. Radiologic examinations should be specifically tailored to evaluate ACF patients.
Assuntos
Vértebras Cervicais/cirurgia , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Diagnóstico por Imagem , Complicações Pós-Operatórias/diagnóstico , Complicações Pós-Operatórias/etiologia , Fusão Vertebral/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Transplante Ósseo/efeitos adversos , Esôfago/lesões , Feminino , Migração de Corpo Estranho/complicações , Humanos , Fixadores Internos/efeitos adversos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Fusão Vertebral/instrumentaçãoRESUMO
BACKGROUND: This study is based on people dying at home relying on the care of unpaid family carers. There is growing recognition of the central role that family carers play and the burdens that they bear, but knowledge gaps remain around how to best support them. AIM: The aim of this study is to review the literature relating to the perspectives of family carers providing support to a person dying at home. DESIGN: A narrative literature review was chosen to provide an overview and synthesis of findings. The following search terms were used: caregiver, carer, 'terminal care', 'supportive care', 'end of life care', 'palliative care', 'domiciliary care' AND home AND death OR dying. DATA SOURCES: During April-May 2013, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Pubmed, Cochrane Reviews and Citation Indexes were searched. Inclusion criteria were as follows: English language, empirical studies and literature reviews, adult carers, perspectives of family carers, articles focusing on family carers providing end-of-life care in the home and those published between 2000 and 2013. RESULTS: A total of 28 studies were included. The overarching themes were family carers' views on the impact of the home as a setting for end-of-life care, support that made a home death possible, family carer's views on deficits and gaps in support and transformations to the social and emotional space of the home. CONCLUSION: Many studies focus on the support needs of people caring for a dying family member at home, but few studies have considered how the home space is affected. Given the increasing tendency for home deaths, greater understanding of the interplay of factors affecting family carers may help improve community services.
Assuntos
Cuidadores/psicologia , Assistência Domiciliar/psicologia , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Família/psicologia , HumanosRESUMO
Dysphagia is a common clinical problem whose prevalence is increasing with the aging population in the United States. The term dysphagia is commonly used to describe subjective awareness of swallowing difficulty during the passage of a bolus from the mouth to the stomach or the perception of obstruction during swallowing. Dysphagia may be further classified as oropharyngeal or substernal, depending on the location of this sensation. It can be due to benign or malignant structural lesions, esophageal motility abnormalities, oropharyngeal dysfunction (including aspiration), neuromuscular disorders, or postsurgical changes and is also associated with gastroesophageal reflux disease. Pathologic conditions of the oral cavity, pharynx, esophagus, and proximal stomach can manifest with dysphagia. Imaging remains the preferred method for evaluating patients with dysphagia, and dysphagia is an increasingly encountered indication for radiologic evaluation. Fluoroscopic studies, including the modified barium swallow and esophagography in particular, are often used in the assessment of patients with dysphagia, and the techniques used for these studies should be tailored to the patient's needs. Fluoroscopic studies can be used to evaluate the esophagus for structural abnormalities (eg, webs, diverticula, strictures, masses) and to assess function (eg, the swallowing mechanism and esophageal motility). Knowledge of the imaging spectrum of disease entities that may cause dysphagia and thorough radiologic assessment with a tailored approach may help avoid misdiagnosis.
Assuntos
Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Diagnóstico por Imagem , Meios de Contraste , Transtornos de Deglutição/fisiopatologia , Diagnóstico Diferencial , HumanosRESUMO
AIMS AND OBJECTIVES: The involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures. METHODS: In this qualitative exploratory study, semistructured interviews were undertaken with individuals who had a cancer diagnosis and were involved in a supportive and palliative care research collaborative over a period of 6â years. Recruitment was through the host university organisations involved in the research collaborative. A thematic analysis was undertaken to identify commonalities and differences across their experiences. FINDINGS: The eight participants in the study were highly motivated and undertook PPI in research alongside other voluntary activities. They identified a number of research and personal benefits: bringing a lay perspective into research, making a difference and personal gains. Personal gains concerned support, new knowledge and skills and greater confidence. The challenges to participation that were identified included the emotional and practical nature of the work, issues of language and identifying the difference made. CONCLUSIONS: Involvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation.
Assuntos
Pesquisa Biomédica/métodos , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Participação do Paciente/psicologia , Idoso , Idoso de 80 Anos ou mais , Comunicação , Participação da Comunidade/psicologia , Comportamento Cooperativo , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
OBJECTIVE: To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England. DESIGN: Qualitative study. SETTING: Domestic homes in two contrasting areas in England. PARTICIPANTS: 59 bereaved family carers who have delivered care to a patient who spent a minimum of 2 weeks at home prior to their death from cancer or other non-malignant condition. Cases were excluded if the place of death was: a hospice, nursing home or National Health Service (NHS) hospital. RESULTS: Participants identified a number of important concerns about managing end of life medication for the dying person at home. Although some support with medications is provided by general practitioners and nurses in the community, family carers take primary responsibility for drug administration and storage. They reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular, they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance increasing analgesia requirements, and the use of a syringe driver was associated with deterioration and approaching death. Key barriers to managing end of life medications at home included: complex regimes; unwanted responsibility in deciding when to use 'as needed' medication; disagreements with professional staff, and anxiety about medication errors, especially if perceived to have implications for survival. CONCLUSIONS: Family carers require more information about end of life drugs and their effects, support and training in managing medication for a dying person.
Assuntos
Cuidadores/psicologia , Assistência Domiciliar/métodos , Cuidados Paliativos/métodos , Assistência Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Luto , Feminino , Humanos , Masculino , Erros de Medicação , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND: Dying at home is the preference of many patients with life-limiting illness. This is often not achieved and a key factor is the availability of willing and able family carers. AIM: To elicit family carers' views about the community support that made death at home possible. DESIGN AND SETTING: Qualitative study in East Devon, North Lancashire, and Cumbria. METHOD: Participants were bereaved family carers who had provided care at the end of life for patients dying at home. Semi-structured interviews were conducted 6-24 months after the death. RESULTS: Fifty-nine bereaved family carers were interviewed (54% response rate; 69% female). Two-thirds of the patients died from cancer with median time of home care being 5 months and for non-cancer patients the median time for home care was 30 months. An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control. CONCLUSION: The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.