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Patients with advanced chronic liver disease have a complex symptom burden and many are not candidates for curative therapy. Despite this, provision of palliative interventions remains woefully inadequate, with an insufficient evidence base being a contributory factor. Designing and conducting palliative interventional trials in advanced chronic liver disease remains challenging for a multitude of reasons. In this manuscript we review past and ongoing palliative interventional trials. We identify barriers and facilitators and offer guidance on addressing these challenges. We hope that this will reduce the inequity in palliative care provision in advanced chronic liver disease.
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People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.
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Planificación Anticipada de Atención , Fallo Renal Crónico/terapia , Trasplante de Hígado , Cuidados Paliativos , Listas de Espera , Humanos , Fallo Renal Crónico/diagnóstico , Fallo Renal Crónico/fisiopatología , Fallo Renal Crónico/psicología , Pautas de la Práctica en MedicinaRESUMEN
BACKGROUND AND AIMS: Liver health professionals have difficulty discussing liver cirrhosis and its prognosis with patients and families. Question Prompt Lists (QPLs), which are evidence-based lists of "recommended questions," may improve communication but need to be designed specifically for the target population. This study aimed to develop and pilot a QPL for patients with cirrhosis. METHODS: A mixed-methods design in 3 phases. In phase 1 (item generation), potential questions for inclusion in the QPL were identified from 3 sources-a scoping literature review; an online survey; and interviews with patients, family members, and health professionals. In phase 2 (QPL construction), a multidisciplinary expert panel finalized the selection of questions and the format of the QPL. In phase 3 (pilot study), the QPL was assessed for acceptability and feasibility in a hepatology outpatient clinic population. RESULTS: From 258 topics initially identified, 30 questions were included in the first draft of the QPL. After review by a multidisciplinary expert panel including patients, the QPL was reduced to 22 questions. In the pilot study, 133/215 eligible patients consented to participate, although only 67/133 used the QPL in their clinic appointment. Among those who used the QPL, all questions were asked at least once. The most commonly asked question related to life expectancy. Most participants expressed support for the content of the QPL. CONCLUSIONS: A QPL, suitable for use in patients with liver cirrhosis attending hepatology outpatient clinics, has been developed and piloted. The QPL seems to be feasible to use and acceptable to patients and clinicians. Further work is needed to evaluate its effectiveness and to determine optimum delivery in clinical practice.
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Pacientes Ambulatorios , Relaciones Médico-Paciente , Comunicación , Humanos , Cirrosis Hepática/terapia , Participación del Paciente , Proyectos Piloto , Derivación y Consulta , Encuestas y CuestionariosRESUMEN
BACKGROUND: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging. AIM: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations. DESIGN: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients. SETTING/PARTICIPANTS: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis. RESULTS: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as 'days', allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as 'dying' were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with 'permission' to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient's function previously discussed with the family. CONCLUSION: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.
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Familia , Cuidado Terminal , Comunicación , Muerte , Humanos , Pronóstico , IncertidumbreRESUMEN
OBJECTIVE: To understand the feasibility of recruiting people with advanced cancer into a randomised controlled trial of acceptance and commitment therapy (ACT) vs a standardised talking control (TC) and delivering ACT to this population; to explore the acceptability of outcome measures and generate normative data. METHODS: This was a feasibility two-arm randomised controlled trial. Participants were attendees with advanced cancer at one of three hospice-based day-therapy units in London, United Kingdom, who demonstrated low scores on the Functional Assessment of Cancer Therapies-General (FACT-G). The primary end point was 3 months. RESULTS: The recruitment target was 54 participants; 42 people were recruited and randomised to up to eight individual sessions of ACT (n = 20) or TC (n = 22). Eighteen out of 42 (43%) of participants completed the primary outcome at 3 months, and at least one follow-up was available in 30/42 (71%) participants. An exploratory analysis revealed a non-significant adjusted mean difference after 3 months in the main outcome FACT-G of -3.41 (CI = -18.61-11.79) with TC having better functioning. Over 6 months, the adjusted mean difference between trial arms was 2.25 (CI = -6.03-10.52) in favour of ACT. CONCLUSIONS: It is feasible to recruit people with advanced cancer in a trial of ACT versus TC. Future research should test the effectiveness of ACT in a fully powered trial.
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Terapia de Aceptación y Compromiso/métodos , Neoplasias/psicología , Cooperación del Paciente/psicología , Adulto , Análisis Costo-Beneficio , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Evaluación de Resultado en la Atención de Salud , Satisfacción del Paciente , Reino UnidoRESUMEN
BACKGROUND: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished. AIM: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life. DESIGN: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. DATA SOURCES: An electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed. RESULTS: Thirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care. CONCLUSION: Findings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals.
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Comunicación , Personal de Salud , Relaciones Profesional-Familia , Cuidado Terminal , Humanos , Investigación CualitativaRESUMEN
BACKGROUND & AIMS: People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be based on evidence from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on delivery of care and improving palliative care between specialities. METHODS: A literature search was conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18â¯years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified. RESULTS: Nineteen research studies predominantly from high-income Western countries were identified, with a total sample consisting of 1,413 patients, 31 family carers and 733 health professionals. Patients and family members had limited understanding of cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services. CONCLUSIONS: Health professionals need support to improve their communication with patients, to address patients' broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and exploring robust ways of evaluating supportive care interventions, with more studies needed from middle- and low-income countries. Registration number: PROSPERO CRD42017064770. LAY SUMMARY: Patients and their families had a poor understanding of advanced liver disease and its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver specialists and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role in improving patient care.
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Familia/psicología , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Cirrosis Hepática/terapia , Cuidados Paliativos , Adulto , Anciano , Atención a la Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Investigación Cualitativa , Garantía de la Calidad de Atención de Salud , Calidad de la Atención de SaludRESUMEN
BACKGROUND: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. AIM: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. DESIGN: Thematic analysis of data collected using focus groups and interviews. PARTICIPANTS: Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). RESULTS: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. CONCLUSION: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.
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Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Enfermería de Cuidados Paliativos al Final de la Vida/organización & administración , Personas con Mala Vivienda/estadística & datos numéricos , Cuidados Paliativos/organización & administración , Cuidado Terminal/organización & administración , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Enfermería de Cuidados Paliativos al Final de la Vida/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos/estadística & datos numéricos , Cuidado Terminal/estadística & datos numéricos , Reino UnidoRESUMEN
OBJECTIVES: People with cirrhosis are encouraged to participate in shared decision-making with their doctors, but studies suggest that doctors limit the amount of information that is shared. In this study we explore the presence of medical power in clinical encounters in 2015 from a patient perspective and highlight its effects on healthcare interactions. METHODS: Qualitative semi-structured interviews were conducted with ten people with cirrhosis attending a tertiary liver transplant centre in southern England. We explored their understanding of their disease and prognosis, and their participation in decision-making. Using the lens of medical power as a framework, we analysed findings into thematic sentences to summarise key ideas whilst preserving the complexity of identified concepts. RESULTS: Three key concepts explained patient perspectives of their communication with doctors: (1) portraying a positive image to doctors, (2) avoiding confrontation with doctors, (3) feeling powerless in the face of doctors' medical knowledge. These concepts show deeper dynamic issues of power during healthcare encounters, illustrated by participants' reluctance to voice their concerns and express themselves, challenge decisions, or seek information. CONCLUSION: People with cirrhosis struggle to articulate their concerns or challenge decisions on their care and treatment and may worry about potential consequences. Our findings demonstrate the continuing persistence of issues of power at play in contemporary health care.
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Comunicación , Toma de Decisiones , Humanos , Actitud del Personal de Salud , Inglaterra , Investigación CualitativaRESUMEN
Background: Many liver patients have unmet palliative care needs, but liver clinicians are unclear whom to refer to specialist palliative care (SPC). The Supportive and Palliative Care Indicator Tool (SPICT) and the Bristol Prognostic Screening Tool (BPST) could help identify suitable patients, but neither has been tested for this role. This study evaluated their role as screening tools for palliative care needs and for predicting 12-month mortality. Methods: A case note review of hepatology in-patients, who were not peritransplant and post-transplant status, was conducted in one tertiary unit. Main outcomes were clinical judgement of need for SPC referral, BPST scores, SPICT attribution of caseness and 12-month survival status. Discriminatory ability of tools was assessed using sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV) and area under the receiver operating characteristic (AUROC) curve. Results: 117 medical notes were reviewed for survival analysis, 47 of which were additionally assessed for suitability for SPC referral, using clinical judgement. SPICT (sensitivity=93%; PPV=93%; AUROC=0.933) and BPST (sensitivity=59%, PPV=79%, AUROC=0.693) demonstrated excellent and good performance, respectively, in predicting patients' need for SPC referral. SPICT and BPST only had moderate ability at predicting death at 12 months (PPV: 54% and 56%, respectively). Conclusion: SPICT and BPST show potential as screening tools for identifying patients for referral to SPC. Further work is needed to determine how to implement these tools in a clinical setting.
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OBJECTIVE: To examine transitions out of prognostic talk in interactions between clinicians and the relatives and friends of imminently dying hospice patients. METHODS: Conversation analysis of 20 conversations between specialist palliative care clinicians and the families of imminently dying patients in a hospice. RESULTS: Following the provision and acknowledgement of a prognostic estimate, clinicians were able to transition gradually towards making assurances about actions that could be taken to ensure patient comfort. When families raised concerns or questions, this transition sequence was extended. Clinicians addressed these questions or concerns and then pivoted to action-oriented talk, most often relating to patient comfort. CONCLUSION: In conversations at the end of life, families and clinicians used practices to transition from the uncertainty of prognosis to more certain, controllable topics including comfort care. PRACTICE IMPLICATIONS: In a context in which there is a great deal of uncertainty, transitioning towards talk on comfort care can emphasise action and the continued care of the patient and their family.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Cuidado Terminal , Comunicación , Muerte , Humanos , Cuidados Paliativos , PronósticoRESUMEN
Background: Patients with advanced kidney disease have a symptomatic and psychological burden which warrant renal supportive care or palliative care. However, the impact of do-not-resuscitate consent type (signed by patients or surrogates) on end-of-life treatments in these patients remains unclear. Objective: We aim to identify influential factors correlated with different do-not-resuscitate consent types in patients with advanced kidney disease and the impact of do-not-resuscitate consent types on various life-prolonging treatments. Methods: This was a retrospective observational study. We included patients aged 20 years and over, diagnosed with advanced kidney disease and receiving palliative and hospice care consultation services between January 2014 and December 2018 in a tertiary teaching hospital in Taiwan. We reviewed medical records and used logistic regression to identify factors associated with do-not-resuscitate consent types and end-of-life treatments. Results: A total of 275 patients were included, in which 21% signed their do-not-resuscitate consents. A total of 233 patients were followed until death, and 32% of the decedents continued hemodialysis, 75% underwent nasogastric (NG) tube placement, and 70% took antibiotics in their final seven days of life. Do-not-resuscitate consents signed by patients were associated with reduced life-prolonging treatments including feeding tube placement and antibiotic use in the last seven days (odd ratio and 95% confidence interval were 0.16, 0.07-0.34 and 0.33, 0.16-0.69, respectively) compared to do-not-resuscitate consents signed by surrogates. Conclusions: Do-not-resuscitate consent signed by patients and not by surrogates may reflect better patients' autonomy and reduced life-prolonging treatments in the final seven days of patients with advanced kidney disease.
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Cuidados Paliativos al Final de la Vida , Enfermedades Renales , Cuidado Terminal , Humanos , Consentimiento Informado , Órdenes de Resucitación , Estudios RetrospectivosRESUMEN
BACKGROUND: Short and valid measures of the impact of a stroke on integration are required in health and social settings. The Subjective Index of Physical and Social Outcome (SIPSO) is one such measure. However, there are questions whether scores can be summed into a total score or whether subscale scores should be calculated. This paper aims to provide clarity on the internal construct validity of the subscales and the total scale. METHODS: SIPSO data were collected as part of two parallel surveys of the met and unmet needs of 445 younger people (aged 18-65) with non-recent stroke (at least one year) and living at home. Factor, Mokken and Rasch analysis were used. RESULTS: Factor analysis supported a two factor structure (explaining 68% of the variance) as did the Mokken analysis (overall Loevinger coefficient 0.77 for the Physical Integration subscale; 0.51 for the Social Integration subscale). Both subscales fitted the Rasch model (P > 0.01) after adjusting for some observed differential item functioning. The 10-items together did not fit the Rasch model. CONCLUSIONS: The SIPSO subscales are valid for use with stroke patients of working age but the total SIPSO is not. The conversion table can be used by clinicians and researchers to convert ordinal data to interval level prior to mathematical operations and other parametric procedures. Further work is required to explore the occurrence of bias by gender for some of the items.
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Evaluación de Resultado en la Atención de Salud , Aptitud Física/psicología , Psicometría/métodos , Ajuste Social , Accidente Cerebrovascular/psicología , Adolescente , Adulto , Anciano , Análisis Factorial , Femenino , Encuestas Epidemiológicas , Humanos , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Modelos Estadísticos , Reproducibilidad de los Resultados , Adulto JovenRESUMEN
BACKGROUND: Primary brain tumours newly affect >260 000 people each year worldwide. In the UK, every year >10 000 people are diagnosed with a brain tumour while >5000 die annually from the disease. Prognoses are poor, cognitive deterioration common and patients have prolonged palliative needs. Advance care planning (ACP) may enable early discussion of future care decisions. Although a core commitment in the UK healthcare strategy, and the shared responsibility of clinical teams, ACP appears uncommon in practice. Evidence around ACP practice in neuro-oncology is limited. OBJECTIVES: We aimed to elicit key social and structural conditions contributing to the avoidance of ACP in neuro-oncology. DESIGN: A cross-sectional qualitative study design was used. SETTING: One tertiary care hospital in the UK. PARTICIPANTS: Fifteen healthcare professionals working in neuro-oncology participated in this study, including neuro-oncologists, neurosurgeons, clinical nurse specialists, allied healthcare professionals and a neurologist. METHOD: Semi-structured interviews were conducted with participants to explore their assumptions and experiences of ACP. Data were analysed thematically using the well-established framework method. RESULTS: Participants recognised the importance of ACP but few had ever completed formal ACP documentation. We identified eight key factors, which we suggest comprise three main conditions for avoidance: (1) difficulties being a highly emotive, time-intensive practice requiring the right 'window of opportunity' and (2) presence and availability of others; (3) ambiguities in ACP definition, purpose and practice. Combined, these created a 'culture of shared avoidance'. CONCLUSION: In busy clinical environments, 'shared responsibility' is interpreted as 'others' responsibility' laying the basis for a culture of avoidance. To address this, we suggest a 'generalists and specialists' model of ACP, wherein healthcare professionals undertake particular responsibilities. Healthcare professionals are already adopting this model informally, but without formalised structure it is likely to fail given a tendency for people to assume a generalist role.
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Planificación Anticipada de Atención , Actitud del Personal de Salud , Neoplasias Encefálicas , Personal de Salud , Cuidados Paliativos , Rol Profesional , Cuidado Terminal , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neurólogos , Enfermeras Clínicas , Oncólogos , Investigación Cualitativa , Encuestas y Cuestionarios , Reino UnidoRESUMEN
OBJECTIVE: To identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care. DESIGN: Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews. SETTING: A tertiary referral liver centre in the south of England (UK). PARTICIPANTS: Purposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver centre and died during an 18-month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews. PRIMARY AND SECONDARY OUTCOMES: Data collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care. RESULTS: Participants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver function is reversible, poor understanding of the potential of a palliative approach; palliative care was perceived negatively by patients and families. CONCLUSIONS: People dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to identify the point of irreversible deterioration and joint working between liver services and palliative care may improve care for people with cirrhosis.
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Competencia Clínica , Conocimientos, Actitudes y Práctica en Salud , Cirrosis Hepática/terapia , Cuidados Paliativos/métodos , Especialización/normas , Adulto , Anciano , Enfermedad Crónica , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Londres , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Calidad de la Atención de Salud/organización & administración , Centros de Atención TerciariaRESUMEN
OBJECTIVES: To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care SETTING: Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. PARTICIPANTS: People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). METHODS: In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. RESULTS: 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. CONCLUSIONS: This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.
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Actitud del Personal de Salud , Actitud Frente a la Muerte , Personas con Mala Vivienda , Cuidados Paliativos/psicología , Aceptación de la Atención de Salud , Comunicación , Femenino , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Entrevistas como Asunto , Londres , Masculino , Cuidados Paliativos/organización & administración , Investigación Cualitativa , Calidad de Vida , Servicio SocialRESUMEN
BACKGROUND: One-third of people with cancer experience psychological distress and may suppress distressing thoughts, emotions, and concerns, leading to further problems. Conventional psychological treatments reduce distress by problem solving, but in advanced cancer, when ill health is progressive and death may be approaching, physical and psychological difficulties are complex and have no simple solutions. Acceptance and Commitment Therapy encourages acknowledgement and acceptance of mental experiences, increasing people's ability to work with problems that cannot be solved. Previous pilot work in advanced cancer confirms that distress can be associated with an avoidance of experiencing uncomfortable thoughts and emotions. METHODS/DESIGN: This feasibility randomised controlled trial of Acceptance Commitment Therapy aims to establish parameters for a larger trial. Fifty-four participants with advanced cancer will be randomly allocated to up to eight sessions (each 1 hour) of Acceptance Commitment Therapy or a talking control. Participants will be recruited from those attending outpatient services and hospice day care at three specialist palliative care units in North and East London, United Kingdom. The primary outcome is a measure of functioning in four areas of life (physical, social/family, emotional, and general activity) using the Functional Assessment of Cancer Therapies--General questionnaire at 3 months after randomisation. Secondary outcomes are (i) acceptance using the Acceptance and Action Questionnaire; (ii) psychological distress using the Kessler Psychological Distress Scale; (iii) physical functioning using a timed walk and sit-to-stand test; and (iv) quality of life measures including the Euroqol-5 Dimensions and ICECAP Supportive Care measures. Qualitative data will be collected at 3 months to explore the participants' experiences of the trial and therapy. Data will be collected on the costs of care. DISCUSSION: Data generated on the recruitment, retention, and experience of the interventions and the usefulness of the outcome measures will inform the adaptations required and whether changes in function are consistent with existing data when planning for a sufficiently powered randomised controlled trial. TRIAL REGISTRATION: ISRCTN13841211 (registered 22 July 2015).
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Terapia de Aceptación y Compromiso , Protocolos Clínicos , Neoplasias/terapia , Adulto , Interpretación Estadística de Datos , Humanos , Neoplasias/psicología , Selección de PacienteRESUMEN
OBJECTIVE: To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research. DESIGN: An on-line questionnaire survey with closed and open responses. SETTING: HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK. RESULTS: Of the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research. CONCLUSIONS: All who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation.
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Studies on stroke subjects that aim to improve their well-being or community support have not been shown to be effective when measures of disability and handicap have been employed. This paper illustrates the usefulness of the Subjective Index of Physical and Social Outcome (SIPSO) with young adults following a stroke. The study comprised a cross-sectional survey of people (57% male; 39% female; median age 55.7) with a stroke (1-10 years ago), aged 18-65, recruited via NHS stroke registers and young stroke groups (response rate 53%). The SIPSO was incorporated into a postal needs-assessment questionnaire. Median SIPSO score: 24.5 (IQR 17-32). The SIPSO internal reliability: ICC 0.91 (95% CI, 0.90-0.92), item to total SIPSO correlations ranged from 0.52-0.83. The SIPSO construct validity was good: those with poorer employment, mobility and sex-life outcomes had lower SIPSO scores than those with better outcomes; there was no association between age and SIPSO scores, SIPSO scores were not significantly different for men and women. Test-retest reliability was good. The SIPSO had excellent reliability and validity properties in his population. Further work on its responsiveness needs to be carried out. The measurement of personal experience of integration can be a vital basis for effective clinical care.