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1.
Enferm. intensiva (Ed. impr.) ; 30(4): 163-169, oct.-dic. 2019. tab
Artigo em Espanhol | IBECS | ID: ibc-184480

RESUMO

La muerte de un niño en la Unidad de Cuidado Intensivo Pediátrico (UCIP) es difícil, la pérdida genera sentimientos de tristeza y dolor; en este estudio se destacan las diferentes estrategias de afrontamiento utilizadas por las enfermeras para manejar esta situación y poder fortalecerse para brindar cuidado al final de la vida. Objetivo Explorar las estrategias de afrontamiento utilizadas por las enfermeras en la UCIP frente a la muerte. Métodos: Estudio realizado en la ciudad de Manizales, Colombia, durante los meses de octubre, noviembre y diciembre. Se utilizó un enfoque cualitativo, fenomenológico hermenéutico. El método de muestreo fue intencional para la selección de las enfermeras participantes (n = 10) que trabajan en la UCIP; se realizaron entrevistas en profundidad para la construcción de la información y los datos se analizaron según los procedimientos propuestos por Cohen, Kahn y Steeves. Resultados: Las enfermeras utilizan estrategias de afrontamiento centradas en las emociones: inhiben los sentimientos frente al paciente y la familia, usan la comunicación y oración con el paciente, así como el acompañamiento para aliviar el sufrimiento de la familia. Conclusión: Las enfermeras de la UCIP desarrollan estrategias de afrontamiento frente a los cuidados al final de la vida utilizando recursos espirituales y de comunicación con la familia que necesita apoyo permanente, reflexionando ante la muerte y el acompañamiento del niño en su trascendencia


The death of a child in the Paediatric Intensive Care Unit (PICU) is difficult, the loss generates feelings of sadness and pain; this study highlights the different coping strategies used by nurses to manage this situation and find the strength to provide care at the end of life. Objective: Explore the strategies used by nurses in the PICU in coping with death. Methods: Study conducted in the city of Manizales, Colombia, during the months of October, November and December. A qualitative, hermeneutical phenomenological approach was used. The method of intentional sampling for the selection of participating nurses (n = 10) working in PICU, in-depth interviews were conducted for the construction of the information and the data were analyzed according to the procedures proposed by Cohen, Kahn and Steeves. Results: Nurses use coping strategies focused on emotions: they inhibit their feelings towards the patient and their family; they use communication and prayer with the patient, as well as accompaniment to alleviate the suffering of the family. Conclusion: UCIP nurses develop coping strategies for end-of-life care using spiritual resources and communication with the family who require ongoing support, reflecting on death and accompanying the child in its transcendence


Assuntos
Humanos , Criança , Unidades de Terapia Intensiva Pediátrica , Adaptação Psicológica/fisiologia , Cuidados Críticos/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Comunicação
2.
Artigo em Inglês | MEDLINE | ID: mdl-31443267

RESUMO

Background: The work continuity of physicians in hospice and palliative medicine (HPM) has a great impact on the quality of care and practice experiences. However, nationwide studies providing a general overview of the work continuity of HPM physicians are scarce. Methods: Data relating to inpatient HPM care provided from July 2000 to December 2013 were obtained from the National Health Insurance Research Database of Taiwan. Specifically, the numbers of hospitals, patients, patient hospitalization days, and physicians involving HPM in each year were calculated. The years of HPM work experience and total HPM workdays of each physician were also computed. Results: Of the 40,965,153 inpatient records during the study, 121,258 (0.3%) records were related to inpatient HPM care, with 60 participating hospitals and 604 attending physicians. The annual number of HPM physicians increased with time from 77 in 2000 to 217 in 2013. The largest percentage (38.4%) of physicians practiced HPM for only one year, while only 23 (3.8%) physicians practiced HPM in each year without interruption. Of the 217 HPM physicians in 2013, 45 (20.7%) were newcomers, 78 (36.0%) had 1-4 years of prior HPM work experience, 54 (24.9%) had 5-9 years, and 40 (18.4%) had at least 10 years. Conclusions: Among HPM physicians in Taiwan, only a small percentage exhibited long-term dedication to the field, whereas most HPM physicians had short practice periods. More strategies are needed to improve work continuity among HPM physicians.


Assuntos
Atitude do Pessoal de Saúde , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/tendências , Pacientes Internados/psicologia , Cuidados Paliativos/psicologia , Cuidados Paliativos/tendências , Médicos/psicologia , Adulto , Feminino , Previsões , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Taiwan
3.
Prim Care ; 46(3): 287-302, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31375182

RESUMO

Palliative care is a field of medicine that delivers patient-centered care for individuals and their families suffering from serious illness at all stages of the disease trajectory. It addresses the major priorities of relieving suffering, establishing goals of care, and managing physical symptoms while integrating the psychosocial, cultural, spiritual, and existential complexities of coping with chronic illness. This article discusses the role of palliative care in the health care system. It reviews the importance of prognostication, disease trajectory, and communication. The role of the primary care physician as part of a multidisciplinary team member delivering primary palliative care is emphasized.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos/métodos , Atenção Primária à Saúde/organização & administração , Comunicação , Continuidade da Assistência ao Paciente/organização & administração , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Comunicação Interdisciplinar , Cuidados Paliativos/psicologia , Equipe de Assistência ao Paciente/organização & administração , Assistência Centrada no Paciente/organização & administração , Qualidade de Vida , Revelação da Verdade
4.
Prim Care ; 46(3): 303-317, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31375183

RESUMO

Hospice is a model of care that offers significant benefits to patients at the end of their lives, their families, and also to the primary care physicians who have diligently cared for their patients. As comprehensive care physicians, primary care physicians can benefit from a strong understanding of hospice and the Medicare Hospice Benefit. This article describes the history of hospice, palliative care versus hospice care, clinical appropriateness of the hospice patient, the regulatory guidelines of the Medicare Hospice Benefit, hospice reimbursement, primary care reimbursement, and employment opportunities in hospice.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/métodos , Médicos de Atenção Primária , Atenção Primária à Saúde/organização & administração , Comunicação , Continuidade da Assistência ao Paciente/organização & administração , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Reembolso de Seguro de Saúde , Comunicação Interdisciplinar , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Equipe de Assistência ao Paciente/organização & administração , Assistência Centrada no Paciente/organização & administração , Prognóstico , Qualidade de Vida , Encaminhamento e Consulta/organização & administração , Encaminhamento e Consulta/estatística & dados numéricos , Fatores de Tempo , Revelação da Verdade
5.
Pediatr Int ; 61(7): 658-663, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31102485

RESUMO

BACKGROUND: A child's death affects not only family members but also the health-care professionals involved in patient care. The education system for bereavement care in Japan, however, is not set up in a systematic way, and the care provided is based on the individual experience of the health-care professional. The aim of this study was to investigate pediatrician awareness of and actual circumstances involved in bereavement care in Japan. METHODS: A qualitative descriptive study was conducted at four facilities in Japan. Data collected using semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis. RESULTS: Pediatrician recognition of the elements of bereavement care was categorized as follows: (i) developing relationships with families before a child's death is important in bereavement care; (ii) after the child dies, family involvement is left to the doctor's discretion; (iii) coping with a child's death myself through past experience is essential; (iv) doctors involved in a child's death also experience mental burden; and (v) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (i) attention must be given to the emotions of the families who lost a child; and (ii) doctor involvement with bereaved families depends on doctor awareness and expertise. CONCLUSION: Japanese pediatricians provided bereavement care to families who lost their children in a non-systematic manner. This is necessitates improvement of the self-care of health-care professionals with regard to grief by improving bereavement care-related education. Additionally, health-care professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care to families who lose a child.


Assuntos
Atitude do Pessoal de Saúde , Luto , Competência Clínica , Cuidados Paliativos na Terminalidade da Vida/psicologia , Pediatras/psicologia , Padrões de Prática Médica , Relações Profissional-Família , Adulto , Conscientização , Criança , Família/psicologia , Feminino , Cuidados Paliativos na Terminalidade da Vida/normas , Humanos , Entrevistas como Assunto , Japão , Masculino , Pessoa de Meia-Idade , Pediatras/educação , Pediatras/normas , Pediatria/educação , Pediatria/normas , Padrões de Prática Médica/normas , Pesquisa Qualitativa
7.
Medicine (Baltimore) ; 98(16): e15230, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31008953

RESUMO

Access to hospice care is widely provided in Western countries, but the supply of such service is still in its initiative stage in China. As relatives are often involved in end-of-life decision making in China, a better understanding of their cognitions toward hospice care would help policy makers and physicians to overcome the barriers of providing such service. Thus, we conducted the study to assess the level of knowledge and attitudes among Chinese outpatients and family members regarding hospice care.A cross-sectional study was conducted in Peking University Third Hospital and Peking University Shougang Hospital. Trained interviewers recruited outpatients or family members in two hospitals as a convenience sample to complete an anonymous face-to-face survey on demographic information, knowledge, and attitudes regarding hospice care.A total of 550 respondents completed this survey. Only 107 (19.5%) reported that they had known or heard of hospice care, with a mean knowledge score of 2.8 (standard deviation = 1.6). Of the respondents, 69.5% answered "strongly agree" or "agree" regarding the importance of providing hospice care in China. Participants who had known of hospice care were more likely to have favorite attitudes toward it.The awareness rate of hospice care is low in the study, which may lead to poor attitude and low enrollment rate. Considering the increasing evidence to support the improved outcomes of patients and family members associated with hospice care, the public education on its scope of services, benefits, and limitations is needed in China.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos na Terminalidade da Vida/psicologia , Adulto , China , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais/estatística & dados numéricos , Adulto Jovem
8.
BMC Palliat Care ; 18(1): 39, 2019 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-31027498

RESUMO

BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. METHODS: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3-24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. RESULTS: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. CONCLUSIONS: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/métodos , Doença dos Neurônios Motores/complicações , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/psicologia , Irlanda do Norte , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa
9.
Am J Hosp Palliat Care ; 36(9): 812-814, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30922075

RESUMO

Advanced heart failure therapies such as ventricular assist devices and home inotrope use are becoming more common. Technology advances as well as increased indications for use of such therapies is leading to a higher percentage of patients with end-stage heart failure receiving these therapies at end of life. We present a case of a young man with dilated cardiomyopathy who undergoes advanced cardiac care in the setting of progressively declining cardiac function. Our case outlines the importance of acute care, palliative care, and hospice services being coordinated prior to and during acute-care services to provide goal-concordant and expeditious care. With advancing medical therapies for heart disease, increased coordination and collaboration of services are needed, particularly between hospice and acute-care services.


Assuntos
Insuficiência Cardíaca/terapia , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Adulto , Afro-Americanos , Insuficiência Cardíaca/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Cuidados Paliativos/organização & administração , Cuidados Paliativos/psicologia , Alta do Paciente , Índice de Gravidade de Doença , Assistência Terminal/organização & administração , Assistência Terminal/psicologia
10.
Cancer ; 125(9): 1527-1535, 2019 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-30825390

RESUMO

BACKGROUND: Studies postulate that certain religious beliefs related to medical care influence the end-of-life (EOL) medical decision making and care of patients with advanced cancer. Because to the best of the authors' knowledge no current measure explicitly assesses such beliefs, in the current study the authors introduced and evaluated the Religious Beliefs in EOL Medical Care (RBEC) scale, a new measure designed to assess religious beliefs within the context of EOL cancer care. METHODS: The RBEC scale consists of 7 items designed to reflect religious beliefs in EOL medical care. Its psychometric properties were evaluated in a sample of 275 patients with advanced cancer from the Coping With Cancer II study, a National Cancer Institute-funded, multisite, longitudinal, observational study of communication processes and outcomes in EOL cancer care. RESULTS: The RBEC scale proved to be internally consistent (Cronbach α, .81), unidimensional, positively associated with other indicators of patients' religiousness and spirituality (establishing its convergent validity), and inversely associated with patients' terminal illness understanding and acceptance (establishing its criterion validity), suggesting its potential clinical usefulness in promoting informed EOL decision making. The majority of patients (87%) reported some ("somewhat," "quite a bit," or "a great deal") endorsement of at least 1 RBEC item and a majority (62%) endorsed ≥3 RBEC items. CONCLUSIONS: The RBEC scale is a reliable and valid tool with which to assess religious beliefs within the context of EOL medical care, beliefs that frequently are endorsed and inversely associated with terminal illness understanding.


Assuntos
Neoplasias/terapia , Psicometria/métodos , Religião , Assistência Terminal , Adaptação Psicológica/fisiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Tomada de Decisões , Feminino , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/normas , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/psicologia , Religião e Psicologia , Reprodutibilidade dos Testes , Espiritualidade , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/psicologia , Assistência Terminal/normas , Estados Unidos
11.
Am J Hosp Palliat Care ; 36(8): 697-704, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30871338

RESUMO

To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Comunicação , Família/psicologia , Preferência do Paciente , Assistência Terminal/psicologia , Adulto , Idoso , Atitude do Pessoal de Saúde , Tomada de Decisões , Feminino , Grupos Focais , Alemanha , Instituição de Longa Permanência para Idosos/organização & administração , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Casas de Saúde/organização & administração , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Religião , Fatores de Tempo , Confiança , Adulto Jovem
12.
Jpn J Clin Oncol ; 49(4): 361-366, 2019 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-30793175

RESUMO

BACKGROUND: The benefits of hospice palliative care (HPC) for end-of-life (EoL) patients have been widely acknowledged in recent years. There is still limited knowledge about cancer patients' willingness toward HPC. This study aimed to investigate the willingness of cancer patients to receive HPC and the influencing factors. METHODS: A cross-sectional study was conducted with cancer patients enrolled from teaching hospitals in Taiwan. The questionnaire included demographic characteristics, EoL care preferences, and scales for measuring the willingness to receive HPC, HPC knowledge, and attitude towards HPC. Data were collected by senior nurses and they were analyzed using descriptive and a regression analysis. RESULTS: A total of 148 valid questionnaires were collected. The participants indicated that they 'willing to receive' HPC (mean3.8 on a 5-point scale). The predictors for their willingness to receive HPC were knowledge about HPC (P = 0.001), positive attitude towards HPC (P = 0.008), preference for hospital death (P = 0.022), and preference for quality of life (P = 0.047) as the goal of EoL care. These factors explained 32.7% of the total variance in the willingness to receive HPC. CONCLUSIONS: Cancer patients were generally willing to receive HPC. Clinician should discuss EoL care with them earlier. Develop appropriate educational strategies that can provide cancer patients with sufficient and tailored HPC information to develop their knowledge and to create a positive attitude about HPC is necessary, thereby to allow for early HPC intervention and to fulfill the patients' need for HPC.


Assuntos
Atitude Frente a Morte , Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e Questionários , Taiwan
13.
Am J Hosp Palliat Care ; 36(7): 557-563, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30665322

RESUMO

BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Cuidados Paliativos na Terminalidade da Vida/psicologia , Narração , Cuidados Paliativos/psicologia , Fotografação , Apoio Social , Adolescente , Adulto , Criança , Pré-Escolar , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New York , Psicoterapia/métodos , Adulto Jovem
14.
Support Care Cancer ; 27(9): 3357-3364, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30623244

RESUMO

The purpose of this cross-sectional, descriptive study was to assess differences in neuropathic symptoms, physical and emotional well-being, and quality of life in cancer patients at the end of life compared to those without neuropathic symptoms. Neuropathic symptoms were defined as numbness and tingling in the hands and/or feet. A secondary analysis of data from two hospices in Central Florida was performed. Adults (n = 717) with a cancer diagnosis, an identified family caregiver, and who were receiving hospice services, were eligible. The prevalence of numbness/tingling in the hands or feet was 40% in this sample of hospice patients with cancer. Participants with neuropathic symptoms of numbness/tingling had a significantly higher prevalence of pain (76.7% vs. 67.0%; p = .006), difficulty with urination (29.4% vs. 20.3%; p = .007), shortness of breath (64.9% vs. 54.1%; p = .005), dizziness/lightheadedness (46.0% vs. 28.2%; p < .001), sweats (35.5% vs. 20.3%; p < .001), worrying (50.7% vs. 37.3%; p = .001), feeling irritable (38.5% vs. 28.7%; p = .008), feeling sad (48.2% vs. 37.8%; p = .008), and difficulty concentrating (46.2% vs. 32.5%; p < .001). They also reported significantly higher overall symptom intensity and symptom distress scores (p = < .001), higher pain severity (p = .001) and pain distress (p = .002), and decreased quality of life (p = .002) compared to those without numbness/tingling. Neuropathic symptoms are emotionally distressing at the end of life and associated with higher symptom burden and diminished quality of life.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/psicologia , Neoplasias/psicologia , Dor/psicologia , Doenças do Sistema Nervoso Periférico/fisiopatologia , Qualidade de Vida/psicologia , Idoso , Estudos Transversais , Feminino , Hospitais para Doentes Terminais , Humanos , Hipestesia/fisiopatologia , Masculino , Dor/fisiopatologia , Parestesia/fisiopatologia , Exame Físico , Prevalência
16.
BMJ Support Palliat Care ; 9(1): e14, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26647042

RESUMO

OBJECTIVES: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. METHODS: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. RESULTS: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. CONCLUSIONS: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.


Assuntos
Pesquisa Biomédica/normas , Cuidados Paliativos na Terminalidade da Vida/psicologia , Entrevistas como Assunto/normas , Cuidados Paliativos/psicologia , Pesquisadores/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Consenso , Feminino , Guias como Assunto , Serviços de Assistência Domiciliar/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Pesquisa Qualitativa , Assistência Terminal/estatística & dados numéricos
17.
J Palliat Care ; 34(1): 52-61, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30231835

RESUMO

The objective of this review was to detail the experiences of Muslim oncology patients receiving palliative and end-of-life care and identify where gaps in the providing of culturally aware care occur. We also sought to examine ways in which providers could be better educated on the needs of Muslim patients at the end-of-life and identify barriers Muslims faced when being treated with hospice and palliative care models developed for non-Muslim populations. We conducted a search in April 2018 in the National Library of Medicine and CINAHL databases using the search terms "palliative care," "Muslim," and "cancer." Included were articles with focuses on adult Muslims with palliative and end-of-life care experiences. We then followed the PRISMA guidelines for an integrative review and used a data extraction matrix to identify 20 papers that met the inclusion criteria of the review. We identified four major themes patient experiences, patient care delivery suggestions, Muslim provider experiences, and definitions of death, present in all 20 papers of the review. Each of the included papers was categorized based on the dominant theme in the paper. This review ultimately found that the care provided to Muslim patients is subpar for the standard of culturally competent care and that the needs of Muslim patients at the end-of-life, as well as the needs of their families, are not being met. Moving forward further research on this topic is needed with a particular focus on examining the experiences of terminally ill Muslim patients receiving treatment in non-Muslim majority settings.


Assuntos
Assistência à Saúde Culturalmente Competente/organização & administração , Necessidades e Demandas de Serviços de Saúde , Cuidados Paliativos na Terminalidade da Vida/psicologia , Islamismo , Neoplasias/enfermagem , Cuidados Paliativos/psicologia , Espiritualidade , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
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