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2.
Support Care Cancer ; 28(1): 141-153, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30993452

RESUMO

PURPOSE: Head-to-head comparison of reliability, validity and responsiveness of four patient-reported outcome measures (PROMS) suitable for assessing health-related quality of life (HRQOL) in palliative care settings: EORTC QLQ-C15-PAL, FACT-G7, FACIT-Pal and short-form FACIT-Pal-14. METHODS: Secondary analysis of two phase III randomised trials: ketamine for chronic cancer pain, octreotide for vomiting in inoperable malignant bowel obstruction. Sub-groups were defined by Australia-modified Karnofsky performance status (AKPS) and participants' global impression of change (GIC). Two aspects of reliability were assessed: internal consistency (Cronbach alpha, α); test-retest reliability (intra-class correlation coefficient (ICC)) of patients with stable AKPS and those who self-reported 'no change' on GIC. Construct validity was assessed via pre-determined hypotheses about sensitivity of PROM scores to AKPS groups and responsiveness of PROM change scores to GIC groups using analysis of variance. RESULTS: FACIT-Pal had better internal consistency (α ranged 0.59-0.80, 15/18 ≥ 0.70) than QLQ-C15-PAL (0.51-0.85, 4/8 ≥ 0.70) and FACT-G7 (0.54-0.64, 0/2 ≥ 0.70). FACIT scales had better test-retest reliability (FACIT-Pal 11/27 ICCs ≥ 0.70, FACT-G7 2/3 ICCs ≥ 0.70) than QLQ-C15-PAL (2/30 ICCs ≥ 0.70, 18/30 ≤ 0.5). Four scales demonstrated sensitivity to AKPS: QLQ-PAL-15 Physical Functioning and Global QOL, FACT-G Functional Wellbeing and FACIT-Pal Trial Outcome Index (TOI). Nine scales demonstrated responsiveness: three in the ketamine trial population (QLQ-C15-PAL Pain, FACIT-Pal-14, FACT-G7), six in the octreotide trial population (QLQ-C15-PAL Fatigue; FACIT-Pal PalCare, TOI, Total; FACT-G Physical Wellbeing and Total). CONCLUSIONS: No PROM was clearly superior, confirming that choosing the best PROM requires careful consideration of the research goals, patient population and the domains of HRQOL targeted by the intervention being investigated.


Assuntos
Cuidados Paliativos , Medidas de Resultados Relatados pelo Paciente , Psicometria , Qualidade de Vida , Adulto , Idoso , Austrália/epidemiologia , Dor do Câncer/epidemiologia , Dor do Câncer/terapia , Dor Crônica/epidemiologia , Dor Crônica/terapia , Ensaios Clínicos Fase III como Assunto/estatística & dados numéricos , Feminino , Humanos , Avaliação de Estado de Karnofsky , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/epidemiologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Psicometria/métodos , Psicometria/normas , Ensaios Clínicos Controlados Aleatórios como Assunto/estatística & dados numéricos , Reprodutibilidade dos Testes , Autorrelato , Inquéritos e Questionários , Vômito/epidemiologia , Vômito/terapia
3.
Support Care Cancer ; 28(1): 303-308, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31044306

RESUMO

PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed. RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons). CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.


Assuntos
Atitude Frente a Morte , Serviços de Saúde da Criança , Emoções , Neoplasias , Pais/psicologia , Assistência Terminal/psicologia , Adolescente , Adulto , Comportamento , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Criança , Pré-Escolar , Feminino , Serviços de Assistência Domiciliar/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Índia/epidemiologia , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Relações Pais-Filho , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Inquéritos e Questionários , Assistência Terminal/estatística & dados numéricos
4.
Support Care Cancer ; 28(1): 381-388, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31053972

RESUMO

BACKGROUND: Music as a therapeutic tool, defined as "music care," can help manage physical and psychological symptoms in individuals with cancer. There is further need to understand interest level and the potential role of music care among health professionals working in the field of oncology. PURPOSE: To investigate knowledge of and attitudes toward the use of music as a therapeutic tool in cancer and palliative care, as well as to identify barriers associated with learning to use music in care among health professionals. METHODS: Participants (N = 204), mostly nurses working in oncology and palliative care, completed a survey to assess awareness, knowledge, and attitudes toward the use of music in healthcare practice. RESULTS: In total, 55.5% of participants reported being "somewhat or very knowledgeable" about how to apply/use music therapy for the management of symptoms or on how to make a music therapy referral or for any application of music care. Participants demonstrated a high interest level in learning how to incorporate music into practice (mean = 4.05; SD = 1.045). CONCLUSION: While there is generally high interest and perceived value among nurses in music care interventions, knowledge level about such interventions was low. The study has implications for knowledge translation and education needed to further support uptake and use of music care in nursing practice.


Assuntos
Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Musicoterapia , Neoplasias/terapia , Adulto , Estudos Transversais , Feminino , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Humanos , Masculino , Oncologia/estatística & dados numéricos , Pessoa de Meia-Idade , Música/psicologia , Neoplasias/psicologia , Enfermeiras e Enfermeiros/psicologia , Enfermeiras e Enfermeiros/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Inquéritos e Questionários , Adulto Jovem
6.
Medicine (Baltimore) ; 98(45): e17683, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31702621

RESUMO

A majority of nurses struggled with a negative emotion of anger, doubt, fear, or anxious, uncomfortable in the face of death and dying. However, little was known about community health care providers' in China. Therefore, we conducted a study to investigate their knowledge and attitudes toward end-of-life care and analyze its influencing factors. To provide reference for developing effective strategies to promote end-of-life care in China.A total of 132 community health care providers of 10 community health care centers in Changzhi city were investigated by a Questionnaire of Knowledge and Attitudes toward Caring for the Dying from May, 2017 to December, 2017, and data was analyzed by SPSS 22.0 software.Of the 132 community health care providers who were under investigation, 70 knew about hospice care, but they rated their overall content on end-of-life care as inadequacy, especially in communication skills and knowledge of pain management. The average score of attitudes was 3.47 (SD = 0.44), the lowest score was in the subscale of nurse-patient communication, which was 2.91 (SD = 0.65). Health care providers who had worked for more than 11 years, who had experiences of the death of relatives or friends, and who had previous experiences of caring for terminal patients had more positive attitudes toward caring for the dying (P < .05 for all). There was a significant relationship between community health care providers' attitudes toward death and their attitudes toward end-of-life care (r = -0.282, P < .01). The significant predictors of attitudes toward end-of-life care were attitudes toward death (ß = -0.342), experiences of the death of relatives (ß=-0.207), experiences of caring for the dying (ß = 0.185), and working experience (ß = 0.171).Community health care providers had positive attitudes toward end-of-life care, but they lacked systematic and professional knowledge and skills of caring for the terminal patients. Education is the top priority. It is imperative to set up palliative care courses and life-death education courses, establish an indigenous end-of-life care model, and improve policies, systems, and laws to promote end-of-life care.


Assuntos
Pessoal de Saúde/psicologia , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Adulto , Atitude do Pessoal de Saúde , Atitude Frente a Morte , China , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
9.
Wien Klin Wochenschr ; 131(21-22): 576-581, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31576427

RESUMO

BACKGROUND: This pilot study examined which of a patient's personal aspects should be taken into account in a hospital setting on admission to the palliative care unit (PCU) by asking patients the question "what should I know about you as a person to help me take the best care of you that I can?" METHODS: This retrospective study used qualitative methodology to thematically analyze answers from 14 patients admitted to the PCU of the Medical University of Vienna during July and August 2018. The question "what should I know about you as a person to help me take the best care of you that I can?" was asked on the day of admission, notes were taken during the interview and the patient's answers were written out immediately afterwards. Data were analyzed using NVivo 12. RESULTS: Results revealed four topics: characterization of one's personality, important activities, social bonding, and present and future concerns regarding the patient's illness. Data showed that this question enabled patients to describe themselves and what was important to them. This might result in an improved sense of self-esteem in patients and represents an opportunity for professionals to treat patients in a more individualized manner; however, patient reactions also revealed a reluctance to address certain personal issues within a medical context. CONCLUSION: The study results provide insights into the benefits of paying more attention to personal life aspects of severely ill patients on admission to a PCU. Addressing individual aspects of patients' lives might improve the healthcare professional-patient relationship.


Assuntos
Hospitalização , Cuidados Paliativos , Relações Médico-Paciente , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Cuidados Paliativos/psicologia , Satisfação do Paciente , Projetos Piloto , Estudos Retrospectivos
10.
Rev Lat Am Enfermagem ; 27: e3200, 2019 Oct 14.
Artigo em Português, Inglês, Espanhol | MEDLINE | ID: mdl-31618393

RESUMO

OBJECTIVE: to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty. METHOD: descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman's Rho correlation test was applied to detect associations. RESULTS: the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050). CONCLUSIONS: there were high levels of uncertainty in caregivers about their patient's illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos/psicologia , Incerteza , Adaptação Psicológica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/estatística & dados numéricos , Estudos Transversais , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Percepção , Fatores Socioeconômicos , Espiritualidade , Inquéritos e Questionários , Adulto Jovem
11.
Hu Li Za Zhi ; 66(5): 44-53, 2019 Oct.
Artigo em Chinês | MEDLINE | ID: mdl-31549380

RESUMO

BACKGROUND: Although the Taiwan government has subsidized the provision of palliative care at home since 2000, the utilization rate of this service has been low. PURPOSE: The purpose of this research is to explore the experiences of palliative care at home as perceived by family caregivers. METHODS: This qualitative study used semi-structured interviews to collect the data. Six family caregivers who had been providing home-based palliative care services for at least 2 weeks were invited to participate. RESULTS: Four themes related to the care experiences of the participants emerged: (1) Choosing palliative care at home for the end-of-life journey: Considering the wishes of patients and the capacities of caregivers, with hospitals providing powerful support to caregivers; (2) Facing the burdens of providing palliative care in a home setting: Determining the caring skills while feeling fear and stress, and needing to resolve this stress and achieve a respite; (3) Pursuing stable home palliative care: Relying on consultations with the professional palliative care team for information, support, and insights regarding the value of home palliative care; and (4) Fulfilling the promise of a good death at home: Preparing the patient to say goodbye and to experience a peaceful death and family members to express their sadness and adapt to a new life. CONCLUSIONS / IMPLICATIONS FOR PRACTICE: Home palliative care services help provide patients and their families convenience, intimate care, and reassurance at home. However, all caregivers must be properly trained in caring skills and the skills necessary to sustain their long-term care responsibilities. Home palliative care services have been described as the internal and external needs that patients and families require to maintain a stable quality of life and as the comfort required by the bereaved family members. The findings of this study demonstrate the value of home palliative care and of promoting home palliative care at the end of life.


Assuntos
Cuidadores/psicologia , Assistência Domiciliar/psicologia , Cuidados Paliativos/psicologia , Comportamento de Escolha , Humanos , Pesquisa Qualitativa , Taiwan
13.
BMC Palliat Care ; 18(1): 66, 2019 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-31387564

RESUMO

BACKGROUND: According to the World Health Organization, palliative care is one of the main components of healthcare. As the incidence of cancer is increasing in the world, home-based palliative care can be beneficial for many patients. This study was designed to explore health care providers' perceptions about home-based palliative care in terminally ill cancer patients. METHODS: This qualitative study was carried out using the conventional content analysis from October 2016 to September 2018 in Iran. Participants were home care providers who were selected using purposive sampling. The data were collected through 18 individual interviews, and a focus group meeting. Data were analyzed based on the method proposed by Lundman and Graneheim. RESULTS: from the data analysis, 511 initial codes were extracted, which were categorized into the two main categories of challenges and opportunities for home-based palliative care and 10 subcategories. The subcategories of challenges included deficiencies in inter-sectoral and inter-professional cooperation, lack of infrastructures for end-of-life care, challenges related to the management of death, challenges of transferring patients to home, providing non-academic palliative care, lack of political commitment of the government and Spiritual vacuum. The category of opportunities included subcategories of cost-effectiveness, moving towards socializing health, and structure of the health system. CONCLUSIONS: Home-based palliative care requires government and health system support. Structural and process modification in the healthcare can provide conditions in which terminally ill cancer patients receive appropriate care in home and experience death with dignity through support of family, friends and healthcare.


Assuntos
Pessoal de Saúde/psicologia , Serviços de Assistência Domiciliar/normas , Cuidados Paliativos/normas , Percepção , Adulto , Idoso , Feminino , Grupos Focais , Pessoal de Saúde/estatística & dados numéricos , Serviços de Assistência Domiciliar/organização & administração , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Doente Terminal/psicologia
14.
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
15.
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
16.
Prim Care ; 46(3): 399-413, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31375189

RESUMO

Primary care physicians are at the frontlines, often the first point of contact for many people with the medical system. They have to manage chronically ill patients with life-limiting diagnoses who also have ongoing psychosocial needs. This article discusses why cultural, spiritual, and religious interplay with medical decision making is important and provide some strategies for addressing these aspects of care.


Assuntos
Características Culturais , Cuidados Paliativos/organização & administração , Atenção Primária à Saúde/organização & administração , Religião , Espiritualidade , Humanos , Cuidados Paliativos/psicologia , Qualidade de Vida
17.
Prim Care ; 46(3): 461-473, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31375193

RESUMO

Pediatric palliative care and hospice medicine is a field in which a multidisciplinary team assists in the management and treatment of infants, children, and young adults with a serious condition. A therapeutic relationship is created among the team, patients, and their caregivers to address total pain. This encompasses exploration of physical pain, social, spiritual, and emotional pain. Patient-centered and family-centered shared decision-making is paramount when setting and revisiting goals of care with patients and their families. Consider a checklist when faced with a dying patient so that the family and team feel supported.


Assuntos
Família/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Fatores Etários , Anorexia/terapia , Criança , Pré-Escolar , Tomada de Decisões , Delírio/terapia , Emoções , Pesar , Humanos , Lactente , Recém-Nascido , Relações Interpessoais , Manejo da Dor/métodos , Planejamento de Assistência ao Paciente , Qualidade de Vida , Espiritualidade , Assistência Terminal/métodos , Assistência Terminal/psicologia
19.
N Z Med J ; 132(1501): 10-20, 2019 08 30.
Artigo em Inglês | MEDLINE | ID: mdl-31465323

RESUMO

AIM: Professional supervision (PS), a collaborative relationship that promotes reflection on contextualised work-related issues for the benefit of ongoing learning and development and improved professional practice, is not well understood in the medical context. This study aimed to explore the attitudes and experiences of PS among doctors working in palliative care in New Zealand. METHOD: Eighty members of the Australia New Zealand Society of Palliative Medicine (ANZSPM) participated in a cross-sectional quantitative survey. RESULTS: Overall, PS was felt to be important, particularly by those currently participating in PS, for enhancing clinical functioning and supporting doctors' wellbeing. Barriers to undertaking PS included finding a supervisor, lack of funding and time, with the most significant factor being whether the workplace supported PS. Supervisees' responses showed PS to be a safe experience, addressing a wide range of issues, with a positive effect on personal coping. CONCLUSION: Despite identified barriers, New Zealand-based palliative care doctors reported PS to be important and beneficial both personally and professionally. Further consideration should include the impact of professional and organisational culture on uptake of PS, future research and acknowledgment that palliative medicine may be in a position to highlight the benefits of PS for the wider medical community.


Assuntos
Atitude do Pessoal de Saúde , Competência Clínica , Tutoria , Cuidados Paliativos , Equipe de Assistência ao Paciente , Papel do Médico , Estudos Transversais , Humanos , Modelos Organizacionais , Nova Zelândia , Organização e Administração , Cuidados Paliativos/ética , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente/ética , Equipe de Assistência ao Paciente/organização & administração , Relações Profissional-Paciente , Melhoria de Qualidade
20.
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
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