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1.
Palliat Support Care ; 21(1): 65-73, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35301965

RESUMO

OBJECTIVE: Spiritual care is a component of quality palliative care, but healthcare providers have reported lack of training as a barrier to its provision. This paper describes the evaluation of the Interprofessional Spiritual Care Educational Curriculum (ISPEC)© which is a six-module evidence-based curriculum developed for teaching interprofessional spiritual care based on a generalist-specialist model of spiritual care. METHOD: The course was run online in 2020 and attended by 20 healthcare workers who were invited to join the evaluation. Questionnaires were completed by participants before the training program (baseline), immediately after the training (post), and 3 months following the end of the program (follow-up). After the follow-up questionnaires, participants were invited to join a Focus Group to expand on their responses. Descriptive and exploratory statistical analysis was performed on quantitative data, and qualitative data was subjected to Thematic Analysis. RESULTS: Exploratory data analysis showed that self-reported competence, confidence, and comfort in providing spiritual care significantly improved following training (p = 0.002) and were maintained over time (p = 0.034). In qualitative analysis, the main themes were: (1) overwhelmed by content; (2) the importance of practical training; (3) spiritual care is for everyone; (4) spiritual care should come from the heart; (5) training needs to be inclusive; and (6) spirituality is culturally specific. SIGNIFICANCE OF RESULTS: This article describes an evaluation of the ISPEC© spiritual care training course administered to an Australian healthcare cohort using an online format. These preliminary findings suggest that the ISPEC© program is effective in improving the ability of healthcare professionals to provide spiritual care. More work is needed to improve the cultural relevance of the program in Australia.


Assuntos
Terapias Espirituais , Espiritualidade , Humanos , Austrália , Currículo , Cuidados Paliativos
2.
Teach Learn Med ; 35(1): 83-94, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35067146

RESUMO

PROBLEM: Failure to elicit patients' values, goals, and priorities can result in missed opportunities to provide patient-centered care. Little is known about resident physicians' direct experience of eliciting patients' values, goals, and priorities and integrating them into routine hospital care. INTERVENTION: In 2017, we asked resident physicians on general internal medicine wards rotations to elicit and document a "Personal History" from patients upon hospital admission, in addition to a traditional social history. We defined a Personal History as documenting "what matters most to the patient and why." The purpose of the Personal History was to understand and consider patients' values, goals, and priorities. We then conducted qualitative interviews of the resident physicians to understand their experiences eliciting and integrating patients' values, goals, and priorities in routine hospital care. CONTEXT: We performed this exploratory intervention at a large high-volume urban hospital. Two teams from general medicine wards participated in the Personal History intervention. We conducted voluntary interviews of eligible residents (n = 14/15; 93%) about their experience after they completed their general wards rotations. Using the coproduction model, our aim was to explore how patients' self-expertise can be combined with physicians' medical expertise to achieve patient-centered care. IMPACT: Four major themes were identified: 1) Taking a Personal History had value, and eliciting patients' self-expertise had the potential to change medical decision making, 2) Situational and relational factors created barriers to obtaining a Personal History, 3) Variability in buy-in with the proposed intervention affected effort, and 4) Meaningful Personal History taking could be an adaptive and longitudinal process. Perceived benefits included improved rapport with patients, helpful for patients with complex medical history, and improved physician-patient communication. Barriers included patient distress, lack of rapport, and responses from patients which did not add new insights. Accountability from attending physicians affected resident effort. Suggested future applications were for patients with serious illness, integration into electronic health records, and skills taught in medical education. LESSONS LEARNED: Resident physicians had generally positive views of eliciting a Personal History from patients upon admission to the hospital. Overall, many residents conveyed the perceived ability to elicit and consider patient's values, goals, and priorities in certain situations (e.g., patient not in distress, adequate rapport, lack of competing priorities such as medical emergencies or overwhelming workloads). External factors, such as electronic health record design and accountability from attending physicians, may further promote residents' efforts to routinely incorporate patients' values, goals, and priorities in clinical care. Increasing familiarity among both resident physicians and patients in routinely discussing patients' values, goals, and priorities may facilitate patient-centered practice.


Assuntos
Internato e Residência , Médicos , Humanos , Assistência Centrada no Paciente , Relações Médico-Paciente , Hospitais
3.
JAMA ; 328(2): 184-197, 2022 07 12.
Artigo em Inglês | MEDLINE | ID: mdl-35819420

RESUMO

Importance: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. Objective: To review evidence concerning spirituality in serious illness and health and to identify implications for patient care and health outcomes. Evidence Review: Searches of PubMed, PsycINFO, and Web of Science identified articles with evidence addressing spirituality in serious illness or health, published January 2000 to April 2022. Independent reviewers screened, summarized, and graded articles that met eligibility criteria. Eligible serious illness studies included 100 or more participants; were prospective cohort studies, cross-sectional descriptive studies, meta-analyses, or randomized clinical trials; and included validated spirituality measures. Eligible health outcome studies prospectively examined associations with spirituality as cohort studies, case-control studies, or meta-analyses with samples of at least 1000 or were randomized trials with samples of at least 100 and used validated spirituality measures. Applying Cochrane criteria, studies were graded as having low, moderate, serious, or critical risk of bias, and studies with serious and critical risk of bias were excluded. Multidisciplinary Delphi panels consisting of clinicians, public health personnel, researchers, health systems leaders, and medical ethicists qualitatively synthesized and assessed the evidence and offered implications for health care. Evidence-synthesis statements and implications were derived from panelists' qualitative input; panelists rated the former on a 9-point scale (from "inconclusive" to "strongest evidence") and ranked the latter by order of priority. Findings: Of 8946 articles identified, 371 articles met inclusion criteria for serious illness; of these, 76.9% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for serious illness: (1) incorporate spiritual care into care for patients with serious illness; (2) incorporate spiritual care education into training of interdisciplinary teams caring for persons with serious illness; and (3) include specialty practitioners of spiritual care in care of patients with serious illness. Of 6485 health outcomes articles, 215 met inclusion criteria; of these, 66.0% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for health outcomes: (1) incorporate patient-centered and evidence-based approaches regarding associations of spiritual community with improved patient and population health outcomes; (2) increase awareness among health professionals of evidence for protective health associations of spiritual community; and (3) recognize spirituality as a social factor associated with health in research, community assessments, and program implementation. Conclusions and Relevance: This systematic review, analysis, and process, based on highest-quality evidence available and expert consensus, provided suggested implications for addressing spirituality in serious illness and health outcomes as part of person-centered, value-sensitive care.


Assuntos
Doença , Saúde , Terapias Espirituais , Espiritualidade , Estudos Transversais , Pessoal de Saúde , Humanos , Estudos Prospectivos
4.
J Health Care Chaplain ; 28(3): 431-442, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34396929

RESUMO

The Interprofessional Spiritual Care Curriculum (ISPEC) was created to train interdisciplinary health care teams to recognize and address the spiritual needs of seriously or chronically ill patients. The curriculum, in a train-the-trainer format, employs didactic presentations, discussions, lab sessions, skill demonstrations, and video clips. In course applications, participants were required to submit goals to achieve and demonstrate institutional support. For the first ISPEC course, in July 2018, 48 clinician-chaplain teams attended. Following the 2½ day course, participants had access to online training modules for 1-year, ISPEC faculty mentoring support, and regular conference calls on goal implementation progress. Participants reported recognizing the importance of providing spiritual care and a new understanding of how collaborating as interprofessional teams enabled them to integrate this care into their home institution settings. In a mixed-methods evaluation survey completed 12 months after the ISPEC course, participants reported on the percentage of their goals completed, number and types of professionals they had educated in spiritual care, and personal confidence regarding spiritual care leadership skills. This data can serve as a model to guide other organizations striving to improve spiritual care, practiced collaboratively by clinicians and chaplains, as an essential aspect of overall QI efforts in palliative care.


Assuntos
Melhoria de Qualidade , Terapias Espirituais , Clero , Currículo , Humanos , Cuidados Paliativos , Espiritualidade
5.
Pediatr Blood Cancer ; 69(3): e29515, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34913577

RESUMO

BACKGROUND: Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians' capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology. A model of interprofessional spiritual care entails that all team members attend to patients' spirituality by employing generalist spiritual care skills and collaborating with spiritual care specialists such as chaplains. METHODS: Interdisciplinary team members providing care for AYA with cancer and blood disorders were recruited to participate in interprofessional spiritual care education. Our intervention combined an evidence-based online curriculum and in-person discussion groups. Pretest-posttest study examined changes in participants' skills and practices to identify, address, and discuss spiritual concerns. Surveys were conducted at baseline and at 1, 3, and 6 months after the intervention. RESULTS: Participants (n = 21) included physicians, advanced practice providers, nurse coordinators, and psychosocial team members. We observed positive changes in participants' ability (36%, P < 0.01), frequency (56%, P = 0.01), confidence (32%, P < 0.01), and comfort (31%, P = 0.02) providing generalist spiritual care baseline versus one month, with significant gains maintained through six months (Omnibus P < 0.05). CONCLUSIONS: Utilizing ISPEC, interprofessional spiritual care education has a strong potential to develop pediatric hematology-oncology team members' capabilities to attend to the spiritual aspect of whole-person care and thus contribute to the well-being of AYA with cancer and blood disorders.


Assuntos
Hematologia , Neoplasias , Terapias Espirituais , Adolescente , Criança , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Projetos Piloto , Espiritualidade , Adulto Jovem
7.
J Pain Symptom Manage ; 60(3): e7-e11, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32629084

RESUMO

The coronavirus disease 2019 (COVID-19) crisis has amplified the importance of palliative care to countless patients suffering with and dying from this disease, as well as to their families, communities, and the worldwide cadre of overburdened health care workers. Particularly urgent is the need for spiritual care specialists and generalists to address spiritual suffering given the degree of isolation, loneliness, and vulnerability caused by this pandemic. Although spiritual care has long been recognized as one of the domains of quality palliative care, it is often not fully integrated into practice. All disciplines are ultimately responsible for ensuring that spiritual care is prioritized to improve quality of life and the experience of patients and families facing spiritual emergencies amid the complex life-and-death scenarios inherent to coronavirus disease 2019. Although the pandemic has revealed serious fault lines in many health care domains, it has also underscored the need to recommit to spiritual care as an essential component of whole-person palliative care.


Assuntos
Betacoronavirus , Infecções por Coronavirus/epidemiologia , Cuidados Paliativos/organização & administração , Pneumonia Viral/epidemiologia , Terapias Espirituais/organização & administração , Espiritualidade , COVID-19 , Infecções por Coronavirus/psicologia , Infecções por Coronavirus/terapia , Humanos , Pandemias , Pneumonia Viral/psicologia , Pneumonia Viral/terapia , SARS-CoV-2
8.
J Pain Symptom Manage ; 60(4): 754-764, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32387576

RESUMO

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Consenso , Humanos , Cuidados Paliativos , Qualidade de Vida
9.
J Palliat Med ; 23(6): 777-784, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31895621

RESUMO

Background: Spiritual care is a key domain of quality palliative care. Spiritual distress is highly prevalent in patients and their families facing serious illness. Guidelines support the ethical obligation of health care providers to attend to spiritual distress as part of total distress. All clinicians require education and support to provide this care to patients and their families facing serious illness. Objective: This project focused on the development of a curriculum for education of health care professionals in spiritual care. It was based on a consensus-derived generalist-specialist model of spiritual care, with all clinicians providing generalist-spiritual care and trained chaplains providing specialist spiritual care. Design: The curriculum was designed for classroom and online learning. Setting: The curriculum is appropriate for all clinical settings in the United States and internationally. Measurements: Needs assessment surveys and course evaluation data have provided a basis on which to develop and refine the curriculum. This curriculum is built on a pilot Interprofessional Spiritual Care Education Curriculum (ISPEC) course held at the Veterans Administration, DC. Results: Needs assessment and course evaluation data support the ISPEC course content. Conclusions: The ISPEC curricula serve as a much-needed training resource to improve spiritual care for all people with serious illness.


Assuntos
Currículo , Espiritualidade , Pessoal de Saúde/educação , Humanos , Cuidados Paliativos , Inquéritos e Questionários
10.
ESMO Open ; 4(1): e000465, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30962955

RESUMO

Spiritual care is recognised as an essential element of the care of patients with serious illness such as cancer. Spiritual distress can result in poorer health outcomes including quality of life. The American Society of Clinical Oncology and other organisations recommend addressing spiritual needs in the clinical setting. This paper reviews the literature findings and proposes recommendations for interprofessional spiritual care.

11.
J Palliat Med ; 21(10): 1389-1397, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30256135

RESUMO

BACKGROUND: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group"). DESIGN: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. RESULTS: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. DISCUSSION: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world.


Assuntos
Saúde Global , Cuidados Paliativos/organização & administração , Comitês Consultivos , Atitude do Pessoal de Saúde , Catolicismo , Certificação , Consenso , Técnica Delphi , Acessibilidade aos Serviços de Saúde , Humanos , Medicina Paliativa/educação , Cidade do Vaticano
12.
J Palliat Med ; 21(10): 1398-1407, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30256150

RESUMO

Resumen Contexto: La Academia Pontificia de la Vida (PAV) es una institución académica de la Santa Sede (Vaticano) cuyo objetivo es promover una visión católica de la ética biomédica. La PAV invitó a una serie de expertos en Cuidados Paliativos (CP) de todo el mundo, de todas las creencias, a desarrollar recomendaciones estratégicas para el desarrollo global de CP ("Grupo PAL-LIFE"). Diseño: Trece expertos internacionales reconocidos por su actividad promotora global de CP participaron en un estudio Delphi on-line. En un proceso de cuatro rondas, se pidió a los participantes que identificasen los grupos de interés o instituciones claves para la promoción de CP y que propusieran, para cada uno de ellos, recomendaciones estratégicas para el desarrollo de CP. Cada ronda incorporaba los comentarios de las rondas previas hasta lograr el consenso en las recomendaciones más importantes. En una última fase, al grupo de expertos se le solicitó la jerarquización por importancia de los grupos clave en una escala de 1 a 13. También se solicitaron sugerencias concretas para la implementación de las recomendaciones. Mediante análisis clúster se ordenaron los grupos de interés en dos niveles de importancia para el desarrollo de CP. Resultados: Trece recomendaciones fueron seleccionadas como las más importantes (una por cada grupo clave). Las recomendaciones para los grupos mejor puntuados fueron: (1) Responsables Políticos: garantizar el acceso universal a los CP; (2) Academia: ofrecer cursos obligatorios de CP en el pregrado; (3) Profesionales sanitarios: promover una certificación adecuada; (4) Hospitales e Instituciones sanitarias: asegurar el acceso a medicamentos de CP; y (5) Asociaciones de CP: ser promotoras eficaces y trabajar con los gobiernos en la implementación de las recomendaciones internacionales sobre CP. También se presentan recomendaciones para los ocho grupos clave restantes. Discusión: Este documento representa la posición oficial de la PAV en lo que respecta a estrategias de promoción para el desarrollo de los CP en el mundo.

13.
J Glob Oncol ; 4: 1-24, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-30085844

RESUMO

Purpose The purpose of this new resource-stratified guideline is to provide expert guidance to clinicians and policymakers on implementing palliative care of patients with cancer and their caregivers in resource-constrained settings and is intended to complement the Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update of 2016. Methods ASCO convened a multidisciplinary, multinational panel of experts in medical oncology, family medicine, radiation oncology, hematology/oncology, palliative and/or hospice care, pain and/or symptom management, patient advocacy, public health, and health economics. Guideline development involved a systematic literature review, a modified ADAPTE process, and a formal consensus-based process with the Expert Panel and additional experts (consensus ratings group). Results The systematic review included 48 full-text publications regarding palliative care in resource-constrained settings, along with cost-effectiveness analyses; the evidence for many clinical questions was limited. These provided indirect evidence to inform the formal consensus process, which resulted in agreement of ≥ 75% (by consensus ratings group including Expert Panel). Recommendations The recommendations help define the models of care, staffing requirements, and roles and training needs of team members in a variety of resource settings for palliative care. Recommendations also outline the standards for provision of psychosocial support, spiritual care, and opioid analgesics, which can be particularly challenging and often overlooked in resource-constrained settings. Additional information is available at www.asco.org/resource-stratified-guidelines . It is the view of ASCO that health care providers and health care system decision makers should be guided by the recommendations for the highest stratum of resources available. The guideline is intended to complement but not replace local guidelines.


Assuntos
Oncologia/métodos , Oncologia/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Humanos
14.
AMA J Ethics ; 20(7): E655-663, 2018 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-30007026

RESUMO

Spirituality is increasingly recognized as an essential element of patient care and health. It is often during illness that patients experience deep spiritual and existential suffering. With clinicians' care and compassion, patients are able to find solace and healing through their spiritual beliefs and values. This article chronicles a history of spirituality and health education, including the development of consensus-based clinical guidelines and competencies in health professions education that have influenced the curricular development.


Assuntos
Educação Médica/ética , Assistência ao Paciente/ética , Religião e Medicina , Espiritualidade , Atitude do Pessoal de Saúde , Competência Clínica/normas , Empatia , Humanos , Assistência Centrada no Paciente/ética , Relações Profissional-Paciente , Terapias Espirituais/educação
15.
Hematol Oncol Clin North Am ; 32(3): 505-517, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29729785

RESUMO

Spiritual issues play a prominent role for patients with cancer. Studies have demonstrated a positive connection between a patient's spirituality and health outcomes, including quality of life, depression and anxiety, hopefulness, and the ability to cope with illness. Spiritual or existential distress is prominent in patients with cancer. Models are described that identify ways for clinicians to identify or diagnose spiritual or existential distress, and to attend to that distress. It is critical that all clinicians assess for spiritual distress as part of a routine distress assessment, identify appropriate treatment strategies, and work closely with trained spiritual care professionals.


Assuntos
Neoplasias , Terapias Espirituais/métodos , Estresse Psicológico , Humanos , Neoplasias/patologia , Neoplasias/fisiopatologia , Neoplasias/psicologia , Neoplasias/terapia , Estresse Psicológico/patologia , Estresse Psicológico/fisiopatologia , Estresse Psicológico/psicologia , Estresse Psicológico/terapia
16.
J Pain Symptom Manage ; 55(3): 1035-1040, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29169995

RESUMO

In this article, we aimed to set out current problems that hinder a fully fledged integration of spiritual and medical care, which address these obstacles. We discuss the following five statements: 1) spiritual care requires a clear and inclusive definition of spirituality; 2) empirical evidence for spiritual care interventions should be improved; 3) understanding patients' experiences of contingency is paramount to deliver effective spiritual care; 4) attention to spiritual needs of patients is a task for every health care practitioner; 5) courses on spirituality and spiritual care should be mandatory in the medical curriculum. Current problems might be overcome by speaking each other's language, which is crucial in interdisciplinary research and in good interdisciplinary collaboration. Using a clear and inclusive definition of spirituality and substantiating spiritual care using medical standards of evidence-based practice is a way to speak each other's language and to increase mutual understanding. Furthermore, including spirituality in the medical curriculum would raise awareness of medical practitioners for their task of attending to patients' spiritual needs and, subsequently, to better and more appropriate referral for spiritual care.


Assuntos
Prestação Integrada de Cuidados de Saúde/métodos , Espiritualidade , Currículo , Educação Médica , Humanos , Assistência Centrada no Paciente/métodos , Religião e Medicina
17.
J Pain Symptom Manage ; 55(3): 913-921, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29154890

RESUMO

CONTEXT: Being diagnosed with incurable cancer can be a life-changing experience, evoking different spiritual questions and needs. Confronting a serious life-threatening event occurs not only often unexpected but also can disrupt a person's self-image and ideals of their personhood. This confrontation makes it difficult for people to integrate it into their personal life story-otherwise referred to as an experience of contingency. OBJECTIVES: Different modes of relating to the contingent life event of having cancer have been studied in a Dutch patient population. Here we present an interview study in an U.S. population with advanced cancer patients. METHODS: We included eight American patients with advanced cancer from the George Washington University Cancer Center. All patients were interviewed twice discussing their life events and life goals using a semistructured interview model. All interviews were transcribed and analyzed focusing on how patients described the way they related to the experience of having advanced cancer. The constant comparative method with a directed content analysis approach was used to code the themes in the interviews. RESULTS: The analyses show that the four modes of relating to contingency that we found in the Dutch study population can also be found in an American advanced cancer patient population. Differences were found in the extended way American patients described the fourth mode of "receiving." CONCLUSION: This study ensures a broader and deeper understanding of relating to the experience of contingency in having incurable cancer, which is crucial in developing accurate spiritual care in the palliative phase of patients.


Assuntos
Neoplasias/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Objetivos , Humanos , Entrevistas como Assunto , Masculino , Memória Episódica , Pessoa de Meia-Idade , Modelos Psicológicos , Neoplasias/terapia , Cuidados Paliativos , Espiritualidade , Estados Unidos
18.
J Oncol Pract ; 14(1): 58, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29144864
19.
Palliat Med ; 32(1): 216-230, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29020846

RESUMO

BACKGROUND: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. AIM: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. DESIGN: Focus group study. SETTING/PARTICIPANTS: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. RESULTS: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs. CONCLUSION: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.


Assuntos
Cuidadores/psicologia , Neoplasias/enfermagem , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Espiritualidade , Estresse Psicológico/psicologia , Doente Terminal/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Bélgica , Canadá , Feminino , Finlândia , Grupos Focais , Humanos , Quênia , Masculino , Pessoa de Meia-Idade , Polônia , República da Coreia , África do Sul , Reino Unido , Estados Unidos
20.
J Oncol Pract ; 13(10): e838-e843, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28800276

RESUMO

In the United States, physician aid in dying (PAD) is now legal in several states. However, neither a requirement for a palliative care (PC) consultation nor a defined education in PC exists for physicians participating in PAD or patients requesting assistance. Patients with advanced chronic and serious illness often experience complex physical, psychosocial, and spiritual distress. PC focuses on relieving this distress and improving patient quality of life through early identification and intervention in all domains of suffering, including physical, psychological, social, and spiritual. Ideally, we would recommend a PC consult, but unfortunately, PC is not readily available or offered at this time to all those who might benefit from it. We present a case for providing an educational handout to patients who inquire about PAD. This handout explains the potential benefits of PC as an additional procedural safeguard to existing regulations. Such information would help to ensure the integrity of the informed consent process, enhance shared decision making, and improve patient comprehension of the options.


Assuntos
Competência Clínica , Tomada de Decisões , Consentimento Livre e Esclarecido , Cuidados Paliativos , Educação de Pacientes como Assunto , Suicídio Assistido , Humanos , Qualidade de Vida , Encaminhamento e Consulta , Estados Unidos
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