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1.
BMC Palliat Care ; 23(1): 70, 2024 Mar 12.
Artículo en Inglés | MEDLINE | ID: mdl-38468298

RESUMEN

BACKGROUND: As the proportion of older persons in society increases, there is a growing trend towards providing end-of-life care in their homes. Palliative care is a complex and knowledge-demanding form of care, and nurse assistants are those who work closest to the older person at the end-of-life in their own homes. However, nurse assistants sometimes have low educational and insufficient levels of knowledge in palliative care, which can affect the quality of care they provide. Moreover, nurse assistants' experiences are relatively unexplored in this context. The purpose of the study was to illuminate nurse assistants' experiences in caring for dying older persons at home. METHOD: An empirical, qualitative interview study was conducted with 14 nurse assistants with experience of palliative care in homecare. The material was analyzed using thematic content analysis. RESULTS: From the nurse assistant's experiences, one main theme emerged: doing everything possible for the dying older person despite challenges. Moreover, three sub-themes emerged: making a difference at a crucial time, death awakens emotions, and balancing personal and professional relationships. The nurse assistants' saw their role primarily as relieving symptoms but also focusing on next of kin. The following are described as essential parts of their role: carrying out practical nursing tasks, focusing on the physical environment, working alone and seeking help from colleagues due to a physical distance to the other members of the multidisciplinary team. The nurse assistants experienced a lack of support as there was no structured guidance or debriefing available in difficult emotional situations. Furthermore, they disclosed that they were left alone to deal with their feelings. CONCLUSION: This study demonstrates that nurse assistants strive to provide comprehensive care for dying older persons despite facing obstacles from their working conditions and work organization. They lack supervision and education in palliative care, but they rely on their experience-based knowledge to a large extent and provide care according to the four cornerstones of palliative care.


Asunto(s)
Casas de Salud , Cuidado Terminal , Humanos , Anciano , Anciano de 80 o más Años , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Investigación Cualitativa , Percepción
2.
Am J Hosp Palliat Care ; 41(12): 1482-1490, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38305722

RESUMEN

Indigenous American (I.A.) individuals with serious illness and their families have unmet needs. Often, this group is viewed as a minority within a minority. Numerous health challenges exist within the I.A. populations resulting in dire health care situations. Historical trauma and mistrust of the healthcare system impacts access to quality palliative care by this marginalized population. Given the range of social, spiritual, and cultural issues, the interprofessional team needs increased knowledge specific to the I.A. population to ensure holistic, culturally sensitive care. Utilizing a case study, this article reviews of the needs of I.A. individuals with serious illness and essential skills. The aim is empower palliative care clinicians the knowledge to provide culturally sensitive and congruent care to I.A. individuals with serious illness and their community.


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/organización & administración , Cuidados Paliativos/psicología , Asistencia Sanitaria Culturalmente Competente/organización & administración , Competencia Cultural , Indígenas Norteamericanos/psicología , Defensa del Paciente , Servicios de Salud del Indígena/organización & administración
3.
BMC Palliat Care ; 23(1): 31, 2024 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-38302931

RESUMEN

BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. TRIAL REGISTRATION: retrospectively registered.


Asunto(s)
Neoplasias , Cuidado Terminal , Niño , Humanos , Cuidados Paliativos/psicología , Estudios Retrospectivos , Cuidado Terminal/psicología , Neoplasias/complicaciones , Neoplasias/terapia , Disnea , Muerte
4.
J Hosp Palliat Nurs ; 26(1): 14-20, 2024 02 01.
Artículo en Inglés | MEDLINE | ID: mdl-38134344

RESUMEN

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis. From the literature review, 2 key principles were found to facilitate neonatal palliative care: family-centered care and integrative care in the neonatal intensive care unit. In addition, the themes found in this review included (1) providing comfortable care to dying infants with respect to infants and offering parents choices, (2) therapeutic communication, (3) support with respect, and (4) bereavement care for parents of dying infants in the neonatal intensive care unit. Caregivers require effective communication, manpower support, emotional support, educational programs, and well-defined protocols. The evidence mapped and synthesized in this review indicates the need to facilitate the provision of palliative care in the neonatal intensive care unit in line with the unique needs of infants, parents, and nurses.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Atención de Enfermería , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Cuidados Paliativos/psicología , Padres/psicología
5.
Palliat Support Care ; 22(3): 493-498, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38131135

RESUMEN

OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. METHODS: Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. RESULTS: Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.


Asunto(s)
Cuidados Paliativos , Tacto Terapéutico , Humanos , Proyectos Piloto , Femenino , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicología , Masculino , Italia , Adulto , Tacto Terapéutico/métodos , Tacto Terapéutico/normas , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricos , Persona de Mediana Edad , Pediatría/métodos , Pediatría/normas , Agotamiento Profesional/psicología , Agotamiento Profesional/etiología
6.
J Palliat Med ; 26(12): 1634-1643, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37972058

RESUMEN

Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). Objectives: To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. Design: A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. Results: Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. Conclusions: Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Niño , Humanos , Cuidados Paliativos/psicología , Calidad de Vida , Servicios de Salud Comunitaria , Dolor
7.
Ann Palliat Med ; 12(6): 1373-1381, 2023 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-37872127

RESUMEN

The delivery of comprehensive cancer care within a progressively intricate healthcare environment requires oncology providers to become well-versed in the integration of palliative care (PC). Moreover, as healthcare professionals are urged to prioritize the individual preferences of patients and their families who confront life-limiting illnesses, it has become evident that oncology patients and their families have identified their psychosocial care needs as multifaceted and distinct, calling for specialized attention from care providers. Nevertheless, this is a skill that can be acquired through learning and practice. The landscape of PC is rapidly changing, with paradigm shifting studies highlighting the importance of early concurrent palliative and oncology inpatient and outpatient care for those with new advanced cancer diagnosis. Early concurrent care can notably improve quality of life (QoL), symptom control, patient and caregiver satisfaction, reduce costs and even improve survival. There is no longer a question of if PC should be offered, but instead when referral should be completed, what is the optimal model for service delivery and what barriers are present to achieve concurrent care. Conceptual models have been identified for optimal integrated palliative and oncology care delivery. In order to provide the best integrated care however, multiple obstacles need to be overcome. This narrative review discusses the importance of early integrated oncology and PC for patients with advanced cancer diagnosis, as well as the barriers to the integration of these specialties and potential models for delivery.


Asunto(s)
Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Calidad de Vida , Oncología Médica , Pacientes Internos
8.
Palliat Med ; 37(8): 1100-1128, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37489074

RESUMEN

BACKGROUND: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. AIMS: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. DESIGN: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. RESULTS: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. CONCLUSION: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff.


Asunto(s)
Terapia de Aceptación y Compromiso , Cuidadores , Humanos , Cuidadores/psicología , Cuidados Paliativos/psicología , Pesar , Ansiedad/terapia
9.
Hu Li Za Zhi ; 70(4): 95-102, 2023 Aug.
Artículo en Chino | MEDLINE | ID: mdl-37469324

RESUMEN

Taiwan has been an aging society since 2018. As a result, long-term care, end-of-life autonomy, and hospice care have received increasing attention. The government of Taiwan promotes home-based healthcare through the National Health Insurance System to enable the efficient utilization of medical resources and reduce overall medical costs. Taiwan's community hospice and palliative care network is expected to serve as the main care model supplementing partial hospitalization and institutional care. In this article, we review the history of and policies related to hospice and palliative care in Taiwan using a literature review and examining Pingtung County as a case study. The implementation of home-based palliative care is also outlined and policy revisions are proposed. The results are intended to provide a reference for healthcare authorities and medical institutions to promote community hospice and palliative care policies. The integrated care model can enhance the capacity of community-based palliative care, support patients receiving palliative care and their family members and caregivers, and ensure physical and psychological comfort for patients. This model contributes to the realization of older adults' preference for dying at home, which is especially pronounced in cultures where traditional Chinese ideas are deeply rooted.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Anciano , Cuidados Paliativos/psicología , Taiwán , Hospitales de Enseñanza
10.
Semin Hematol ; 60(4): 220-225, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37517948

RESUMEN

Patients with hematologic malignancies often experience fatigue, lack of vitality, and energy, and high psychological distress. High levels of unmet care needs of patients with hematologic malignancies in Asia were identified. This review provides an overview of current evidence on the experiences and palliative care needs of patients with hematologic malignancies and their families and the barriers and challenges of integrating palliative care into hematology care in Asia. Patients with hematologic malignancies who received palliative care could benefit from less aggressive end-of-life treatments. However, the uncertain and variable nature of the prognosis and illness trajectories of hematologic malignancies increase the difficulties of integrating palliative care into hematologic care. Patients and their families are often referred to palliative care services late, which leaves a short window for palliative care teams to provide holistic needs assessment and person-centered care for those who need it. In addition, cultural differences in medical decision-making patterns and complex social norms and interactions among patients, families, and healthcare staff make it even more challenging to initiate palliative care conversations in Asia. Future research should focus on the development and evaluation of culturally appropriate palliative care for patients with hematologic malignancies and their family caregivers in Asia, given that the low rate of service intake and poor public awareness of the important role of palliative care in disease trajectories were reported. The socio-cultural context surrounding individuals should be taken into consideration to ensure the provision of person-centered care for this group of patients. Digital health could be one of the possible solutions forward to address local needs and challenges.


Asunto(s)
Neoplasias Hematológicas , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Cuidadores/psicología , Neoplasias Hematológicas/terapia , Pronóstico , Asia
11.
Omega (Westport) ; 87(4): 1361-1374, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37280745

RESUMEN

Mental health problems were found to be more common than physical health problems in cancer caregivers in palliative care units. This is a quasi-experimental study planned to determine the effect of the meditation based mandala programme on distress, anxiety and depression in caregivers of cancer patients in a palliative care unit. Planned as a single-group pre-test/post-test design, with a total of 11 caregivers. Data were collected with the Caregiver Diagnosis Form, Distress Thermometer, Beck Depression Inventory, and Beck Anxiety Inventory. Caregivers participated in the Meditation Based Mandala Programme once a week, which lasted 2 hours for 5 weeks. The distress, depression and anxiety levels of the patients were measured before the programme started and at the end of the programme. Meditation based mandala programme is effective in reducing the distress, depression and anxiety levels of caregivers of cancer patients in the palliative care unit.


Asunto(s)
Meditación , Neoplasias , Humanos , Cuidadores/psicología , Cuidados Paliativos/psicología , Depresión/psicología , Estrés Psicológico/psicología , Neoplasias/psicología , Ansiedad/psicología
12.
BMC Geriatr ; 23(1): 275, 2023 05 05.
Artículo en Inglés | MEDLINE | ID: mdl-37147594

RESUMEN

BACKGOUND: Nurses working in care homes face significant challenges that are unique to that context. The importance of effective resilience building interventions as a strategy to enable recovery and growth in these times of uncertainty have been advocated. The aim of this rapid review was to inform the development of a resource to support the resilience of care home nurses. We explored existing empirical evidence as to the efficacy of resilience building interventions. undertaken with nurses. METHODS: We undertook a rapid review using quantitative studies published in peer reviewed journals that reported resilience scores using a valid and reliable scale before and after an intervention aimed at supporting nurse resilience. The databases; Cumulative Index to Nursing and Allied Health Literature, Medline and PsychInfo. and the Cochrane Library were searched. The searches were restricted to studies published between January 2011 and October 2021 in the English language. Only studies that reported using a validated tool to measure resilience before and after the interventions were included. RESULTS: Fifteen studies were included in this rapid review with over half of the studies taking place in the USA. No studies reported on an intervention to support resilience with care home nurses. The interventions focused primarily on hospital-based nurses in general and specialist contexts. The interventions varied in duration content and mode of delivery, with interventions incorporating mindfulness techniques, cognitive reframing and holistic approaches to building and sustaining resilience. Thirteen of the fifteen studies selected demonstrated an increase in resilience scores as measured by validated and reliable scales. Those studies incorporating 'on the job,' easily accessible practices that promote self-awareness and increase sense of control reported significant differences in pre and post intervention resilience scores. CONCLUSION: Nurses continue to face significant challenges, their capacity to face these challenges can be nurtured through interventions focused on strengthening individual resources. The content, duration, and mode of delivery of interventions to support resilience should be tailored through co-design processes to ensure they are both meaningful and responsive to differing contexts and populations.


Asunto(s)
Atención Plena , Enfermeros de Salud Comunitaria , Humanos , Cuidados Paliativos/psicología
13.
S Afr Fam Pract (2004) ; 65(1): e1-e5, 2023 04 20.
Artículo en Inglés | MEDLINE | ID: mdl-37132570

RESUMEN

Palliative care has been defined as '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'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Niño , Cuidados Paliativos/psicología , Cuidado Terminal/psicología , Enfermo Terminal/psicología
14.
Int J Palliat Nurs ; 29(4): 170-178, 2023 Apr 02.
Artículo en Inglés | MEDLINE | ID: mdl-37079473

RESUMEN

BACKGROUND: The palliative care provided to cancer patients should also contemplate the psychological and spiritual dimensions of care. AIMS: This study aimed to compare religiosity and spiritual/religious coping (SRC) of cancer patients in palliative care with a group of healthy volunteers and determine whether sociodemographic characteristics affected this association. METHODS: This was a case-control study conducted with 86 patients living with cancer from an outpatient palliative care clinic of the São Paulo State University (UNESP) medical school, Botucatu, Brazil and 86 healthy volunteers. The brief Spiritual/Religious Coping Scale (SRCOPE) and the Duke University Religion (DUREL) Index were used as a brief measure of 'religiosity'. RESULTS: All 172 participants reported to be religious and, overall, made very little use of SRC strategies. DUREL scores were negatively associated with religious practice (P<0.01) and positive SRC (P<0.01). Age was associated with non-organisational religious activities and intrinsic religiosity (P<0.01); and income was associated with intrinsic religiosity (P<0.04). Positive SRC was negatively associated with the palliative group (P=0.03) and DUREL index (P<0.01). Negative SRC was positively associated with the palliative group (P=0.04) and negatively associated with education level (P=0.03) and practice of religion (P<0.01). CONCLUSION: All participants reported to be religious; however, their use of SRC strategies was very low. Positive religious coping was the most prevalent score. Negative religious coping was more common in the palliative care group compared to healthy volunteers. There is an association between religious coping and religiosity in palliative cancer care patients.


Asunto(s)
Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Espiritualidad , Estudios de Casos y Controles , Brasil , Religión , Adaptación Psicológica , Neoplasias/psicología
15.
BMC Palliat Care ; 22(1): 37, 2023 Apr 10.
Artículo en Inglés | MEDLINE | ID: mdl-37032372

RESUMEN

BACKGROUND: Palliative care teams work under challenging conditions in a sensitive setting with difficult tasks. The multi-professional team can play an important role. Mindfulness and compassion-based practices are used to build resilience. Our aim was to examine (1) feasibility and acceptability, (2) satisfaction and impact, and (3) opportunities and limitations of a mindfulness course. METHODS: An eight-week mindfulness and compassion course was delivered in a university-based specialized palliative care unit. A meditation teacher provided preparatory evening sessions and meditation exercises that could be integrated into daily activities. The scientific analysis of the course was based on a questionnaire developed for quality assessmentThe first two parts consisted of demographic, Likert-type, and free-text items. Part 3 consisted of learning objectives that were self-assessed after finishing the course (post-then). In the analysis, we used descriptive statistics, qualitative content analysis, and comparative self-assessment. RESULTS: Twenty four employees participated. 58% of participants attended 4 or more of the 7 voluntary mindfulness days. 91% expressed moderate to high satisfaction and would recommend the palliative care program to others. Three main categories emerged in the qualitative content analysis: providing feedback on the course, personal impact, and impact on professional life. The opportunity for self-care in a professional context was highlighted. Learning gains (CSA Gain) were high (38.5-49.4%) in terms of knowledge and techniques, moderate (26.2-34.5%) in terms of implementation of learned skills, and rather low (12.7-24.6%) in terms of changes to attitude. CONCLUSION: Our evaluation shows that the participants of a mindfulness and compassion course considered it as a feasible and welcome tool to familiarize a multi-professional palliative care team with self-care techniques. TRIAL REGISTRATION: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2018074763 (registered retrospectively on 30th July 2018).


Asunto(s)
Empatía , Atención Plena , Cuidados Paliativos , Autocuidado , Humanos , Atención Plena/métodos , Cuidados Paliativos/psicología , Estudios Retrospectivos , Autoevaluación (Psicología) , Autocuidado/métodos , Autocuidado/psicología
16.
Cancer Biother Radiopharm ; 38(7): 425-430, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-36961444

RESUMEN

The scourge of cancer mortally wounds the soul. From the time of diagnosis, the spiritual shock should be recognized, acknowledged, and addressed in concert with the personalized management strategy for the tumor. Optimal cancer care treats both body and soul. Psycho-oncology theory defines existential issues and spirituality in conceptually ambiguous terms but, in reality, such afflictions of the spirit cause great suffering in cancer patients. Patients often seek reassurance that their life has purpose and meaning, and the provision of emotional and soulful support from their oncologist is of inestimable importance to spiritual well-being. In addition to the time and resource constraints of daily clinical practice, recent challenges to the personal doctor-patient relationship include e-medicine and virtual clinical encounters, and the potential disruption to be wrought by new generation artificial intelligence. These obstacles are addressed with a view to the physician being able to continue to provide empathic compassionate care. The art of Kintsugi is invoked to offer a metaphor for restoration of the soul afflicted by cancer.


Asunto(s)
Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Relaciones Médico-Paciente , Inteligencia Artificial , Neoplasias/terapia , Neoplasias/psicología , Espiritualidad
17.
J Pain Symptom Manage ; 65(6): 562-569, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36804423

RESUMEN

CONTEXT: Spiritual pain contributes to the suffering of cancer patients. However, it is unclear whether patients seen outside of palliative care report spiritual pain and its relationship with symptom burden. OBJECTIVES: Characteristics of patients reporting spiritual pain were examined, as well as the association of spiritual pain with symptom burden and how spiritual pain affected the factor structure of the Edmonton Symptom Assessment System (ESAS). METHODS: A retrospective chart review was conducted of integrative oncology patients who completed the PROMIS10 and a modified ESAS (ESAS-FS) including financial distress and spiritual pain (pain deep in your soul/being that is not physical). Multiple logistic regression was used to assess associations between demographics and spiritual pain. T-tests compared ESAS-FS symptoms and global health for patients endorsing spiritual pain (0 vs. ≥1). Principal component analyses (oblique rotation) were also used to determine ESAS-FS symptom clusters. RESULTS: The sample (N = 1662) was mostly women (65%) and 39% endorsed spiritual pain at least ≥one. Men and older individuals were less likely to endorse spiritual pain (ps < 0.05). Presence of spiritual pain was associated with worse symptoms on the ESAS-FS and global health (ps < 0.001). The ESAS-FS had two symptom clusters, with the psychological factor including depression, anxiety, wellbeing, sleep, financial distress, and spiritual pain (Cronbach's alpha 0.78). CONCLUSION: Assessing spiritual pain and understanding the effects of its presence or absence in the context of other physical and psychosocial symptoms may provide additional opportunities for preventing exacerbation of symptoms, improving quality of life, and enhancing overall experience of care.


Asunto(s)
Oncología Integrativa , Neoplasias , Masculino , Humanos , Femenino , Calidad de Vida , Estudios Retrospectivos , Síndrome , Dolor/complicaciones , Cuidados Paliativos/psicología , Neoplasias/complicaciones , Neoplasias/terapia , Neoplasias/psicología , Evaluación de Síntomas
18.
J Palliat Care ; 38(4): 481-489, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-36793228

RESUMEN

OBJECTIVE: Living the final days of life being cared for at home is a preference expressed by many. The data on the effectiveness of home-based end-of-life care (EoLC) intervention to improve the holistic conditions of terminally ill patients are scanty. This study sought to evaluate a psychosocial home-based EoLC intervention for terminally ill patients in Hong Kong. METHODS: A prospective cohort study was conducted, applying the Integrated Palliative Care Outcome Scale (IPOS) at 3 timepoints (service intake, 1-month, and 3-months after enrollment). A total of 485 eligible, consenting terminally ill people (mean age = 75.48, SD = 11.39) were enrolled, with 40.21% (n = 195) providing data at all 3 timepoints for this study. RESULTS: Decreasing symptom severity scores were observed for all IPOS psychosocial symptoms, and most physical symptoms, over the 3 timepoints. Improvements in depression and practical concerns had the highest omnibus time effects (F > 31.92, P < .01) and T0 to T2 paired comparison effects (Cohen's d > 0.54, P < .01). Physical symptoms of weakness/lack of energy, poor mobility, and poor appetite also showed significant improvements at T1 and T2 (Cohen's d: 0.22-0.46, P < .05). Bivariate regression analyses showed that improvements in anxiety, depression, and family anxiety were associated with improvements in physical symptoms of pain, shortness of breath, weakness/lack of energy, nausea, poor appetite, and poor mobility. Patients' demographic and clinical characteristics were not associated with changes in symptoms. CONCLUSIONS: The psychosocial home-based EoLC intervention effectively improved the psychosocial and physical status of terminally ill patients, irrespective of their clinical characteristics or demographics.


Asunto(s)
Cuidados Paliativos , Cuidado Terminal , Humanos , Anciano , Estudios Prospectivos , Hong Kong , Cuidados Paliativos/psicología , Dolor , Calidad de Vida
19.
BMJ Support Palliat Care ; 13(2): 241-242, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-32581002

RESUMEN

We present a case of a 64-year-old woman with stage 1 breast cancer. She underwent a modified radical mastectomy, followed by chemotherapy. She reported physical and psychosocial suffering due to her disease and treatment. Four weekly sessions of guided 30-min mindful breathing were delivered by the palliative care team to ease her suffering. The patient reported feelings of calmness, peace and relaxation after each session, with decrease in suffering, negative emotions and physical discomfort. This is the first report on the use of guided 30-min mindful breathing in palliating suffering of a patient with cancer.


Asunto(s)
Neoplasias de la Mama , Cuidados Paliativos , Femenino , Humanos , Persona de Mediana Edad , Cuidados Paliativos/psicología , Neoplasias de la Mama/terapia , Mastectomía , Respiración , Emociones
20.
Omega (Westport) ; 87(2): 377-400, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-34039108

RESUMEN

OBJECTIVE: To review which are the most influential variables in achieving levels of psychological well-being at the end of life and to verify whether, as certain studies suggest, spirituality, resilience and social support are the pillars on which the psychological well-being construct is based. METHOD: A systematic search through the Scopus, Pubmed and PsycInfo electronic databases was carried out using keywords such as: "wellbeing" OR "psychological-well-being" AND "resilience" AND "spirituality" AND "social support" AND "palliative care" and their multiple combinations. RESULTS: Eleven studies were selected, in which terms such as spiritual well-being, absence of discomfort and quality of life were used in substitution of psychological well-being and a certain consensus was found regarding whether resilience, spirituality and social support are predictive variables of psychological well-being. CONCLUSIONS: Resilience, social support and spirituality are highly relevant variables at the end of life and contribute decisively towards psychological well-being.


Asunto(s)
Bienestar Psicológico , Resiliencia Psicológica , Humanos , Calidad de Vida/psicología , Cuidados Paliativos/psicología , Espiritualidad , Muerte
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