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2.
BMC Palliat Care ; 23(1): 139, 2024 Jun 05.
Article in English | MEDLINE | ID: mdl-38840188

ABSTRACT

BACKGROUND: This study investigates the mediating effect of meaning in life between death anxiety and attitude toward palliative care among nursing students. METHODS: We enrolled 363 undergraduate nursing students using a convenience sampling method as the respondents and conducted a survey using general information about nursing students, the Chinese version of the FATCOD-B Scale, the Chinese version of the Death Anxiety Scale, and the Chinese version of the Meaning in Life Questionnaire. The SPSS25.0 statistical software was used to analyze the mediating effect. RESULTS: The mean total attitude score toward palliative care was (104.72 ± 10.62). Death anxiety had a significant negative predictive effect on the attitude toward palliative care (ß = -0.520, P < 0.01). When the mediating variable of the presence of meaning in life was included, the negative predictive effect of death anxiety on attitude toward palliative care remained significant (ß = -0.379, P = 0.036); the mediating effect (-0.141) accounted for 27.12% of the total impact (-0.520). CONCLUSIONS: The presence of meaning in life mediates the relationship between death anxiety and attitude toward palliative care. This implies that nursing educators, through their role in educating nursing students about the meaning of life, can significantly influence the development of a positive attitude toward palliative care.


Subject(s)
Anxiety , Attitude to Death , Palliative Care , Students, Nursing , Humans , Students, Nursing/psychology , Students, Nursing/statistics & numerical data , Female , Male , Palliative Care/methods , Palliative Care/psychology , Anxiety/psychology , Surveys and Questionnaires , Young Adult , Adult , Attitude of Health Personnel , Education, Nursing, Baccalaureate/methods , Psychometrics/instrumentation , Psychometrics/methods
3.
BMC Palliat Care ; 23(1): 140, 2024 Jun 05.
Article in English | MEDLINE | ID: mdl-38840255

ABSTRACT

BACKGROUND: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly. AIMS: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care. METHODS: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions. RESULTS: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family's burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable. CONCLUSION: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.


Subject(s)
Family , Palliative Care , Terminally Ill , Humans , Palliative Care/methods , Palliative Care/psychology , Palliative Care/standards , Male , Female , Prospective Studies , Aged , Middle Aged , Surveys and Questionnaires , Family/psychology , Aged, 80 and over , Terminally Ill/psychology , Quality of Life/psychology , Adult
4.
Ann Palliat Med ; 13(3): 568-574, 2024 May.
Article in English | MEDLINE | ID: mdl-38834204

ABSTRACT

Spirituality-defined as "the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred"-plays important roles in the setting of serious illnesses such as cancer. The nature of oncologic emergencies, with their attendant imminent threat to life and urgent medical decision-making, renders more salient the frequent role of spirituality in the context of coping, spiritual needs, and medical decisions. Furthermore, these roles highlight the importance of spiritual care: recognition of and attention to patients' and their family's spirituality within medical care. Extant palliative care quality guidelines include spiritual care as a core domain of palliative care provision. Generalist spiritual care requires spiritual history-taking by clinicians and respect and integration of spirituality and spiritual values into medical care. Specialty spiritual care involves the integration of professionally trained spiritual care providers into the care of patients facing oncologic emergencies. Spiritual care is associated with better patient quality of life and greater transitions to more comfort-focused care; among family caregivers, it is associated with greater care satisfaction. Spiritual care is always patient-centered, and hence can be provided by clinicians regardless of their spiritual backgrounds. The integration of spiritual care into the care of patients and their families holds promise to advance holistic care and improve well-being in this setting of oncologic emergencies.


Subject(s)
Neoplasms , Palliative Care , Spirituality , Humans , Neoplasms/psychology , Neoplasms/therapy , Palliative Care/psychology , Quality of Life/psychology
6.
Psychooncology ; 33(5): e6346, 2024 May.
Article in English | MEDLINE | ID: mdl-38743345

ABSTRACT

OBJECTIVE: Low and middle income countries of Africa account for a disproportionate amount of the global health burden of cancer. Providing patients access to psychosocial oncology and palliative care through policy structures such as the National Cancer Control Plans (NCCP) is essential to improving the care provided to patients and their families. The first phase of this study sought to determine the extent to which palliative care and psychosocial oncology were integrated in NCCPs in African countries. METHODS: A qualitative thematic analysis of the plans was used using Nvivo, with two-raters coding and continuous team discussions. Data were organized into an infographic map showing the coverage of themes across African countries. RESULTS: Fifty-eight NCCPs and NCD plans were analyzed in the 54 countries in Africa. The findings illustrate a lack of standardization across countries' NCCPs in addressing psychosocial oncology and palliative care themes. Certain areas presented good coverage across several plans, such as barriers to access, education, awareness, and health behaviors, coordination of care, families, caregivers and community involvement, and palliative care. Other themes presented low coverage, such as doctor-patient communication, mental health, bereavement, psychosocial care, survivorship care, and traditional medicine. CONCLUSIONS: One may consider further developing NCCP areas as they pertain to psychosocial oncology and palliative care to ensure their proper place on the policy agenda for a healthier Africa.


Subject(s)
Neoplasms , Palliative Care , Qualitative Research , Humans , Palliative Care/psychology , Africa , Neoplasms/therapy , Neoplasms/psychology , Health Services Accessibility , Psycho-Oncology , Health Policy , Physician-Patient Relations , Caregivers/psychology
7.
Support Care Cancer ; 32(6): 353, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38748187

ABSTRACT

PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.


Subject(s)
Motivation , Neoplasms , Palliative Care , Humans , Palliative Care/psychology , Palliative Care/methods , Male , Female , Middle Aged , Aged , France , Neoplasms/psychology , Neoplasms/therapy , Patient Acceptance of Health Care/psychology , Aged, 80 and over , Adult , Treatment Refusal/psychology , Clinical Trials as Topic/psychology , Quality of Life , Double-Blind Method , Qualitative Research
8.
BMJ Open ; 14(5): e085632, 2024 05 10.
Article in English | MEDLINE | ID: mdl-38729755

ABSTRACT

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.


Subject(s)
Altruism , Palliative Care , Terminal Care , Humans , Terminal Care/psychology , Palliative Care/psychology , Cross-Sectional Studies , Advance Care Planning , Research Design , Decision Making , Suicide, Assisted/psychology , Surveys and Questionnaires , Communication , Qualitative Research
9.
Crit Care ; 28(1): 181, 2024 05 28.
Article in English | MEDLINE | ID: mdl-38807236

ABSTRACT

PURPOSE: Triggers have been developed internationally to identify intensive care patients with palliative care needs. Due to their work, nurses are close to the patient and their perspective should therefore be included. In this study, potential triggers were first identified and then a questionnaire was developed to analyse their acceptance among German intensive care nurses. METHODS: For the qualitative part of this mixed methods study, focus groups were conducted with intensive care nurses from different disciplines (surgery, neurosurgery, internal medicine), which were selected by convenience. Data were analysed using the "content-structuring content analysis" according to Kuckartz. For the quantitative study part, the thus identified triggers formed the basis for questionnaire items. The questionnaire was tested for comprehensibility in cognitive pretests and for feasibility in a pilot survey. RESULTS: In the qualitative part six focus groups were conducted at four university hospitals. From the data four main categories (prognosis, interprofessional cooperation, relatives, patients) with three to 15 subcategories each could be identified. The nurses described situations requiring palliative care consults that related to the severity of the disease, the therapeutic course, communication within the team and between team and patient/relatives, and typical characteristics of patients and relatives. In addition, a professional conflict between nurses and physicians emerged. The questionnaire, which was developed after six cognitive interviews, consists of 32 items plus one open question. The pilot had a response rate of 76.7% (23/30), whereby 30 triggers were accepted with an agreement of ≥ 50%. CONCLUSION: Intensive care nurses see various triggers, with interprofessional collaboration and the patient's prognosis playing a major role. The questionnaire can be used for further surveys, e.g. interprofessional triggers could be developed.


Subject(s)
Focus Groups , Palliative Care , Humans , Palliative Care/methods , Palliative Care/psychology , Focus Groups/methods , Surveys and Questionnaires , Female , Male , Adult , Middle Aged , Intensive Care Units/organization & administration , Intensive Care Units/statistics & numerical data , Attitude of Health Personnel , Qualitative Research , Germany , Nurses/psychology , Nurses/statistics & numerical data , Critical Care/methods , Critical Care/psychology , Critical Care Nursing/methods , Critical Care Nursing/standards , Critical Care Nursing/statistics & numerical data
10.
Rev Paul Pediatr ; 42: e2023178, 2024.
Article in English | MEDLINE | ID: mdl-38808870

ABSTRACT

OBJECTIVE: To grasp the meaning of perinatal palliative care for the multidisciplinary team. METHODS: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public university hospital. A semi-structured interview was conducted, which was recorded and subsequently fully transcribed. The collection took place from June 2018 to May 2019. Data were entered and exported to Atlas ti: The Qualitative Date Analysis & Research Software, version 23.1.1.0. RESULTS: Four thematic categories emerged from the data analysis: palliative care and eligible public in the view of professionals; communication between family and team in decision-making; assistance in palliative care; humanized care. CONCLUSIONS: The professionals think of palliative care in Perinatology in a similar way and perceive the difficulties of communication with the family and decision-making. They agree that it is necessary to provide greater support to the family, and to provide comfort measures, either for the non-viable fetus or for the baby eligible for palliative care.


Subject(s)
Palliative Care , Patient Care Team , Perinatal Care , Qualitative Research , Humans , Palliative Care/psychology , Female , Perinatal Care/methods , Decision Making , Male , Adult , Attitude of Health Personnel , Professional-Family Relations , Infant, Newborn , Pregnancy , Middle Aged , Interviews as Topic , Communication
11.
BMC Palliat Care ; 23(1): 125, 2024 May 21.
Article in English | MEDLINE | ID: mdl-38769557

ABSTRACT

BACKGROUND: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. METHODS: This cross-sectional study was conducted in five cities in China (Shanghai, Suzhou, Chongqing, Chengdu and Yunnan) between November 2022 and December 2022. RESULTS: The analysis included 204 participants (122 females), with 158 nurses and 46 physicians. The average knowledge, attitude and practice scores were 9.75 ± 2.90 points (possible range, 0-13 points), 38.30 ± 3.80 points (possible range, 12-60 points) and 35.48 ± 5.72 points (possible range, 9-45 points), respectively. Knowledge score was higher for physicians than for nurses (P < 0.001) and for personnel with previous training in pediatric palliative care (P = 0.005). According to structural equation modelling knowledge had a direct positive effect on attitude (ß = 0.69 [0.28-1.10], p = 0.001), and indirect on practice (ß = 0.82 [0.36-1.28], p < 0.001); attitude had significant effect on practice as well (ß = 1.18 [0.81-1.56], p < 0.001). CONCLUSIONS: There is room for improvement in the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. The findings of this study may facilitate the design and implementation of targeted education/training programs to better inform physicians and nurses in China about pediatric palliative care.


Subject(s)
Health Knowledge, Attitudes, Practice , Palliative Care , Humans , Cross-Sectional Studies , Female , Male , Palliative Care/methods , Palliative Care/standards , Palliative Care/psychology , China , Adult , Surveys and Questionnaires , Middle Aged , Health Personnel/psychology , Health Personnel/statistics & numerical data , Attitude of Health Personnel , Intensive Care Units, Pediatric/organization & administration , Intensive Care Units, Pediatric/statistics & numerical data , Intensive Care Units/organization & administration , Pediatrics/methods , Pediatrics/standards
12.
BMC Palliat Care ; 23(1): 117, 2024 May 07.
Article in English | MEDLINE | ID: mdl-38711035

ABSTRACT

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.


Subject(s)
Palliative Care , Humans , Community Participation/methods , Community Participation/psychology , Palliative Care/methods , Palliative Care/psychology , Palliative Care/standards , Terminal Care , Community Networks
13.
Palliat Med ; 38(6): 644-659, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38708863

ABSTRACT

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.


Subject(s)
Palliative Care , Parents , Psychometrics , Humans , Female , Male , Cross-Sectional Studies , Child , Palliative Care/psychology , Child, Preschool , Parents/psychology , Adolescent , Caregivers/psychology , United Kingdom , Surveys and Questionnaires , Outcome Assessment, Health Care , Cognition
14.
Respir Med ; 227: 107659, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38729528

ABSTRACT

Pulmonary Fibrosis (PF) describes a group of lung diseases characterised by progressive scarring (fibrosis). Symptoms worsen over time and include breathlessness, tiredness, and cough, giving rise to psychological distress. Significant morbidity accompanies PF, so ensuring patients' care needs are well defined and provided for, represents an important treatment strategy. The purpose of this systematic review was to synthesise what is currently known about the psychosocial morbidity, illness experience and needs of people with pulmonary fibrosis and their informal caregivers. Eight databases (MEDLINE, EMBASE, PUBMED, Cochrane database of Systematic reviews (CDSR), Web of Science Social Sciences Citation Index, PsycINFO, PsycARTICLES and CINAHL) were used to identify studies exploring the supportive needs of adults with PF and/or their caregivers. Methodological quality was assessed using the Mixed Methods Appraisal Tool. 53 studies were included, the majority using qualitative methodology (79 %, 42/53), 6 as part of mixed methodological studies. Supportive care needs were mapped to eight domains using an a priori framework analysis. Findings highlight a lack of psychological support throughout the course of the illness, misconceptions about and barriers to, the provision of palliative care despite its potential positive impacts. Patients and caregivers express a desire for greater disease specific education and information provision throughout the illness. Trials of complex interventions are needed to address the unique set of challenges for patients and carers living with PF.


Subject(s)
Caregivers , Pulmonary Fibrosis , Humans , Caregivers/psychology , Pulmonary Fibrosis/psychology , Pulmonary Fibrosis/therapy , Palliative Care/psychology , Social Support , Adult , Male , Female , Quality of Life
15.
Palliat Med ; 38(6): 679-688, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38813757

ABSTRACT

BACKGROUND: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. AIM: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. DESIGN: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. SETTING: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. RESULTS: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. CONCLUSIONS: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals.


Subject(s)
Grounded Theory , Palliative Care , Parents , Prenatal Diagnosis , Humans , Female , Pregnancy , Palliative Care/psychology , Parents/psychology , Adult , Prenatal Diagnosis/psychology , Qualitative Research , Male , Health Personnel/psychology , Attitude of Health Personnel , Middle Aged , Grief
16.
Ann Palliat Med ; 13(3): 513-530, 2024 May.
Article in English | MEDLINE | ID: mdl-38769801

ABSTRACT

BACKGROUND: The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups. METHODS: This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed. RESULTS: Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden. CONCLUSIONS: This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies influential factors that can affect the perceived intensity of symptom burden, primarily the main type of terminal illness and patient's age. Tailored care support and improved clinical care should be implemented, particularly for high-risk groups such as patients with non-cancer terminal illnesses and older aged patients. These findings contribute to existing literature and emphasize the need for comprehensive and individualized care in EoLC.


Subject(s)
Terminally Ill , Humans , Male , Female , Cross-Sectional Studies , Aged , Terminally Ill/psychology , Middle Aged , Aged, 80 and over , Hong Kong , Palliative Care/psychology , Terminal Care/psychology , Cost of Illness
17.
BMC Palliat Care ; 23(1): 114, 2024 May 02.
Article in English | MEDLINE | ID: mdl-38698367

ABSTRACT

OBJECTIVES: To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. METHOD: A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. RESULTS: 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner's experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. CONCLUSION: VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC.


Subject(s)
COVID-19 , Palliative Care , Humans , Cross-Sectional Studies , Palliative Care/methods , Palliative Care/standards , Palliative Care/psychology , Male , COVID-19/psychology , Female , Middle Aged , Adult , Health Personnel/psychology , Surveys and Questionnaires , Medical Oncology/methods , Medical Oncology/standards , Attitude of Health Personnel , SARS-CoV-2 , Pandemics , Remote Consultation/methods
18.
Dtsch Med Wochenschr ; 149(8): 447-453, 2024 Apr.
Article in German | MEDLINE | ID: mdl-38565118

ABSTRACT

Comprehensive Cancer Care stands for a concept of broad care providing substantial benefits to cancer patients. Beside prevention of cancer as first pillar and curative therapy as second pillar, comprehensive care also encompasses palliative care representing a third pillar providing service for incurable cancer patients burdened with physical symptoms and psychological, social and spiritual needs. This article describes the integration of palliative medicine into comprehensive cancer care for patients with gastrointestinal cancer.


Subject(s)
Gastrointestinal Neoplasms , Neoplasms , Humans , Palliative Care/psychology , Neoplasms/therapy , Gastrointestinal Neoplasms/therapy , Quality of Life/psychology
19.
BMC Palliat Care ; 23(1): 106, 2024 Apr 23.
Article in English | MEDLINE | ID: mdl-38649882

ABSTRACT

BACKGROUND: As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter tradition in China, although it is growing in the last decade. Sampling and comparing the perspectives of these pediatricians could be insightful for both countries. Therefore, we sampled and compared perspectives of pediatricians in China and Belgium toward PPC, and explored factors influencing their perspectives. METHODS: We conducted a cross-sectional online survey using the validated Pediatric Palliative Care Attitude Scale (PPCAS). Over a five-month period, we recruited pediatricians practicing in China (C) and Flanders (F), Belgium. Convenience sampling and snowballing were used. We analyzed data with descriptive statistics, and evaluated group differences with univariate, multivariate and correlation tests. RESULTS: 440 complete surveys were analyzed (F: 115; C: 325). Pediatricians in both regions had limited PPC experience (F: 2.92 ± 0.94; C: 2.76 ± 0.92). Compared to Flemish pediatricians, Chinese pediatricians perceived receiving less unit support (F: 3.42 ± 0.86; C: 2.80 ± 0.89); perceived PPC less important (F: 4.70 ± 0.79; C: 4.18 ± 0.94); and faced more personal obstacles while practicing PPC (F: 3.50 ± 0.76; C: 2.25 ± 0.58). Also, select socio-demographic characteristics (e.g., experiences caring for children with life-threatening condition and providing PPC) influenced pediatricians' perspectives. Correlational analyses revealed that pediatricians' PPC experiences significantly correlated with perceived unit support (ρF = 0.454; ρC=0.661). CONCLUSIONS: Chinese pediatricians faced more barriers in practicing PPC. Expanding PPC experiences can influence pediatricians' perspectives positively, which may be beneficial for the child and their family.


Subject(s)
Attitude of Health Personnel , Palliative Care , Pediatricians , Adult , Female , Humans , Male , Middle Aged , Belgium , China , Cross-Sectional Studies , Palliative Care/methods , Palliative Care/psychology , Palliative Care/standards , Pediatricians/psychology , Pediatricians/statistics & numerical data , Pediatrics/methods , Pediatrics/standards , Surveys and Questionnaires
20.
Front Public Health ; 12: 1330370, 2024.
Article in English | MEDLINE | ID: mdl-38596518

ABSTRACT

Introduction: Many of the essential practices in palliative care (PC) had to be adapted to the COVID-19 pandemic. This global spread of the infectious respiratory disease, caused by SARS-CoV-2, created unprecedented obstacles. The aim of this research was to comprehensively assess the experiences and perceptions of healthcare professionals, individuals, and families in palliative and end-of-life situations during the COVID-19 pandemic. Methods: A scoping review was conducted using the databases CINAHL Complete, MEDLINE, Scopus, SciELO, Cochrane Central Register of Controlled Trials, Psychology and Behavioral Sciences, MEDIClatina, and Portugal's Open Access Scientific Repository. The review followed the JBI® methodological approach for scoping reviews. Results: Out of the initially identified 999 articles, 22 studies were included for analysis. The deprivation of relationships due to the safety protocols required to control the spread of COVID-19 was a universally perceived experience by healthcare professionals, individuals in PC, and their families. Social isolation, with significant psychological impact, including depersonalization and despair, was among the most frequently reported experiences by individuals in palliative situation. Despite healthcare professionals' efforts to mitigate the lack of relationships, the families of these individuals emphasized the irreplaceability of in-person bedside contact. Systematic review registration: https://osf.io/xmpf2/.


Subject(s)
COVID-19 , Palliative Care , Humans , Palliative Care/psychology , COVID-19/therapy , COVID-19/epidemiology , Pandemics , SARS-CoV-2 , Health Personnel/psychology
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