Health care Professionals' Experiences and Needs When Delivering End-of-Life Care to Children: A Qualitative Study.
Ontology highlight
ABSTRACT:
SUBMITTER: Bergstrasser E
PROVIDER: S-EPMC5555493 | biostudies-other | 2017
REPOSITORIES: biostudies-other
Similar Datasets
Project description:AimTo explore social and healthcare professionals' experiences of end-of-life (EOL) care planning and documentation in palliative care.DesignA qualitative study with narrative methodology.MethodsA narrative method with interviews was used. Data were collected from purposively selected registered nurses (n = 18), practical nurses (n = 5), social workers (n = 5) and physicians (n = 5) working in palliative care unit in five hospitals in three hospital districts. Content analysis within narrative methodologies was undertaken.ResultsTwo main categories - patient-oriented EOL care planning and multi-professional EOL care planning documentation- were formed. Patient-oriented EOL care planning included treatment goals planning, disease treatment planning and EOL care setting planning. Multi-professional EOL care planning documentation included healthcare professionals' and social professionals' perspectives. Healthcare professionals' perspectives on EOL care planning documentation included benefits of structured documentation and poor support of electronic health record (EHR) for documentation. Social professionals' perspective on EOL care planning documentation included usefulness of multi-professional documentation and externality of social professionals in multi-professional documentation.ConclusionThe results of this interdisciplinary study demonstrated a gap between what healthcare professionals consider important in Advance Care Planning (ACP), that is, proactive, patient-oriented and multi-professional EOL care planning and the ability to access and document this in a useful and accessible way in the EHR.Relevance to clinical practiceKnowledge of the patient-centered EOL care planning and multi-professional documentation processes and their challenges are prerequisites for documentation to be supported by technology.Reporting methodThe Consolidated Criteria for Reporting Qualitative Research checklist was followed.Patient or public contributionNo patient or public contribution.
| S-EPMC10416050 | biostudies-literature
Project description:Background: The literature on professionals' perceptions of dignity at the end-of-life (EOL) shows that there is a need for studies set in different cultural contexts. Lithuania represents one of these little-studied contexts. The aim of this study is to understand professionals' attitudes, experiences, and suggestions concerning EOL dignity to provide knowledge upon which efforts to improve EOL care can be grounded. The research questions are "How do Lithuanian health care professionals understand the essence of dignity at the end-of-life of terminally ill patients?" and "How do they believe that dignity at the EOL can be enhanced?". Materials and Methods: The study was exploratory and descriptive. It employed an interpretive phenomenological method to understand the essence of the phenomenon. Lightly structured interviews were conducted with professionals who had EOL experience, primarily with elderly and late middle-aged patients. from medicine, nursing, social work, and spiritual services. The interviews were primarily conducted by audiovisual means due to pandemic restrictions. Using a constant comparative method, the research team systematically codified text and developed themes by consensus after numerous analytic data iterations. Results: Four primary themes about EOL dignity were identified: Physical Comfort, Place of Care and Death, Effects of Death as a Taboo Topic, and Social Relations and Communication. A fifth, overarching theme, Being Heard, included elements of the primary themes and was identified as a key component or essence of dignity at the EOL. Conclusions: Patient dignity is both a human right and a constitutional right in Lithuania, but in many settings, it remains an aspiration rather than a reality. Being Heard is embedded in internationally recognized patient-centered models of EOL care. Hearing and acknowledging individuals who are dying is a specific skill, especially with elderly patients. Building the question "Is this patient being heard?" into practice protocols and conventions would be a step toward enhancing dignity at the EOL.
| S-EPMC8707950 | biostudies-literature
Project description:BackgroundThe number of remote video consultations between doctors and patients has increased during the last few years and especially during the COVID-19 pandemic. The health care service is faced with rising rates of chronic illness and many patients who are more confident in self-management of their illnesses. In addition, there is an improved long-term outlook for serious conditions, such as cancer, that might require flexibility in everyday life.ObjectiveThis study aimed to investigate how medical doctors in the outpatient clinic use and experience the use of video consultations with hematological patients, with a focus on relational and organizational aspects.MethodsThe study was designed as an explorative and qualitative study. Data were collected via participant observations and focus group interviews with medical doctors.ResultsThe study identified possibilities and barriers in relation to adapting to the alternative way of meeting patients in the clinical setting. One of the main findings in this study is that the medical doctors were afraid that they missed important observations, as they were not able to perform a physical examination, if needed. They also emphasized that handshake and eye contact were important in order to get an overall impression of the patient's situation. It also became clear that the medical doctors used body language a lot more during video consultation compared with consultation in a physical setting. The medical doctors found the contact with the patients via the screen to be good, and the fact that the technology was working well made them feel comfortable with the video consultation.ConclusionsIn this study, we found that the medical doctors were able to maintain good contact with the patients despite the screen and were able to assess the patients in a satisfying manner. However, there were still uncertainties among some doctors about the fact that they could not examine the patients physically. New knowledge about how to use gestures and body language during video consultation was obtained.
| S-EPMC8339982 | biostudies-literature
Project description:BackgroundIntegrated primary care teams are ideally positioned to support the mental health care needs arising during the COVID-19 pandemic. Understanding how COVID-19 has affected mental health care delivery within primary care settings will be critical to inform future policy and practice decisions during the later phases of the pandemic and beyond. The objective of our study was to describe the impact of the COVID-19 pandemic on primary care teams' delivery of mental health care.MethodsA qualitative study using focus groups conducted with primary care teams in Ontario, Canada. Focus group data was analysed using thematic analysis.ResultsWe conducted 11 focus groups with 10 primary care teams and a total of 48 participants. With respect to the impact of the COVID-19 pandemic on mental health care in primary care teams, we identified three key themes: i) the high demand for mental health care, ii) the rapid transformation to virtual care, and iii) the impact on providers.ConclusionsFrom the outset of the COVID-19 pandemic, primary care quickly responded to the rising mental health care demands of their patients. Despite the numerous challenges they faced with the rapid transition to virtual care, primary care teams have persevered. It is essential that policy and decision-makers take note of the toll that these demands have placed on providers. There is an immediate need to enhance primary care's capacity for mental health care for the duration of the pandemic and beyond.
| S-EPMC8248293 | biostudies-literature
Project description:Background'Most patients want to die at home' is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals' experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway.MethodsThis is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically.ResultsHealth care professionals did their utmost to fulfil patients' wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers' important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include 'home place' in the form of local health care facilities.ConclusionsProviding palliative care in patients' homes is professionally and ethically challenging, and health care professionals' dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses' pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.
| S-EPMC10698939 | biostudies-literature
Project description:ObjectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).DesignAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.SettingA PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK.Participants17 parents of 11 children who had died in the PICU.ResultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a 'place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU.Conclusions and implicationsThe death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.
| S-EPMC6528052 | biostudies-literature
Project description:BackgroundSymptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.MethodsThe PeolcPSP data (n =?1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach.ResultsFive themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.ConclusionsThis study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.
| S-EPMC5901670 | biostudies-literature
Project description:BackgroundHealth policy in many countries directs treatment to the lowest effective care level and encourages collaboration between primary and specialist mental health care. A number of models for collaborative care have been developed, and patient benefits are being reported. Less is known about what enables and prevents implementation and sustainability of such models regarding the actions and attitudes of stakeholders on the ground. This article reports from a qualitative sub-study of a cluster-RCT testing a model for collaborative care in Oslo, Norway. The model involved the placement of psychologists and psychiatrists from a community mental health centre in each intervention GP practice. GPs could seek their input or advice when needed and refer patients to them for assessment (including assessment of the need for external services) or treatment.MethodsWe conducted in-depth qualitative interviews with GPs (n = 7), CMHC specialists (n = 6) and patients (n = 11) in the intervention arm. Sample specific topic guides were used to investigate the experience of enablers and barriers to the collaborative care model. Data were subject to stepwise deductive-inductive thematic analysis.ResultsParticipants reported positive experiences of how the model improved accessibility. First, co-location made GPs and CMHC specialists accessible to each other and facilitated detailed, patient-centred case collaboration and learning through complementary skills. The threshold for patients' access to specialist care was lowered, treatment could commence early, and throughput increased. Treatment episodes were brief (usually 5-10 sessions) and this was too brief according to some patients. Second, having experienced mental health specialists in the team and on the front line enabled early assessment of symptoms and of the type of treatment and service that patients required and were entitled to, and who could be treated at the GP practice. This improved both care pathways and referral practices. Barriers revolved around the organisation of care. Logistical issues could be tricky but were worked out. The biggest obstacle was the funding of health care at a structural level, which led to economic losses for both the GP practices and the CMHC, making the model unsustainable.ConclusionsParticipants identified a range of benefits of collaborative care for both patients and services. However, the funding system in effect penalises collaborative work. It is difficult to see how policy aiming for successful, sustainable collaboration can be achieved without governments changing funding structures.Trial registrationClinicalTrials.gov identifier: NCT03624829.
| S-EPMC7487713 | biostudies-literature
Project description:BackgroundOne reason for the introduction of digital technologies into health care has been to try to improve safety and patient outcomes by providing real-time access to patient data and enhancing communication among health care professionals. However, the adoption of such technologies into clinical pathways has been less examined, and the impacts on users and the broader health system are poorly understood. We sought to address this by studying the impacts of introducing a digitally enabled care pathway for patients with acute kidney injury (AKI) at a tertiary referral hospital in the United Kingdom. A dedicated clinical response team-comprising existing nephrology and patient-at-risk and resuscitation teams-received AKI alerts in real time via Streams, a mobile app. Here, we present a qualitative evaluation of the experiences of users and other health care professionals whose work was affected by the implementation of the care pathway.ObjectiveThe aim of this study was to qualitatively evaluate the impact of mobile results viewing and automated alerting as part of a digitally enabled care pathway on the working practices of users and their interprofessional relationships.MethodsA total of 19 semistructured interviews were conducted with members of the AKI response team and clinicians with whom they interacted across the hospital. Interviews were analyzed using inductive and deductive thematic analysis.ResultsThe digitally enabled care pathway improved access to patient information and expedited early specialist care. Opportunities were identified for more constructive planning of end-of-life care due to the earlier detection and alerting of deterioration. However, the shift toward early detection also highlighted resource constraints and some clinical uncertainty about the value of intervening at this stage. The real-time availability of information altered communication flows within and between clinical teams and across professional groups.ConclusionsDigital technologies allow early detection of adverse events and of patients at risk of deterioration, with the potential to improve outcomes. They may also increase the efficiency of health care professionals' working practices. However, when planning and implementing digital information innovations in health care, the following factors should also be considered: the provision of clinical training to effectively manage early detection, resources to cope with additional workload, support to manage perceived information overload, and the optimization of algorithms to minimize unnecessary alerts.
| S-EPMC6693304 | biostudies-literature
Project description:BackgroundParkinson's disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals' experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands.MethodsThis was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: "In the past 2 years, did you treat or support a person with PD who subsequently died?" The data were analyzed by thematic text analysis.ResultsHealth care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons' needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity.ConclusionsHealth care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons' preferences. Additional training can help to become more knowledgeable and confident.
| S-EPMC6617627 | biostudies-literature