scholarly journals Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation

2020 ◽  
pp. archdischild-2020-320189
Author(s):  
Sarah Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Jeremy Dale
Keyword(s):  
Palliative Care ◽  
Healthcare System ◽  
Interpersonal Relationships ◽  
Healthcare Professionals ◽  
Family Members ◽  
Healthcare Services ◽  
Diverse Range ◽  
Specialist Services ◽  
Qualitative Interview Study ◽  
Life Threatening

ObjectivesTo understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.DesignLongitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.SettingCommunity and hospital settings in the West Midlands, UK.ParticipantsChildren with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.Findings31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of ‘fighting’ a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child’s condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family’s emotional burden.ConclusionsThere is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.

scholarly journals The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

Business Ethics and the Greek Healthcare System

2018 ◽  
pp. 100-127 ◽  
Author(s):  
Vaitsa Giannouli
Keyword(s):  
Business Ethics ◽  
Healthcare System ◽  
Healthcare Professionals ◽  
Maslach Burnout Inventory ◽  
Healthcare Services ◽  
Ethical Values ◽  
Structured Interviews ◽  
Future Directions ◽  
Emotional Aspects ◽  
Job Affect

This chapter provides a review not only of classic literature on healthcare business and ethics, but also an introduction to the legal changes in the Greek healthcare system with ethical values on focus. A study examining in both a quantitative and qualitative way what the Greek healthcare experts think and feel about ethics and healthcare services presents the factors that shape attitudes towards ethical values from the viewpoint of the healthcare professionals. For this reason, 34 semi-structured interviews, accompanied by the administration of perceived cohesion scale, generalized immediacy scale, job affect scale, state anxiety inventory, Maslach burnout inventory, and the attitude towards business ethics questionnaire revealed that healthcare professionals do have knowledge of ethical values and moral responsibility, but no clear connections with specific emotional aspects were found. The chapter concludes with future directions on how business ethics can be further examined and applied.

scholarly journals Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review

2019 ◽  
Vol 34 (3) ◽  
pp. 387-402 ◽  
Author(s):  
Sarah Mitchell ◽  
Karina Bennett ◽  
Andrew Morris ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Realist Review ◽  
Health Concern ◽  
Service Development ◽  
Children And Families ◽  
Family Outcomes ◽  
Number Of Children ◽  
Palliative Care Services ◽  
Life Threatening

Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.

scholarly journals Telemedicine in Slovenia

2021 ◽  
Author(s):  
Živa Rant ◽  
Keyword(s):  
Healthcare Professional ◽  
Healthcare System ◽  
Business Processes ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
The State ◽  
Research Participants ◽  
The Future

Telemedicine could be one of the solutions for challenges in healthcare, especially in this time of the Covid-19 pandemic. The results of the research about the state of telemedicine services in Slovenia are presented in this article. We found several telemedicine solutions in Slovenian healthcare. Metadata for them were collected. The solutions are placed in groups of telemonitoring, provision of healthcare services by remotely connecting patients with a doctor or healthcare professional and remote cooperation for the patient's treatment between doctors or healthcare professionals who are physically at different locations. The opinions of the research participants regarding the challenges associated with telemedicine services in Slovenia were also collected. They are placed in three main groups: financing, healthcare system and healthcare professionals. Telemedicine is a necessity and the future of Slovenian healthcare services. If a solution is to be applied successfully, business processes must be changed so that a practically useful service can arise from the solution.

scholarly journals The contribution of healthcare services to quality at the end of a patient’s life cycle

2020 ◽  
Vol 13 (3) ◽  
pp. 29-42
Author(s):  
Aggeliki Katsarou ◽  
George Intas ◽  
Charalampos Platis ◽  
Evgenia Polidoropoulou ◽  
George Pierrakos
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Environment ◽  
Quantitative Methods ◽  
Healthcare Professionals ◽  
Good Health ◽  
Home Care Services ◽  
Healthcare Services ◽  
Quality Model ◽  
Qualitative And Quantitative Methods

Introduction: Over the last decade it has been highlighted that palliative care is important for all life- threatening diseases. Purpose: The purpose of this study was to explore the perception of end-of-life patients and their carers about existing health care structures and healthcare professionals. Methods: This study adopted a mixed research methodology using both qualitative and quantitative methods. The population of this study was end-of-life patients and their caregivers. For data collection and interviews, a questionnaire was used which was created within the research part of the project “Development of a model of quality model in health education, self-care and rehabilitation of patients with neoplasms”. Results: The study sample consisted of 46 patients. Relatively limited activity, but ambulatory, were the 32.6% of patients. About half of the patients (56.5%) had access to home care services. Patients argued that healthcare professionals can guide them to better control their pain (93.5%) and symptoms (89.1%). Most carers were women (69.6%). Emotional disturbances were recorded in 23.9% and 53.3% rated good health. To improve care, most caregivers reported psychological support, more frequent contact with the family environment, and knowledge of the existence of specific structures/services. Conclusions: It is important to develop healthcare policies, which will include the development of palliative care, especially for family caregivers of end-of-life cancer patients.

scholarly journals Healthcare Professionals’ Perceptions of Support for Family Members in Specialist Palliative Care Inpatient Units – a Qualitative Descriptive Study

2021 ◽  
Author(s):  
Anu Soikkeli-Jalonen ◽  
Kaisa Mishina ◽  
Heli Virtanen ◽  
Andreas Charalambous ◽  
Elina Haavisto
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Family Members ◽  
Family Care ◽  
Essential Element ◽  
Focus Group Interviews ◽  
Qualitative Descriptive ◽  
Group Interviews ◽  
Additional Support ◽  
Inpatient Units

Abstract Purpose: The aim of this study was to describe healthcare professionals’ (HCPs) perceptions of the support for family members (FMs) of palliative care cancer patients in specialist palliative inpatient units. Methods: A qualitative descriptive design was applied. The data were collected with focus group interviews and analysed with inductive content analysis.Results: Information sharing was recognised as an essential element of support. Also, emotional support, discussions and additional support were offered. Practices to improve support of FMs included a possibility to allocate recourses to the families, systematic support and strengthening HCPs’ competence in family care. Conclusions: The opportunities to implement support focusing directly on FMs were described as restricted. Organisational resources were limited in inpatient units. HCPs felt that they did not have enough time to spend with FMs, and the facilities were also not always suitable to support FMs’ presence and participation. Therefore, there is a need for systematic support and interventions for FMs that could be implemented in inpatient units by the HCPs as a part of the daily care. Furthermore, additional training for the HCPs in palliative family care is needed.

scholarly journals Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e028548 ◽  
Author(s):  
Sarah Mitchell ◽  
Jenna L Spry ◽  
Emma Hill ◽  
Jane Coad ◽  
Jeremy Dale ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Qualitative Interview ◽  
Life Care ◽  
Parental Experiences ◽  
Qualitative Interview Study ◽  
Life Threatening ◽  
Care Decision

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.

scholarly journals Care for critically and terminally ill patients and moral distress of physicians and nurses in tertiary hospitals in South Korea: A qualitative study

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260343
Author(s):  
Jiyeon Kang ◽  
Eun Kyung Choi ◽  
Minjeong Seo ◽  
Grace S. Ahn ◽  
Hye Youn Park ◽  
...  
Keyword(s):  
Palliative Care ◽  
South Korea ◽  
Terminal Care ◽  
Healthcare Professionals ◽  
Moral Distress ◽  
Terminally Ill ◽  
Terminally Ill Patients ◽  
Clinical Culture ◽  
Tertiary Hospitals ◽  
Life Threatening

Physicians and nurses working in acute care settings, such as tertiary hospitals, are involved in various stages of critical and terminal care, ranging from diagnosis of life-threatening diseases to care for the dying. It is well known that critical and terminal care causes moral distress to healthcare professionals. This study aimed to explore moral distress in critical and terminal care in acute hospital settings by analyzing the experiences of physicians and nurses from various departments. Semi-structured in-depth interviews were conducted in two tertiary hospitals in South Korea. The collected data were analyzed using grounded theory. A total of 22 physicians and nurses who had experienced moral difficulties regarding critical and terminal care were recruited via purposive maximum variation sampling, and 21 reported moral distress. The following points were what participants believed to be right for the patients: minimizing meaningless interventions during the terminal stage, letting patients know of their poor prognosis, saving lives, offering palliative care, and providing care with compassion. However, family dominance, hierarchy, the clinical culture of avoiding the discussion of death, lack of support for the surviving patients, and intensive workload challenged what the participants were pursuing and frustrated them. As a result, the participants experienced stress, lack of enthusiasm, guilt, depression, and skepticism. This study revealed that healthcare professionals working in tertiary hospitals in South Korea experienced moral distress when taking care of critically and terminally ill patients, in similar ways to the medical staff working in other settings. On the other hand, the present study uniquely identified that the aspects of saving lives and the necessity of palliative care were reported as those valued by healthcare professionals. This study contributes to the literature by adding data collected from two tertiary hospitals in South Korea.

scholarly journals “We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Meesters ◽  
Bettina Grüne ◽  
Claudia Bausewein ◽  
Eva Schildmann
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Side Effect ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Qualitative Interview Study ◽  
The Family ◽  
Framework Approach ◽  
Sedative Drugs

Abstract Background Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of ‘sedative drugs’ and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. Methods Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. Results Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient’s suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term ‘sedation’ with inducing a state of unconsciousness, which should be avoided. Conclusion German healthcare professionals in general palliative care seem to negatively connote the term ‘sedation’. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed.

scholarly journals An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

2020 ◽  
Author(s):  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Claire Anderson ◽  
Christina Faull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Memory Loss ◽  
Patient Choice ◽  
Dose Administration ◽  
Community Healthcare ◽  
Controlled Drugs ◽  
Qualitative Interview Study ◽  
At Home

Abstract Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell.Aim: To explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.Methods: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties. Results: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.Conclusions: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, ‘outside the box’ thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.

Sign in / Sign up

Export Citation Format

Share Document