The integration of a person-centered approach in palliative care

AbstractObjective:The philosophy underlying palliative care places the respect of patients and their autonomy at the heart of clinical practice. A study was conducted at a palliative care facility to document changes that occurred after the integration of a person-centered approach focusing on human freedom (which is linked to autonomy): the humanbecoming school of thought. It aimed to describe changes observed in the beliefs and practices of healthcare providers, the concept and respect of autonomy by healthcare providers, care and respect of autonomy experienced by patients' relatives, and consideration of patients' wishes through their documentation.Method:The method adopted consisted of a pre-project – process – post-project descriptive qualitative design and was inspired by teaching-learning and mentoring models. Data were collected from 51 healthcare providers and 10 relatives through semistructured interviews and from the medical records of 30 patients during the pre- and post-project phases. They were analyzed and compared at the end of the study. The process phase consisted of offering training sessions and mentoring, encouraging the involvement of healthcare providers, and cocreating integration and care tools.Results:While the analysis exposed some discrepancies with the language of the approach and differences between nurses and other healthcare providers, it revealed, above all, similarities in the changes observed between the different sources of data. The focus moved from being task-centered to being person-centered; the affirmation of the priority of respecting patients' choices, desires, and needs; a presence shifting from being available to true listening; the affirmation of following the ever-changing rhythm of the patient; and a notion of respect of autonomy now including the other.Significance of results:In line with the philosophy of palliative care, the project demonstrated that the integration of the humanbecoming approach can result in changes that contribute to the development of a more person-centered practice.

Download Full-text

Managing cancer in context of pandemic: a qualitative study to explore the emotional and behavioural responses of patients with cancer and their caregivers to COVID-19

BMJ Open ◽

10.1136/bmjopen-2020-041070 ◽

2021 ◽

Vol 11 (1) ◽

pp. e041070

Author(s):

Jace Ming Xuan Chia ◽

Zack Zhong Sheng Goh ◽

Zi Yang Chua ◽

Kennedy Yao Yi Ng ◽

Diana Ishak ◽

...

Keyword(s):

Healthcare Providers ◽

Care Facility ◽

Personal Control ◽

Emotional Impact ◽

Digital Platforms ◽

Face To Face ◽

Patients With Cancer ◽

Healthcare Experience ◽

Semistructured Interviews ◽

Life Sustaining Treatment

ObjectivesHaving to access life-sustaining treatment during the emerging COVID-19 outbreak has placed patients with cancer at an especially vulnerable position notwithstanding their immunocompromised condition. The present study aimed to elucidate cancer patients’ and their caregivers’ experiences during this outbreak.DesignFace-to-face semistructured interviews were conducted.SettingA tertiary cancer care facility.Participants16 patients with cancer and 14 caregivers. Inclusions criteria were: (A) diagnosed with cancer, (B) receiving active treatment or follow-ups, (C) aged 21 years and above and (D) fluent in English or Mandarin.ResultsThematic analysis was conducted. Five themes were identified: heightened sense of threat, impact on healthcare experience, responsibility falls on oneself, striving for normalcy and sense of safety and trust. Heightened threat of COVID-19 was more pronounced in patients and linked to vulnerability and fear, uncertainty and actions of socially irresponsible others. Dominant in their healthcare experience was prioritising cancer and treatment amidst heightened threat and anticipatory worry about treatment disruptions. Both noted on the importance of taking responsibility for one’s health, with caregivers reporting a reinforced sense of duty towards patients. They strived to maintain normalcy by viewing COVID-19 as beyond personal control, downplaying and living life as usual. Their resolve was supported by a sense of safety from the actions of authorities, hospitals and trust towards healthcare providers.ConclusionsCancer intensifies threat and the emotional impact of COVID-19 and may trigger specific concerns related to treatment. Psychoeducation interventions led by healthcare providers over digital platforms could help address cancer-specific concerns and support patients and caregivers during the pandemic.

Download Full-text

Providing Palliative Care in the Medical ICU: A Qualitative Study of MICU Physicians' Beliefs and Practices

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118771378 ◽

2018 ◽

Vol 35 (10) ◽

pp. 1309-1313 ◽

Cited By ~ 5

Author(s):

Brittany Gatta ◽

Jessica Turnbull

Keyword(s):

Palliative Care ◽

Critical Care ◽

Qualitative Study ◽

Interrater Reliability ◽

Integrative Model ◽

Personal Satisfaction ◽

Academic Hospital ◽

Beliefs And Practices ◽

Semistructured Interviews ◽

Enhance Patient Care

Context: With the current and projected shortage of palliative care (PC) specialists, an integrative model of PC will be needed to meet the needs of patients in intensive care units (ICUs). Prior studies of PC interventions suggest that success depends upon meeting the needs of individual institutions or ICUs. Objective: The objective of this study was to qualitatively explore the beliefs and practices of one institution’s medical ICU (MICU) physicians in regard to providing an integrative model of PC. Methods: This qualitative study used semistructured interviews of 17 physicians within a Department of Allergy, Pulmonary, and Critical Care Medicine at one large academic hospital. Interviews were conducted, transcribed, and coded according to qualitative research methods. Selected interviews were tested for interrater reliability and negotiated agreeability. Results: All critical care physicians interviewed affirmed that providing PC was part of their job, and the majority expressed that providing PC gave them professional or personal satisfaction. Physicians also identified many ways that PC consultants enhance patient care in the MICU. They discussed several motivations for obtaining a PC consult, with the most frequently acknowledged motivation being lack of time. Conclusion: Developing an integrative model of PC in the ICU ought to take into account both studied interventions shown likely to be effective in the ICU setting and the specific needs and barriers to PC in that unit. This study demonstrates one way that needs and barriers can be identified and provides important findings that might be applicable to other institutions.

Download Full-text

Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211012605 ◽

2021 ◽

pp. 104990912110126

Author(s):

Valeria Cardenas ◽

Anna Rahman ◽

Yujun Zhu ◽

Susan Enguidanos

Keyword(s):

Palliative Care ◽

Controlled Trial ◽

Insurance Coverage ◽

Healthcare Providers ◽

Health Condition ◽

Insurance Companies ◽

Structured Interviews ◽

Care Services ◽

Home Based ◽

Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

Download Full-text

Young adults’ perceptions of living with atopic dermatitis in relation to the concept of self-management: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-044777 ◽

2021 ◽

Vol 11 (6) ◽

pp. e044777

Author(s):

Susanne Lundin ◽

Marina Jonsson ◽

Carl-Fredrik Wahlgren ◽

Emma Johansson ◽

Anna Bergstrom ◽

...

Keyword(s):

Young Adults ◽

Atopic Dermatitis ◽

Qualitative Study ◽

Healthcare Providers ◽

Transition Process ◽

Population Based ◽

Self Management ◽

School Age ◽

Perceived Availability ◽

Semistructured Interviews

ObjectivesLearning to take control of one’s health is an important part of the transition from adolescence to adulthood. This study aimed to explore young adults’ perceptions of living with atopic dermatitis (AD) in relation to the concept of self-management.DesignA qualitative study with an inductive approach was performed through semistructured interviews (n=15). The interviews were recorded, transcribed verbatim and analysed with systematic text condensation.ParticipantsYoung adults (mean age 23,4 years) with persistent AD in a longitudinal population-based birth cohort. To capture experience of living with persistent AD (preschool/school-age onset) of different severity (mild to severe/very severe), a purposive selection was performed. In total, 15 young adults were included. Persistent AD (preschool/school-age onset) was defined as dry skin in combination with itchy rash of typical localisation in the 12 months preceding the 16-year and the 24-year follow-ups. Severity was self-assessed using the Patient Oriented Eczema Measure.ResultsDespite having experience of AD since childhood, the respondents expressed uncertainty about treatment and how it affected their bodies. Their uncertainties and feelings affected how they used topical corticosteroids. The respondents emphasised that they perceived availability of healthcare and knowledge about treatment of AD among healthcare providers to be limited. The participants did not state any experiences of support to self-management from healthcare, which affect young adults’ possibilities to take full control of their AD care.ConclusionsYoung adults with preschool/school-age onset of AD are unsure how to treat and manage the disease. One explanation may be insufficient transition process.

Download Full-text

“Self-Perpetuating Mechanism” in Experiences Stimulating Academic Teachers to Creative Didactic Work - Research Report

Creativity Theories – Research – Applications ◽

10.2478/ctra-2020-0007 ◽

2020 ◽

Vol 7 (1) ◽

pp. 107-122

Author(s):

Zofia Okraj

Keyword(s):

Interpretative Phenomenological Analysis ◽

Positive Emotions ◽

Systems Approach ◽

Methodological Approach ◽

Research Report ◽

Educational Goals ◽

Evolving Systems ◽

Semistructured Interviews ◽

Academic Teachers ◽

Teaching Learning

Abstract Objective: The main aim of paper is to present results from research concerning creative didactic work understood as consciously taken actions whose aim is to invent/implement and popularize new and valuable teaching strategies, methodical and organizational solutions. The paper presents an area of experiences that stimulate academic teachers to innovative didactic work. Methods: In a qualitative research conducted with the use of a theoretical-methodological approach of Gruber (1989) titled The Evolving Systems Approach to Creative Work (ESA). In it, the author applied a case study and conducted an Interpretative Phenomenological Analysis (IPA) to contents deriving from semistructured interviews carried out with 13 academic teachers-innovators that for at least 5 years invented/implemented new strategies/methods/techniques/programes/didactic aids in the process of teaching-learning with students. Results: Such experiences of didactic work as: positive emotions accompanying the process of inventing and implementing creative didactic solutions, good feedback from students, reaching educational goals, and encouragement from: students, co-workers, and significant persons make up the “self-propelling mechanism” for creativity in didactic work. Conclusions: Each stage of didactic work: from idea through implementation of the solution to its popularization is connected with pleasure and satisfaction taken by teachers. It makes them eager to continue their work in the form of various activities that create an internally related “weave of actions.” Thus, teaching in a creative way becomes a “self-propelling mechanism” thanks to which it is also subject to a process of continuous evolution of it.

Download Full-text

Of dilemmas and tensions: a qualitative study of palliative care physicians’ positions regarding voluntary active euthanasia in Quebec, Canada

Journal of Medical Ethics ◽

10.1136/medethics-2017-104339 ◽

2018 ◽

Vol 45 (1) ◽

pp. 48-53 ◽

Cited By ~ 2

Author(s):

Emmanuelle Bélanger ◽

Anna Towers ◽

David Kenneth Wright ◽

Yuexi Chen ◽

Golda Tradounsky ◽

...

Keyword(s):

Palliative Care ◽

End Of Life Care ◽

Patient Autonomy ◽

Research Question ◽

Interpretive Description ◽

Active Euthanasia ◽

Semistructured Interviews ◽

Voluntary Active Euthanasia ◽

Research Questions ◽

Insight Into

ObjectivesIn 2015, the Province of Quebec, Canada passed a law that allowed voluntary active euthanasia (VAE). Palliative care stakeholders in Canada have been largely opposed to euthanasia, yet there is little research about their views. The research question guiding this study was the following: How do palliative care physicians in Quebec position themselves regarding the practice of VAE in the context of the new provincial legislation?MethodsWe used interpretive description, an inductive methodology to answer research questions about clinical practice. A total of 18 palliative care physicians participated in semistructured interviews at two university-affiliated hospitals in Quebec.ResultsParticipants positioned themselves in opposition to euthanasia. Their justifications were framed within their professional commitment to not hasten death, which sat in tension with the value of patients’ autonomy to choose how to die. Participants described VAE as unacceptable if it impeded opportunities to evaluate and alleviate suffering. Further, they contested government rhetoric that positioned VAE as a way to improve end-of-life care. Participants felt that VAE would diminish the potential of palliative care to relieve suffering. Dilemmas were apparent in their narratives, about reconciling respect for patient autonomy with broader palliative care values, and the value of accompanying and not abandoning patients who make requests for VAE while being committed to neither prolonging nor hastening death.ConclusionsThis study provides insight into nuanced positions of experienced palliative care physicians in Quebec and confirms expected tensions between an important stakeholder and the practice of VAE as guided by the new legislation.

Download Full-text

Journeying Through Informing, Reforming and Transforming Teacher Education: Reflections on Curriculum Images

Journal of Transformative Praxis ◽

10.51474/jrtp.v2i1.520 ◽

2021 ◽

Vol 2 (1) ◽

pp. 8-20

Author(s):

Sadruddin Bahadur Qutoshi

Keyword(s):

Teacher Education ◽

Paradigm Shift ◽

Teacher Educator ◽

Research Problem ◽

Professional Lives ◽

Research Practices ◽

Beliefs And Practices ◽

Auto Ethnography ◽

Teaching Learning ◽

Ways Of Being

This paper aims to address ‘how an auto/ethnographic muse explores informing, reforming and transforming states of teacher education and research practices.’ I critique informing and reforming states of teacher education in Pakistan for the limitations associated with these approaches rooted within the colonial system of education. Within these two approaches to education, I share the experiences of teaching, learning, research practices, and beliefs, which could not address a broader view of teacher education. To address the research problem, I applied an unconventional approach to research by using auto/ethnography as a methodological referent within a multi-paradigmatic research design space. In so doing, I used the paradigms of interpretivism, criticalism, postmodernism, and integralism as data referents, which enabled me to capture the lived experiences of my professional lifeworld at different stages. Moreover, I used critical reflections on the experiences as a teacher, teacher educator, and researcher as epistemic techniques to explore, explain and construct meaning out of the perceptions, beliefs, and practices. Perhaps, engaging autobiographically as an approach to knowing deep-seated views and practices and critically reflecting on the embodied values of practices open new ways of being and becoming a transformative learner(s). This paper invites readers to reflect critically on their own deep-seated practices by using such unconventional approaches to research that would enable them to experience a paradigm shift in their thinking, believing, viewing, and doing. I believe that in doing so, practitioners as researchers, with their own embodied values of practice in their professional lives, can transform self/others by creating their own living-educational-theories.

Download Full-text

Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic

International Journal of Palliative Nursing ◽

10.12968/ijpn.2021.27.6.303 ◽

2021 ◽

Vol 27 (6) ◽

pp. 303-315

Author(s):

Marzieh Hasanpour ◽

Mamak Tahmasebi ◽

Masoud Mohammadpour ◽

Batool Pouraboli ◽

Fahimeh Sabeti

Keyword(s):

Intensive Care Unit ◽

Palliative Care ◽

Intensive Care ◽

Healthcare Providers ◽

Clinical Team ◽

Management Support ◽

Breaking Bad ◽

Paediatric Palliative Care ◽

Home Based ◽

Purposeful Sampling

Background: The integration of paediatric palliative care into the Iranian health system is essential. Aims: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. Methods: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. Findings: Ten main categories were extracted from data analysis, including ‘caring in COVID-19’, ‘communication and family centre care’, ‘breaking bad news’, palliative care training’, ‘pain and symptom management’, ‘support of the child, family and clinical team’, ‘physical environment’, ‘guidelines’, ‘specialised staff’ and ‘home based palliative care’. Conclusion: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.

Download Full-text

Complexity In The Context of Palliative Care: A Scoping Review

10.21203/rs.3.rs-969011/v1 ◽

2021 ◽

Author(s):

Hironori Ohinata ◽

Maho Aoyama ◽

Mitsunori Miyashita

Keyword(s):

Palliative Care ◽

Scoping Review ◽

Healthcare Providers ◽

The United States ◽

Patient Specific ◽

Future Research ◽

Care Needs ◽

Living Situation ◽

Research Activities ◽

Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

Download Full-text

How to Integrate Palliative Care Within Primary Healthcare- Perspectives of People Living With Serious Illnesses, Their Family Caregivers and Primary Healthcare Professionals in Nigeria

10.21203/rs.3.rs-1086435/v1 ◽

2021 ◽

Author(s):

Oladayo A Afolabi ◽

Kennedy Nkhoma ◽

Olaitan Soyannwo ◽

Akinyemi Aje ◽

Adesola Ogunniyi ◽

...

Keyword(s):

Palliative Care ◽

Family Caregivers ◽

Primary Healthcare ◽

Healthcare Providers ◽

Health Coverage ◽

Middle Income ◽

Healthcare Facilities ◽

Care Integration ◽

Qualitative Interview Study ◽

Building Information

Abstract Background Palliative care should be integrated into primary healthcare systems within low- and middle-income countries to achieve Universal Health Coverage goals. We aimed to identify preferences and expectations for primary healthcare support among people living with serious illness and their families in Nigeria, and to determine feasible steps palliative care integration within the health system. Methods Qualitative interview study with 48 participants including people living with serious illnesses (n=21) and their family caregivers (n=15) recruited from specialist clinics at a Teaching hospital in Nigeria; and healthcare providers (n=12) recruited from three primary healthcare facilities in Nigeria. Data were analysed using thematic analysis. Results Three major themes were identified. 1) Balancing patients and families’ expectations and preferences for easily accessible service and opportunities for social interaction and adequate communication with available human resource. 2) Engaging patients requires existing trust and bonds from their current use of primary healthcare and support to develop patients’ agency. 3) Development of healthcare providers is needed to ensure an appropriate clinical response, manage interprofessional trust and ensure clear role delineation. Conclusions Palliative care integration within primary healthcare in Nigeria can be achieved through building information and communication skills of healthcare providers, engaging and empowering patients to exercise their agency in care decisions, and adequately delineating healthcare providers’ roles to ensure staff work within their competencies and training.

Download Full-text