scholarly journals Ever decreasing circles: terminal illness, empowerment and decision-making

2010 ◽  
Vol 2 (2) ◽  
pp. 130 ◽  
Author(s):  
Kate Richardson ◽  
Rod MacLeod ◽  
Bridie Kent
Keyword(s):  
Decision Making ◽  
Lived Experience ◽  
Health Professionals ◽  
Terminal Illness ◽  
Phenomenological Study ◽  
Terminally Ill ◽  
Power Sharing ◽  
Political Processes ◽  
Palliative Care Setting ◽  
Self Worth

INTRODUCTION: Empowerment is the personal and political processes patients go through to enhance and restore their sense of dignity and self-worth. However, there is much rhetoric surrounding nurses facilitating patients’ daily choices and enabling empowerment. Furthermore, there is frequently an imbalance of power sharing, with the patient often obliged to do what the health professional wants them to do. METHOD: This phenomenological study describes the lived experience of patients attending an outpatient clinic of a community hospice. A qualitative study using Max van Manen’s phenomenological hermeneutic method was conducted to explore issues surrounding empowerment and daily decisionmaking with terminally ill patients. The participants’ stories became a stimulus for learning about the complexities of autonomy and empowerment. It also engendered reflection and analysis of issues related to power and control inequities in current nursing practices. FINDINGS: The results revealed not only the themes of chaoticum, contracting worlds and capitulation, but that health professionals should be mindful of the level of control they exert. Within the palliative care setting they need to become partners in care, enhancing another person’s potential for autonomous choice. CONCLUSION: Empowerment must not be something that simply occurs from within, nor can it be done by another. Intentional efforts by health professionals must enable terminally ill people to be able to stay enlivened and connected with a modicum of autonomy and empowerment over daily decisions, no matter how mundane or monumental they might be. KEYWORDS: Phenomenology; empowerment; autonomy; terminal care; decision-making

scholarly journals Prognostication in patient with terminal stage of cancer

2021 ◽  
Vol 1 (1) ◽  
pp. 16-31
Author(s):  
Maria A Witjaksono
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Palliative Care ◽  
Terminal Illness ◽  
Prognostic Score ◽  
Prognostic Index ◽  
Daily Practice ◽  
Clinical Decision ◽  
Health Care Team ◽  
Palliative Care Setting

Prognosis is one of the most critical factors affecting clinical decision in medical practice. In terminal illness where patients are only less than months to live, prognostication is essential to provide an appropriate plan, particularly to avoid futile treatment and to arrange palliative care referral. Prognostication is a process of foreseeing and foretelling, which enable the health care team, patients and family to be involved in the decision making. Determining prognosis is a challenge for doctors as lack of knowledge and skills and fear of the response of the patients and their families. Prognostication is essential in decision making among terminally ill patients, as the risks of adverse effects, energy, time and cost potentially outweighs the benefit of survival, quality of life, functional gain and hope. The benefit of prognostication is not only for the doctors, but particularly to the patients, their families, as well as to institution and health care system. In daily practice a subjective judgment made by doctor based on clinical assessment is usually overoptimistic. A tool is needed to make a better prognostication. Palliative Prognostic Index (PPI) and Palliative Prognostic Score (PaP score) are the most common tools used in palliative care setting.

scholarly journals Meanings and senses of being a health professional with tuberculosis: an interpretative phenomenological study

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e035873
Author(s):  
Marcandra Nogueira Almeida Santos ◽  
Antonia Margareth Moita Sá ◽  
Juarez Antonio Simões Quaresma
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Personal Experience ◽  
Phenomenological Study ◽  
Diagnosis And Treatment ◽  
Tuberculosis Prevention ◽  
History Of ◽  
Tuberculosis Diagnosis ◽  
Health Institutions ◽  
Depth Interviews

ObjectiveThe aim of the study was to analyse and understand meanings and senses of living with tuberculosis for health professionals.Method/designThis is an interpretative phenomenological study conducted from in-depth interviews to analyse how health professionals understand their personal experience of tuberculosis.ScenarioTwo reference health institutions for tuberculosis diagnosis and treatment located in a municipality of the Eastern Brazilian Amazon.ParticipantsIntentional sample of 15 health professionals with the disease or with a recent history of tuberculosis.ResultsRegarding the personal experience of tuberculosis of the participating health professionals, four superordinate themes were identified: (1) experiencing tuberculosis, (2) experiencing the diagnosis of tuberculosis, (3) facing the treatment of tuberculosis and (4) signifying tuberculosis.ConclusionThis study verified that health professionals live the experience of tuberculosis similar to other people: with fear, anguish, frustration, prejudice and health needs not always met by the services and programmes for the control of the disease. The lived experience has an important impact on the health professionals’ ways of understanding the kind of empathic and sensitive care that should be provided to people with tuberculosis. In addition, it is concluded that specific governmental strategies are needed for tuberculosis prevention, diagnosis and treatment among health professionals.

scholarly journals The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

2018 ◽  
Vol 6 (3) ◽  
pp. 57
Author(s):  
Fatima Saleh ◽  
Catherine S. O’Neill
Keyword(s):  
Home Care ◽  
Lived Experience ◽  
Family Caregivers ◽  
Nursing Care ◽  
Phenomenological Study ◽  
Family Members ◽  
Terminally Ill ◽  
Well Being ◽  
Care Clinic ◽  
Hermeneutic Phenomenological

Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis.Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers’ well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.

A New State of Being

2016 ◽  
Vol 74 (3) ◽  
pp. 345-360 ◽  
Author(s):  
Christine Yvonne Denhup
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Phenomenological Study ◽  
Parental Bereavement ◽  
Hermeneutic Phenomenological ◽  
Bereaved Parents ◽  
Death Of A Child ◽  
Conversational Interviews ◽  
One Year ◽  
Hermeneutic Phenomenological Study

In spite of growing bereavement literature, the meaning of the lived experience of parental bereavement is not well understood. This article presents selected findings from a Heideggerian hermeneutic phenomenological study which aimed to describe the lived experience of bereaved parents who experienced the death of a child due to cancer. Conversational interviews were conducted with six parents who experienced the death of a young child due to cancer at least one year prior to participation. The nature of parental bereavement was revealed to be a new state of being into which parents enter immediately after the death of a child and which has no end point. Findings will equip health professionals and others who work with bereaved parents with a deeper understanding of the meaning of parental bereavement.

scholarly journals The Lived Experience of Diagnosis Delivery in Motor Neurone Disease: A Sociological-Phenomenological Study

2013 ◽  
Vol 18 (2) ◽  
pp. 36-47 ◽  
Author(s):  
Amanda Pavey ◽  
Jacquelyn Allen-Collinson ◽  
Toby Pavey
Keyword(s):  
Lived Experience ◽  
Health Professionals ◽  
Professional Training ◽  
Phenomenological Study ◽  
Mode Of Delivery ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Sociological Study ◽  
Qualitative Approaches ◽  
Phenomenological Perspective

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

The importance of supportive relationships with general practitioners, hospitals and pharmacists for mothers who ‘give medicines’ to children with severe and profound intellectual disabilities

2020 ◽  
pp. 174462952095100
Author(s):  
Carmel Doyle
Keyword(s):  
Intellectual Disabilities ◽  
Lived Experience ◽  
Health Professionals ◽  
Phenomenological Study ◽  
Daily Basis ◽  
Daily Activities ◽  
Supportive Relationships ◽  
Hermeneutic Phenomenological ◽  
Hermeneutic Phenomenological Study ◽  
Insight Into

A purposeful sample of 15 mothers of children with severe and profound intellectual disabilities participated in this hermeneutic phenomenological study through interviews and completion of a diary. The aim of the study was to explore mothers’ lived experience of ‘giving medicines’ to children with severe and profound intellectual disabilities. Findings yielded multiple themes, one of which gave insight into the importance of supportive relationships with health professionals. The general practitioner (GP), hospital and pharmacist are key in providing supportive elements to mothers’ daily role. Having the support of a helpful GP was key in helping mothers cope on a daily basis for child related queries on illness, getting prescriptions or seeking advice. Accessibility to the hospital and avoiding the emergency department with their child was recommended. The pharmacist was central to the daily activities relating to ‘giving medicines’ and a good relationship resulted in a happier mother.

Knowledge, Attitudes and associated factors to Use District Health Information System (DHIS2 data) for decision making among health professionals in a Resource limited settings: Cross-sectional Survey (Preprint)

2020 ◽  
Author(s):  
Shuma Gosha Kanfe ◽  
Nebyu Demeke Mengiste ◽  
Mohammedjud Hassen Ahmed ◽  
Gebiso Roba Debele ◽  
Berhanu Fikadie Endehabtu
Keyword(s):  
Decision Making ◽  
Health Professionals ◽  
Associated Factors ◽  
Good Knowledge ◽  
Cross Sectional Survey ◽  
District Health ◽  
Cross Sectional ◽  
Determinant Factors ◽  
Knowledge And Attitudes ◽  
Health Need

BACKGROUND Evidence based practice is a key to increase effectiveness and efficiency of quality health services. To achieve this, utilization of health facility data (DHIS2 data) is required which is determined by knowledge and attitudes of health professionals. Thus, this study aimed to assess knowledge and attitudes of health professionals to use DHIS2 data for decision making. OBJECTIVE This study aimed to assess the knowledge, attitudes and its associated factors among health professionals to use DHIS2 data for decision making at South west of Ethiopia 2020 METHODS Cross sectional quantitative study methods was conducted to assess Knowledge and Attitudes of health professionals to use DHIS2 data. A total of 264 participants were approached. SPSS version 22 software was used for data entry and analysis. Descriptive and analytical statistics including Bivariable and Multivariable analyses was done RESULTS Overall 130(49.2%) of the respondents had good knowledge to use DHIS2 data (95% CI: [43, 55.3]), whereas over 149 (56.4%) of the respondents had favorable attitudes towards the use of DHIS2 data for decision making purpose (95% CI: [53.2, 59.8]). Skills [AOR=2.20,95% CI:(1.16, 4.19)], Age [AOR= 1.92, 95% CI: (1.03, 3.59)] ,Resources[AOR=2.56, 95% CI:(1.35,4.86)], Staffing[AOR= 2.85, 95% CI : (1.49, 5.48)] and Experiences[AOR= 4.66, 95% CI: (1.94, 5.78)] were variables associated with knowledge to use DHIS2 data whereas Training [AOR= 5.59, 95% CI: (2.48, 5.42)], Feedback [AOR= 4.08, 95% CI: (1.87, 8.91)], Motivation [AOR=2.87, 95% CI: (1.36, 6.06)] and Health need [AOR=2.32, 95% CI: (1.10-4.92)] were variables associated with attitudes of health professionals to use DHIS2 data CONCLUSIONS In general, about half of the study participants had good knowledge of DHIS2 data utilization whereas more than half of respondents had favorable attitudes. Skills, resources, ages, staffing and experiences were the most determinant factors for the knowledge to use DHIS2 data whereas health need, motivation, feedback and training were determinant factors for attitudes to use DHIS2 data

Virtual Clinical and Precision Medicine Tumor Boards: A Cloud-based Platform-mediated Implementation of Multidisciplinary Reviews among Oncology Centers in the Covid-19 Era. (Preprint)

2020 ◽  
Author(s):  
Livio Blasi ◽  
Roberto Bordonaro ◽  
Vincenzo Serretta ◽  
Dario Piazza ◽  
Alberto Firenze ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Professionals ◽  
Clinical Pathways ◽  
Prospective Trial ◽  
Banking System ◽  
Outcome Data ◽  
Tumor Board ◽  
Time Saving ◽  
Tumor Boards ◽  
Multidisciplinary Tumor Board

BACKGROUND Multidisciplinary tumor boards play a pivotal role in the patients -centered clinical management and in the decision-making process to provide best evidence -based, diagnostic and therapeutic care to cancer patients. Among the barriers to achieve an efficient multidisciplinary tumor board, lack of time and geographical distance play a major role. Therefore the elaboration of an efficient virtual multidisciplinary tumor board (VMTB) is a key-point to reach a successful oncology team and implement a network among health professionals and institutions. This need is stronger than ever in a Covid-19 pandemic scenario. OBJECTIVE This paper presents a research protocol for an observational study focused on exploring the structuring process and the implementation of a multi-institutional VMTB in Sicily. Other endpoints include analysis of cooperation between participants, adherence to guidelines, patients’ outcomes, and patients satisfaction METHODS This protocol encompasses a pragmatic, observational, multicenter, non-interventional, prospective trial. The study's programmed duration is five years, with a half-yearly analysis of the primary and secondary objectives' measurements. Oncology care health-professionals from various oncology subspecialties at oncology departments in multiple hospitals (academic and general hospitals as well as tertiary centers and community hospitals) are involved in a non-hierarchic fashion. VMTB employ an innovative, virtual, cloud-based platform to share anonymized medical data which are discussed via a videoconferencing system both satisfying security criteria and HIPAA compliance. RESULTS The protocol is part of a larger research project on communication and multidisciplinary collaboration in oncology units and departments spread in the Sicily region in Italy. Results of this study will particularly focus on the organization of VMTB involving oncology units present in different hospitals spread in the area and create a network to allow best patients care pathways and a hub and spoke relationship. Results will also include data concerning organization skills and pitfalls, barriers, efficiency, number and type con clinical cases, and customers’ satisfaction. CONCLUSIONS VMTB represents a unique opportunity to optimize patient’s management in a patient centered approach. An efficient virtualization and data banking system is potentially time-saving, a source for outcome data, and a detector of possible holes in the hull of clinical pathways. The observations and results from this VMTB study may hopefully useful to design nonclinical and organizational interventions that enhance multidisciplinary decision-making in oncology.

scholarly journals Evaluation of the Use of Shared Decision Making in Breast Cancer: International Survey

2021 ◽  
Vol 18 (4) ◽  
pp. 2128
Author(s):  
Marta Maes-Carballo ◽  
Manuel Martín-Díaz ◽  
Luciano Mignini ◽  
Khalid Saeed Khan ◽  
Rubén Trigueros ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Health Professionals ◽  
Cross Sectional Study ◽  
Shared Decision ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Professional Societies ◽  
New Policies

Objectives: To assess shared decision-making (SDM) knowledge, attitude and application among health professionals involved in breast cancer (BC) treatment. Materials and Methods: A cross-sectional study based on an online questionnaire, sent by several professional societies to health professionals involved in BC management. There were 26 questions which combined demographic and professional data with some items measured on a Likert-type scale. Results: The participation (459/541; 84.84%) and completion (443/459; 96.51%) rates were high. Participants strongly agreed or agreed in 69.57% (16/23) of their responses. The majority stated that they knew of SDM (mean 4.43 (4.36–4.55)) and were in favour of its implementation (mean 4.58 (4.51–4.64)). They highlighted that SDM practice was not adequate due to lack of resources (3.46 (3.37–3.55)) and agreed on policies that improved its implementation (3.96 (3.88–4.04)). The main advantage of SDM for participants was patient satisfaction (38%), and the main disadvantage was the patients’ paucity of knowledge to understand their disease (24%). The main obstacle indicated was the lack of time and resources (40%). Conclusions: New policies must be designed for adequate training of professionals in integrating SDM in clinical practice, preparing them to use SDM with adequate resources and time provided.

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