In this paper, I compare and contrast in summary fashion (1) the GEM definition of health with that of the World Health Organization (WHO); (2) the methodical integration of judgments of fact and value in the GEM model with their incommensurability in most naturalist and normativist theories of health; (3) the significance of differentiating risk factors and disease relative to states of health in the GEM model with the tendency to blur any such difference in current multifactorial accounts of disability and dysfunction; (4) the GEM model’s emphasis on the common core of operations underlying health science and healthcare with the gap separating hermeneutic understanding and scientific explanation that is often the rule in humanistic accounts of health and (5) the role of the ordered and eco-socially conditioned set of relationships in the GEM model of health with the multilevel perspective on health in the developing field of global bioethics. In conclusion, I note that the GEM model offers a unique framework - a higher viewpoint - for integrating in dynamic fashion the manifold viewpoints of clinical practice, the humanities, health science and health policy.
{"title":"The GEM model of health: a model based on generalized empirical method –Part 4 – Comparisons and contrasts","authors":"P. Daly","doi":"10.5750/EJPCH.V7I3.1728","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1728","url":null,"abstract":"In this paper, I compare and contrast in summary fashion (1) the GEM definition of health with that of the World Health Organization (WHO); (2) the methodical integration of judgments of fact and value in the GEM model with their incommensurability in most naturalist and normativist theories of health; (3) the significance of differentiating risk factors and disease relative to states of health in the GEM model with the tendency to blur any such difference in current multifactorial accounts of disability and dysfunction; (4) the GEM model’s emphasis on the common core of operations underlying health science and healthcare with the gap separating hermeneutic understanding and scientific explanation that is often the rule in humanistic accounts of health and (5) the role of the ordered and eco-socially conditioned set of relationships in the GEM model of health with the multilevel perspective on health in the developing field of global bioethics. In conclusion, I note that the GEM model offers a unique framework - a higher viewpoint - for integrating in dynamic fashion the manifold viewpoints of clinical practice, the humanities, health science and health policy.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"261 1","pages":"438-442"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78402049","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"‘Walk with Me’: Reflections from a Motor Neurone Disease Care Advisor","authors":"Leanne Bodley","doi":"10.5750/EJPCH.V7I3.1743","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1743","url":null,"abstract":"","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"7 1","pages":"466-469"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87983535","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J. Thomsen, J. Ammentorp, H. Johannessen, P. Kofoed
Background, aims and objectives: In adulthood many patients with type 1 diabetes have difficulties reaching the goals of good metabolic control and apparently find it unhelpful to attend diabetes clinics. In addition to medical treatment, a focus on psychological problems is recommended, as diabetes self-management can be very challenging requiring both motivation and courage to accept to be and to appear different from others. Methods: In this case-study of the encounter between nurses and young patients with type 1 diabetes and poor metabolic control we used field observations of the encounter and semi-structured interviews, one focusing on the encounter and a second on life with diabetes. Additionally, a focus-group-discussion was used to explore the encounter as well as how the patients were coping in everyday life with diabetes. Kleinmanns two perspectives on chronic conditions, disease/illness, as well as symbolic interactionism using Goffmans metaphor of drama, were used in the analysis. Results: Our findings suggest that during adulthood patients walked into the clinic appropriating the role of good patients cooperating with the nurses mainly on disease problems. Walking out from the clinic they were no longer patients but ordinary young people trying to hide in the role as a patient. In everyday life, they had many barriers which prevented them from prioritizing their diabetes. Conclusion: A focus on illness, and thereby on the wellbeing of the patients, may have to play a more prominent role in diabetes treatment and there seems to be a need for a different approach towards the care of these patients.
{"title":"The concepts of illness or disease? Roles impacting healthcare for patients with type 1 diabetes in adulthood","authors":"J. Thomsen, J. Ammentorp, H. Johannessen, P. Kofoed","doi":"10.5750/EJPCH.V7I3.1690","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1690","url":null,"abstract":"Background, aims and objectives: In adulthood many patients with type 1 diabetes have difficulties reaching the goals of good metabolic control and apparently find it unhelpful to attend diabetes clinics. In addition to medical treatment, a focus on psychological problems is recommended, as diabetes self-management can be very challenging requiring both motivation and courage to accept to be and to appear different from others. Methods: In this case-study of the encounter between nurses and young patients with type 1 diabetes and poor metabolic control we used field observations of the encounter and semi-structured interviews, one focusing on the encounter and a second on life with diabetes. Additionally, a focus-group-discussion was used to explore the encounter as well as how the patients were coping in everyday life with diabetes. Kleinmanns two perspectives on chronic conditions, disease/illness, as well as symbolic interactionism using Goffmans metaphor of drama, were used in the analysis. Results: Our findings suggest that during adulthood patients walked into the clinic appropriating the role of good patients cooperating with the nurses mainly on disease problems. Walking out from the clinic they were no longer patients but ordinary young people trying to hide in the role as a patient. In everyday life, they had many barriers which prevented them from prioritizing their diabetes. Conclusion: A focus on illness, and thereby on the wellbeing of the patients, may have to play a more prominent role in diabetes treatment and there seems to be a need for a different approach towards the care of these patients.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"354 1","pages":"417-421"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78103350","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Courtney Armstrong, S. Grant, K. Kinnett, B. Denger, Annalee Martin, I. Coulter, M. Booth, Dmitry Khodyakov
Background Patient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups. Objective To describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development. Design We developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round. Setting and Participants Using the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD). Main Outcome Measures We surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants. Results Participants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers. Discussion and Conclusion The results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.
{"title":"Participant experiences with a new online modified-Delphi approach for engaging patients and caregivers in developing clinical guidelines.","authors":"Courtney Armstrong, S. Grant, K. Kinnett, B. Denger, Annalee Martin, I. Coulter, M. Booth, Dmitry Khodyakov","doi":"10.5750/EJPCH.V7I3.1745","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1745","url":null,"abstract":"Background\u0000Patient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups.\u0000\u0000\u0000Objective\u0000To describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development.\u0000\u0000\u0000Design\u0000We developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round.\u0000\u0000\u0000Setting and Participants\u0000Using the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD).\u0000\u0000\u0000Main Outcome Measures\u0000We surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants.\u0000\u0000\u0000Results\u0000Participants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers.\u0000\u0000\u0000Discussion and Conclusion\u0000The results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"189 1","pages":"476-489"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75072407","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
As with many constructs in healthcare (e.g., ‘evidence-based medicine’, ‘health-related quality of life’, ‘decision aid’) ‘shared decision-making’ is formative not reflective, that is, ‘it’ has no existence prior to its definition and measurement. Any particular formative construct is preference-sensitive, being based on the preferences of those who form it by their indicator selection and weighting. These preferences often reflect interests of various sorts, some material, many not (at least not directly), but often ones aligned with particular beliefs, ideologies or ideals. So cave litteras maiusculas - sdm not SDM. Since ‘shared’ is an adjectival qualifier of ‘decision-making’, fundamental preferences relevant to decision-making are relevant in any construction of sdm. We highlight two major preferences in relation to health decisions. One is for provider-controlled, direct-to-patient intermediation (inter) as contrasted with provider-independent, direct-to-person apomediation (apo). The second is for verbal deliberative reasoning (vdr ) as contrasted with numerical analytical calculation (nac). From their cross-tabulation we can see that, within both practice and research - and in legal standards and ethical guidelines for both - sdm is currently being constructed exclusively within the intermediative verbal deliberative reasoning (‘inter-vdr’) frame. We compare and contrast inter-vdr with the three other possibilities - ‘inter-nac’, ‘apo-vdr’ and ‘apo-nac’. Dismissal or disregard of the latter, especially the last, on the grounds of credibility and trustworthiness, needs to be challenged by preference-based comparative evaluations, using unbiased measurement of costs and effectiveness, in order to optimise the development and delivery of personalised support for health and healthcare decisions.
{"title":"Shared decision making is a Preference-sensitive Formative Construct: the Implications","authors":"J. Dowie","doi":"10.5750/EJPCH.V7I3.1759","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1759","url":null,"abstract":"As with many constructs in healthcare (e.g., ‘evidence-based medicine’, ‘health-related quality of life’, ‘decision aid’) ‘shared decision-making’ is formative not reflective, that is, ‘it’ has no existence prior to its definition and measurement. Any particular formative construct is preference-sensitive, being based on the preferences of those who form it by their indicator selection and weighting. These preferences often reflect interests of various sorts, some material, many not (at least not directly), but often ones aligned with particular beliefs, ideologies or ideals. So cave litteras maiusculas - sdm not SDM. Since ‘shared’ is an adjectival qualifier of ‘decision-making’, fundamental preferences relevant to decision-making are relevant in any construction of sdm. We highlight two major preferences in relation to health decisions. One is for provider-controlled, direct-to-patient intermediation (inter) as contrasted with provider-independent, direct-to-person apomediation (apo). The second is for verbal deliberative reasoning (vdr ) as contrasted with numerical analytical calculation (nac). From their cross-tabulation we can see that, within both practice and research - and in legal standards and ethical guidelines for both - sdm is currently being constructed exclusively within the intermediative verbal deliberative reasoning (‘inter-vdr’) frame. We compare and contrast inter-vdr with the three other possibilities - ‘inter-nac’, ‘apo-vdr’ and ‘apo-nac’. Dismissal or disregard of the latter, especially the last, on the grounds of credibility and trustworthiness, needs to be challenged by preference-based comparative evaluations, using unbiased measurement of costs and effectiveness, in order to optimise the development and delivery of personalised support for health and healthcare decisions.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"48 1","pages":"506-517"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84865416","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This is the first of a four-part essay in which I present a comprehensive model of health based on the philosophy of Bernard Lonergan. In this introductory article, I situate the model within my overall project to develop a philosophy of health based on Lonergan’s philosophy and within contemporary efforts to understand the relationship between health science and healthcare. In the following set of three articles I discuss the philosophical background of the model before fleshing the model out and then comparing it to other accounts of health and disease.
{"title":"The GEM Model: A model of health based on generalized empirical method – Part 1 – Introduction","authors":"P. Daly","doi":"10.5750/EJPCH.V7I3.1725","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1725","url":null,"abstract":"This is the first of a four-part essay in which I present a comprehensive model of health based on the philosophy of Bernard Lonergan. In this introductory article, I situate the model within my overall project to develop a philosophy of health based on Lonergan’s philosophy and within contemporary efforts to understand the relationship between health science and healthcare. In the following set of three articles I discuss the philosophical background of the model before fleshing the model out and then comparing it to other accounts of health and disease.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"43 3-4","pages":"422-425"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72608145","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The aim of this paper is to explore the intricate issue of the right to die in dignity by focusing on the role of the patient’s family. The paper considers a number of real-life cases. The cases demonstrate the importance of caution in incidents when the best interests of the patient’s family members contradict the best interests of the patient. There is some resemblance between two American cases: Spring and Wendland . But while in Spring the family was unified in its opinion to stop the patient’s treatment, in Wendland family members expressed contrasting opinions. Two English cases - In Re N and In Re 62-year-old Woman and a Dutch case concerning Mrs A, highlight the important role of the incompetent patient’s family when members of family are unified in their opinions. These cases lead to conclude, contra Dworkin, that advance directives should be treated with great caution.
本文的目的是通过关注病人家属的角色来探讨有尊严地死去的权利的复杂问题。这篇论文考虑了许多现实生活中的案例。这些案例表明，当患者家属的最大利益与患者的最大利益相矛盾时，谨慎行事的重要性。美国的两个案例有一些相似之处:《春天》和《温德兰》。但是，在《春天》中，家庭成员一致同意停止病人的治疗，而在《温德兰》中，家庭成员表达了截然不同的意见。两个英国的案例——In Re N和In Re 62岁的女人和一个荷兰的关于a太太的案例，突出了当家庭成员意见一致时，无能病人家属的重要作用。与德沃金的观点相反，这些案例得出的结论是，应该非常谨慎地对待事先指示。
{"title":"The Role of the Patient’s Family, Surrogate and Guardian at the End of Life","authors":"R. Cohen-Almagor","doi":"10.5750/EJPCH.V7I3.1739","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1739","url":null,"abstract":"The aim of this paper is to explore the intricate issue of the right to die in dignity by focusing on the role of the patient’s family. The paper considers a number of real-life cases. The cases demonstrate the importance of caution in incidents when the best interests of the patient’s family members contradict the best interests of the patient. There is some resemblance between two American cases: Spring and Wendland . But while in Spring the family was unified in its opinion to stop the patient’s treatment, in Wendland family members expressed contrasting opinions. Two English cases - In Re N and In Re 62-year-old Woman and a Dutch case concerning Mrs A, highlight the important role of the incompetent patient’s family when members of family are unified in their opinions. These cases lead to conclude, contra Dworkin, that advance directives should be treated with great caution.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"15 1","pages":"454-465"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86327393","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Communication is central to good healthcare, with clinician, patient, and family members all playing a key role in identifying the needs and treatment options for the patient. Because good healthcare is person-centered, communication needs also to be person-centered - with the patient as the primary focal point - even though there may be several other parties who have interests and concerns for the patient. But in what does good communication consist? This article delves more deeply into the question of what is entailed in listening well, expanding on the concept of uptake as introduced by J.L. Austin. I apply uptake to psychiatric service users; because of persistent stigma, implicit bias, and stereotyping, this population faces some unique challenges when it comes to being listened to and taken seriously, This is especially true for members of Black, minority and ethnic groups. While the focus of this article is on uptake, I also discuss some kinds of silencing that may be at play in clinical encounters and in co-production. However, many questions are left unanswered as to when and how uptake is properly given, and when, if ever, it should not be given. The final section of this paper speaks to the need for others to engage in research and practical engagements so that this vitally important practice can be taught and employed. Here, I raise a number of questions that need to be addressed in order for a deeper understanding can develop about what it means to give uptake well.
{"title":"Listening well to psychiatric service users: What does it mean to give uptake?","authors":"N. Potter","doi":"10.5750/EJPCH.V7I3.1757","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1757","url":null,"abstract":"Communication is central to good healthcare, with clinician, patient, and family members all playing a key role in identifying the needs and treatment options for the patient. Because good healthcare is person-centered, communication needs also to be person-centered - with the patient as the primary focal point - even though there may be several other parties who have interests and concerns for the patient. But in what does good communication consist? This article delves more deeply into the question of what is entailed in listening well, expanding on the concept of uptake as introduced by J.L. Austin. I apply uptake to psychiatric service users; because of persistent stigma, implicit bias, and stereotyping, this population faces some unique challenges when it comes to being listened to and taken seriously, This is especially true for members of Black, minority and ethnic groups. While the focus of this article is on uptake, I also discuss some kinds of silencing that may be at play in clinical encounters and in co-production. However, many questions are left unanswered as to when and how uptake is properly given, and when, if ever, it should not be given. The final section of this paper speaks to the need for others to engage in research and practical engagements so that this vitally important practice can be taught and employed. Here, I raise a number of questions that need to be addressed in order for a deeper understanding can develop about what it means to give uptake well.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"14 1","pages":"499-505"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"91183109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In this paper I discuss background issues of worldview and method that underlie the GEM model of health. First, I present Bernard Lonergan’s account of emergent probability, a differentiated and developmental worldview that stands in sharp contrast to the inadequately differentiated viewpoints of materialism and dualism discussed in Part 1. This opens up a new way for the GEM model to approach questions of health that stands in sharp contrast to the way that the standard biomedical model and alternative hybrid models approach these questions. Second, I present Lonergan’s account of generalized empirical method, a unified method for investigating the natural and historical dimensions of the world in which we live and seek to thrive.
{"title":"The GEM model of health: a model based on generalized empirical method – Part 2 – Background","authors":"P. Daly","doi":"10.5750/EJPCH.V7I3.1726","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1726","url":null,"abstract":"In this paper I discuss background issues of worldview and method that underlie the GEM model of health. First, I present Bernard Lonergan’s account of emergent probability, a differentiated and developmental worldview that stands in sharp contrast to the inadequately differentiated viewpoints of materialism and dualism discussed in Part 1. This opens up a new way for the GEM model to approach questions of health that stands in sharp contrast to the way that the standard biomedical model and alternative hybrid models approach these questions. Second, I present Lonergan’s account of generalized empirical method, a unified method for investigating the natural and historical dimensions of the world in which we live and seek to thrive.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"63 1","pages":"426-431"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80737498","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Aim: The study explored oesophageal cancer (EC) patients’ experiences before the start of treatment and the process of participation in treatment decisions. Background: EC is a serious and potentially lethal disease. Surgery and perioperative chemotherapy is the established treatment, which results in a treatment course of 6 to 8 months. No studies have explored how patients with EC experience the diagnosis, the time before the diagnosis and start of treatment and how they experience participating in treatment decisions. Design: The study was a qualitative study employing a phenomenological-hermeneutic approach. Methods: Sixteen patients with EC participated. Data collection was carried out using participant observations and semi-structured interviews. Data were analysed with inspiration from Ricœur’s theory of interpretation. Results: The study showed that patients struggle to gain control of the new life situation and alternate between doubt and hope for the future. Maintaining everyday life activities is of importance and helps the patients deal with the diagnosis and forthcoming treatment. Patients acknowledged that the experts made decisions, yet they were aware that experts assessed their capability to access treatment. Patients experienced the time from diagnosis to the start of treatment as being in ‘no man’s land’. Conclusions: EC patients encountered an alien world of disease and treatment and are struggling to gain control of their new life situation. Health professionals tend not to focus on patient expressions of everyday life and patients are not actively invited to participate in decisions.
{"title":"Encountering an alien world of disease and treatment. A qualitative study on oesophageal cancer patients’ experiences before start of treatment and the process of participation in treatment decisions","authors":"M. Larsen","doi":"10.5750/EJPCH.V7I3.1760","DOIUrl":"https://doi.org/10.5750/EJPCH.V7I3.1760","url":null,"abstract":"Aim: The study explored oesophageal cancer (EC) patients’ experiences before the start of treatment and the process of participation in treatment decisions. Background: EC is a serious and potentially lethal disease. Surgery and perioperative chemotherapy is the established treatment, which results in a treatment course of 6 to 8 months. No studies have explored how patients with EC experience the diagnosis, the time before the diagnosis and start of treatment and how they experience participating in treatment decisions. Design: The study was a qualitative study employing a phenomenological-hermeneutic approach. Methods: Sixteen patients with EC participated. Data collection was carried out using participant observations and semi-structured interviews. Data were analysed with inspiration from Ricœur’s theory of interpretation. Results: The study showed that patients struggle to gain control of the new life situation and alternate between doubt and hope for the future. Maintaining everyday life activities is of importance and helps the patients deal with the diagnosis and forthcoming treatment. Patients acknowledged that the experts made decisions, yet they were aware that experts assessed their capability to access treatment. Patients experienced the time from diagnosis to the start of treatment as being in ‘no man’s land’. Conclusions: EC patients encountered an alien world of disease and treatment and are struggling to gain control of their new life situation. Health professionals tend not to focus on patient expressions of everyday life and patients are not actively invited to participate in decisions.","PeriodicalId":72966,"journal":{"name":"European journal for person centered healthcare","volume":"14 1","pages":"518-529"},"PeriodicalIF":0.0,"publicationDate":"2019-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78952188","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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