RESUMO
This paper focuses on the particular situation of an advanced cancer patient whose condition has taken a chronic turn. We argue that chronicity of this kind sometimes falls at the frontier of Evidence Based Medicine because the uncertainty about the patient's condition can lead physicians to resort to clinical trials or non-licensed drugs to prevent the disease from progressing. This situation leaves plenty of scope for individual adjustments between patients and their doctors. Advanced cancer is regarded here not just as a biological event but as a chronic illness and a 'negotiated reality'. We argue that the chronicity of advanced cancer patients' situation broadens the patients' scope for 'work', and we have called this specific type of patient's work 'decision-making work'. This paper is based on a case study focusing on Patrick, a middle-aged Frenchman with metastatic lung cancer who underwent oncological treatment for seven years and was strongly determined to find new therapeutic options even if this meant having to go abroad. He actively orchestrated his therapeutic itinerary by reorganising his relationships with the medical world and coordinating the physicians' work. His particular social position enabled Patrick to bypass some of the current medical rules and to reorganise the usual pattern of distribution of medical responsibilities. The chronicity of his condition placed him at the very frontier of the health care system.
Assuntos
Neoplasias , Médicos , Antropologia Médica , Medicina Baseada em Evidências , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapiaRESUMO
This paper addresses the working practices of a mobile mental health outreach team in a large French city, one that 'targets' homeless people with severe psychiatric disorders who are considered 'hard to reach' by the public health authorities and medical services. Analysis of the team's work--where acts of curing and caring are closely tied--reveals the importance of moving beyond a polarized vision of cure and care. The paper departs from much of the literature on the medicalization of social problems by arguing that medicalization is not only a means of social control, but has ethical value as well. In examining the practices of frontline health workers, it aims to show that integrating the methods and theoretical approaches of social work in medical practice is necessary to address the specific problems of homeless people, to enable health professionals to pursue medical cures, and to challenge the shortcomings of public policy.
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Pessoas Mal Alojadas , Medicalização , Transtornos Mentais , Antropologia Médica , França/etnologia , Humanos , Relações InterpessoaisRESUMO
OBJECTIVE: Reasons for patients' acceptance of the allogeneic hematopoietic stem cell transplantation (allo-HSCT) proposed and how their decision may be affected by the long distances involved have not been sufficiently investigated so far. We therefore conducted a qualitative study to identify the factors involved in overseas patients' decision to accept allo-HSCT. METHODS: In-depth semi-directive interviews were conducted with overseas allo-grafted patients (n = 22), as well as one non-consenting patient and their caregivers (n = 24). Interviews were analyzed taking an inductive thematic approach. RESULTS: Respondents stated that their decision to undergo the transplantation was constrained by their feeling of being in a therapeutic impasse, the need for a survival strategy, the need to survive for their family's sake, family and doctors' pressures, and the feeling of being managed. The following factors favoring patients' acceptance were the medical information received, their faith, having a family donor, peer testimonies, and positive representations of the transplantation. Factors against patients' acceptance were geographical distance from home to the transplant center, apprehension of protective isolation, fear of dying, and representations of the graft. CONCLUSIONS: These factors, such as patient's personal values and representations, need to be weighed up in order to adapt the information exchanged accordingly. Efforts are required to relieve patients' social isolation and improve the means of providing family support.
Assuntos
Tomada de Decisões , Transplante de Células-Tronco Hematopoéticas , Pesquisa Qualitativa , Humanos , Transplante de Células-Tronco Hematopoéticas/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Adulto Jovem , Consentimento Livre e Esclarecido , Transplante Homólogo , Aceitação pelo Paciente de Cuidados de Saúde/psicologiaRESUMO
PURPOSE: Fear of cancer recurrence (FCR) is frequent in survivors, but less is known about FCR in long-term survivors with very low risk of relapse. Our aim was to estimate the prevalence and clinical and socio-behavioural factors associated with FCR in young women 5 years after diagnosis of a good-prognosis cancer. METHODS: Using data from the VICAN-5 survey, conducted in 2015-2016 amongst a national representative French sample of cancer survivors, we included women with non-metastatic melanoma, breast, or thyroid cancer, aged 55 years or under at diagnosis, who experienced no disease progression in the 5 years post-diagnosis. Multinomial logistic regression was used to identify factors associated with FCR, characterised using a three-level indicator: no, mild, and moderate/severe FCR. RESULTS: Amongst the 1153 women included, mean age was 44 years at diagnosis, and 81.8% had breast cancer, 12.5% thyroid cancer, and 5.8% melanoma. Five years after diagnosis, 35.4% reported no FCR, 46.0% mild FCR, and 18.6% moderate/severe FCR. Women with thyroid cancer were less likely to suffer from mild or moderate/severe FCR, while cancer-related treatment sequelae, fatigue, and anxiety were more likely. Limited health literacy was associated with mild FCR. Women who reported only occasionally consulting a general practitioner (GP) for the management of their cancer had a higher probability of FCR. CONCLUSION: Moderate/severe FCR affected nearly 20% of young female long-term survivors diagnosed with a good-prognosis cancer, particularly those reporting cancer-related sequelae, suffering from fatigue or anxiety, with breast cancer or melanoma (versus thyroid cancer), and consulting a GP only occasionally for cancer management. IMPLICATIONS FOR CANCER SURVIVORS: Given the recognised impact of FCR on quality of life, it is essential to detect it as early as possible, and to implement targeted interventions in routine care.
Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Melanoma , Neoplasias da Glândula Tireoide , Feminino , Humanos , Adulto , Qualidade de Vida , Medo , Recidiva Local de Neoplasia/epidemiologia , Neoplasias da Mama/terapia , Neoplasias da Glândula Tireoide/epidemiologia , PrognósticoRESUMO
Informing research participants of the results of clinical trials in which they were enrolled is in agreement with patients' rights and human dignity; such feedback is considered an ethical standard applied to clinical research. Cancer patients who participate in a clinical trial usually want to know the results. Here we analysed the literature about the different ways of disclosure of clinical trial results to participants, questioning their expectations and the meanings they give to the results. We describe some of the dilemma and intertwining between clinical care and clinical research. We highlight how the standardisation of sharing such results to participants could raise difficulties particularly for the relationship between doctor and patients.
Assuntos
Pesquisa Biomédica , Ensaios Clínicos como Assunto/psicologia , Disseminação de Informação , Relações Profissional-Paciente , Pesquisa Biomédica/métodos , Ensaios Clínicos como Assunto/métodos , Interpretação Estatística de Dados , Tomada de Decisões/fisiologia , Revelação , Humanos , IndividualidadeRESUMO
This article focuses on the lived experience of patients with haematological cancer who were transferred from La Réunion (a French overseas Department) to mainland France to undergo allogeneic haematopoietic stem cell transplantation (allo-HSCT). Based on a qualitative study conducted between February 2020 and January 2021 with allo-HSCT recipients, their family caregivers and healthcare professionals, we examined the social, economic and cultural factors shaping the patients' complex experience. We have called this kind of State-sponsored intra-national medical transfer "overseas therapeutic mobility". The patients' experience of this therapeutic journey beyond their geographical and cultural frontiers has some similarities with transnational therapeutic mobility. Overseas therapeutic mobility to undergo highly technical treatment requires considerable logistic efforts and mobility skills. The remoteness of their families and their affective and cultural environment give mobile patients a feeling of disorientation and causes them much social suffering. The two-fold condition of being a sick person with a possibly lethal disease and being treated overseas can be regarded as a double ordeal. In addition, the unfunded costs place a heavy burden on the patients and those whose families have limited resources. This study points to the cleavages which occur between post-colonial overseas regions and mainland France, and the territorial inequalities existing in patients' access to specialized treatment due to French policies of healthcare centralization.
Assuntos
Transplante de Células-Tronco Hematopoéticas , Atenção à Saúde , França , Humanos , ReuniãoRESUMO
BACKGROUND: The field of mobile health (mHealth) is constantly expanding. Integrating mHealth apps and devices in clinical practice is a major and complex challenge. General practitioners (GPs) are an essential link in a patient's care pathway. As they are patients' preferred health care intermediaries, GPs play an important role in supporting patients' transition to mHealth. OBJECTIVE: This study aims to identify the factors associated with the willingness of French GPs to prescribe mHealth apps and devices to their patients. METHODS: This study was part of the ApiAppS project whose overall objective was to help remove barriers GPs face when prescribing mHealth apps and devices by developing a custom-built platform to aid them. The study included GPs recruited from the general practice department of several medical faculties in France (Lyon, Nice, and Rouen) and mailing lists of academic GPs, health care professional associations, and social and professional networks. Participants were asked to complete a web-based questionnaire that collected data on various sociodemographic variables, indicators of their involvement in continued education programs and the amount of time they dedicated to promoting healthy behaviors during patient consultations, and indicators characterizing their patient population. Data on their perceptions of mHealth apps and devices were also collected. Finally, the questionnaire included items to measure GPs' acceptability of prescribing mHealth apps and devices for several health-related dimensions. RESULTS: Of the 174 GPs, 129 (74.1%) declared their willingness to prescribe mHealth apps and devices to their patients. In multivariate analysis, involvement in continued education programs (odds ratio [OR] 6.17, 95% CI 1.52-28.72), a better patient base command of the French language (OR 1.45, 95% CI 1.13-1.88), GP-perceived benefits of mHealth apps and devices for both patients and their medical practice and GP-perceived drivers for mHealth apps and device implementation in their medical practice (OR 1.04, 95% CI 1.01-1.07), and validation of mHealth apps and devices through randomized clinical trials (OR 1.02, 95% CI 1.00-1.04) were all associated with GPs' willingness to prescribe mHealth apps and devices. In contrast, older GPs (OR 0.95, 95% CI 0.91-0.98), female GPs (OR 0.26, 95% CI 0.09-0.69), and those who perceived risks for the patient or their medical practice (OR 0.96, 95% CI 0.94-0.99) were less inclined to prescribe mHealth apps and devices. CONCLUSIONS: mHealth apps and devices were generally seen by GPs as useful in general medicine and were, for the most part, favorable to prescribing them. Their full integration in general medicine will be conditioned by the need for conclusive certification, transparency (reliable and precise data concerning mHealth app and device methods of construction and clinical validation), software aids to assist GPs prescribe them, and dedicated training programs.
Assuntos
Clínicos Gerais , Aplicativos Móveis , Telemedicina , Feminino , Humanos , Idioma , Inquéritos e Questionários , Telemedicina/métodosRESUMO
BACKGROUND: Mobile health (mHealth) apps are a potential means of empowering patients, especially in the case of multimorbidity, which complicates patients' care needs. Previous studies have shown that general practitioners (GPs) have both expectations and concerns regarding patients' use of mHealth apps that could impact their willingness to recommend the apps to patients. OBJECTIVE: The aim of this qualitative study is to investigate French GPs' attitudes toward the prescription of mHealth apps or devices aimed toward patients by analyzing GPs' perceptions and expectations of mHealth technologies. METHODS: A total of 36 GPs were interviewed individually (n=20) or in a discussion group (n=16). All participants were in private practice. A qualitative analysis of each interview and focus group was conducted using grounded theory analysis. RESULTS: Considering the value assigned to mHealth apps by participants and their willingness or resistance to prescribe them, 3 groups were defined based on the attitudes or positions adopted by GPs: digital engagement (favorable attitude; mHealth apps are perceived as additional resources and complementary tools that facilitate the medical work, the follow-up care, and the monitoring of patients; and apps increase patients' compliance and empowerment); patient protection (related to the management of patient care and fear of risks for patients, concerns about patient data privacy and security, doubt about the usefulness for empowering patients, standardization of the medical decision process, overmedicalization, risks for individual freedom, and increasing social inequalities in health); doctor protection (fear of additional tasks and burden, doubt about the actionability of patient-gathered health data, risk for medical liability, dehumanization of the patient-doctor relationship, fear of increased drug prescription, and commodification of patient data). CONCLUSIONS: A deep understanding of both the expectations and fears of GPs is essential to motivate them to recommend mHealth apps to their patients. The results of this study show the need to provide appropriate education and training to enhance GPs' digital skills. Certification of the apps by an independent authority should be encouraged to reassure physicians about ethical and data security issues. Our results highlight the need to overcome technical issues such as interoperability between data collection and medical records to limit the disruption of medical work because of data flow.
Assuntos
Clínicos Gerais , Aplicativos Móveis , Telemedicina , Atitude , Humanos , PrescriçõesRESUMO
OBJECTIVE: The aim of this study on primary breast cancer patients undergoing adjuvant tamoxifen treatment was to determine how their perceptions of the treatment and their experience of side-effects contributed to their adherence to the treatment. METHODS: A consecutive series of primary breast cancer patients eligible for tamoxifen therapy were studied qualitatively by conducting semi-structured in-depth interviews at two French cancer centres. RESULTS: The women aged 35-65 (N=34) were struggling with several issues involving their understanding and experience of the treatment, which have not been documented so far. These issues included confusion about the 'hormonal' nature and activity of tamoxifen and the etiology of the changes in their menopausal status, as well as the symbolic associations formed by patients about the paradox of taking a treatment that has aging effects but saves lives. CONCLUSIONS: This study shows the great physical burden often associated with tamoxifen treatment and brings to light women's own complex representations of the treatment and their interpretation of the side-effects. Better communication between health-care providers and patients should ultimately help to prevent refusal or discontinuation of tamoxifen treatment.
Assuntos
Atitude Frente a Saúde , Neoplasias da Mama/tratamento farmacológico , Antagonistas de Estrogênios/uso terapêutico , Cooperação do Paciente/estatística & dados numéricos , Tamoxifeno/uso terapêutico , Adaptação Psicológica , Adulto , Comunicação , Efeitos Psicossociais da Doença , Feminino , Humanos , Entrevista Psicológica , Pessoa de Meia-Idade , Relações Profissional-Paciente , Inquéritos e QuestionáriosRESUMO
PURPOSE: This study aimed to investigate the use of non-conventional medicine (NCM) among long-term cancer survivors and its links with healthy behavior. METHODS: This study used data from the VICAN survey, conducted in 2015-2016 on a representative sample of French cancer survivors 5 years after diagnosis. RESULTS: Among the 4174 participants, 21.4% reported using NCM at the time of the survey, including 8.4% who reported uses not associated with cancer. The most frequently cited reasons for using NCM were to improve their physical well-being (83.0%), to strengthen their body (71.2%), to improve their emotional well-being (65.2%), and to relieve the side effects of treatment (50.7%). The NCM users who reported using NCM to cure cancer or prevent relapses (8.5% of the participants) also used NCM for other reasons. They had more often experienced cancer progression, feared a recurrence, and had a poorer quality of life because of sequelae, pain, and fatigue. They also consulted their general practitioners more frequently and had changed their lifestyle by adopting more healthy practices. CONCLUSION: The use of NCM is not an alternative but a complementary means of coping with impaired health. Further research is now required to determine whether the use of NCM reflects a lifestyle change or whether it assists survivors rather to make behavioral changes. IMPLICATIONS FOR CANCER SURVIVORS: The use of NCM should alert physicians to survivors' impaired quality of life. It might be useful to provide patients with NCM guidelines in order to inform their decision and to prevent unrealistic expectations.
Assuntos
Sobreviventes de Câncer/psicologia , Terapias Complementares/estatística & dados numéricos , Comportamentos Relacionados com a Saúde , Estilo de Vida , Neoplasias/terapia , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Long-term medico-social follow-up of cancer survivors is a challenge because of frequent subsequent troubles. In particular survivors with lower health literacy (HL) have poorer health and might more often use primary care services. However, the impact of HL on cancer survivors' medico-social follow-up visits is not known. Our aim was to study medico-social follow-up and its associated determinants with a focus on HL 5 years after diagnosis. METHODS: VICAN is a national survey of French adult cancer survivors 5 years after a primary cancer. The Single-Item Literacy Screener was used to define functional HL in this sample. We also asked patients to report the frequency of follow-up visits with a general practitioner (GP) and/or social worker (SW) regarding their cancer disease. RESULTS: The 4045 participants were 57.4 ± 12.9 years old at diagnosis (range 20-82) and 1495 (37%) were classified as having inadequate HL. Most cancer survivors (66.7%) were followed up by a GP regarding their cancer while only 14.5% had contact with a SW. After adjustment for sociodemographic, medical, and psychosocial characteristics, medico-social follow-ups (GP and SW visits) were more frequent among survivors with low HL. Furthermore, low income, unemployment, impaired mental health, treatment by chemotherapy, and perception of sequelae and fatigue were also associated with more frequent medico-social follow-up. Cancer localization association with medico-social follow-up was heterogeneous. CONCLUSION: French cancer survivors with limited HL, lower socioeconomic status, and more severe cancer were more likely to use GP care and social services. Raising awareness and training GPs and SWs on medico-social follow-up for patients with limited HL seem necessary to support these vulnerable survivors.
Assuntos
Sobreviventes de Câncer/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde/estatística & dados numéricos , Neoplasias/psicologia , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Prognóstico , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Mobile phones and tablets are being increasingly integrated into the daily lives of many people worldwide. Mobile health (mHealth) apps have promising possibilities for optimizing health systems, improving care and health, and reducing health disparities. However, health care apps often seem to be underused after being downloaded. OBJECTIVE: The aim of this paper is to reach a better understanding of people's perceptions, beliefs, and experience of mHealth apps as well as to determine how highly they appreciate these tools. METHODS: A systematic review was carried out on qualitative studies published in English, on patients' perception of mHealth apps between January 2013 and June 2018. Data extracted from these articles were synthesized using a meta-ethnographic approach and an interpretative method. RESULTS: A total of 356 articles were selected for screening, and 43 of them met the inclusion criteria. Most of the articles included populations inhabiting developed countries and were published during the last 2 years, and most of the apps on which they focused were designed to help patients with chronic diseases. In this review, we present the strengths and weaknesses of using mHealth apps from the patients' point of view. The strengths can be categorized into two main aspects: engaging patients in their own health care and increasing patient empowerment. The weaknesses pointed out by the participants focus on four main topics: trustworthiness, appropriateness, personalization, and accessibility of these tools. CONCLUSIONS: Although many of the patients included in the studies reviewed considered mHealth apps as a useful complementary tool, some major problems arise in their optimal use, including the need for more closely tailored designs, the cost of these apps, the validity of the information delivered, and security and privacy issues. Many of these issues could be resolved with more support from health providers. In addition, it would be worth developing standards to ensure that these apps provide patients accurate evidence-based information.
Assuntos
Antropologia Cultural/métodos , Aplicativos Móveis/normas , Pacientes/psicologia , Percepção , Pesquisa Qualitativa , Antropologia Cultural/estatística & dados numéricos , Humanos , Aplicativos Móveis/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricos , Pacientes/estatística & dados numéricos , Telemedicina/instrumentação , Telemedicina/métodos , Telemedicina/normasRESUMO
Background: Palliative care is often underutilized or initiated late in the course of life-threatening illness. Randomized clinical Early Palliative Care (EPC) trials provide an opportunity for changing oncologists' perceptions of palliative care and their attitudes to referring patients to palliative care services. Aim: To describe French oncologists' perceptions of EPC and their effects on referral practices before a clinical EPC trial was launched. Design: A qualitative study involving semistructured face-to-face interviews. The data were analyzed using the Grounded Theory coding method. Setting/Participants: Thirteen oncologists and 19 palliative care specialists (PCSs) working at 10 hospitals all over France were interviewed. Most of them were involved in clinical EPC trials. Results: The findings suggest that referral to PCSs shortly after the diagnosis of advanced cancer increases the terminological barriers, induces avoidance patterns, and makes early disclosure of poor prognosis harder for oncologists. This situation is attributable to the widespread idea that palliative care means terminal care. In addition, the fact that the EPC concept is poorly understood increases the confusion between EPC and supportive care. Conclusion: Defining the EPC concept more clearly and explaining to health professionals and patients what EPC consists of and what role it is intended to play, and the potential benefits of palliative care services could help to overcome the wording barriers rooted in the traditional picture of palliative care. In addition, training French oncologists how to disclose "bad news" could help them cope with the emotional issues involved in referring patients to specialized palliative care.
Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias/enfermagem , Neoplasias/psicologia , Oncologistas/psicologia , Cuidados Paliativos/psicologia , Encaminhamento e Consulta/estatística & dados numéricos , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
The ApiAppS ongoing project aims to provide physicians with a decision support system for the prescription / recommendation of mHealth technologies. We describe the context and the components of the project which includes: 1) a technical part on modelling and implementing the decision support system, and 2) a psychosocial investigation part designed to have a better knowledge of general practitioners (GPs) and patients' expectations, beliefs and practices.
Assuntos
Clínicos Gerais , Aplicativos Móveis , Telemedicina , HumanosRESUMO
Background: Pain management, especially at the end of life, varies depending on the prescriber's characteristics and attitudes. Little is known about the practices of general practitioners (GPs) regarding end-of-life management for patients with cancer. Objectives: To provide an overview of the characteristics associated with GPs' attitudes and practices regarding opioids prescribing and to explore GPs' perceived role and difficulties in managing end-of-life care for patients with cancer. Design: A cross-sectional study (December 2015 to March 2016). Subjects and Analyses: Data were collected from a representative sample of 376 GPs in southeastern France recruited to participate in a survey on medical practices and opinions regarding cancer patient management. Descriptive analyses and multivariate logistic regressions were conducted to study the characteristics, attitudes, and practices associated with GPs' opioids prescribing attitudes. Results: Almost 97% of GPs stated that they prescribe opioids to end-of-life cancer patients. Among these, 77% said that they prescribe opioids on their own initiative, while 23% declared doing so in coordination with a specialist team. Female GPs, GPs working in solo practices, and GPs reporting more difficulties in managing end-of-life cancer patients were significantly less likely to prescribe opioids on their own initiative. Conclusion: Our results suggest that GPs' characteristics and practices influence the prescribing attitudes at the end of life. Given the dearth of studies on this topic, further research is recommended to better understand the impact of GPs' characteristics on their prescriptive attitudes. The possible interactions between patients' and physicians' characteristics-in particular gender-should also be investigated.
Assuntos
Analgésicos Opioides/administração & dosagem , Atitude do Pessoal de Saúde , Clínicos Gerais/psicologia , Neoplasias , Assistência Terminal , Adulto , Idoso , Estudos Transversais , Feminino , França , Pesquisas sobre Atenção à Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
PURPOSE: The purpose of this study was to assess the use of non-conventional medicine (NCM) in a representative sample of French patients 2 years after cancer diagnosis. METHODS: The study was based on data obtained in the VICAN survey (2012) on a representative sample of 4349 patients 2 years after cancer diagnosis. Self-reported data were collected at telephone interviews with patients. The questionnaire addressed the various types of non-conventional treatments used at the time of the survey. RESULTS: Among the participants, 16.4% reported that they used NCM, and 45.3% of this group had not used NCM before cancer diagnosis (new NCM users). Commonly, NCMs used were homeopathy (64.0%), acupuncture (22.1%), osteopathy (15.1%), herbal medicine (8.1%), diets (7.3%) and energy therapies (5.8%). NCM use was found to be significantly associated with younger age, female gender and a higher education level. Previous NCM use was significantly associated with having a managerial occupation and an expected 5-year survival rate ≥80% at diagnosis; recent NCM use was associated with cancer progression since diagnosis, impaired quality of life and higher pain reports. CONCLUSION: This is the first study on NCM use 2 years after cancer diagnosis in France. In nearly half of the NCM users, cancer diagnosis was one of the main factors which incited patients to use NCM. Apart from the NCM users' socioeconomic profile, the present results show that impaired health was a decisive factor: opting for unconventional approaches was therefore a pragmatic response to needs which conventional medicine fails to meet during the course of the disease. IMPLICATIONS FOR CANCER SURVIVORS: Better information of patients and caregivers is needed to allow access to these therapies to a larger population of survivors.
Assuntos
Terapias Complementares/métodos , Neoplasias/terapia , Sobreviventes/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Autorrelato , Inquéritos e Questionários , Fatores de Tempo , Adulto JovemRESUMO
UNLABELLED: The legislative process of the surrogate appears to be unclear to health professionals and to patients and next of kin. To better adapt this process to the clinical practice our objective was here to document how the persons designated as surrogate perceived their role and how they described the difficulties encountered in oncology. METHODS: Qualitative survey with an ethnographic approach carried out in 2014-2015, fieldwork, face-to-face interviews (n=26 including 20 surrogates and 6 patients) in a mobile palliative care unit located at a Regional Comprehensive Cancer Centre. RESULTS: Close relationship, psychological and cognitive competences were the main attribute to designate a surrogate. Perceived roles included the fact to be involved in decisions, to protect the patient, to be present, and to be a messenger. This process gives the next of kin the feeling to be part of the patient management. In the context of divorced families, it sometimes allows to rehabilitate and to reinforce the affective links. Our data highlight the confusion between the designation of the 'person to call' and 'the surrogate'. DISCUSSION: Our results highlight the 'surrogate' protective role of the patient, and the positive sides of the process, in particular in the context of divorced/rebuilt families. We recommend splitting the process to designate the 'person to call' and the 'surrogate', as administrative and medical duties, respectively.
Assuntos
Tomada de Decisões , Características da Família , Amigos , Neoplasias/terapia , Cuidados Paliativos , Papel (figurativo) , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Amigos/psicologia , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Defesa do Paciente , Pesquisa Qualitativa , ConfiançaRESUMO
Disclosing overall scientific results to clinical trial participants has become an ethical obligation. Here we studied how participants understand these results in view of their experience of clinical trials and illness in general and what modes of disclosure they preferred. Interviews were conducted with 29 breast cancer patients in France during 2009, using an in-depth qualitative approach. The findings obtained show that the "results" of research are understood quite differently by various patients depending on their expectations about clinical trials. Most of the women interviewed expected to receive personally tailored results at an individual encounter with their own clinical oncologist. Their preferred mode of disclosure was a consultation with their doctors because personal encounters promote mutual recognition and set up a symbolic process of exchange. The results of this study show that medical interventions should not be regarded solely from the technical point of view, but also in terms of the social relationships involved.
Assuntos
Neoplasias da Mama/terapia , Ensaios Clínicos como Assunto , Revelação , Relações Médico-Paciente , Adulto , Idoso , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
CONTEXT AND OBJECTIVE: Since their creation in 2005 in France, mobile mental health outreach teams (EMPP) have been working to improve the health of the homeless who, for 30 to 50% of them, present severe mental disorders. Their missions are defined by ministerial circular's specifications. Few studies have been undertaken in France to analyze the practices of these teams' professionals, nor the characteristics of the populations with whom they are involved. The EMPP described in this paper had in 2010 a greater staff than other French EMPPs. It has 15 full-time staff, including four doctors (two psychiatrists, one GP, one house physician), two nurses, two educators, one social worker, three peer-workers, one secretary and two coordinators. The article analyzes the way of support developed within the range of EMPP's missions defined by the ministerial circular. METHODS: Descriptive statistical analysis was carried out using standardized data from four different sources (round sheet, record of activity, record of hospitalization, housing information, interviews conducted by medical and social professionals with patients). Another source of data consists of records describing the operation of the team (reference framework) and annual activities (annual report). RESULTS: The method of care was developed based on a street working, involving a full medical and its relationship with the hospital and a place to live in a semi-community context. The Mobile Mental Health Outreach team documented 318 rounds in 2010, describing 666 contacts among whom 87.9% were followed regularly thereafter. It focuses to a target population. The team actively followed 198 people including 161 for whom a psychiatric diagnosis was done: 48.5% of the patients followed presented schizophrenic-type disorders, 21.8% bipolar disorders and other mood-linked problems, 13% behavioral disorders and 6.2% substance-use disorders. A percentage of 44.9 presented with a physical disease. Among the 89 hospitalizations, 86.5% were motivated by psychiatric disorders and 43% were forced. In about one third of the cases, hospitalizations were motivated by a double indication - psychiatric and physical - and in 13.5% for only a physical indication. Thirty people of the actively followed people had stayed in a halfway house as an alternative to hospitalization, restoring a continuity of care and allowing to resolve social problems that had until then been hopeless. PERSPECTIVES: The strategies developed by this Mobile Health Outreach Team ensure local community medical, psychiatric and social care for "hard to reach" people. The results confirm the interest of the link between the street work, the hospital and the halfway home, both as a living facility and an alternative to hospitalization. They suggest the importance of a critical minimum size for these EMPP that allows them a street work with doctors providing guidance. The presence of a GP is another welcome development because of the severity and the entanglement of somatic and psychiatric problems of these populations.