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1.
Psychooncology ; 33(7): e6371, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38942736

RESUMEN

OBJECTIVE: Psychological suffering in patients with Malignant Mesothelioma (MM) is different from the one experienced by patients with other cancers due to its occupational or environmental etiology and its peculiar symptomatology and prognosis (i.e., poor prognosis, reduced effectiveness of the therapies, poor quality of residual life, and advanced age at the time of diagnosis). Therefore, the Mesothelioma Psychological Distress Tool-Patients (MPDT-P) has been developed to evaluate the specific profile of psychological suffering in this population. This paper describes the item selection, factor analysis, and psychometric evaluation of the revised MPDT-P. METHODS: The analyses of the current work aimed to confirm the factorial structure found in the first version of the MPDT-P. In the case of nonfit, it aimed to find an alternative structure and causes of nonfit in the model. The search for the fit of the factorial model was conducted using a Bayesian approach. RESULTS: The two-factor model reported in the first version of the instrument did not fit the data. Confirmatory Bayesian analyses showed adequate fit for the three-factor solution. Based on the content of the items, we labeled the factors as dysfunctional emotions, claims for justice, and anxieties about the future. CONCLUSIONS: Integrating the MPDT-P into clinical practice could help clinicians gain insight into the specific suffering related to MM and investigate potential differences related to different occupational and environmental exposure contexts.


Asunto(s)
Mesotelioma Maligno , Medición de Resultados Informados por el Paciente , Distrés Psicológico , Psicometría , Humanos , Mesotelioma Maligno/psicología , Femenino , Masculino , Persona de Mediana Edad , Anciano , Análisis Factorial , Teorema de Bayes , Mesotelioma/psicología , Neoplasias Pulmonares/psicología , Encuestas y Cuestionarios , Estrés Psicológico/psicología , Adulto , Reproducibilidad de los Resultados , Calidad de Vida/psicología
2.
J Hum Nutr Diet ; 37(3): 717-725, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38583133

RESUMEN

BACKGROUND: People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient-related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers. METHODS: Twenty-three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56-83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied. RESULTS: Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice. CONCLUSIONS: Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family.


Asunto(s)
Apetito , Cuidadores , Dieta , Mesotelioma , Investigación Cualitativa , Humanos , Femenino , Masculino , Persona de Mediana Edad , Anciano , Mesotelioma/psicología , Cuidadores/psicología , Anciano de 80 o más Años , Dieta/psicología , Dieta/métodos , Pérdida de Peso
3.
Support Care Cancer ; 27(2): 631-638, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30043265

RESUMEN

PURPOSE: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed. METHODS: Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants' experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support. CONCLUSION: Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.


Asunto(s)
Cuidadores/psicología , Mesotelioma/psicología , Adaptación Psicológica , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Apoyo Social
4.
Support Care Cancer ; 27(12): 4675-4686, 2019 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30944991

RESUMEN

BACKGROUND: Malignant pleural mesothelioma (MPM) is a rare cancer with poor prognosis. As there is little information on the lived experience of MPM, our aim was to document the experience of MPM patients and their caregivers. METHODS: Surveys for MPM patients and caregivers were developed from previous interviews with patients, caregivers, and health professionals, about treatments and decision-making. Participants were recruited from two hospitals, government compensation body, and support groups. RESULTS: Survey responses were received from 78 MPM patients and 106 caregivers from January to September 2014. PATIENTS: 85% male, median age 69 years, median time since diagnosis 15 months. Caregivers: median age 68, 91% female, 90% spouse of MPM patient, 95% bereaved. Most participants felt informed about treatment options but only 69% thought all treatment options were discussed. Chemotherapy was discussed most frequently (92-95%); ~80% had sufficient information for decision-making. Decision regarding chemotherapy was made by patient considering doctor's opinion (24%), doctor and patient equally (18%), and doctor (17%). Participants 'agreed'/'strongly agreed' that they made the right decision about chemotherapy (patients 81%, caregivers 60%), but 5% and 16%, respectively, regretted the decision. Most participants received 'sufficient' support (71%). A quarter reported seeing cancer nurse specialists. Palliative care referral: 31% patients, 85% caregivers. Caregivers would have liked to talk to someone by themselves (41%), more time with doctors (30%), psychological support (29%), and clearer information (31%). Bereaved caregivers requested grief counselling (39%) and post-death consultation with specialists (23-25%). CONCLUSIONS: Satisfaction with treatment was high, but participants identified need for improved communication and quality information, discussion about all treatments, end-of-life assistance, and caregiver support after the patient's death.


Asunto(s)
Cuidadores/psicología , Personal de Salud/psicología , Neoplasias Pulmonares/psicología , Neoplasias Pulmonares/terapia , Mesotelioma/psicología , Mesotelioma/terapia , Adulto , Anciano , Anciano de 80 o más Años , Toma de Decisiones , Femenino , Pesar , Humanos , Masculino , Mesotelioma Maligno , Persona de Mediana Edad , Cuidados Paliativos/métodos , Relaciones Médico-Paciente , Encuestas y Cuestionarios
5.
Support Care Cancer ; 27(11): 4107-4113, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-30788627

RESUMEN

PURPOSE: According to reports, patients with lung cancer have decreased pulmonary function and exercise capacity after surgery. However, to date, physical function and health-related quality of life (HRQOL) after surgery for malignant pleural mesothelioma (MPM) have not been evaluated in detail in the convalescent phase. This study aimed to assess physical function and HRQOL of MPM patients following pleurectomy/decortication (P/D) in the convalescent phase. METHODS: The study included 16 male MPM patients who underwent P/D between September 2014 and August 2016. Physical function was assessed based on handgrip and knee extensor strengths, the six-minute walk distance (6MWD), and pulmonary function, including forced vital capacity (FVC) and forced expiratory volume in one second (FEV1). HRQOL was assessed using the Medical Outcome Study 36-item Short Form Health Survey (SF-36). The assessment was performed preoperatively, postoperatively, and 1-year after surgery. RESULTS: The 6MWD, FVC, and FEV1 values 1-year postoperatively improved significantly compared with baseline (P < 0.05 all). Additionally, the scores of six of the eight SF-36 domains were significantly improved 1 year after P/D: physical functioning, body pain, general health, vitality, social functioning, and mental health (all P < 0.05). 6MWD, FVC, and FEV1 were correlated with vitality, mental health, and physical functioning (P < 0.05 all). CONCLUSIONS: Patients with MPM who underwent P/D showed improved physical function and HRQOL compared with postoperative values in the convalescent phase. Physicians, nurses, and rehabilitation staff should note these findings, which may provide insight into the development of customized rehabilitation strategies in the convalescent phase for such patients.


Asunto(s)
Neoplasias Pulmonares/psicología , Mesotelioma/psicología , Neoplasias Pleurales/psicología , Calidad de Vida/psicología , Adulto , Anciano , Femenino , Humanos , Neoplasias Pulmonares/patología , Neoplasias Pulmonares/cirugía , Masculino , Mesotelioma/patología , Mesotelioma/cirugía , Mesotelioma Maligno , Persona de Mediana Edad , Neoplasias Pleurales/patología , Neoplasias Pleurales/cirugía
6.
BMC Cancer ; 18(1): 1173, 2018 Nov 26.
Artículo en Inglés | MEDLINE | ID: mdl-30477456

RESUMEN

BACKGROUND: To determine the psychometric properties and minimal clinically important differences (MCIDs) of the World Health Organization Quality of Life-BREF (WHOQOL-BREF) in advanced stage lung cancer patients. METHODS: Patients (n = 153) completed the WHOQOL-BREF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). Confirmatory factor analysis (CFA) was performed and reliability and construct validity determined. MCIDs were estimated with two distribution-based methods (0.5 standard deviation (SD) and 1 standard error of measurement (1 SEM)). RESULTS: CFA confirmed WHOQOL-BREF domain structure. All domains demonstrated good internal consistency (α > 0.70), except Social Relationships (α = 0.57). Nineteen of the 24 WHOQOL-BREF items had correlations of ≥ 0.40 with their intended domain. Four items had higher correlations with a domain other than their intended domain. Moderate to strong correlations were observed for corresponding domains of the two questionnaires, except for the social domains (r = 0.07). For 0.5 SD, MCIDs ranged from 0.88 to 1.55, and for 1 SEM MCIDs ranged from 1.76 to 2.72. CONCLUSIONS: The WHOQOL-BREF has satisfactory psychometric properties in patients with advanced stage lung cancer, whereas the observed MCIDs provide a method for interpretation of scores.


Asunto(s)
Neoplasias Pulmonares/epidemiología , Neoplasias Pulmonares/psicología , Mesotelioma/epidemiología , Mesotelioma/psicología , Diferencia Mínima Clínicamente Importante , Calidad de Vida , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Neoplasias Pulmonares/patología , Masculino , Mesotelioma/patología , Mesotelioma Maligno , Persona de Mediana Edad , Países Bajos/epidemiología , Psicometría , Encuestas y Cuestionarios
7.
Am J Ind Med ; 61(5): 400-412, 2018 05.
Artículo en Inglés | MEDLINE | ID: mdl-29575036

RESUMEN

BACKGROUND: The purpose of this study is to present the results of a systematic review of published research that focuses on psychological aspects of malignant mesothelioma patients and asbestos-exposed people. METHODS: Our research includes primary studies published between 1980 and 2016, using information from the Cochrane Library, the Psychology Behavioral Sciences Collection, PsychINFO, PubMed, PubGet, PubPsych, and Scopus, in compliance with PRISMA guidelines. RESULTS: We identified 12 papers that investigated the psychological distress and care needs of mesothelioma patients, and nine papers for asbestos-exposed subjects. CONCLUSIONS: This paper highlights the paucity of studies on the psychological distress and care needs of mesothelioma patients and asbestos-exposed subjects. It confirms that malignant mesothelioma is associated with the physical, emotional, and social functioning of patients, while also suggesting that the risk of developing asbestos-related diseases among asbestos-exposed subjects is associated with high levels of psychological distress, despair, and mental health difficulties.


Asunto(s)
Amianto/efectos adversos , Neoplasias Pulmonares/psicología , Mesotelioma/psicología , Exposición Profesional/efectos adversos , Estrés Psicológico , Adaptación Psicológica , Depresión/psicología , Femenino , Humanos , Neoplasias Pulmonares/epidemiología , Masculino , Mesotelioma/epidemiología , Mesotelioma Maligno , Calidad de Vida , Apoyo Social
8.
Homeopathy ; 107(4): 280-291, 2018 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-29908526

RESUMEN

INTRODUCTION: The analysis of the periodic table of elements by Jan Scholten opened the way for a new kind of classification and repertorisation of homeopathic remedies. Thereby, group analysis (resorting to series and stages) makes precise prescriptions possible. This approach appears to yield striking results, even in severe cases. Whereas Hahnemann stressed the emotional state ('Gemüthssymptome', Organon § 210) when choosing a remedy, Scholten 200 years later investigated the mental picture that represents a life conflict or even a life theme that may maintain the disease process. The person's environment, emotional traumas or a conflict drives him or her to suppress and dissect painful emotions. Such compensations can become subconscious and so strong that they can no longer be controlled; they then influence the patient with a highly destructive energy. METHODS: We present five case reports, each dealing with an unusual clinical course of severe cancer associated with homeopathic treatment using the Scholten method. RESULTS: By presenting these cases, we consider how the constitution (lifelong signs and symptoms of the patient) and the mental state are interwoven and, as a complex mechanism, might provoke disease. CONCLUSION: The appropriate homeopathic remedy, reflecting the Scholten approach, seemed to have beneficial impact on the disease process of the five individuals presented.


Asunto(s)
Homeopatía/métodos , Neoplasias/tratamiento farmacológico , Adulto , Anciano , Neoplasias Óseas/tratamiento farmacológico , Neoplasias Óseas/psicología , Bryonia/metabolismo , Compuestos de Calcio/uso terapéutico , Femenino , Homeopatía/normas , Humanos , Leucopenia/tratamiento farmacológico , Leucopenia/psicología , Neoplasias Pulmonares/tratamiento farmacológico , Neoplasias Pulmonares/psicología , Linfoma no Hodgkin/tratamiento farmacológico , Linfoma no Hodgkin/psicología , Masculino , Mesotelioma/tratamiento farmacológico , Mesotelioma/psicología , Mesotelioma Maligno , Persona de Mediana Edad , Neoplasias/psicología , Óxidos/uso terapéutico , Fósforo/uso terapéutico , Thuja/metabolismo
9.
BMC Palliat Care ; 16(1): 71, 2017 Dec 08.
Artículo en Inglés | MEDLINE | ID: mdl-29221485

RESUMEN

BACKGROUND: Mesothelioma is an aggressive thoracic tumour with a poor prognosis. The only treatment that extends survival is chemotherapy. However, in the UK, up to 50% of patients who are suitable for chemotherapy choose not to receive it, opting for active symptom control instead. The aim of this prospective, single-centre observational study was to describe the characteristics of patients who chose active symptom control over chemotherapy and explore their reasons for doing so. METHODS: Two hundred consecutive patients with mesothelioma from one UK centre were included. Eligibility for chemotherapy and choice of first-line treatment were recorded prospectively. Patient characteristics and outcomes were compared using descriptive statistics, regression analysis and survival analysis. Reasons for choosing active symptom control over chemotherapy were extracted, retrospectively. RESULTS: People who chose active symptom control were older, more likely to be female and had worse performance statuses than patients who received front-line chemotherapy. Concern over side effects, the modest survival benefit and previous adverse experiences with chemotherapy were reported as reasons for the decision. Median survival was 13.9 months in the chemotherapy group compared with 6.7 months in the active symptom control group. CONCLUSIONS: This is the first study to describe the characteristics of patients with mesothelioma who chose active symptom control over chemotherapy, in the front-line setting. Important differences were seen between this group and patients who received chemotherapy, although confounding is likely to have affected some outcomes. Future research could use qualitative methods to explore patients' reasons for choosing active symptom control, and to further elucidate the decision-making process.


Asunto(s)
Conducta de Elección , Quimioterapia Combinada/psicología , Mesotelioma/terapia , Brote de los Síntomas , Anciano , Quimioterapia Combinada/métodos , Femenino , Humanos , Masculino , Mesotelioma/psicología , Persona de Mediana Edad , Estudios Prospectivos , Estudios Retrospectivos , Análisis de Supervivencia , Reino Unido
10.
Am J Psychoanal ; 77(3): 285-294, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-28740198

RESUMEN

Life in a contaminated environment is often marked by a cumulative psychological trauma that exhibits a variety of social-environmental aspects. This is why I suggested a psychotherapeutic group intervention for the population of Casale Monferrato, a municipality in Northern Italy that is sadly renowned for asbestos-related events and the high mortality rate of its inhabitants. Groupality appears to show the point of contact between psyche and soma, while also promoting the birth of a more realistic approach to the various levels of suffering and their configuration. The multifamily approach seemed to be the most adequate to elaborate the feelings of rage and fear that are concurrent with the aerial contagion. In the "long wave" of group work we have learned to work with participants as well as with empty chairs, the ghosts of the dead: live traces in the mind. Whereas the mind recovers the possibility of entering into a dialogue with the feelings connected to the trauma, without bypassing them towards actions that are apparently more assertive of one's sense of Ego, the will of conciliation can reactivate a thought that is oriented towards the plane of reality.


Asunto(s)
Amianto/efectos adversos , Familia/psicología , Mesotelioma/psicología , Neoplasias Pleurales/psicología , Apoyo Social , Revelación de la Verdad , Humanos , Italia
11.
Health Qual Life Outcomes ; 13: 6, 2015 Jan 23.
Artículo en Inglés | MEDLINE | ID: mdl-25613110

RESUMEN

BACKGROUND: In order to estimate utilities for cancer studies where the EQ-5D was not used, the EORTC QLQ-C30 can be used to estimate EQ-5D using existing mapping algorithms. Several mapping algorithms exist for this transformation, however, algorithms tend to lose accuracy in patients in poor health states. The aim of this study was to test all existing mapping algorithms of QLQ-C30 onto EQ-5D, in a dataset of patients with malignant pleural mesothelioma, an invariably fatal malignancy where no previous mapping estimation has been published. METHODS: Health related quality of life (HRQoL) data where both the EQ-5D and QLQ-C30 were used simultaneously was obtained from the UK-based prospective observational SWAMP (South West Area Mesothelioma and Pemetrexed) trial. In the original trial 73 patients with pleural mesothelioma were offered palliative chemotherapy and their HRQoL was assessed across five time points. This data was used to test the nine available mapping algorithms found in the literature, comparing predicted against observed EQ-5D values. The ability of algorithms to predict the mean, minimise error and detect clinically significant differences was assessed. RESULTS: The dataset had a total of 250 observations across 5 timepoints. The linear regression mapping algorithms tested generally performed poorly, over-estimating the predicted compared to observed EQ-5D values, especially when observed EQ-5D was below 0.5. The best performing algorithm used a response mapping method and predicted the mean EQ-5D with accuracy with an average root mean squared error of 0.17 (Standard Deviation; 0.22). This algorithm reliably discriminated between clinically distinct subgroups seen in the primary dataset. CONCLUSIONS: This study tested mapping algorithms in a population with poor health states, where they have been previously shown to perform poorly. Further research into EQ-5D estimation should be directed at response mapping methods given its superior performance in this study.


Asunto(s)
Algoritmos , Indicadores de Salud , Neoplasias Pulmonares/psicología , Mesotelioma/psicología , Calidad de Vida/psicología , Encuestas y Cuestionarios/normas , Anciano , Femenino , Humanos , Modelos Lineales , Neoplasias Pulmonares/diagnóstico , Masculino , Mesotelioma/diagnóstico , Mesotelioma Maligno , Persona de Mediana Edad , Estudios Prospectivos , Análisis de Regresión , Reproducibilidad de los Resultados
12.
J Psychosoc Oncol ; 32(4): 463-75, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-24794734

RESUMEN

Individuals with an asbestos-related diagnosis and their carers face burdens including debilitating and life-limiting physical symptoms and medico-legal stressors. Feelings of social isolation are common. Increasing social connectedness can lead to increased feelings of personal empowerment and may inhibit chronic stress responses. The authors report on the development, via a process of participatory action research, of an online peer-to-peer support group, and the first 30-day test phase of this virtual community. Initial indications are that individuals with an asbestos-related diagnosis and their carers can benefit, in psychosocial terms, from membership of an on-line support group comprised of experientially similar others.


Asunto(s)
Amianto/efectos adversos , Cuidadores/psicología , Internet , Mesotelioma/etiología , Mesotelioma/psicología , Grupo Paritario , Apoyo Social , Femenino , Humanos , Relaciones Interpersonales , Masculino , Proyectos Piloto , Evaluación de Programas y Proyectos de Salud , Aislamiento Social/psicología
13.
BMJ Open ; 14(6): e075071, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38951010

RESUMEN

OBJECTIVES: Mesothelioma is an aggressive cancer predominantly affecting the lung and abdominal linings. It can have a unique impact on mental health and well-being (MHWB) due to its incurability, poor prognosis and asbestos-exposure causation. This review's aims were to identify/synthesise international evidence on mesothelioma's MHWB impacts; explore MHWB interventions used by patients and carers; and identify evidence of their effectiveness. DESIGN: Systematic review. DATA SOURCES: Databases, searched March 2022 and March 2024, were MEDLINE; CINAHL; PsycINFO; Cochrane Library; ASSIA. ELIGIBILITY CRITERIA: We included study designs focusing on psychological impacts of living with mesothelioma and MHWB interventions used by patients and informal carers, published in English since January 2002. DATA EXTRACTION AND SYNTHESIS: A team of reviewers screened included studies using standardised methods. Quality was assessed using validated tools: Mixed-Methods Appraisal tool for primary research and Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews. RESULTS: Forty-eight studies met the inclusion criteria: 20 qualitative, 16 quantitative, nine reviews, two mixed-methods, one combined systematic review/qualitative study. UK studies predominated. Many MHWB impacts were reported, including traumatic stress, depression, anxiety and guilt. These were influenced by mesothelioma's causation, communication issues and carer-patient relational interactions. Participants used wide-ranging MHWB interventions, including religious/spiritual practice; talking to mental-health professionals; meaning-making. Some strategies were presented as unhelpful, for example, denial. Participants reported lack of access to support. CONCLUSIONS: Most qualitative studies were rated high quality. The quality of the quantitative studies and reviews varied. The sparse literature regarding MHWB in mesothelioma means more research is needed into impacts on patients and carers, including trauma. To enable access to evidence-based support, research is recommended concerning MHWB interventions' effectiveness in mesothelioma. PROSPERO REGISTRATION NUMBER: CRD42022302187.


Asunto(s)
Cuidadores , Salud Mental , Mesotelioma , Humanos , Mesotelioma/psicología , Mesotelioma/terapia , Cuidadores/psicología , Calidad de Vida , Ansiedad/etiología , Depresión/etiología
14.
Eur J Oncol Nurs ; 70: 102572, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38640636

RESUMEN

PURPOSE: Mesothelioma is an incurable, asbestos related cancer with a poor prognosis. Little is known about how patients and carers living with the condition manage their mental health and wellbeing needs. This paper reports findings on interventions being used by patients and informal carers living with mesothelioma and those which they find most helpful. METHODS: In-depth interviews with patients (n = 10) and (informal) carers (n = 11) living with mesothelioma in the UK. We analysed our data inductively using a reflexive thematic analysis approach. RESULTS: Participants described the importance of both smaller and larger actions and strategies which helped with their mental health. This included spending more time with family and friends and going on holidays. Professionals who participants said supported their mental health journey included not only specialist nurses and mental health professionals but also legal and Asbestos Support Group professionals. The latter demonstrates the unique needs and support required for this population. Exposure to asbestos as the cause of mesothelioma, has led to a social justice aspect of the experience of living with this cancer. Participants reported the importance of collective action to their mental health and wellbeing. The data indicate that patients and carers may have distinct mental health and wellbeing requirements and need to manage these in different ways at different times. CONCLUSIONS: Findings have implications for nurses and other key professionals working in healthcare, community and legal settings supporting this client group, and for those living with mesothelioma who want to understand ways to enhance their own wellbeing.


Asunto(s)
Cuidadores , Salud Mental , Mesotelioma , Investigación Cualitativa , Humanos , Masculino , Femenino , Persona de Mediana Edad , Cuidadores/psicología , Anciano , Mesotelioma/psicología , Reino Unido , Calidad de Vida , Adulto , Apoyo Social , Adaptación Psicológica , Anciano de 80 o más Años , Entrevistas como Asunto
15.
Eur J Oncol Nurs ; 70: 102545, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38522172

RESUMEN

PURPOSE: Mesothelioma is an incurable, asbestos-related cancer with a poor prognosis. There is scant evidence about the mental health and well-being impacts on patients and carers living with the illness. This study aimed to investigate mesothelioma's impact on mental health and well-being and the scale of mental health conditions in patients and informal carers. METHODS: A mixed-methods design was used: a cross-sectional survey of mesothelioma patients and informal carers plus semi-structured interviews with patients and carers. The survey used validated scales collecting data on mental health aspects of mesothelioma: the EQ5D to assess health-related quality-of-life; the Hospital Anxiety and Depression scale; the PCL-5 to assess Posttraumatic Stress; and the Posttraumatic Growth Inventory. The datasets were integrated during analysis. RESULTS: 96 useable survey responses were received. A clinical level of depression was reported by 29 participants (30.21%), of anxiety by 48 (50%), of posttraumatic distress disorder by 32 (33.33%), and of posttraumatic growth by 34 (35.42%). Carers had worse scores than patients. Three main themes were developed from interviews with 10 patients and 11 carers: 'Prognosis', 'Support from services', and 'Social connections and communication'. CONCLUSIONS: Healthcare professionals delivering a mesothelioma diagnosis require regular training in communication skills plus updating in current treatment options, so they provide an appropriate mix of realism and hope. Better signposting to mental health support is needed for patients and carers. Our introduction of posttraumatic growth into the mesothelioma literature is novel. We recommend specialist nurses are trained to recognise, understand, and foster posttraumatic growth.


Asunto(s)
Cuidadores , Mesotelioma , Calidad de Vida , Humanos , Masculino , Femenino , Mesotelioma/diagnóstico , Mesotelioma/psicología , Estudios Transversales , Persona de Mediana Edad , Anciano , Cuidadores/psicología , Adulto , Salud Mental , Depresión/epidemiología , Depresión/diagnóstico , Ansiedad/epidemiología , Ansiedad/diagnóstico , Anciano de 80 o más Años , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/epidemiología , Encuestas y Cuestionarios , Mesotelioma Maligno/diagnóstico
16.
Psychooncology ; 22(7): 1528-33, 2013 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-22903737

RESUMEN

OBJECTIVE: This study explores patient's experience during the first 3 months following a diagnosis of malignant pleural mesothelioma. METHODS: This study uses a grounded theory approach with semi-structured, face-to-face interviews with 10 patients during the first 3 months following diagnosis. RESULTS: The key concept that emerged from the data was this: Uncertainty and lack of control leading to emotional, physical and psychosocial distress. Three themes informed the key concept: ' it's all bad news', 'good and bad days' and strategies of amelioration. Patients worked with a short-term perspective on their illness but worried about the long-term outcome and the speed of their deterioration. CONCLUSIONS: Patients receive insufficient psychosocial support during the first 3 months following diagnosis. An early palliative care referral would improve support and referral strategies during the first 3 months of the disease.


Asunto(s)
Emociones , Mesotelioma/diagnóstico , Mesotelioma/psicología , Neoplasias Pleurales/diagnóstico , Neoplasias Pleurales/psicología , Anciano , Anciano de 80 o más Años , Femenino , Estudios de Seguimiento , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Incertidumbre
17.
Support Care Cancer ; 21(1): 87-95, 2013 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-22644259

RESUMEN

PURPOSE: The aims of this study were to investigate the impact of individual health-related quality of life (HRQL) evaluation on the attention towards symptom control and psychosocial function in advanced cancer patients. METHODS: Patients with advanced lung cancer or mesothelioma who attended a pulmonary oncology outpatient clinic were randomized to either of two strategies for HRQL assessment. The experimental group (EG) answered the EORTC QLQ-C30 + LC13 questionnaire using a digital table interface, with outprint of aggregated scale scores presented to the consulting physician as a support for evaluation. The control group (CG) answered a paper version of the same questionnaire, which was stored for later analysis. Consultations were audio-recorded. Outcome measures were a quantitative content analysis of audio-recorded consultations and medical and psychosocial interventions abstracted from clinical records. RESULTS: One hundred seventy-one patients were randomized and participated in the study. Issues regarding emotional function were more frequently discussed during consultations in the EG (p < 0.05). Similarly, interventions directed to emotional and social concerns were more frequent in the EG (p = 0.013 and p = 0.0036, respectively). HRQL measures over time were similar across the groups. CONCLUSION: Individual HRQL assessment increased the attention to psychosocial functioning in patients with chest malignancies.


Asunto(s)
Neoplasias Pulmonares , Mesotelioma , Cuidados Paliativos/métodos , Neoplasias Pleurales , Pautas de la Práctica en Medicina , Calidad de Vida , Evaluación de Síntomas , Adulto , Anciano , Anciano de 80 o más Años , Atención , Toma de Decisiones , Estudios de Factibilidad , Femenino , Humanos , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/psicología , Neoplasias Pulmonares/terapia , Masculino , Mesotelioma/diagnóstico , Mesotelioma/psicología , Mesotelioma/terapia , Persona de Mediana Edad , Neoplasias Pleurales/diagnóstico , Neoplasias Pleurales/psicología , Neoplasias Pleurales/terapia , Estudios Prospectivos , Psicometría , Encuestas y Cuestionarios , Suecia , Evaluación de Síntomas/métodos
18.
Health Psychol ; 41(5): 343-355, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35201802

RESUMEN

OBJECTIVE: Mesothelioma is a life limiting cancer caused by previous exposure to asbestos. Due to the continued use of asbestos products internationally, the condition presents an increasing risk to global health with case numbers peaking in industrially developed nations. With the cancer reducing patient well-being, this study aimed to synthesizes the qualitative findings of studies exploring the experiences of patients living with mesothelioma to generate new conceptual insights and guide therapeutic care. METHOD: Thirteen databases were systematically searched: Academic Search Premier, BioMed Central, British Nursing Database, CINAHL Plus, Cochrane Library, Europe PubMed Central, MEDLINE, PsycARTICLES, PsycINFO, Science Direct, Scopus, Social Care Online, and Web of Science, between August and September 2020. Included articles were subject to quality appraisal using CASP checklists, and their respective findings analyzed using a metaethnographic form of qualitative data synthesis. RESULTS: Twenty-two articles met the inclusion criteria, and the data synthesis produced three themes: (1) "complex trauma"; (2) "psycho-behavioral coping strategies"; and (3) "external sources of support." Combined, these themes form a novel conceptual framework and awareness of the patient experience that presents the lived trauma of disease alongside a patients coping processes and support pathways. CONCLUSION: Robust therapeutic support is needed to address the psychosocial and existential burden shouldered by people with mesothelioma. Therapies that promote sentiments of acceptance, hope, and benefit finding are proposed alongside initiatives that foster patient empowerment and meaning, and further promote patient choice in deciding end-of-life care. Recommendations for future research are also made. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Asunto(s)
Adaptación Psicológica , Mesotelioma , Europa (Continente) , Humanos , Mesotelioma/etnología , Mesotelioma/psicología , Mesotelioma/terapia
19.
J Cancer Educ ; 26(4): 641-8, 2011 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-20949381

RESUMEN

The theory of planned behavior explores the relationship between behavior, beliefs, attitudes, and intentions presupposing that behavioral intention is influenced by a person's attitude about the behavior and beliefs about whether individuals, who are important to them, approve or disapprove of the behavior (subjective norm). An added dimension to the theory is the idea of perceived behavioral control, or the belief that one has control over performing the behavior. The theory of planned behavior suggests that people may make greater efforts to perform a behavior if they feel they have a high level of control over it. In this examination of data, we explored the application of the theory of planned behavior to patient's decisions about participating in a clinic trial. Twelve respondents in this study had previously participated in a clinical trial for lung cancer and nine respondents had declined a clinical trial for lung cancer. The data were analyzed with regard to the four constructs associated with the theory of planned behavior: behavioral intention, attitude, subjective norm, and perceived behavioral control. Results indicate that the theory of planned behavior may be a useful tool to examine psychosocial needs in relation to behavioral intention of clinical trial participation.


Asunto(s)
Conductas Relacionadas con la Salud , Neoplasias Pulmonares/psicología , Adulto , Anciano , Anciano de 80 o más Años , Actitud Frente a la Salud , Carcinoma de Pulmón de Células no Pequeñas/prevención & control , Carcinoma de Pulmón de Células no Pequeñas/psicología , Ensayos Clínicos como Asunto , Toma de Decisiones , Femenino , Humanos , Neoplasias Pulmonares/prevención & control , Masculino , Mesotelioma/prevención & control , Mesotelioma/psicología , Persona de Mediana Edad , Participación del Paciente , Teoría Psicológica , Proyectos de Investigación , Carcinoma Pulmonar de Células Pequeñas/prevención & control , Carcinoma Pulmonar de Células Pequeñas/psicología
20.
Eur J Oncol Nurs ; 50: 101889, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-33422732

RESUMEN

PURPOSE: The UK has the highest incidence of mesothelioma in the world. Evidence in the United States suggests that mesothelioma may disproportionately affect military veterans. However, there has been no investigation of the experience of UK veterans living with mesothelioma. The Military Mesothelioma Experience Study (MiMES) aimed to understand the experience and health/support needs of British Armed Forces personnel/veterans with mesothelioma. METHODS: Semi-structured interviews were conducted with 13 veterans living with mesothelioma, and nine family members of veterans living with mesothelioma. Participants were recruited via charities and asbestos support groups. Data were analysed using thematic analysis. RESULTS: Participants' experiences are presented using three themes, i) exposure to asbestos and awareness of asbestos related diseases, ii) using military strategies to cope with mesothelioma and iii) preferences for information and support. MiMES indicates that the nature and range of UK military veterans' asbestos exposure is varied and not limited to high risk occupations. Participants' knowledge of asbestos and experience of mesothelioma influenced their experiences of diagnosis. Participants had coping strategies influenced by their military experiences. Assistance in navigating health and military systems was considered beneficial, especially if support was provided by professionals with knowledge or experience of the military. Attributes which may inhibit veterans from seeking professional support are discussed. CONCLUSION: MiMES provides insight into how UK military veterans experience and cope with mesothelioma. Key implications focus on the role that Mesothelioma Nurse Specialists, Asbestos Support Groups and veterans groups play in providing acceptable support for UK veterans.


Asunto(s)
Mesotelioma/psicología , Veteranos/psicología , Adaptación Psicológica , Adulto , Anciano , Anciano de 80 o más Años , Amianto/toxicidad , Familia/psicología , Femenino , Humanos , Acontecimientos que Cambian la Vida , Masculino , Mesotelioma/enfermería , Persona de Mediana Edad , Personal Militar/psicología , Investigación Cualitativa , Grupos de Autoayuda , Reino Unido
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