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1.
BMC Palliat Care ; 23(1): 122, 2024 May 17.
Artigo em Inglês | MEDLINE | ID: mdl-38760809

RESUMO

BACKGROUND: Annually, approximately five per cent of dependent children - aged under eighteen years - in the United Kingdom (UK), experience parental death. Nurses and social workers caring for parents with life-limiting illnesses, including cancer, help families support their children. However, these professionals have been found to lack confidence and competence in fulfilling this role. METHODS: We conducted three rounds of a classic-Delphi survey to identify and measure a panel of topic experts' consensus on the priorities and issues for nurses and social workers when supporting families and children through parental death. The Delphi survey was conducted with a panel of UK topic experts (n=43) including lead health and social care professionals (n=30), parents bereaved of a partner whilst parenting dependent children (n=6), academics (n=4) and bereaved young adults (n=3). RESULTS: Ninety per cent (n=18/20) of the issues for nurses and social workers and all (7/7) of the priorities rated and ordered in the survey achieved consensus. Key priorities were 1) training in opening conversations with families about dependent children, 2) training and support for nurses and social workers to manage their own and others' emotions arising from conversations with parents about children's needs regarding parental death, and 3) increasing nurses' and social workers' knowledge of sources of information to support families before the death of a parent. CONCLUSION: We identified priorities for UK nurses and social workers. Further research is needed to identify which of these nurses and social workers would benefit most from support, and how any resultant interventions could enhance confidence and competence in helping families to support children through parental death.


Assuntos
Técnica Delphi , Assistentes Sociais , Humanos , Assistentes Sociais/psicologia , Reino Unido , Adulto , Feminino , Masculino , Enfermeiras e Enfermeiros/psicologia , Inquéritos e Questionários , Morte Parental/psicologia , Criança , Competência Clínica/normas , Pessoa de Meia-Idade
2.
Int Nurs Rev ; 2024 Sep 29.
Artigo em Inglês | MEDLINE | ID: mdl-39344174

RESUMO

AIM: To explore the interplay between the perceived nursing work environment, general self-efficacy, and compassion fatigue among registered nurses in Chinese hospitals. BACKGROUND: Compassion fatigue emerges as a significant occupational stress response globally, with the nursing work environment being a pivotal influencer. There is a knowledge gap in understanding how the nursing work environment and general self-efficacy interrelate to affect compassion fatigue, particularly among Chinese nurses. METHODS: Employing a cross-sectional, descriptive design, this study utilized validated questionnaires to gather data from 7085 nurses across public and private hospitals in China. The analysis focused on assessing the interrelations among the perceived nursing work environment, general self-efficacy, and different dimensions of compassion fatigue. FINDING: More than half (65.67%) of the participants experienced moderate or high burnout levels, with 76.43% experiencing secondary traumatic stress. The lowest rating in the nursing work environment was for nurse/physician collaboration (10 ± 2.07), while general self-efficacy scored higher (27.54 ± 6.26). A positive relationship existed between the work environment and both general self-efficacy and compassion satisfaction, with a negative correlation to burnout and traumatic stress. General self-efficacy was a partial mediator in the link between work environment and compassion fatigue, suggesting that improving the work environment can decrease compassion fatigue by boosting nurses' self-efficacy. CONCLUSION: This study underscores the profound impact of the nursing work environment on compassion fatigue, mediated by general self-efficacy. It highlights the necessity of fostering a supportive work environment to enhance nurses' self-efficacy and overall well-being. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Healthcare managers and institutions must create supportive work environments to reduce compassion fatigue among nurses. This includes professional development programs to enhance self-efficacy and job satisfaction. Policies should address high workloads and inadequate support. Nurse leaders should foster environments that promote psychological well-being, improving outcomes for both nurses and patients. Regular assessments and adjustments of work conditions are essential to maintain a healthy work environment.

3.
Support Care Cancer ; 31(10): 591, 2023 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-37749433

RESUMO

PURPOSE: This study investigated the mediating role of individual resilience in the relationship between caregiver burden and quality of life (QoL) among Chinese adult children providing care to their parents with advanced cancer, with the aim to inform effective coping strategies and positive caregiving outcomes. METHODS: In a cross-sectional design, 614 caregivers from multiple centers, whose parents were undergoing chemotherapy and/or radiotherapy, completed questionnaires encompassing demographics, caregiver burden, symptoms of anxiety and depression, resilience, and QoL. RESULTS: Findings revealed a moderate level of caregiver burden among participants, significantly influenced by factors including education level, family income, single-child status, and participation in social media patient support groups. Caregivers who were only children or involved in patient support groups reported higher burden. Importantly, path analysis showed a significant impact of caregiver burden, anxiety, and depression on QoL, with these relationships being mediated by individual resilience. CONCLUSIONS: Chinese adult child caregivers face a considerable burden, negatively influencing their QoL. Individual resilience, a modifiable factor, was identified as a critical mediator in this relationship, mitigating the negative implications of caregiver burden, anxiety, and depression. These findings underscore the need for caregiver interventions that consider not only demographics but also the socio-psychological dynamics of caregiving to enhance caregiver QoL.


Assuntos
Adaptação Psicológica , Cuidadores , População do Leste Asiático , Neoplasias , Qualidade de Vida , Resiliência Psicológica , Adulto , Humanos , Filhos Adultos/psicologia , Estudos Transversais , População do Leste Asiático/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Pais , Cuidadores/psicologia
4.
BMC Palliat Care ; 22(1): 176, 2023 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-37946173

RESUMO

BACKGROUND: Various factors have been found to be associated with high levels of death anxiety experienced by oncology nurses. The aim of this study was to use a person-oriented approach to examine the death anxiety patterns of Chinese oncology nurses and to analyze the differences in anxiety characteristics and their associated influencing factors. METHODS: A cross-sectional survey regarding palliative care among registered oncology nurses was conducted in Jiangsu Province, China.Latent class analyses was applied to identify their patterns of death anxiety. The score of PCQN-C (The Chinese version of the Palliative Care Quiz for Nursing) and FATCOD-B-C (The Chinese version of the Frommelt Attitude Toward Care of the Dying scale), the demographic and working characteristics were further analyzed through covariance analysis (ANCOVA) and multivariate (or logistic) regression across the subgroups. RESULTS: A two-potential-category model was selected based on the fit index. The results showed that 79% of oncology nurses belonged to the high pressure and pain group and 21% belonged to the low death anxiety group. The high pressure and pain group had significantly higher scores in the dimensions of emotion, stress and pain, time awareness, and cognition compared to the low death anxiety group. Factors influencing the high pressure and pain group included shorter working years, non-national or provincial oncology nursing specialists, non-national palliative care specialists, never discussing the topic of death with patients or family members, no palliative care related training, and PCQN and FATCOD scores. CONCLUSIONS: Our study suggests that oncology nurses' death anxiety can be divided into two categories: low death anxiety and high stress pain, and certain factors, such as being female, having a short work experience, and lacking palliative care-related training, increase the likelihood of death anxiety.


Assuntos
Enfermeiras e Enfermeiros , Assistência Terminal , Humanos , Feminino , Masculino , Assistência Terminal/psicologia , Análise de Classes Latentes , Estudos Transversais , Atitude do Pessoal de Saúde , Cuidados Paliativos/psicologia , Dor , Inquéritos e Questionários , Ansiedade
5.
BMC Palliat Care ; 21(1): 56, 2022 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-35473551

RESUMO

BACKGROUND: Most nurses in China have not been trained to take care of end-of-life patients appropriately due to lack of educational resources and insufficient training. A palliative care program was launched by the Jiangsu Nursing Association (JNA training program) and to identify gaps in palliative care training. The main aim of this study was to evaluate the training effects of the JNA training program on nurses' knowledge and attitudes to palliative care. METHODS: A cross-sectional study was conducted with 10 048 registered nurses in all regions of Jiangsu. All participants completed an online questionnaire using the Chinese version of The Palliative Care Quiz for Nursing (PCQN-C) and the Frommelt Attitude Toward Care of the Dying scale (FATCOD-B-C). A propensity score matched analysis was performed between the nurses who had attended the JNA training program and whose who hadn't. RESULTS: The average score of PCQN-C among all nurses was 8.79, while the mean score of the FATCOD-B-C was 103.62. Those participants who attended the JNA training program had significantly better scores than those who did not. Propensity score matching analysis showed that the palliative care training program failed to improve nurses' knowledge in psychosocial and spiritual care or their attitudes towards the necessity of family support although there was positive impact on other aspects of palliative care. CONCLUSIONS: Knowledge of palliative care among Chinese nurses remains low. Training programs may improve general knowledge and attitudes to palliative care. However, important aspects of knowledge such as communication skills, family support, and psychosocial aspects of care, are missing. These gaps should be filled in future palliative care training programs targeting nurses with oriental culture background.


Assuntos
Enfermeiras e Enfermeiros , Cuidados Paliativos , Atitude Frente a Morte , Competência Clínica , Estudos Transversais , Educação Continuada , Humanos , Cuidados Paliativos/psicologia
6.
Nurs Inq ; 29(2): e12427, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34143918

RESUMO

Although disgust is recognized as a common and prominent emotion in healthcare, little is known about how healthcare professionals understand, experience and conceptualize disgust. The aim of the study was to gain an in-depth understanding of how nursing and midwifery students experience, understand and cope with disgust in their clinical work. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Six participants (all women: two nursing students, four midwifery students) from a university in the South of England were interviewed. Four superordinate themes with eight subthemes were identified. Overall, findings suggest that participants experience both moral and physical disgust; however, they find it difficult to talk about and use other terms to describe their experience. Findings are discussed through the lens of social identity theory, to understand the relevance of professional identity and how this might further maintain the disgust taboo. The strategies participants have developed in order to cope with disgust are explored and understood within the current healthcare climate. Future research should focus on ways of addressing the experience of disgust by healthcare professionals in order to improve the quality of care provided, especially in the climate of the COVID-19 crisis.


Assuntos
COVID-19 , Asco , Tocologia , Estudantes de Enfermagem , Emoções , Feminino , Humanos , Tocologia/educação , Gravidez , Pesquisa Qualitativa , Estudantes de Enfermagem/psicologia
7.
Eur J Cancer Care (Engl) ; 30(6): e13498, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34339095

RESUMO

OBJECTIVE: Mesothelioma is a rare cancer with a poor prognosis caused by exposure to asbestos. Psychosocial support and care for mesothelioma patients and their carers is limited and not tailored to their specific needs. The aim of this study was to explore patients' and carers' needs and experiences regarding psychosocial support and their coping mechanisms dealing with psychosocial problems. METHODS: A qualitative study was performed using semi-structured interviews with both mesothelioma patients and their carers. Participants were recruited through two specialised hospitals and two patient organisations. All interviews were transcribed verbatim and thematically analysed. RESULTS: Ten patients (70% male, mean age 67.7) and five carers (20% male, mean age 65) participated in the study. The main themes identified for patients were active coping, limited needs and limited knowledge and awareness about psychosocial support. The main themes for carers were passive coping and 'it's all about the patient'. CONCLUSION: Mesothelioma patients do not seem to have high needs for psychosocial support, whereas carers do. However, knowledge about and awareness of psychosocial support is low among mesothelioma patients. The findings from this study should be used to adjust guidelines for psychosocial support in mesothelioma patients and their carers.


Assuntos
Mesotelioma Maligno , Mesotelioma , Adaptação Psicológica , Idoso , Cuidadores , Feminino , Humanos , Masculino , Mesotelioma/terapia , Pesquisa Qualitativa
8.
Eur J Cancer Care (Engl) ; 30(6): e13509, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34498770

RESUMO

OBJECTIVE: To assess perspectives and experiences of healthcare professionals and other relevant stakeholders regarding psychosocial support and palliative care in mesothelioma patients and their relatives, to identify gaps and to explore potential improvements in current healthcare. METHODS: Individual, semi-structured interviews were conducted with healthcare professionals and other relevant stakeholders. Interviews were transcribed verbatim and analysed thematically using ATLAS.ti. RESULTS: In total, 16 respondents participated in an interview (69% women; mean age: 51.8 years (SD 12.41; range 28-75)). Four key themes were identified: (1) availability of tailored psychosocial and palliative care, (2) timely integration and organisation of psychosocial support and palliative care, (3) differences in provided support and care between healthcare professionals and hospitals and (4) training of healthcare professionals and stakeholders on psychosocial problems. CONCLUSION: Our study showed that psychosocial support and palliative care for patients with mesothelioma could be improved. A more fluent transition between primary and secondary cancer care and early integration of psychosocial support and palliative care is advised. Lastly, more attention is needed for psychosocial and palliative care in the basic medical training of healthcare professionals.


Assuntos
Mesotelioma , Cuidados Paliativos , Atenção à Saúde , Feminino , Pessoal de Saúde , Humanos , Masculino , Mesotelioma/terapia , Pessoa de Meia-Idade , Pesquisa Qualitativa
9.
J Med Internet Res ; 22(11): e19180, 2020 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-33180025

RESUMO

BACKGROUND: Patients with malignant pleural mesothelioma (MPM) have a life-limiting illness and short prognosis and experience many debilitating symptoms from early in the illness. Innovations such as remote symptom monitoring are needed to enable patients to maintain wellbeing and manage symptoms in a proactive and timely manner. The Advanced Symptom Management System (ASyMS) has been successfully used to monitor symptoms associated with cancer. OBJECTIVE: This study aimed to determine the feasibility and acceptability of using an ASyMS adapted for use by patients with MPM, called ASyMSmeso, enabling the remote monitoring of symptoms using a smartphone. METHODS: This was a convergent mixed methods study using patient-reported outcome measures (PROMs) at key time points over a period of 2-3 months with 18 patients. The Sheffield Profile for Assessment and Referral for Care (SPARC), Technology Acceptance Model (TAM) measure for eHealth, and Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) were the PROMs used in the study. Patients were also asked to complete a daily symptom questionnaire on a smartphone throughout the study. At the end of the study, semistructured interviews with 11 health professionals, 8 patients, and 3 carers were conducted to collect their experience with using ASyMSmeso. RESULTS: Eighteen patients with MPM agreed to participate in the study (33.3% response rate). The completion rates of study PROMs were high (97.2%-100%), and completion rates of the daily symptom questionnaire were also high, at 88.5%. There were no significant changes in quality of life, as measured by LCSS-Meso. There were statistically significant improvements in the SPARC psychological need domain (P=.049) and in the "Usefulness" domain of the TAM (P=.022). End-of-study interviews identified that both patients and clinicians found the system quick and easy to use. For patients, in particular, the system provided reassurance about symptom experience and the feeling of being listened to. The clinicians largely viewed the system as feasible and acceptable, and areas that were mentioned included the early management of symptoms and connectivity between patients and clinicians, leading to enhanced communication. CONCLUSIONS: This study demonstrates that remote monitoring and management of symptoms of people with MPM using a mobile phone are feasible and acceptable. The evidence supports future trials using remote symptom monitoring to support patients with MPM at home.


Assuntos
Mesotelioma Maligno/terapia , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Mesotelioma Maligno/mortalidade , Mesotelioma Maligno/patologia , Pessoa de Meia-Idade , Prognóstico , Análise de Sobrevida
10.
Psychooncology ; 28(6): 1321-1327, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30953381

RESUMO

OBJECTIVE: The aim of this study was to explore Trinidad and Tobago (TT) men's prediagnosis experiences of prostate cancer (PCa). This study is part of a wider project that examined men and their partners' experiences of routes to diagnosis for PCa in TT. METHODS: Men (n = 51) were voluntarily recruited to semi-structured interviews from four centres. Data were analysed following principles of grounded theory. RESULTS: Major barriers to medical help seeking were highlighted as lack of knowledge and awareness of the prostate gland and symptoms of PCa, the digital rectal exam (DRE), prostate-specific antigen (PSA), cultural and religious beliefs, and hegemonic masculinity norms and nonreporting of bodily changes to GPs. Fear of DRE, distrust in providers, and misinterpretation of bodily changes as related to ageing and diabetes mellitus also contributed to delays towards seeking medical help. Men's interactions with pharmacists and traditional healers lengthened the time taken to consult with health care providers for prostate concerns. CONCLUSIONS: TT men's PCa prediagnosis experiences are important to unearth barriers and facilitators to care along routes to diagnosis for this disease. This can help target specific health promotion strategies to motivate men to seek medical care for symptoms in a timely manner.


Assuntos
População Negra/etnologia , Detecção Precoce de Câncer/psicologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Neoplasias da Próstata/diagnóstico , Adulto , Idoso , Região do Caribe/etnologia , Humanos , Masculino , Pessoa de Meia-Idade , Trinidad e Tobago/etnologia
11.
Palliat Med ; 33(1): 49-65, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30371147

RESUMO

BACKGROUND:: Children need to be prepared for the death of a parent and supported afterwards. Parents seek support from health and social care professionals to prepare their children. Support is not always forthcoming. AIM:: To systematically identify, analyse and synthesise literature reporting of the experiences of health and social care professionals when supporting parents and children during, and following, the death of a parent. DESIGN:: A systematically constructed qualitative review and thematic synthesis. Registered on Prospero (CRD42017076345). DATA SOURCES:: MEDLINE, CINAHL, Embase, PsycINFO, PsycARTICLES and PROSPERO, searched from January 1996 to July 2018 for qualitative studies in English, containing verbatim reporting of health and social care professionals' experiences of supporting parents and children during, and following, the death of a parent. Qualitative data were appraised using a modified Critical Appraisal Skills Programme qualitative appraisal checklist. RESULTS:: The search yielded 15,758 articles. Of which, 15 met the inclusion criteria. A total of 13 included professionals' experiences of supporting parents and children before parental death. Two included experiences of supporting surviving parents and children afterwards. Three analytical themes identified as follows: (1) aspiring to deliver family-focussed care, (2) health and social care professionals' behaviours and emotions and (3) improving connections with parents and children. Connecting empathically with parents and children to prepare and support children entails significant emotional labour. Professionals seek to enhance their confidence to connect. CONCLUSION:: Professionals struggle to connect empathically with parents and their children to prepare and to support children when a parent is dying and afterwards. Awareness of professionals' needs would enable provision of appropriate support for parents and children.


Assuntos
Empatia , Pessoal de Saúde/psicologia , Relações Pais-Filho , Morte Parental/psicologia , Pais/psicologia , Relações Profissional-Família , Adolescente , Adulto , Atitude do Pessoal de Saúde , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
12.
Nurs Older People ; 29(1): 27-35, 2017 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-28136022

RESUMO

Aim To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Method A two-phase exploratory mixed methods design was used, evaluating the effect of an end of life care toolkit and associated training in care homes, facilitated by a specialist palliative care team. Six care homes in England were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; and pre- and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results Staff confidence in receiving emotional and clinical support and managing end of life care symptoms increased post-intervention, but confidence in discussing death and dying with residents and relatives decreased. Audit data indicate greater reduction in the number of residents from participating care homes dying in hospital than those from comparison homes. Conclusion Collaborative end of life care interventions support care home staff to manage end of life and may enable residents to have choice about their place of death.


Assuntos
Assistência Terminal , Idoso , Idoso de 80 Anos ou mais , Avaliação Geriátrica , Humanos , Casas de Saúde , Encaminhamento e Consulta , Inquéritos e Questionários
13.
Int J Nurs Stud Adv ; 7: 100226, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-39155969

RESUMO

Background: The coronavirus (COVID-19) pandemic presented unprecedented challenges to healthcare systems worldwide, with intensive care unit (ICU) nurses at the forefront of patient care. To date, there is limited evidence into ICU nurses'experiences of the pandemic in Kuwait. Research question/aims/objectives: To elucidate the challenges faced by ICU nurses in Kuwait during the pandemic, by considering two research questions: "What contributed to intensified pressure for the ICU nurses?" and "How were the nurses affected?". Research design: This was a qualitative study which utilised semi-structured interviews. Interviews were conducted between January 2021 and June 2022 with ICU nurses who worked during the COVID-19 pandemic. The data were analysed using Charmaz's grounded theory methodology. Participants and research context: 25 nurses from three ICUs in Kuwait. Ethical considerations: The study was approved by the University Ethics Committee and by the Ministry of Health in Kuwait. Findings/Results: The analysis identified two themes (the factors contributing to intensified pressure in the ICU, and the impact on the nurses) and seven sub-themes. The pressure in the ICU intensified due to the rise in the number of patients, staff shortages, and the requirement to adhere to unrealistic new procedures for infection control. Restricted and cancelled leave, as well as impaired autonomy at work, impeded the nurses' ability to recover from stress. The heightened stress also contributed to a worsening in interpersonal relationships between the nurses and their colleagues. The nurses' care was compromised by these challenges, leading to moral distress and a range of mental health symptoms (e.g., stress, anxiety, emotional exhaustion). Conclusions: The study accords with other research conducted during the pandemic in revealing a significant mental health toll among healthcare workers during the pandemic. The stressors were similar to those which have been reported in other studies, although there were also context-specific effects relating to the environment of the ICU and the Kuwaiti context.

14.
Psychooncology ; 22(7): 1528-33, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-22903737

RESUMO

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.


Assuntos
Emoções , Mesotelioma/diagnóstico , Mesotelioma/psicologia , Neoplasias Pleurais/diagnóstico , Neoplasias Pleurais/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Incerteza
15.
Int J Palliat Nurs ; 19(7): 320, 322-5, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24273808

RESUMO

Malignant pleural effusion (MPE) is a distressing condition for the patient, causing many symptoms such as shortness of breath, dry cough, an uncomfortable feeling of heaviness in the chest, and pleuritic pain. MPE reduces quality of life and functional status. It indicates that the disease is now advanced and life expectancy is generally short, with a median prognosis of 3-12 months depending on the stage of the disease and the underlying malignancy. This paper discusses the palliative treatment options for MPE, which include thoracentesis, medical pleurodesis, and indwelling pleural catheter. It is important that decisions about treatment are made within the multidisciplinary team and alongside the patient and family. Treatment goals are concerned with the relief or elimination of dyspnoea, restoration of near-normal activity and function, and avoidance of inpatient care.


Assuntos
Drenagem/métodos , Dispneia/terapia , Cuidados Paliativos/métodos , Derrame Pleural Maligno/terapia , Pleurodese/métodos , Drenagem/enfermagem , Dispneia/etiologia , Humanos , Derrame Pleural Maligno/complicações , Derrame Pleural Maligno/enfermagem , Pleurodese/enfermagem , Guias de Prática Clínica como Assunto , Talco/administração & dosagem
16.
Res Involv Engagem ; 9(1): 15, 2023 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-36966347

RESUMO

BACKGROUND: Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to asbestos, where PPI is poorly documented. We undertook to explore how PPI could be facilitated in mesothelioma research. METHODS: An online survey with mesothelioma researchers (n = 23) assessed the perceived benefits and challenges of PPI in mesothelioma. Six online workshops and thirteen in-depth interviews with patients and the public explored their views on how PPI could be increased in mesothelioma and their motivations to become PPI representatives in the future. The survey data were analysed using descriptive statistics and the interviews, using Thematic Analysis. RESULTS: In the survey, 26% (n = 6) of the researchers did not include PPI in their research, while 74% (n = 17) did, finding it most beneficial at the stages of applying for funding and dissemination. The main perceived benefits of PPI were clarifying the research question and outcome measures, making research more credible and relevant to patients' needs, and increasing its impact. The main perceived challenges to PPI were the general poor prognosis in mesothelioma, and funding timescales which hindered timely recruitment of PPI representatives. The analysis of the interviews with the patients and public revealed three main themes: "Motivations to become a PPI representative in the future", "Understanding the nature of PPI during the project", and "Perceived challenges to PPI in mesothelioma". Altruism and the need for hope were the main reasons to wish to become involved in PPI in the future. For many participants, the project proved to be a journey of understanding the nature of PPI, a concept that was not easy to grasp from the start. The participants perceived certain barriers to PPI such as high symptom burden in mesothelioma, the abstract concept of PPI, and the use of scientific language. CONCLUSIONS: The present research provides a detailed picture of the benefits and challenges of PPI in mesothelioma. We recommend long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research.


Patient and public involvement (PPI) in research means research that is done 'with' or 'by' the public, not 'to', 'about', or 'for' them. Involving patients, family caregivers or the public (e.g. coordinators of patient organisations) in research activities means that they contribute to how research is designed, conducted, or disseminated. However, some diseases where patients have a short prognosis after diagnosis make it harder for patients or their family members to get involved. In this project we explored the perspectives of patients, public, and researchers on how PPI could be increased and maintained in research on mesothelioma­a rare cancer of the lining of the lung or of the peritoneum caused by exposure to asbestos. We conducted an online survey with mesothelioma researchers, and they indicated a number of PPI benefits but also challenges such as finding people living with mesothelioma well enough to participate. We also conducted six online workshops and thirteen interviews with patients, family members and coordinators of mesothelioma patient organisations­these were not PPI representatives but participants in research. All participants in the project were motivated by the wish to enhance outcomes for other patients. Their understanding of PPI improved during the project and they saw a number of challenges to others becoming involved in PPI, such as its abstract nature and the use of scientific language. We recommend that researchers engage long-term with mesothelioma support groups so that they have opportunities to explain what PPI means and involve people affected by mesothelioma in research.

17.
Qual Res Med Healthc ; 7(3): 11336, 2023 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-38328347

RESUMO

Long-term conditions and accompanied co-morbidities now affect about a quarter of the UK population. Enabling patients and caregivers to communicate their experience of illness in their own words is vital to developing a shared understanding of the condition and its impact on patients' and caregivers' lives and in delivering person-centred care. Studies of patient language show how metaphors provide insight into the physical and emotional world of the patient, but such studies are often limited by their focus on a single illness. The authors of this study undertook a secondary qualitative data analysis of 25 interviews, comparing the metaphors used by patients and parents of patients with five longterm conditions. Analysis shows how similar metaphors can be used in empowering and disempowering ways as patients strive to accept illness in their daily lives and how metaphor use depends on the manifestation, diagnosis, and treatment of individual conditions. The study concludes with implications for how metaphorical expressions can be attended to by healthcare professionals as part of shared care planning.

18.
Support Care Cancer ; 20(12): 3065-70, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22391594

RESUMO

PURPOSE: Caring for a loved one with a malignant fungating wound is very challenging and causes extreme physical and psychological distress. The aim of this study was to explore the experiences of carers who care for a loved one with a fungating breast wound. METHOD: To explore the lived experiences of carers, a methodological framework using Heideggerian hermeneutic phenomenology and semi-structured interviews was used. Seven carers were interviewed from January until November 2009. RESULTS: Having to deal with a situation of a loved one with a visible cancer was hard for all the carers. The visibility of the cancer was one of the most shocking aspects to deal with from the perspective of the patient and the carer. The presence of the visible wound and a cancer at an advanced stage contributed to a change in the relationship and extreme suffering for both the patient and the carer. Despite many problems such as wound odour and copious discharge from the wound, which was difficult to control, carers did their best to help their loved one with the wound. Gradually, the wound became the centre of the patient and carer's life, and a great deal of time was spent trying to control the wound symptoms. All carers managed the wound on their own without help and advice from health care practitioners. For all of them, it was a major burden and they felt isolated. CONCLUSION: This study contributes to an understanding that the care of women and their carers needs strategies that are integrated in palliative wound care that takes a holistic and empathic approach that responds to patients' and carers' psychosocial and emotional needs and a practical need for information to help carers assist in managing the wound-related symptoms.


Assuntos
Neoplasias da Mama/enfermagem , Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos/psicologia , Cônjuges/psicologia , Ferimentos e Lesões/enfermagem , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/complicações , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ferimentos e Lesões/etiologia
19.
J Adv Nurs ; 68(5): 1134-44, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-21895739

RESUMO

AIM: This paper reports a study to develop a grounded theory to explain the experience of recovery following surgery for colorectal cancer. BACKGROUND: Studies have adopted a biomedical framework to measure quality of life and symptom distress following surgery for colorectal cancer. These studies suggest that symptoms of pain, insomnia and fatigue, may persist for many months following treatment. Fewer studies have considered the individual's experiences and perspective of the emotional, social and cultural aspects of recovery. METHODS: A longitudinal study using grounded theory was conducted with 12 individuals, who had received surgery for colorectal cancer. Semi-structured interviews were conducted at four time points over 1 year following surgery, between 2007 and 2009. Grounded theory analysis was undertaken using Strauss and Corbin's framework. FINDINGS: Recovery is described in three phases: disrupting the self; repairing the self; restoring the self. The core category is Restoring a sense of wellness; fostered through awareness and enjoyment of the physical, emotional, spiritual and social aspects of life. A sense of wellness exists as a duality with a sense of illness, where both perspectives may co-exist but one usually takes precedence. A sense of illness pervades when the individual is preoccupied with illness and the illness continues to disrupt their daily life. CONCLUSION: Recovery takes time and energy, particularly when the individual is at home and in relative isolation from health professionals. Opportunities exist for nurses to provide information and support to facilitate the individual in their progress towards achieving a sense of wellness.


Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Neoplasias Colorretais/reabilitação , Qualidade de Vida , Autoimagem , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/fisiopatologia , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/cirurgia , Fadiga/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Pesquisa Metodológica em Enfermagem , Teoria de Enfermagem , Dor/psicologia , Pesquisa Qualitativa , Recuperação de Função Fisiológica
20.
Int J Ment Health Nurs ; 30(4): 975-987, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33811426

RESUMO

This study aimed to investigate the mental health status of nurses from low-risk areas of novel coronavirus (COVID-19) pandemic, its potential impact factors, and the main stressors under the normalized prevention and control in China. A mobile phone app-based survey was conducted among registered nurses in Jiangsu province via a region-stratified sampling method. The questionnaire consisted of items on the demographic characteristics of the nursing staff and their Depression, Anxiety, Stress Scale-21 (DASS-21) along with questions for self-assessment of stressors that are associated with COVID-19. STROBE guideline was used. Among 1803 nurses who were working in the low-risk areas in Jiangsu, 22.0%, 29.8%, and 16.1% of them reported moderate to extreme levels of depression, anxiety, and stress, respectively. Having 11-15 years of working experience and being a fixed-term contract nurse were associated with experiencing worse mental health outcomes while supporting-Wuhan working experience and having mental health preparation course training were independent factors that had beneficial impact on their psychological well-being afterward. In terms of source of pressure, a key finding of this study is that the main stressor among these nurses was the lack of patient's understanding and cooperation (71.2%) which calls for better psychosocial communication between nurses and patients. The present findings would provide information for other regions at low risk of COVID-19 and may aid the provision of support and interventions for the benefit of the psychological well-being of nurses who are exposed to life-threatening occupational risks and are more vulnerable to the pandemic than others.


Assuntos
COVID-19 , Enfermeiras e Enfermeiros , Ansiedade , China/epidemiologia , Estudos Transversais , Depressão , Nível de Saúde , Humanos , Pandemias , SARS-CoV-2 , Inquéritos e Questionários
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