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1.
Artigo em Inglês | MEDLINE | ID: mdl-38719567

RESUMO

BACKGROUND: Postextubation dysphagia (PED) is a common complication to endotracheal intubation in critically ill patients and may lead to pneumonia, prolonged ventilation, longer hospital stays, and increased mortality. Recognizing dysphagia is paramount to preventing adverse events. The aim of this study was to describe PED management by investigating practice in Danish intensive care units (ICUs) focusing on current practice in 2023 (screening, prevention, and treatment), perceived best practice (barriers and facilitators), and when possible, to compare practice in 2017 and 2023. METHODS: Self-reported, cross-sectional survey of dysphagia practice in Danish ICUs administered from April to May 2023. In addition, data were compared with the 2017 Dysphagia in Intensive Care Evaluation study, when possible. RESULTS: Only half of Danish ICUs reported to have a PED protocol, and less than half routinely screen patients for dysphagia after extubation. Most common screening methods were the oral mechanism examination, water test, and Facio-oral tract therapy. Nurses and physicians often relied on an overall physical assessment of the patient. Best treatment methods were uniformly agreed to be patient positioning, modification of food and fluids, use of ergonomic utensils, and compensatory maneuvers. Key barriers to dysphagia management were lack of specialized staff, under-recognition of dysphagia as a health issue, and lack of standardized protocols. CONCLUSION: Awareness of PED is increasing and identification, prevention, and treatment is slowly improving, but systematic implementation of protocols for dysphagia screening and treatment could enhance dysphagia management in Danish ICUs.

2.
J Relig Health ; 62(1): 172-193, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35904692

RESUMO

In Denmark, religious behavior is usually very private. Little is known of religious and spiritual needs of patients and family during critical illness and hospitalization. We aimed to explore contemporary thoughts and prayers related to critical illness and hospitalization expressed in hospital chapel Guest Books. Qualitative content analysis of written texts was performed on Guest Books completed from 2005-2019. We identified the main themes of health and illness, life and death, and science and religion. Visitors welcomed the Guest Books as a place to express religious and spiritual thought, even in a nominally nonreligious society.


Assuntos
Estado Terminal , Espiritualidade , Humanos , Religião , Hospitais , Dinamarca
3.
Aust Crit Care ; 36(4): 528-535, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35610091

RESUMO

BACKGROUND: Intensive care unit (ICU)-acquired dysphagia has severe consequences for patients including increased morbidity and mortality. Standard operating procedures, however, including systematic evaluation of swallowing function and access to specialised assessment and training may be limited. Dysphagia management relies on multiprofessional collaboration, but practice is variable and nonstandardised. OBJECTIVE: The objective of this study was to explore and compare nurses', physicians', and occupational therapists' perceptions of dysphagia management in the ICU. MATERIALS AND METHODS: Six focus group interviews with 33 participants (23 nurses, four physicians, and six occupational therapists) were conducted and analysed using the framework method with a matrix developed from the first interview. Content from the interviews was plotted into the matrix, condensed, and refined. FINDINGS: Clinical dysphagia management depended on recognising signs of dysphagia in patients at risk. Assessment, therapeutic methods, and care differed among professional groups according to knowledge and roles. Interprofessional collaboration and responsibility for dysphagia management across the care continuum was determined by availability of resources, practical skills, knowledge, and formal decision-making competence and judged effective when based on mutual respect and recognition of healthcare professionals' different perspectives. CONCLUSION: Systematic interprofessional collaboration in ICU dysphagia management requires working towards a common goal of preventing aspiration and rehabilitating the patients' ability to swallow safely. This is based on dysphagia assessment, using appropriate therapeutic interventions, sharing knowledge, and improving skills among professional groups.


Assuntos
Transtornos de Deglutição , Médicos , Humanos , Grupos Focais , Transtornos de Deglutição/terapia , Cuidados Críticos , Pessoal de Saúde
4.
J Health Care Chaplain ; 28(4): 540-554, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34284688

RESUMO

Critically ill patients often require spiritual counseling. In Denmark, most hospital chaplains are provided by the State Church. More knowledge is needed regarding health care chaplaincy in this semi-agnostic non-secular welfare society. Our study aimed to explore how hospital chaplains describe their role and elements of chaplaincy in relation to patient, family and healthcare professionals in Danish intensive care units. Using a multicenter qualitative design, we performed semi-structured key-informant interviews with ten hospital chaplains. Content analysis exposed elements of chaplaincy based on spirituality, rituality, neutrality, confidentiality, advocacy, and equality. Most elements are similar in other countries; the main differences are related to educational requirements, institutional integration, research activity, and documentation practice. Chaplains fill an ambiguous role, negotiating values of church and hospital. Modern chaplaincy is propelled toward professionalism, quantification, certification and evaluation. We discuss the contemporary role of hospital chaplains and the consequences of categorizing them as part of the ICU team.


Assuntos
Serviço Religioso no Hospital , Assistência Religiosa , Clero/psicologia , Dinamarca , Hospitais , Humanos , Unidades de Terapia Intensiva , Espiritualidade
5.
BMC Nephrol ; 22(1): 315, 2021 09 22.
Artigo em Inglês | MEDLINE | ID: mdl-34551750

RESUMO

BACKGROUND: Medication nonadherence is common among patients with hemodialysis, leading to poorer patient outcomes. Health care professionals have an important role in assessing risk of nonadherence and intervening to support adherence. The aim of this study was to explore physicians' and nurses' current medication adherence practices in hemodialysis settings. METHOD: A generic qualitative design with inductive content analysis and focus group methodology. Focus groups with health care professionals were conducted in four Nephrology Centers, representing three different regions of Denmark. An interview guide was developed in collaboration with 3 patient representatives. RESULTS: Six focus group interviews involving a total of forty-two health care professionals were conducted. Five main categories were identified; Laboratory tests are the "gold standard" for assessing adherence, suggesting that abnormal results motivated investigation of adherence, Varying practices for supporting adherence, alluding to the impact of individual clinician priority and preference on choice of adherence interventions, Unclear allocation of roles and responsibility, specifically referring to uncertainty in the delegation of roles between physicians and nurses, Navigating time and resource limitations, intimating the resources needed to support medication adherence and Suggestions for future strategies. CONCLUSIONS: We suggest implementing systematic use of validated patient-reported outcome measures for assessing adherence and deprescribing tools to support adherence, as these instruments might identify the patients who are in most need of support and promote patient adherence to their prescribed medications. The findings also point to a need for interdisciplinary clarification of roles and responsibilities regarding medication adherence, with the aim of building a strong collaborative partnership between professions.


Assuntos
Pessoal de Saúde , Adesão à Medicação , Diálise Renal , Técnicas de Laboratório Clínico , Grupos Focais , Humanos , Medidas de Resultados Relatados pelo Paciente , Relações Profissional-Paciente
6.
Nurse Educ Pract ; 54: 103142, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34265667

RESUMO

OBJECTIVES: Management of critically ill patients is changing due a rise in population age, comorbidity and complexity. To accommodate these changes, the demand is increasing for advanced practice nurses. More knowledge is needed regarding the role of advanced practice critical care nurses in European countries. The aim of the study was to review the literature describing skills and competencies required for advanced practice critical care nursing in Europe and to investigate related policy. REVIEW METHOD: We performed a scoping review including papers published in 1992-2019 targeting policy and the intersection of advanced practice nursing (level of practice), critical care nursing (specialty area) and Europe (geographical origin). DESIGN AND DATA SOURCES: Main sources of evidence were PubMed, EMBASE, PsycINFO, CINAHL, Cochrane Library, SweMed+, Scopus, ERIC and Social Sciences Citation Index. We also searched grey literature, webpages, reference lists and performed hand-search. RESULTS: The search identified 11,478 papers/references of which 42 were included. Four levels of practice were identified with unclear boundaries: professional nurse, specialized nurse, advanced practice nurse and advanced critical care practitioner (nurse or other). Most skills and competencies described in the literature were generic to advanced practice and only few were area specific to critical care. Advanced practice critical care nurses were often unable to fulfil their role because education, supportive policy and legislation were lacking. CONCLUSIONS: This scoping review informs the policy makers and the INACTIC study of existing advanced practice in critical care nursing in Europe. The advanced role in critical care nursing is characterized by inconsistency regarding policy, education, titles, roles, scope of practice, skills and competencies. Levels of practice and areas of specialization need to be clarified. Most skills and competencies identified were generic for advanced practice nursing and many were generic for any profession. Task-shifting from physician to nurse needs to be more clearly defined and patient outcomes described. Given the scarcity of papers in our target area, we believe it might be too early to conduct a systematic review at this time.


Assuntos
Prática Avançada de Enfermagem , Enfermagem de Cuidados Críticos , Cuidados Críticos , Europa (Continente) , Humanos , Políticas
7.
Intensive Crit Care Nurs ; 56: 102765, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31685257

RESUMO

BACKGROUND: Priorities for critical care nursing research have evolved with societal trends and values. In the 1980s priorities were the nursing workforce, in 1990s technical nursing, in 2000s evidence-based nursing and in 2010s symptom management and family-centred care. OBJECTIVES: To identify current trends and future recommendations for critical care nursing research in the Nordic countries. METHODS: We triangulated the results of a literature review and a survey. A review of two selected critical care nursing journals (2016-2017) was conducted using content analysis to identify contemporary published research. A self-administered computerised cross-sectional survey of Nordic critical care nursing researchers (2017) reported current and future areas of research. RESULTS: A review of 156 papers identified research related to the patient (13%), family (12%), nurse (31%), and therapies (44%). Current trends in the survey (n = 76, response rate 65%) included patient and family involvement, nurse performance and education, and evidence-based protocols. The datasets showed similar trends, but aftercare was only present in the survey. Future trends included symptom management, transitions, rehabilitation, and new nursing roles. CONCLUSION: Critical care nursing research is trending toward increased collaboration with patient and family, delineating a shift toward user values. Recommendations include long-term outcomes and impact of nursing.


Assuntos
Enfermagem de Cuidados Críticos/normas , Enfermagem de Cuidados Críticos/tendências , Guias como Assunto , Pesquisa em Enfermagem/normas , Pesquisa em Enfermagem/tendências , Inquéritos e Questionários/normas , Revisões Sistemáticas como Assunto , Estudos Transversais , Humanos , Países Escandinavos e Nórdicos
8.
BMJ Open ; 9(9): e031504, 2019 09 06.
Artigo em Inglês | MEDLINE | ID: mdl-31494624

RESUMO

INTRODUCTION: The management of critically ill patients is challenged by increasing population age and prevalence of comorbid diseases. High-quality intensive care nursing practice is imperative to accommodate these issues. The roles of the nurse practitioner (NP) and the acute care NP have existed for decades in the USA, Canada and Australia but are still evolving in Europe. Some European countries have introduced the advanced practice nurse (APN), but the current standard of the advanced level of nursing is variable and consensus regarding the framework, role and definition is lacking. Literature and evidence are sparse as well. Identification of skills and competencies required for the APN is warranted. Mapping skills and competencies will enable future educational harmonisation and facilitate mobility of the advanced-level intensive care nursing workforce across Europe. The aim of our scoping review is to identify literature describing skills, competencies and policies characterising advanced nursing practice in intensive care across Europe. METHODS AND ANALYSIS: We will apply a five-stage scoping review methodology with a comprehensive systematic literature search as outlined by Arksey and O'Malley. In collaboration with a research librarian, we will search nine interdisciplinary databases and grey literature for publications originating in European countries in 1992-2018. Using a two-stage screening process with Covidence to remove duplicates, we will first scan the title and abstract and then perform full-text review to determine the eligibility of the papers. Qualitative content analysis will be used to chart the data. ETHICS AND DISSEMINATION: Our study is a part of the European Union-funded INACTIC project (International Nursing Advanced Competency-based Training for Intensive Care) with the overall aim of developing a common European curriculum for advanced practice critical care nursing. Results from this scoping review mapping the evidence of APNs in Europe will be presented at national and international conferences and published in a peer-reviewed journal.


Assuntos
Prática Avançada de Enfermagem/normas , Competência Clínica , Enfermagem de Cuidados Críticos/normas , Profissionais de Enfermagem/educação , Políticas , Currículo , Europa (Continente) , Humanos , Projetos de Pesquisa , Literatura de Revisão como Assunto
9.
Nurs Crit Care ; 24(4): 201-208, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31237406

RESUMO

BACKGROUND: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support. AIMS AND OBJECTIVES: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies). DESIGN: This was a cross-sectional survey of conference delegates. METHODS: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments. RESULTS: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%). CONCLUSIONS: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs. RELEVANCE TO CLINICAL PRACTICE: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered. WHAT IS KNOWN ABOUT THIS TOPIC Many families experience the death of a loved one in intensive care unit (ICU). Bereavement services are offered at some ICUs. WHAT THIS PAPER ADDS Bereavement services are not systematically offered in European ICUs. Culture-specific guidelines are needed for bereavement follow up in ICUs. Common elements of bereavement services have been identified, for example, viewing the deceased in the unit, providing follow-up information, sending a letter of sympathy, and calling the family to arrange a meeting. Consequences of bereavement in ICU have been discussed, for example, prolonged or complicated grief and lack of closure in the bereaved.


Assuntos
Luto , Enfermagem de Cuidados Críticos , Família/psicologia , Unidades de Terapia Intensiva , Relações Profissional-Família , Apoio Social , Estudos Transversais , Europa (Continente) , Humanos , Equipe de Assistência ao Paciente/organização & administração , Inquéritos e Questionários
10.
Respir Med ; 146: 129-136, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30665511

RESUMO

INTRODUCTION: Fibrotic interstitial lung disease (f-ILD) comprises a group of diseases with lung scarring and reduced life expectancy. The short time from diagnosis to death affects the patients' bereaved spouses, who risk developing prolonged grief. In Denmark palliative care is most often offered to cancer patients. AIM: We aimed to investigate the experience of spouses of f-ILD patients during the final stages of illness and up to the first year after the patient's death to investigate if palliative care could ease the transition and prevent PGD. METHODS: Our study had a qualitative design triangulating in-depth interviews, field notes, participant diaries and the prolonged grief questionnaire PG-13. We included 20 spouses and applied thematic analysis. Initial coding was performed deductively according to the chronological stages of before, during and after the death of the patient. We subsequently coded inductively within the stages. RESULTS: During the final days the spouses experienced emotional ambivalence shifting between hope, acceptance and despair. Factors affecting the spouses during the final hours were the timing, location, and process of death. After the patient's death the spouses experienced feelings of grief and optimism as they moved toward a new life on their own. CONCLUSIONS: Some of the factors affecting the spouses and potentially causing prolonged grief might be alleviated by offering palliative/supportive care and advance care planning to f-ILD patients and their family.


Assuntos
Luto , Doenças Pulmonares Intersticiais/mortalidade , Cônjuges/psicologia , Planejamento Antecipado de Cuidados , Idoso , Dinamarca , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Pesquisa Qualitativa , Inquéritos e Questionários
11.
Diabetes Metab Syndr Obes ; 12: 19-33, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30588053

RESUMO

Diabetes distress (DD) disproportionately affects vulnerable people with type 2 diabetes mellitus and interventions targeting this population are therefore relevant. A systematic review and meta-analysis was performed to assess the evidence for an effect of psychosocial interventions for reducing DD, and, secondly HbA1c, depression, and health-related quality of life in vulnerable people with type 2 diabetes mellitus. Vulnerability encompasses poor glycemic control (HbA1c >7.5%) and at least one additional risk factor for poor diabetes outcomes such as low educational level, comorbidity, and risky lifestyle behavior. The interventions should be theoretically founded and include cognition- or emotion-focused elements. We systematically searched four databases for articles published between January 1995 and March 2018. Eighteen studies testing a variety of psychosocial interventions in 4,066 patients were included. We adhered to the Cochrane methodology and PRISMA guidelines. Review Manager 5.3 was used for data extraction and risk of bias assessment, and Grades of Recommendation, Assessment, Development and Evaluation for assessing the quality of the evidence. Data were pooled using the fixed or random effects method as appropriate. We investigated effects of individual vs group, intensive vs brief interventions, and interventions with and without motivational interviewing in subgroup analyses. To assess the robustness of effect estimates, sensitivity analyses excluding studies with high risk of bias and attrition >20% were conducted. We found low to moderate quality evidence for a significant small effect of psychosocial interventions on DD, and very low to moderate quality evidence for no effect on HbA1c, both outcomes assessed at 3, 6, 12, and 24 months follow-up. The effect on depression was small, while there was no effect on health-related quality of life. Exploratory subgroup analyses suggested that interventions using motivational interviewing and individual interventions were associated with incremental effects on DD. Likewise, intensive interventions were associated with significant reductions in both DD and HbA1c.

12.
Intensive Crit Care Nurs ; 45: 52-57, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29150180

RESUMO

BACKGROUND: Mortality in Danish intensive care units (ICUs) continues at 27%, resulting in a large number of bereaved family members being cared for in the ICU. OBJECTIVES: To investigate the provision of bereavement care and follow-up services for bereaved families in Danish ICUs. METHODOLOGY: Self-administered computerized cross-sectional nation-wide survey of Danish ICUs. RESULTS: Nurses at 46 of 48 (96%) ICUs in Denmark responded. Bereavement care at the time of patient death included viewing the patient in ICU (100%), and in the hospital mortuary (59%). Information about hospital-based follow-up for the family was provided in 72% of units, whereas only one unit provided information on community-based bereavement follow-up. Bereavement follow-up services after hospitalization were offered to families in 59% of ICUs and included an ICU visit, meeting with the staff present at the time of death, a letter of condolence, a phone call to the family, referral to a priest or clergyman, or referral to other counseling. Although many interventions were common, there were variations within the elements offered. Nurses and physicians were the most consistent health care staff involved in bereavement services. CONCLUSION: Most ICUs in Denmark offered bereavement follow-up services, but these varied in their approach, were not evidence-based, and lacked formal evaluation. More systematic quality improvement of bereavement practices is required.


Assuntos
Luto , Unidades de Terapia Intensiva/normas , Enfermeiras e Enfermeiros/psicologia , Assistência Centrada no Paciente/métodos , Percepção , Assistência ao Convalescente/métodos , Assistência ao Convalescente/normas , Estudos Transversais , Dinamarca , Família/psicologia , Humanos , Unidades de Terapia Intensiva/organização & administração , Relações Enfermeiro-Paciente , Assistência Centrada no Paciente/normas , Pesquisa Qualitativa , Inquéritos e Questionários
13.
BMC Cancer ; 17(1): 793, 2017 Nov 25.
Artigo em Inglês | MEDLINE | ID: mdl-29178899

RESUMO

BACKGROUND: Despite smoking and risky alcohol drinking being modifiable risk factors for cancer as well as postoperative complications, perioperative cessation counselling is often ignored. Little is known about how cancer patients experience smoking and alcohol interventions in relation to surgery. Therefore the aim of this study was to explore how bladder cancer patients experience a perioperative smoking and alcohol cessation intervention in relation to radical cystectomy. METHODS: A qualitative study was conducted in two urology out-patient clinics. We conducted semi-structured in-depth interviews with 11 purposively sampled persons who had received the smoking and alcohol cessation intervention. The analysis followed the steps contained in the thematic network analysis. RESULTS: Two global themes emerged: "smoking and alcohol cessation was experienced as an integral part of bladder cancer surgery" and "returning to everyday life was a barrier for continued smoking cessation/alcohol reduction". Participants described that during hospitalization their focus shifted to the operation and they did not experience craving to smoke or drink alcohol. Concurrent with improved well-being or experiencing stressful situations, the risk of relapse increased when returning to everyday life. CONCLUSIONS: The smoking and alcohol cessation intervention was well received by the participants. Cancer surgery served as a kind of refuge and was a useful cue for motivating patients to quit smoking and to reconsider the consequences of risky drinking. These results adds to the sparse evidence of what supports smoking and alcohol cessation in relation to bladder cancer patients undergoing major surgery and point to the need to educate healthcare professionals in offering smoking and alcohol cessation interventions in hospitals. The study also provides knowledge about the intervention in the STOP-OP study and will help guide the design of future smoking and alcohol cessation studies aimed at cancer patients undergoing surgery.


Assuntos
Consumo de Bebidas Alcoólicas , Cistectomia , Abandono do Hábito de Fumar , Neoplasias da Bexiga Urinária/epidemiologia , Adulto , Idoso , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Vigilância em Saúde Pública , Pesquisa Qualitativa , Fatores de Risco , Fumar , Neoplasias da Bexiga Urinária/etiologia , Neoplasias da Bexiga Urinária/cirurgia
14.
J Clin Nurs ; 26(23-24): 5072-5081, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28793391

RESUMO

AIMS AND OBJECTIVES: To investigate experienced symptoms of parastomal bulging in relation to an ileostomy or colostomy. BACKGROUND: Parastomal bulging is a common complication of stoma formation that can affect patients' physical, psychological and social function. Symptom burdens reported by health professionals vary from asymptomatic to high symptom load; however, patients' experiences of symptoms are lacking. DESIGN AND METHOD: A qualitative design with focus group interviews was chosen for data collection. Twenty patients participated in five semi-structured interviews. Analysis was performed using a phenomenological-hermeneutic approach. FINDINGS: The bulge caused different unfamiliar bodily sensations that interacted with patients' everyday lives. Some but not all of these sensations were modifiable. As the bulge and the ostomy changed size and shape, patients had to adjust and readjust stoma care continuously. The physical change called for patients' awareness and posed a threat to patients' control of the ostomy and challenged stoma self-care. The bulge caused a bodily asymmetry that deformed the patients' bodies in a way that exceeded the perceived alteration already caused by the stoma. To cover the physical disfigurement, new clothing solutions, garment wear and creativity were essential in everyday life. Patients gradually adapted to the bulge over time. Easy access to professional help was crucial in order to find the best appliance and garment solution in relation to the bulge. CONCLUSIONS: Various symptoms related to the parastomal bulge affected patients' everyday lives in different ways and underpinned that an individualised approach is important when addressing patients' problems and complaints. Research into nonsurgical treatments and patient perspectives is limited and highly warranted to improve clinical outcome. RELEVANCE TO CLINICAL PRACTICE: The ever-changing bulge posed a threat to patients' control of the ostomy and required specific care from the stoma therapist. Needs-based access to counselling, advice and supplementary materials is important.


Assuntos
Colostomia/psicologia , Ileostomia/psicologia , Estomas Cirúrgicos/efeitos adversos , Idoso , Idoso de 80 Anos ou mais , Colostomia/efeitos adversos , Feminino , Grupos Focais , Humanos , Ileostomia/efeitos adversos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida , Autocuidado/psicologia
15.
Eur Respir J ; 47(5): 1472-80, 2016 05.
Artigo em Inglês | MEDLINE | ID: mdl-26846831

RESUMO

The disease course in idiopathic pulmonary fibrosis (IPF) is variable, but patients experience a progressive decline in lung function and increased symptom burden leading to death. Little is known about the patients' experience and their needs during the disease course or about the burden on family caregivers. Both patients and family caregivers face an altered life as the disease progresses. The aim of our study was to increase knowledge of life with IPF for patients and family caregivers.This study had a qualitative descriptive design using in-depth dyadic interviews with IPF patients (n=25) and family caregivers (n=24). We used the five-step analysis from the framework method and analysed the data on three levels: the patient, the family caregivers and couple level.The following six themes emerged as the main results: information and disclosure, reactional dyssynchrony, perpetual vigilance, emotional ambivalence, gradual and tacit role shift, and adapted coping strategies.Our findings suggest that IPF patients need information at the time of diagnosis, but some issues should be paced as the disease progresses. A palliation plan was demanded by patients and their caregivers. Further efforts are required to provide palliative care to IPF patients starting at the time of diagnosis.


Assuntos
Cuidadores , Fibrose Pulmonar Idiopática/fisiopatologia , Fibrose Pulmonar Idiopática/psicologia , Educação de Pacientes como Assunto/métodos , Pesquisa Qualitativa , Acesso à Informação , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Progressão da Doença , Emoções , Ética Médica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos
16.
Patient Educ Couns ; 98(7): 890-4, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25846192

RESUMO

OBJECTIVE: To map the usage of out-of-office hours acute telephone counselling (ATC) provided by diabetes specialist nurses (n=18) for diabetes patients to explore potentials for improvement. METHODS: A mixed methods study involved mapping of ATC-usage during 6 months and a retrospective audit of frequent users. RESULTS: Altogether, 3197 calls were registered that were related to 592 individual patients, corresponding to 10% of the population. Proportionally more users suffered from type 1 diabetes (p<0.001). ATC-users' mean HbA1c was 8.8% (73 mmol/mol) compared to 8.1% (65 mmol/mol) for all patients attending the clinic (p<0.001). Hyperglycaemia was the most frequent reason for calling. The use of ATC likely prevented 15 admissions. More than half of the calls came from general nurses based in the community (n=619) and general nurses and nursing assistants based in care homes (n=1018). The majority (75%) of patients called less than five times. However, 8% called 16 times or more accounting for 52% of all calls. A retrospective audit identified them as physically and/or psychologically fragile patients. CONCLUSION: Hyperglycaemia was the most frequent reason for calling, and insulin dose adjustment the most frequent advice given. PRACTICE IMPLICATIONS: Frequent users identified need additional support.


Assuntos
Plantão Médico/organização & administração , Aconselhamento/métodos , Enfermeiras e Enfermeiros , Consulta Remota/estatística & dados numéricos , Telefone/estatística & dados numéricos , Adulto , Instituições de Assistência Ambulatorial , Diabetes Mellitus/tratamento farmacológico , Feminino , Humanos , Hiperglicemia/tratamento farmacológico , Insulina/uso terapêutico , Masculino , Pessoa de Meia-Idade , Avaliação de Processos e Resultados em Cuidados de Saúde , Consulta Remota/métodos , Estudos Retrospectivos , Autocuidado
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