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1.
BMC Palliat Care ; 23(1): 192, 2024 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-39080626

RESUMO

AIM: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. RESEARCH DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. PARTICIPANTS AND RESEARCH CONTEXT: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. CONCLUSION: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process.


Assuntos
Enfermeiras e Enfermeiros , Cuidados Paliativos , Pesquisa Qualitativa , Sede , Humanos , Feminino , Masculino , Suécia , Adulto , Cuidados Paliativos/métodos , Cuidados Paliativos/ética , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/psicologia , Atitude do Pessoal de Saúde , Assistência Terminal/métodos , Assistência Terminal/ética , Assistência Terminal/psicologia , Entrevistas como Assunto/métodos
2.
BMC Nurs ; 23(1): 516, 2024 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-39075509

RESUMO

BACKGROUND: Thirst is the body's natural urge to replenish fluids in response to a deficiency in hydration. Patients at the end of life gradually lose their independence and reach a point where they become unable to express their needs and can no longer drink on their own. In palliative care, the main advice is to provide regular oral care to relieve symptoms such as dry mouth and thirst. However, according to previous studies the prevalence of thirst and dry mouth remains. AIM: The aim of this study was to describe palliative care, nurses' views and experiences of thirst in end-of-life care in specialist palliative care units. METHODS: A qualitative interview study with an inductive approach was conducted. Eighteen nurses working in six different specialist palliative care units in different hospitals in Sweden were interviewed. The interviews were transcribed and analysed with a content analysis approach according to Graneheim and Lundman. RESULTS: When nurses discuss thirst, they perceive thirst as a problem for the patient. This is attributable to various factors, including the patient breathing with an open mouth, a reduced level of awareness, and negligence on the part of the nursing staff. Signs of thirst are dry mouth, and frequently and intense sucking on the oral care stick during oral care. It also emerged that not all nurses perceived that dying patients experienced thirst. They believe that thirst is something that is reduced in the dying patient in the same way as hunger. The most important thing to them is to relieve the dry mouth by providing good oral care. Several issues, such as a lack of guidelines paired with the patient's reduced consciousness and hence his/her lack of communication, make assessing thirst problematic. CONCLUSION: Nurses have different thoughts and experiences about thirst, where some perceive patients as thirsty while others perceive them as having a dry mouth. Nurses expressed that both evidence and guidelines are lacking.

3.
BMC Palliat Care ; 22(1): 184, 2023 Nov 20.
Artigo em Inglês | MEDLINE | ID: mdl-37981710

RESUMO

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses' experience of this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore spouses' experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. METHODS: A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: Three main themes emerged regarding spouses' experiences of patients' thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. CONCLUSIONS: Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient's fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient's thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.


Assuntos
Serviços de Assistência Domiciliar , Cônjuges , Humanos , Sede , Família , Hospitalização
4.
BMC Med Ethics ; 24(1): 61, 2023 08 09.
Artigo em Inglês | MEDLINE | ID: mdl-37559116

RESUMO

BACKGROUND: Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. AIM: The aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients. METHODS: A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. CONCLUSIONS: All physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.


Assuntos
Médicos , Assistência Terminal , Humanos , Idoso , Cuidados Paliativos , Sede , Suécia , Pesquisa Qualitativa
5.
J Adv Nurs ; 79(11): 4292-4303, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37694685

RESUMO

AIMS: To describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units. DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. METHODS: Data were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR). RESULTS: Two main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals. CONCLUSION: Thirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: In palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life. REPORTING METHOD: The study was guided by the SRQR. WHAT DOES THIS ARTICLE CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.

6.
BMC Palliat Care ; 20(1): 180, 2021 Nov 21.
Artigo em Inglês | MEDLINE | ID: mdl-34802436

RESUMO

BACKGROUND: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards. PURPOSE: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures. METHODS: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography. RESULTS: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care. CONCLUSION: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Antropologia Cultural , Humanos , Cuidados Paliativos , Encaminhamento e Consulta
7.
BMC Palliat Care ; 19(1): 161, 2020 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-33059632

RESUMO

BACKGROUND: The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. METHODS: Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. RESULTS: A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. CONCLUSIONS: This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients' and family members' preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.


Assuntos
Comunicação , Família/psicologia , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/psicologia , Relações Profissional-Paciente , Atividades Cotidianas , Adulto , Idoso , Estudos Transversais , Técnica Delphi , Feminino , Insuficiência Cardíaca/mortalidade , Insuficiência Cardíaca/fisiopatologia , Humanos , Masculino , Países Baixos , Inquéritos e Questionários , Suécia , Assistência Terminal
8.
BMC Palliat Care ; 17(1): 85, 2018 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-29890974

RESUMO

BACKGROUND: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. METHODS: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. RESULTS: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. CONCLUSIONS: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.


Assuntos
Insuficiência Cardíaca/psicologia , Cuidados Paliativos/métodos , Relações Profissional-Paciente , Adulto , Comunicação , Feminino , Insuficiência Cardíaca/terapia , Humanos , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Participação do Paciente , Psicometria/instrumentação , Psicometria/métodos , Inquéritos e Questionários
9.
J Cardiovasc Nurs ; 33(2): E1-E6, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-28481827

RESUMO

BACKGROUND: In contrast to recommendations in recent guidelines, prognosis is not optimally discussed with patients with heart failure (HF). Reasons for not doing so can be related to both patient and provider characteristics. PURPOSE: The purpose of the study was to explore which patient- and nurse-related variables influence discussing prognosis with patients at an HF clinic. METHOD: Data from a previous survey on attitudes and clinical practice of HF nurses on discussing prognosis that was conducted in Sweden and the Netherlands were combined with data from a registration on topics that nurses discussed with their patients during a prespecified week at the HF clinic. Multivariable logistic regression analysis was performed to assess which variables are related to discussing prognosis. RESULTS: A total of 275 HF nurses (mean age, 49 years) and data of 1633 patients with HF (mean age, 71 years) were included in the study. Prognosis was discussed with 42% of all patients during the visit at the HF clinic. Patients with whom prognosis was discussed were more often in New York Heart Association classes III to IV (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44-2.26). Nurses discussing prognosis reported more knowledge on the topic (OR, 1.71; 95% CI, 1.36-2.16) and discussed more topics with the patient (OR, 1.27; 95% CI, 1.21-1.32). Dutch HF nurses were more likely to discuss prognosis compared with their Swedish colleagues (OR, 1.83; 95% CI, 1.43-2.33). CONCLUSIONS: Discussing prognosis with patients with HF by nurses at the HF clinic is related to the characteristics of patients and HF nurses. Future interventions to improve communications about prognosis therefore should have a broad approach.


Assuntos
Instituições de Assistência Ambulatorial , Atitude do Pessoal de Saúde , Comunicação , Insuficiência Cardíaca/diagnóstico , Relações Enfermeiro-Paciente , Revelação da Verdade , Idoso , Feminino , Insuficiência Cardíaca/mortalidade , Insuficiência Cardíaca/terapia , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Países Baixos , Prognóstico , Inquéritos e Questionários , Suécia
10.
Appl Nurs Res ; 41: 41-45, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29853212

RESUMO

AIM AND OBJECTIVES: To describe patients' experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. BACKGROUND: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. METHODS: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. FINDINGS: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. CONCLUSION: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.


Assuntos
Doença Crônica/psicologia , Comunicação , Insuficiência Cardíaca/psicologia , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Atenção Primária à Saúde/métodos , Prognóstico , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
11.
Support Care Cancer ; 25(7): 2267-2274, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28220315

RESUMO

PURPOSE: Attachment theory is currently receiving much attention in relation to how adults cope with severe illness. The study aims were using the experiences of patients and family members to explore attachment figures (a central concept within the theory) during palliative home care. METHODS: Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed using qualitative content analysis. RESULTS: Four types of attachment figures were identified: (i) family and friends, (ii) health care practitioners, (iii) pets and (iv) God. Both non-physical and physical contact with the attachment figures facilitated a sense of security. In addition, the patient/family members and their attachment figures were described by some as a "we", and when one part of the "we" felt insecure, this made the other also feel insecure. The patients' unstable and progressing illnesses constituted a threat to the patients' and family members' sense of security. The availability of the attachment figures made them feel secure, and they could then divert their attention from the patients' illnesses to other things in everyday life, e.g. socialising with family and friends. Some family members also had to cope with the loss of their own attachment figure, when the patient, who had previously been a source of security for them, was no longer able to offer protection and comfort due to the progression of the illness. CONCLUSION: Important aspects of attachment figures in the end-of-life context were identified, and their clinical implications will be discussed.


Assuntos
Família/psicologia , Serviços de Assistência Domiciliar/normas , Cuidados Paliativos/psicologia , Adaptação Psicológica , Idoso , Morte , Humanos , Pessoa de Meia-Idade , Apego ao Objeto
12.
Support Care Cancer ; 25(2): 371-380, 2017 02.
Artigo em Inglês | MEDLINE | ID: mdl-27637479

RESUMO

ᅟ: There is little evidence regarding primary healthcare team members' perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. PURPOSE: This study aimed to study whether a PCCT can influence and change primary healthcare team members' perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. METHODS: The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 year's intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. RESULTS: A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. CONCLUSION: It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.


Assuntos
Cuidados Paliativos/métodos , Assistência Terminal/psicologia , Adulto , Feminino , Humanos , Masculino , Inquéritos e Questionários
13.
Appl Nurs Res ; 35: 53-58, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28532727

RESUMO

CONTEXT: Between 7% and 30% of people with treated coeliac disease suffer from residual symptoms, and there is a knowledge gap about their own management of these symptoms. AIM: To explore experiences and management concerning residual symptoms despite a gluten-free diet in people with coeliac disease. METHODS: A qualitative explorative design with semi-structured interviews with 22 adults with coeliac disease in Sweden. Data were analysed using qualitative content analysis. RESULTS: The informants had, at diagnosis, thought that their symptoms would disappear if they followed a gluten-free diet, but the disease was continuing to have a substantial impact on their lives, despite several years of treatment. They experienced cognitive, somatic as well as mental symptoms, including impact on personality (e.g. having a "shorter fuse", being more miserable or tired). However, only a few informants had sought medical care for persistent symptoms. Instead they tried to manage these by themselves, e.g. abstaining from food during periods of more intense symptom, or using distraction. The management of persistent symptoms resembled thorough detective work. To prevent problems related to residual symptoms the informants used withdrawal of social contact as well as acceptance of their situation. CONCLUSION: People with treated coeliac disease may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should provide guidance on management strategies to facilitate the daily life. Furthermore, information to newly diagnosed persons should make them aware of the possibility to experience continued symptoms, despite treatment.


Assuntos
Adaptação Psicológica , Doença Celíaca/psicologia , Doença Celíaca/terapia , Dieta Livre de Glúten/psicologia , Qualidade de Vida/psicologia , Autocuidado/psicologia , Estresse Psicológico/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Suécia
14.
J Clin Nurs ; 25(9-10): 1229-37, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-26814834

RESUMO

AIMS AND OBJECTIVES: To explore the lived experiences of women with coeliac disease after attending a patient education programme, to gain a broader perspective of its influence. BACKGROUND: Adults, particularly women, with coeliac disease report suffering from poor well-being and reduced quality of life in terms of health. Patient education programmes might support and encourage them in the search for possible improvements in lifestyle and in their approach to the disease. DESIGN: A qualitative phenomenological study. METHODS: Personal narrative interviews with 14 women suffering from coeliac disease who had participated in an educational programme. Data analysis in accordance with Giorgi was performed. RESULTS: The essential structure of women's lived experiences following their participation in the patient education programme was found to be an interaction with others with the same disease, which left the women feeling individually strengthened. The interaction enabled the participants to acquire a broader view of their life with coeliac disease. As a result, this realigned their sense of self in relation to their own disease. CONCLUSION: In coping with coeliac disease, it seems that women need interaction with others with the disease to experience togetherness within a group, get the opportunity to compare themselves with others and to exchange knowledge. The interaction appears to result in that women acquire an overview of life with the disease, develop a greater confidence and dare to try new things in life. RELEVANCE TO CLINICAL PRACTICE: When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.


Assuntos
Adaptação Psicológica , Doença Celíaca/psicologia , Qualidade de Vida , Autocuidado , Adulto , Idoso , Doença Celíaca/enfermagem , Feminino , Humanos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Serviços de Saúde da Mulher
15.
Palliat Support Care ; 12(4): 299-308, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23928043

RESUMO

OBJECTIVE: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6-8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss. METHODS: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71. RESULTS: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover. SIGNIFICANCE OF RESULTS: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.


Assuntos
Pesar , Psicoterapia de Grupo , Grupos de Autoajuda , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Suécia
16.
PLoS One ; 18(8): e0290075, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37585424

RESUMO

INTRODUCTION: Thirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physician's experience, which is why this study is needed. PURPOSE: This study aimed to explore palliative care physicians' experiences and views of thirst in patients at the end of life. METHODS: A qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. RESULTS: The analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. CONCLUSIONS: The palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.


Assuntos
Médicos , Assistência Terminal , Xerostomia , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , Xerostomia/terapia , Morte , Assistência Terminal/métodos
17.
J Clin Nurs ; 21(5-6): 766-75, 2012 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-22039932

RESUMO

AIM AND OBJECTIVE: To assess the effects of an active method of patient education on the psychological well-being of women with coeliac disease in remission. BACKGROUND: Despite remission with a gluten-free diet, adults with coeliac disease and especially women experience a subjective poor health. Self-management education seems to be promising tool to help patients suffering from coeliac disease to cope with their disorder. DESIGN: A randomised controlled trial. METHODS: A total of 106 women, ≥ 20 years, with confirmed coeliac disease, who had been on a gluten-free diet for a minimum of five years. The intervention group (n = 54) underwent a 10-session educational programme, 'Coeliac School', based on problem-based learning. The controls (n = 52) received information regarding coeliac disease sent home on a regular basis. The primary outcomes were psychological general well-being measured with a validated questionnaire. RESULTS: Participants in the Coeliac School reported a significant improvement in psychological well-being at 10 weeks, whereas the controls given usual care reported a worsening in psychological well-being. After six months, a significant improvement remained for the index of vitality. CONCLUSIONS: Patient education increased psychological well-being in women with coeliac disease. There is a need to refine the methods of patient education to make the effects of well-being more pronounced over time. RELEVANCE TO CLINICAL PRACTICE: Patient education using problem-based learning promotes self-management in coeliac disease by improving the well-being of patients who have been struggling with the gluten-free diet for years.


Assuntos
Doença Celíaca/dietoterapia , Doença Celíaca/psicologia , Dieta Livre de Glúten , Educação de Pacientes como Assunto/métodos , Estresse Psicológico/etiologia , Saúde da Mulher , Adaptação Psicológica , Adulto , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Doença Celíaca/diagnóstico , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Cooperação do Paciente , Aprendizagem Baseada em Problemas , Psicologia , Valores de Referência , Medição de Risco , Estresse Psicológico/epidemiologia , Estresse Psicológico/fisiopatologia , Resultado do Tratamento , Adulto Jovem
18.
J Clin Nurs ; 21(23-24): 3442-50, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23039244

RESUMO

AIMS AND OBJECTIVES: To describe what life is like as a woman living with coeliac disease. BACKGROUND: The therapy for coeliac disease is a gluten-free diet, and if sufferers keep strictly to this, it is suggested that they will stay well. However, previous studies point out that people who are treated for coeliac disease, particularly women, experience various kinds of inconvenience in relation to having coeliac disease and to being treated with gluten-free diet. DESIGN: A qualitative research design was chosen. METHODS: A phenomenological approach as devised by Giorgi was used. Tape-recorded qualitative interviews with a total of 15 women who were being treated for coeliac disease were conducted in 2008 in Sweden. RESULTS: The results demonstrated that coeliac disease can influence women's lives in different ways. The general structure of being a woman with coeliac disease was described as a striving towards a normalised lifeworld. Three conditions necessary to achieve a normalised life were described, namely being secure, being in control and being seen and included. CONCLUSION: Understanding factors affecting the ability to live with coeliac disease as normally as possible can help caregivers, and others, to support these women in their aims. RELEVANCE TO CLINICAL PRACTICE: Nurses should help women to adopt facilitating thoughts in relation to the disease and, in so doing, help them to select appropriate coping strategies.


Assuntos
Doença Celíaca/fisiopatologia , Adaptação Psicológica , Doença Celíaca/dietoterapia , Doença Celíaca/psicologia , Dieta Livre de Glúten , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida , Suécia
19.
Gastroenterol Nurs ; 35(3): 200-6, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22647800

RESUMO

Despite living with a gluten-free diet, Swedish women with celiac disease report a higher rate of gastrointestinal symptoms than women without the disease. This study was designed to assess the impact of active patient education on gastrointestinal symptoms in women with a gluten-free diet. A total of 106 Swedish women, aged 20 years or older, with celiac disease on a gluten-free diet for a minimum of 5 years took part in a randomized controlled trial. The intervention group (n = 54) underwent a 10-session educational program, "Celiac School," based on problem-based learning. Controls (n = 52) were sent information regarding celiac disease at home. The outcome measure was gastrointestinal symptoms at 10 weeks and 6 months after intervention, assessed with the Gastrointestinal Symptom Rating Scale. After 10 weeks of "Celiac School," the participating women reported significant improvements that remained 6 months later (p = .029). The controls did not improve significantly. A comparison of the development of scores, from baseline to 10 weeks, could not demonstrate a significant difference in the overall index between the 2 groups but showed a significant improvement concerning 1 of its components, namely the index reflecting Abdominal Pain (p = .007). Intervention methods should be refined to reach an even more pronounced effect.


Assuntos
Doença Celíaca/dietoterapia , Dieta Livre de Glúten , Gastroenteropatias/fisiopatologia , Educação de Pacientes como Assunto/organização & administração , Dor Abdominal/etiologia , Dor Abdominal/fisiopatologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise de Variância , Doença Celíaca/complicações , Doença Celíaca/diagnóstico , Constipação Intestinal/etiologia , Constipação Intestinal/fisiopatologia , Diarreia/etiologia , Diarreia/fisiopatologia , Feminino , Refluxo Gastroesofágico/etiologia , Refluxo Gastroesofágico/fisiopatologia , Gastroenteropatias/etiologia , Humanos , Pessoa de Meia-Idade , Aprendizagem Baseada em Problemas , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Valores de Referência , Medição de Risco , Índice de Gravidade de Doença , Suécia , Resultado do Tratamento , Adulto Jovem
20.
Artigo em Inglês | MEDLINE | ID: mdl-35457710

RESUMO

BACKGROUND: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. OBJECTIVES: 1. to describe health care professionals' perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. DESIGN: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. METHODS: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. RESULTS: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. CONCLUSIONS: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.


Assuntos
Insuficiência Cardíaca , Assistência Terminal , Comunicação , Morte , Insuficiência Cardíaca/terapia , Humanos , Relações Médico-Paciente
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