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1.
BMC Geriatr ; 22(1): 800, 2022 10 14.
Artigo em Inglês | MEDLINE | ID: mdl-36241981

RESUMO

BACKGROUND: Physical training is increasingly used in rehabilitation for older people with dementia and several studies have documented positive results. Currently, welfare nations promote motion-based technology (MBT) at home to replace group training in various rehabilitation interventions. Research on the use of MBT by people with dementia is sparse. Therefore, this study explores how people with mild dementia and their relatives experience home-based MBT training in an intervention facilitated by a Danish municipality. METHODS: The study is part of a feasibility study and builds on participant observation and interviews with people with dementia (n = 4), their relatives (n = 4), and health care workers (n = 3) engaged in the project. RESULTS: Participants compared MBT training to group training and found that MBT was not a satisfactory replacement for group training. Some participants used and enjoyed MBT daily while others were challenged by the technology, the placement of the device, or motivation to independently complete the training program. CONCLUSION: MBT is possibly best considered as a supplement to group training, suitable for individuals able to use it in daily life.


Assuntos
Demência , Idoso , Demência/terapia , Estudos de Viabilidade , Pessoal de Saúde , Humanos , Pesquisa Qualitativa , Tecnologia
2.
Anthropol Med ; 27(3): 315-329, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31983239

RESUMO

Presently, there is a general understanding that health, illness and rehabilitation should be studied in a relational context, and that people's experiences, perceptions and practices in relation to health and recovery are formed relationally and contextually. The aim of this paper is to consider and discuss how men experienced their marital relationships, after being diagnosed with cancer. The empirical material is based on the authors' ethnographic fieldworks, including participant observation and interviews with men who have or have had cancer. The analysis is informed by the anthropologist Michael Jackson's notion of intersubjectivity and his argument that intersubjectivity continually and dialectically moves between the complementary poles of compassion and conflict. We demonstrate how the men appreciated their partners' support and care, but also that the cancer disease and the treatment could cause marital friction and tension. Due to their new life circumstances and subject positions, the men continuously shifted between the poles of compassion and conflict, struggling for balance and control, including negotiations of how to perform their masculinity.


Assuntos
Casamento/psicologia , Homens/psicologia , Neoplasias , Cônjuges/psicologia , Adulto , Idoso , Antropologia Médica , Humanos , Masculino , Masculinidade , Pessoa de Meia-Idade , Neoplasias/etnologia , Neoplasias/psicologia
3.
J Clin Nurs ; 28(11-12): 2329-2339, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30791156

RESUMO

AIMS AND OBJECTIVES: To explore nurse-patient interactions in relation to the mobilisation of nonsedated and awake, mechanically ventilated patients in the intensive care unit. BACKGROUND: Lighter sedation has enabled the early mobilisation of mechanically ventilated patients, but little is known about the nurses' role and interaction with critically ill patients in relation to mobilisation. DESIGN AND METHODS: The study had a qualitative design using an ethnographic approach within the methodology of interpretive description. Data were generated in two intensive care units in Denmark, where a strategy of no sedation was applied. Participant observation was conducted during 58 nurse-patient interactions in relation to mobilisation between nurses (n = 44) and mechanically ventilated patients (n = 25). We conducted interviews with nurses (n = 16) and patients (n = 13) who had been mechanically ventilated for at least 3 days. The data were analysed using inductive, thematic analysis. The report of the study adhered to the COREQ checklist. FINDING: We identified three themes: "Diverging perspectives on mobilisation" showed that nurses had a long-term and treatment-oriented perspective on mobilisation, while patients had a short-term perspective and regarded mobilisation as overwhelming in their present situation. "Negotiation about mobilisation" demonstrated how patients actively negotiated the terms of mobilisation with the nurse. "Inducing hope through mobilisation" captured how nurses encouraged mobilisation by integrating aspects of the patient's daily life as a way to instil hope for the future. CONCLUSIONS: Exploring the nurse-patient interactions illustrated that mobilisation is more than physical activity. Mobilisation is accomplished through nurse-patient collaborations as a negotiated, complex and meaningful achievement, which is driven by the logic of care, leading to hope for the future. RELEVANCE TO CLINICAL PRACTICE: The study demonstrated the important role of nurses in achieving mobilisation in collaboration and through negotiation with mechanically ventilated patients in the intensive care unit.


Assuntos
Enfermagem de Cuidados Críticos/métodos , Deambulação Precoce/enfermagem , Relações Enfermeiro-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estado Terminal/enfermagem , Dinamarca , Deambulação Precoce/psicologia , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , Negociação , Papel do Profissional de Enfermagem , Respiração Artificial/enfermagem
4.
J Clin Nurs ; 28(1-2): 245-256, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29989243

RESUMO

AIMS AND OBJECTIVES: To explore endometrial cancer patients' perceptions of the disease and the influence of favourable prognoses on their experiences. BACKGROUND: Endometrial cancer is associated with favourable prognoses, which may imply that patients experience distress to a lesser extent than other cancer patients with less positive treatment outcomes. However, most people with cancer report reduced quality of life and, despite endometrial cancer being prevalent worldwide, experiences of the disease have been little explored. DESIGN: Ethnographic fieldwork with participant observations and interviews. METHODS: Observations during clinical consultations at two Danish hospitals and interviews with women with endometrial cancer (n = 18) over a period of 6 months. The article adheres to the COREQ guidelines for reporting qualitative research. RESULTS: We identify how patients consider cancer in general very likely to be fatal, while clinicians in contrast characterise endometrial cancer specifically as "good" because of favourable prognoses. We employ the concept of bricolage to illustrate how bits and pieces of biomedical knowledge and statistical evidence become intertwined with patients' past experiences and subjective ways of knowing, suggesting that patients' perceptions of endometrial cancer as a disease are somewhat dynamic. CONCLUSIONS: Public stories and everyday life experiences of cancer provide a central framework for illness perceptions. As a result, patients retain the idea of a close connection between cancer and death, while also adopting the notion of endometrial cancer as "good". This influenced how women responded to treatment and care. Framing endometrial cancer as "good" is not always helpful, as the impact of a cancer diagnosis per se is rarely favourable. RELEVANCE TO CLINICAL PRACTICE: In providing women with endometrial cancer with optimal support through diagnosis and treatment, clinicians should attend to the complexity of patients' illness understandings and be aware that assuring patients of a good prognosis not always has the expected impact.


Assuntos
Neoplasias do Endométrio/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Dinamarca , Feminino , Humanos , Pessoa de Meia-Idade , Prognóstico , Pesquisa Qualitativa , Resultado do Tratamento
5.
Int J Nurs Stud ; 75: 1-9, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28704639

RESUMO

BACKGROUND: There is a current trend towards lighter or no sedation of mechanically ventilated patients in the intensive care unit. The advantages of less sedation have been demonstrated as shorter duration of mechanical ventilation and reduced length of stay in the intensive care unit and hospital. Non-sedated patients are more awake during mechanical ventilation, but little is known about how this affects the intensive care patient. AIM: To explore patients' experiences of being awake during critical illness and mechanical ventilation in the intensive care unit. DESIGN & METHODS: The study was based on Interpretive Description, an applied inductive, qualitative approach with an ethnographic exploration of the patient experience. A longitudinal perspective was obtained through 13 months of fieldwork followed by two patient interviews after intensive care and after hospital discharge. Data were analyzed using thematic analysis. SETTING & PARTICIPANTS: The fieldwork was conducted in two intensive care units at a university hospital in Denmark, where the no sedation strategy for mechanically ventilated patients was implemented. Twenty-eight patients were observed in the intensive care unit. Twenty patients, who had been awake for most of the time on mechanical ventilation, were interviewed during the first week after discharge from intensive care. Thirteen of these patients were interviewed again two to four months after discharge. FINDINGS: Three themes were identified: "A sense of agency", "The familiar in the unfamiliar situation" and "Awareness of surrounding activities". Patients had the ability to interact from the first days of critical illness and a sense of agency was expressed through initiating, directing and participating in communication and other activities. Patients appreciated competent and compassionate nurses who were attentive and involved them as individual persons. Initiatives to enhance familiar aspects such as relatives, personal items and care, continuity and closeness of nurses contributed to the patients' experience of feeling safe and secure in the unfamiliar setting. Patients were aware of the surrounding activities and felt powerless when ignored by the staff and were affected when witnessing fellow patients' suffering. CONCLUSION: Being awake during mechanical ventilation entailed new opportunities and challenges for critically ill patients. Patients found themselves at the interface between agency and powerlessness as they were able to interact, yet were bound by contextual factors such as bodily weakness, technology, spatial position and relational aspects. This knowledge is important to develop patient-centered nursing practice in the context of lighter sedation.


Assuntos
Unidades de Terapia Intensiva , Respiração Artificial , Vigília , Adulto , Idoso , Idoso de 80 Anos ou mais , Antropologia Cultural , Feminino , Humanos , Hipnóticos e Sedativos/administração & dosagem , Tempo de Internação , Masculino , Pessoa de Meia-Idade
6.
J Psychosoc Oncol ; 34(6): 460-476, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27612167

RESUMO

Previous research on psychosocial support for cancer-related concerns has primarily focused on either patients or their relatives, although limited research is available on how patients and their relatives can be supported together. The aim of this article is to explore the use of storytelling as a part of a residential cancer rehabilitation intervention for patients together with their relatives, with a specific focus on their management of cancer-related concerns. Ten pairs participated in the intervention and data were generated through ethnographic fieldwork, including participant observations, informal conversations and follow-up interviews conducted one month after completing the intervention. Analysis was performed drawing on narrative theory combined with social practice theory. The results demonstrate that the use of storytelling and metaphors intertwined with other course activities, such as dancing and arts & crafts, provided the patients and their relatives with strategies to manage cancer-related concerns, which they were later able to apply in their everyday lives. The study results may be useful to other professionals in clinical practice for rehabilitation purposes for addressing issues of fear and worry.


Assuntos
Família/psicologia , Neoplasias dos Genitais Femininos/psicologia , Neoplasias dos Genitais Femininos/reabilitação , Neoplasias Pulmonares/psicologia , Neoplasias Pulmonares/reabilitação , Narração , Apoio Social , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Resultado do Tratamento
7.
Patient ; 9(3): 223-30, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26518199

RESUMO

BACKGROUND: Systematic assessments of cancer patients' rehabilitation needs are recommended, and questionnaires are considered to be useful tools when making such assessments. OBJECTIVE: The aim of this study was to explore patients' experience of completing a questionnaire about their problems and distress at home prior to a needs assessment in general practice. METHODS: Sixteen patients were recruited by their general practitioners (GPs). Semi-structured interviews were conducted in the home of the participants and at the general practice, with one interview taking place over the phone. Data were analyzed using systematic text condensation. RESULTS: Twelve women and four men aged between 49 and 83 years of age, and diagnosed with various cancers between 1 month and 4 years ago, participated in the study. The results showed how the completion of a questionnaire at home provided patients with an opportunity to reflect on different problems, and the importance of these problems to the patient's everyday life, as well as an opportunity to articulate which problems they wanted to discuss with their GPs. CONCLUSIONS: The results demonstrate that completing a questionnaire seems to stimulate patients' ability to reflect on their situation, clarify the importance of different problems to their everyday lives, and articulate these considerations to their GPs. Furthermore, we have shown that a questionnaire has the ability to interact with the patient and instigate a process of awareness. It is important to acknowledge this process of interaction between patient and questionnaire as an important part of understanding how and why questionnaires may support the patient when completing a questionnaire prior to a clinical encounter.


Assuntos
Clínicos Gerais , Avaliação das Necessidades , Neoplasias/psicologia , Inquéritos e Questionários , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Pesquisa Qualitativa
8.
Int J Nurs Stud ; 54: 54-64, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25882316

RESUMO

BACKGROUND: This study focuses on the everyday life of immigrant women with chronic pain on long-term sick leave in Norway. Research has shown that rehabilitation of immigrant women with chronic pain might be challenging both due to their lack of linguistic competence, due to lack of sufficient confidence/trust in their employers and in health personnel and lack of knowledge/skills among health care personnel in meeting immigrants' special needs. OBJECTIVE: The objective of the study was to explore how immigrant women on long-term sick leave in Norway due to chronic pain experience their illness and their relationships at work and in the family. DESIGN: This article has a qualitative design, using participant observation and in-depth interviews. METHODS: Participant observations were carried out in an outpatient clinic and qualitative interviews were conducted after the rehabilitation period. A hermeneutic approach was used to understand the meaning of the narrated text. All the authors participated in the discussion of the findings, and consensus was obtained for each identified theme. SETTINGS: The research was conducted at an outpatient clinic at a rehabilitation hospital in the southern part of Norway. The clinic offers wide-ranging, specialized, multidisciplinary patient evaluations that last between 24 and 48h, followed by advice and/or treatment either individually or in a group, i.e. in a rehabilitation course. PARTICIPANTS: Participants (immigrant women) who had been referred to the outpatient clinic and to a rehabilitation course were recruited. Fourteen African and Asian women were observed in two rehabilitation courses, and eleven of them agreed to be interviewed once or twice (3). RESULTS: The interpretation revealed the following two main themes: 'Shut inside the home' and 'Rejected at the workplace'. Based on the women's experiences, a new understanding emerged of how being excluded or not feeling sufficiently needed, wanted or valued by colleagues, employers or even by family members rendered their daily lives humiliating and lonely. CONCLUSIONS: The immigrant women on long-term sick leave live in triple jeopardy: being ill and being lonesome both at home and at the workplace. This can be described as a vicious circle where the humiliating domestic and workplace-rejection might reinforce both the women's experience of shame and avoidance of telling anybody about their illness/symptoms, which then results in more days on sick leave during which they are again isolated and lonesome. There is a need for more research on multidisciplinary rehabilitation approaches designed to cater for immigrants' special needs.


Assuntos
Emigrantes e Imigrantes/psicologia , Solidão/psicologia , Licença Médica , Adulto , Dor Crônica/psicologia , Barreiras de Comunicação , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Noruega , Relações Profissional-Paciente
9.
Patient ; 9(3): 193-200, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26597448

RESUMO

Research within health science is often based on developing, implementing and evaluating interventions in a randomized controlled trial (RCT) design, with patients or other health care users as the target group. The results of RCTs can have limited generalizability. Since a trial often takes place in a controlled setting, it may be difficult to implement the results in other settings. Successful implementation in practice requires knowledge of the context and the social mechanisms and processes through which an intervention works. It is therefore important to secure such knowledge of high quality. The aim of this paper was to present and discuss how intervention research in RCT designs can be developed and strengthened by using a multimethod research approach. First, we focus on four considerations relating to the use of RCTs, namely objectivity and linearity, contextual dimensions, generalizability, and complex interventions. Second, a multimethod research approach including the terms 'research style' and 'forms of integration' is presented to address the four considerations. Third, a Danish intervention study is presented in order to discuss the potential of this multimethod research approach. We conclude by suggesting that future intervention studies should consider the potential for combining different research styles and forms of integration to the benefits of the patients and other health care users as the target group.


Assuntos
Pesquisa Biomédica/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Projetos de Pesquisa , Humanos , Neoplasias/psicologia , Neoplasias/reabilitação
10.
JMIR Res Protoc ; 4(3): e113, 2015 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-26392319

RESUMO

BACKGROUND: In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care. OBJECTIVE: The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome. METHODS: The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study. RESULTS: Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines. CONCLUSIONS: This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome.

11.
J Clin Nurs ; 24(21-22): 3266-75, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26259703

RESUMO

AIMS AND OBJECTIVES: This article explores the issues faced by immigrant women on long-term sick leave due to chronic pain, focusing on their personal perspectives on their daily lives, their bodies and their pain. BACKGROUND: An increasing number of immigrants in Norway present a challenge to the public health service, above all in relation to the health needs of immigrant women, many of whom risk having to take long-term sick leave due to chronic pain. DESIGN: This study has a qualitative design, with participant observation and in-depth interviews. METHODS: Participant observations were carried out from a sample of fourteen immigrant women in an outpatient clinic at a rehabilitation hospital. In addition, qualitative interviews were conducted after the rehabilitation period. A hermeneutic approach was used to understand the meaning of the narrated text. RESULTS: The analysis revealed one main theme, 'Bodies marked by onerous experiences', as well as two subthemes: 'It is in my body' and 'Invisible pain'. The immigrant women struggled with invisible, chronic pain, which they blamed on physically tiring workdays and stressful life situations. Furthermore, they felt that their experiences of discriminative attitudes at the workplace worsened their suffering. CONCLUSIONS: The chronic pain made the immigrant women suffer, because they experienced it as a threatening, incomprehensible and unreal force, without meaning or the ability to be controlled. Their own psychological distress exacerbated their pain. RELEVANCE TO CLINICAL PRACTICE: Immigrant women on long-term sick leave are likely to need special approaches that are closely adapted to their different backgrounds and their unique personal experiences. We recommend culturally appropriate family counselling and collaboration with employers at the women's workplaces.


Assuntos
Dor Crônica/psicologia , Emigrantes e Imigrantes , Licença Médica/estatística & dados numéricos , Estresse Psicológico , Adulto , Dor Crônica/etnologia , Dor Crônica/enfermagem , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Oriente Médio/etnologia , Noruega/epidemiologia , Sri Lanka/etnologia , Vietnã/etnologia , Saúde da Mulher
12.
Midwifery ; 31(7): 678-84, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25931276

RESUMO

OBJECTIVE: to explore and describe how healthcare professionals in the Southern Region of Denmark experienced motivational interviewing as a communication method when working with pregnant women with obesity. DESIGN: a qualitative, descriptive study based on face-to-face interviews with 11 obstetric healthcare professionals working in a perinatal setting. METHODS: a thematic descriptive method was applied to semi-structured interviews. The healthcare professional's experiences were recorded verbatim during individual semi-structured qualitative interviews, transcribed, and analysed using a descriptive analysis methodology. FINDINGS: motivational interviewing was found to be a useful method when communicating with obese pregnant women. The method made the healthcare professionals more aware of their own communication style both when encountering pregnant women and in their interaction with colleagues. However, most of the healthcare professionals emphasised that time was crucial and they had to be dedicated to the motivational interviewing method. The healthcare professionals further stated that it enabled them to become more professional in their daily work and made some of them feel less 'burned out', 'powerless' and 'stressed' as they felt they had a communication method in handling difficult workloads. CONCLUSION: healthcare professionals experienced motivational interviewing to be a useful method when working perinatally. The motivational interviewing method permitted heightened awareness of the healthcare professionals communication method with the patients and increased their ability to handle a difficult workload. Overall, lack of time restricted the use of the motivational interviewing method on a daily basis.


Assuntos
Atitude do Pessoal de Saúde , Tocologia , Entrevista Motivacional , Obesidade/prevenção & controle , Complicações na Gravidez/prevenção & controle , Cuidado Pré-Natal , Adulto , Dinamarca , Feminino , Humanos , Capacitação em Serviço , Entrevistas como Assunto , Pessoa de Meia-Idade , Gravidez
13.
Intensive Crit Care Nurs ; 31(4): 196-204, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-25743598

RESUMO

OBJECTIVE: The objective was to explore nurses' experiences of caring for non-sedated, critically ill patients requiring mechanical ventilation. DESIGN AND SETTING: The study had a qualitative explorative design and was based on 13 months of fieldwork in two intensive care units in Denmark where a protocol of no sedation is implemented. Data were generated during participant observation in practice and by interviews with 16 nurses. Data were analysed using thematic interpretive description. FINDINGS: An overall theme emerged: "Demanding, yet rewarding". The demanding aspects of caring for more awake intubated patients included unpredictability, ambiguous needs and complex actions, while the rewarding aspects included personal interaction. Three sub-themes were identified: (i) caring for and with the patient, (ii) negotiating relational and instrumental care and (iii) managing physical and emotional closeness. CONCLUSION: Despite the complexity of care, nurses preferred to care for more awake rather than sedated patients and appreciated caring for just one patient at a time. The importance of close collaboration between nurses and doctors to ensure patient comfort during mechanical ventilation was valued. Caring for more awake non-sedated patients required the nurses to act at the interface between ambiguous possibilities and needs, which was perceived as both demanding and rewarding.


Assuntos
Atitude do Pessoal de Saúde , Enfermagem de Cuidados Críticos , Estado Terminal/enfermagem , Respiração Artificial/enfermagem , Adulto , Dinamarca , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , Papel do Profissional de Enfermagem , Enfermeiras e Enfermeiros , Pesquisa Qualitativa , Inquéritos e Questionários , Vigília
15.
Patient ; 8(2): 127-43, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25142155

RESUMO

INTRODUCTION: Getting cancer is stressful for most patients and their relatives, and research has shown that psychosocial support is needed. Still, cancer care fails to appropriately address psychosocial problems associated with cancer. Research on this topic is often seen from the perspective of either the patient or the relative, even though it is suggested that psychosocial support is beneficial for the patient and the relative as a pair. Furthermore, research on the need for psychosocial support rarely involves patients with gynecological and lung cancer and their relatives, even though they often suffer from isolation and stigmatization. The aim of this review was therefore to summarize knowledge about psychosocial support with regard to individual needs, involvement of significant others, and providers of psychosocial support focusing on this specific population. METHOD: A narrative review procedure was chosen. This method is a specific kind of review, which summarizes, explains, and interprets evidence on a selected topic. The review process was structured according to typical scholarly articles with attention to the search and review process. RESULTS: A total of 16 studies were included in the review. The studies were divided into two main categories: (1) studies focusing on needs for psychosocial support; and (2) studies focusing on interventions. The needs studies were analyzed, and three themes emerged: the needs of the patient and the significant other across the cancer trajectory; the needs of the significant other as a carer; and needs and ongoing and tailored support. The intervention studies were directed toward the patient and the relative, the patient, or the relative. Five interventions comprising various forms of support that were purely supportive and were carried out by healthcare professionals were identified. CONCLUSION: There were overlaps between the needs of the patient and the relative, but there were also distinctive characteristics of the needs in the two groups. The needs varied during the cancer trajectory, and we therefore recommend that support be offered continuously. It was also evident that the relatives should be involved in the patients' care and that the involvement was beneficial for both the patient and the relative.


Assuntos
Família/psicologia , Neoplasias dos Genitais Femininos/psicologia , Neoplasias dos Genitais Femininos/reabilitação , Neoplasias Pulmonares/psicologia , Neoplasias Pulmonares/reabilitação , Cuidadores/psicologia , Feminino , Amigos/psicologia , Humanos , Masculino , Psicoterapia/métodos , Pesquisa Qualitativa , Qualidade de Vida , Apoio Social
16.
Patient ; 8(1): 41-9, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25231830

RESUMO

BACKGROUND: To complement the clinical and therapeutic knowledge about the symptoms, prognosis, and social implications of amyotrophic lateral sclerosis (ALS), health research and care need to develop methods that capture and communicate the unique individual impact on daily living with the disease. OBJECTIVE: To explore how narrative journalistic stories can communicate experiences of daily living with ALS and compensate the progressive loss of the ability to speak. METHODS: Twenty-four interviews at home with six people diagnosed with ALS were transformed into narrative journalistic stories. A formal readership was selected by the participant among his or her most significant health professionals. Topics of stories were categorized and selected themes analysed and interpreted. RESULTS: The stories communicated daily living with ALS as a continuous process of creating a new normality of everyday life. The stories also revealed conflicting views between patient and professionals regarding information about disease and prognosis. The approach used provided an understanding of the individual healthcare professionals' engagement with the patient. CONCLUSIONS: The narrative journalistic story enhances communication about daily living with ALS by offering a mode of sharing experiences that compensate the progressive loss of communicative abilities. The story sustains meaning for patients living with ALS, and supports them in appreciating a day-to-day life where they are not just waiting for death. Narrative journalistic storytelling may educate health professionals to more effectively comprehend that a medical prognosis should be complemented by understanding the individual's unique experience of vulnerability. In particular, this applies to severe rare diseases where insight is difficult to obtain.


Assuntos
Atividades Cotidianas , Esclerose Lateral Amiotrófica/psicologia , Comunicação , Narração , Adulto , Esclerose Lateral Amiotrófica/fisiopatologia , Feminino , Humanos , Jornalismo Médico , Masculino , Pessoa de Meia-Idade
17.
Am J Hosp Palliat Care ; 32(4): 427-36, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24595321

RESUMO

Research suggests that addressing dying patients' existential concerns can improve their quality of life. We aimed to illuminate dying patients' existential concerns about the impending death through a descriptive analysis of semistructured interviews with 17 patients in Danish hospices. The main findings demonstrated how the patients faced the imminent death without being anxious of death but sorrowful about leaving life. Some patients expressed that they avoided thinking about death. They wished to focus on positive aspects in their daily life. We argue that the patients' existential concerns could not be fully captured by Yalom's existential psychology or by Kübler-Ross's theory about death stages. Patients' complex concerns could be more fully explained taking an outset in Heidegger's phenomenological thinking.


Assuntos
Atitude Frente a Morte , Cuidados Paliativos na Terminalidade da Vida/psicologia , Qualidade de Vida , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Feminino , Pesar , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
18.
Cancer Nurs ; 38(2): E1-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-24831040

RESUMO

BACKGROUND: Despite an increasing focus on cancer rehabilitation programs, there is limited knowledge about the experiences of residential rehabilitation focusing on both the patients and their relatives. OBJECTIVE: The aim of this study was to explore the experienced benefits of the joint involvement of patients and their relatives in a 5-day residential cancer rehabilitation course, provided as part of a larger intervention study in Denmark. METHODS: Ethnographic fieldwork, consisting of participant observations and informal conversations, was conducted with 20 individuals (10 patients and 10 relatives). In-depth interviews were conducted in the participants' homes 1 month after the rehabilitation course. Data were analyzed by a constant comparative method. RESULTS: Residential rehabilitation course was identified to serve as an "arena for sharing," underpinned by 3 dimensions of sharing: sharing cancer experiences, sharing strategies, and sharing mutual care. CONCLUSION: Sharing in residential rehabilitation is experienced as useful for cancer patients and their relatives, to validate cancer-related strategies and strengthen mutual understanding within relationships. IMPLICATIONS FOR PRACTICE: The results can guide the development of cancer rehabilitation to involve patients and their relatives and provide opportunity for sharing and empowerment on individual as well as couple and group levels.


Assuntos
Atividades Cotidianas , Cuidadores/estatística & dados numéricos , Currículo/tendências , Neoplasias/reabilitação , Idoso , Idoso de 80 Anos ou mais , Dinamarca , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
19.
Patient ; 7(2): 219-29, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24477658

RESUMO

BACKGROUND: In psychosocial cancer rehabilitation, relatives are often central to patients' experiences and management of their cancer disease, and they need to be actively involved in rehabilitation. To address this need we developed a psychosocial rehabilitation intervention. As part of the intervention, lung or gynecological cancer patients and a relative as a pair were offered three supportive talks initiated on the date of admission and completed within 2 months. OBJECTIVE: The objective of this study was to qualitatively assess the outcome of supportive talks from the pairs' perspectives and to provide a nuanced understanding of psychosocial support offered to pairs in a hospital setting in Denmark. METHODS: Using a qualitative approach, we conducted semi-structured interviews with pairs receiving supportive talks and pairs receiving usual care. The interviews focused on the pairs' experiences of psychosocial supportive talks in a hospital setting. A constant comparative analysis was applied to identify themes related to the ways the pairs experienced the talks. RESULTS: The analysis revealed two main themes: 'appreciation of the supportive talks' and 'the influence of the hospital setting'. The majority of pairs valued the focus on relationship and interpersonal communication, although they appreciated various aspects of the talks. The hospital setting provided valuable resources (trained nurses and medical expertise), but existing clinical routines challenged the implementation of the supportive talks. CONCLUSIONS: The supportive talks were appreciated as psychosocial support in line with the objective, or as information on cancer treatment and routine care. The implementation of a new rehabilitation practice was challenged by the influence of the hospital setting.


Assuntos
Comunicação , Relações Familiares , Neoplasias/enfermagem , Neoplasias/psicologia , Pacientes/psicologia , Idoso , Feminino , Administração Hospitalar , Humanos , Masculino , Pessoa de Meia-Idade , Recursos Humanos de Enfermagem Hospitalar
20.
Cancer Nurs ; 37(6): 457-67, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24406382

RESUMO

BACKGROUND: The prediagnostic process for gynecological cancer has become quite rapid. It gives the woman limited time to handle new information about her illness and make decisions. The existing support initiatives in Denmark focus on aftercare rather than on needs for support in the prediagnostic period. OBJECTIVE: The purpose of this study was to investigate the need for supportive care among women with gynecological cancer and their relatives during the prediagnostic period. METHOD: A qualitative descriptive method was applied to semistructured interviews. We interviewed, at different times in the prediagnostic period, 16 women with gynecological cancer and 16 relatives. Participants were recruited at 1 hospital during a 3-month period. RESULTS: Women in the prediagnostic period require an overview of the treatment process supplemented with information, involvement, and help to prepare themselves for treatment. Relatives need involvement, someone to talk to, an overview of the prediagnostic period, and advice on communication about cancer with children and teenagers in the family. CONCLUSIONS: Women with gynecological cancer should be encouraged to let their relatives get involved in the prediagnostic period. Information about the prediagnostic period should be readily accessible at a time when the women and their relatives need this. Internet-based information could be a relevant solution in the prediagnostic period. IMPLICATIONS FOR PRACTICE: Issues concerning support of the relatives and needs among families with children should be spotted in the early diagnostic phase of patients with gynecological cancer. More knowledge about the prediagnostic period should be made available as eHealth solutions.


Assuntos
Família , Neoplasias dos Genitais Femininos/terapia , Apoio Social , Adulto , Idoso , Dinamarca , Feminino , Neoplasias dos Genitais Femininos/diagnóstico , Neoplasias dos Genitais Femininos/enfermagem , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
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