Home-based training technology for persons with dementia: a qualitative study of barriers and facilitators for mobility-based training at home.

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.

Men with cancer and their experiences of marital relationships: a struggle for control and balance.

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.

Negotiated mobilisation: An ethnographic exploration of nurse-patient interactions in an intensive care unit.

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.

"But this is a good cancer:" Patient perceptions of endometrial cancer in Denmark.

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.

Storytelling as part of cancer rehabilitation to support cancer patients and their relatives.

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.

Caught in suffering bodies: a qualitative study of immigrant women on long-term sick leave in Norway.

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.

Rehabilitation interventions for cancer survivors: The influence of context.

BACKGROUND: Today more and more people survive cancer. Cancer survivors need help to recover both from the cancer and the treatment. Rehabilitative interventions have been set up to meet their needs. However, there are studies that report no major effects following careful, targeted intervention. Furthermore, it seems difficult to define whether an effect is caused by the intervention or whether it is due to contextual parameters such as human interactions, the organisation, the staff, the physical surroundings or the general atmosphere. The present study examines the influence of three contextual parameters in rehabilitation courses for cancer survivors in Denmark. METHODS: The study was based on an ethnographic fieldwork with participant observation at nine week-long courses, on in-depth interviews and on written sources. Fieldwork is well-suited for studying interventions in context, such as social interactions between people and their physical, material and institutional surroundings. The analysis is based on Duranti's and Goodwin's theoretical approach to context. RESULTS: The findings are categorised into three contextual parameters. The setting, including its aesthetic value, its physical surroundings and the scheduling of the courses. The behavioural environment, which comprised work commitment and the care provided by the staff. The language environment insofar as it facilitated a sense of community. DISCUSSION: The results demonstrate the influence of contextual parameters not formalised in the intervention programme. Contexts affect the outcome of an intervention because they frame and inform the teaching, communication and various forms of social gathering. The study suggests that the effects of the intervention as measured by quantitative studies cannot be properly interpreted without taking into account the context within which the intervention is embedded.

Knowledge in health technology assessment: who, what, how?

Health systems are placing more and more emphasis on designing and delivering services that are focused on the patient, and there is a growing interest in patient aspects of health policy research and health technology assessment (HTA). Only a few HTA agencies use and invest in scientific methods to generate knowledge and evidence about the patient aspects of a given technology. This raises questions about how knowledge is produced in HTA reports and what kind of knowledge is considered relevant. This article uses a Danish HTA on patient education from 2009 as empirical material for a critical examination and discussion of knowledge and knowledge production about the patient aspects of HTA.

Patient aspects: a review of fifty-eight Danish HTA reports.

OBJECTIVES: The objective of this study is to describe how patient aspects are assessed in Danish HTA reports, thereby contributing to the ongoing international debates concerning patient aspects in HTAs. METHODS: Fifty-eight Danish HTA reports published from 1999 to 2010 were read systematically, focusing on the inclusion of patient aspects, the methods used to generate data, and if and how clinical recommendations concerning patient aspects were drawn. RESULTS: Most of the fifty-eight HTA reports had a separate chapter about patient aspects. All reports included literature reviews for patient aspects. There was, however, much variation in the ways in which the authors presented and discussed their review methods. The most frequently used databases for the literature search were medical and HTA databases. More than half of the reports included primary research, either quantitative or qualitative methods, a few used both kinds of methods. Whereas some mentioned the importance of including patient aspects in daily clinical practice, others provided ideas on how to improve patient information or recommended changes in healthcare practices. CONCLUSIONS: Danish HTA reports do, to a large extent, include patient aspects in the assessment and in the final conclusions of the reports. If health policy and decision making is to be patient-focused, it is important that HTAs in the future integrate patient aspects in recommendations of HTA. Further improvement in assessments of patient aspects, in relation to use and description of methodologies and theoretical considerations, will assist producing the relevant evidence for these recommendations.

Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation.

There is increasing emphasis on providing patient-focused health care and ensuring patient involvement in the design of health services. As health technology assessment (HTA) is meant to be a multidisciplinary, wide-ranging policy analysis that informs decision making, it would be expected that patients' views should be incorporated into the assessment. However, HTA is still driven by collection of quantitative evidence to determine the clinical and cost effectiveness of a health technology. Patients' perspectives about their illness and the technology are rarely included, perhaps because they are seen as anecdotal, biased views. There are two distinct but complementary ways in which HTAs can be strengthened by: (i) gathering robust evidence about the patients' perspectives, and (ii) ensuring effective engagement of patients in the HTA process from scoping, through evidence gathering, assessment of value, development of recommendations and dissemination of findings. Robust evidence eliciting patients' perspectives can be obtained through social science research that is well conducted, critically appraised and carefully reported, either through meta-synthesis of existing studies or new primary research. Engagement with patients can occur at several levels and we propose that HTA should seek to support effective patient participation to create a fair deliberative process. This should allow two-way flow of information, so that the views of patients are obtained in a supportive way and fed into decision-making processes in a transparent manner.

Organizational and patient-related assessments in HTAs: state of the art.

OBJECTIVES: The use and implementation of health technologies do influence and are influenced by organizational structures and processes as well as patient's experiences and actions. The objective of this study is to discuss the content and managing of organizational and patient-related assessments in HTAs. METHODS: Quantitative and qualitative analysis were performed based on a review of organizational and patient-related assessments included in a random sample of fifty HTA reports. The reports were identified from INAHTA members' Web sites where homepages of HTA agencies where searched for full HTA reports, published in English or Scandinavian languages. RESULTS: HTA reports including organizational assessments mainly comprised issues related to process and structure, while issues such as control and evaluation of the technology were included less often. Cultural and environmental issues were included in a little over half of the reports. Reports including patient-related assessments mainly comprised psychological issues. Patients' perceptions of the technology's effect on their health, patient-information, and social and ethical issues were included less often. Few reports included implications for the patient's significant others. There was considerable variation in how comprehensive the issues were managed as there was in the methodological transparency of the HTA reports. CONCLUSIONS: There is room for improvement in the assessments of organizational and patient-related issues. Absence of a description of the considerations made when determining the content and methods of the assessments limits the usefulness of an HTA. The reader is left uncertain of the relevance and validity of the organizational and patient-related assessments.

Cancer rehabilitation in Denmark: the growth of a new narrative.

A fundamental assumption behind cancer rehabilitation in many Western societies is that cancer survivors can return to normal life by learning to deal with the consequences of their illness and their treatment. This assumption is supported by increasing political attention to cancer rehabilitation and a growth in residential cancer-rehabilitation initiatives in Denmark (Danish Cancer Society 1999; Government of Denmark 2003). On the basis of their ethnographic fieldwork in residential-cancer rehabilitation courses, the authors examine the new rehabilitation discourse. They argue that this discourse has challenged the dominant illness narrative, "sick-helped-cured," producing a new narrative, "sick-helped-as if cured," and that this new narrative is produced and reproduced through technologies of power and of the self.

A sense of agency: An ethnographic exploration of being awake during mechanical ventilation in the intensive care unit.

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.

Meeting the Challenges of Intervention Research in Health Science: An Argument for a Multimethod Research Approach.

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.

A lonely life--A qualitative study of immigrant women on long-term sick leave in Norway.

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.

Completing a Questionnaire at Home Prior to Needs Assessment in General Practice: A Qualitative Study of Cancer Patients' Experience.

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.

Existential concerns about death: a qualitative study of dying patients in a Danish hospice.

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.

Involvement of patients with lung and gynecological cancer and their relatives in psychosocial cancer rehabilitation: a narrative review.

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.

Nurses' experiences of caring for critically ill, non-sedated, mechanically ventilated patients in the Intensive Care Unit: a qualitative study.

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.