Striving for a safe ground-A lifeworld approach of family members' experiences of the critical illness trajectory.

AIMS AND OBJECTIVES: To explore the experiences of family members after they have lived through a close one's illness trajectory starting with critical illness and intensive care treatment, throughout hospitalisation and after their return home, and describe what was important and challenging for them during this time. BACKGROUND: Being family during and after critical illness and intensive care treatment may be traumatic and challenging. An in-depth understanding of family members' lifeworld throughout a close one's illness trajectory is needed. DESIGN: A qualitative design with a phenomenological approach. METHODS: We held ten interviews with eleven next of kin, nine of which were individual and one with a parent couple. The interviews lasted 90 minutes, on average, and were transcribed verbatim. Giorgi's phenomenological method guided the analysis. RESULTS: The overall structure was 'striving for a safe ground for themselves and their close one', which was dependent on the three constituents of 'in need of care', 'to take on responsibility' and 'to create new understanding'. Throughout the illness trajectory, the family members required care to increase their feelings of safety in the context of their close one being unsafe. They described taking on responsibility for their close one-a responsibility that increased after hospital discharge-as demanding new knowledge which they were often unable to obtain. CONCLUSIONS: Families of critically ill patients need to be seen on their own behalf. Moreover, when taking on responsibility for their close one, they regularly need more knowledge than they get. There seems to be an absence of a support system for families with caring responsibilities after their relatives are discharged from hospitals. RELEVANCE TO CLINICAL PRACTICE: This study shows the importance of family carers being considered in their own right, as well as their individual needs throughout a close one's illness trajectory. There seems to be a gap in the knowledge of what family members require when their close one is discharged. Indeed, a better support system is essential for families following a hospital discharge.

Moral distress - a threat to dementia care? A qualitative study of nursing staff members' experiences in long-term care facilities.

BACKGROUND: Dementia is a public health priority worldwide due to its rapidly increasing prevalence and poses challenges with regard to providing proper care, including end-of-life care. This study is part of a research project about nursing staff members' experiences with providing palliative care for people with severe dementia in long-term care facilities. In an earlier study, we found that structural barriers that complicated the provision of palliative care led to moral distress among nursing staff. In this study, we performed a secondary analysis of the same data set to gain a deeper understanding of nursing staff members experiences of moral distress while providing palliative care for residents with severe dementia in long-term care facilities. METHODS: A qualitative, descriptive design was used. Data were collected during in-depth interviews with 20 nursing staff members from four Norwegian long-term care facilities. Content previously identified as moral distress was reanalysed by thematic text analysis, as described by Braun and Clarke, to gain a deeper understanding of the phenomenon. RESULTS: The nursing staff members' experiences of moral distress were generally of two types: those in which nursing staff members felt pressured to provide futile end-of-life treatment and those in which they felt that they had been prevented from providing necessary care and treatment. CONCLUSION: The findings indicate that nursing staff members' experiences of moral distress were related to institutional constraints such as time limitations and challenging prioritizations, but they were more often related to value conflicts. Nursing staff members experienced moral distress when they felt obligated to provide care and treatment to residents with severe dementia that conflicted with their own values and knowledge about good palliative care. Both education interventions focused on improving nursing staff members' skills regarding communication, ethical judgement and coping strategies; in addition, supportive and responsive leadership may have significant value with regard to reducing moral distress. Our findings indicate a need for further research on interventions that can support nursing staff members dealing with ethical conflicts in providing palliative care to residents with dementia.

Understanding the Course of Critical Illness Through a Lifeworld Approach.

An increasing number of individuals receive and survive intensive care treatment; however, several individuals experience problems afterward, which may threaten recovery. Grounded in a lifeworld approach, the aim of this study was to explore and describe what intensive care patients experience as limiting and strengthening throughout their illness trajectories. Ten former intensive care patients were interviewed three to eight months after hospital discharge. Using Giorgi's phenomenological analysis, a general structure of gaining strength through a caring interaction with others was revealed. The structure consisted of three constituents: feeling safe through a caring presence, being seen and met as a unique person, and being supported to restore capacity. Being met with a humanistic approach and individualized care appeared to be important, and the findings are discussed within the framework of lifeworld-led care. To facilitate improved aftercare of the critically ill, more tailored support throughout the illness trajectory is needed.

Viewing the image? Ultrasound examination during abortion preparations, ethical challenges.

During preparation for early abortion in Norway, an ultrasound examination is usually performed to determine gestation and viability. This article aims to provide a deeper understanding of women's and health care personnel's (HCP) experiences with ultrasound viewing during abortion preparation in the first trimester. Qualitative in-depth interviews with women who had been prepared for early abortion and focus group interviews with HCP from gynaecological units were carried out. A hermeneutic-phenomenological analysis, inspired by van Manen, was chosen. Thirteen women who were pregnant and considering abortion in their first trimester and 20 HCP, namely, 19 registered nurses and one medical doctor, were recruited from gynaecological units at six hospitals. The study was approved by the ethics committee (2014/1276). The essential meaning structure of 'autonomy under pressure' consisted of two themes that expressed the different experiences of both the women and the HCP, namely, expectations versus precautions and choice versus protection. The women and HCP expressed different attitudes before the consultation that affected their experiences of the ultrasound examination. While the women had expectations of a clarification based on their choice to either see or not see the ultrasound image, HCP seemed to be more concerned with predetermined rules that they believed would protect the women. Consequently, the basis for dialogue was not optimal, and women's autonomy was under pressure. Health care personnel are ethically challenged during preabortion ultrasound examinations. Meeting the individual woman's needs and respecting her autonomy during preparation for abortion requires sensitivity, involvement, and dialogue skills by health personnel. According to the woman's desire to be informed about the possibility of viewing the image during the abortion preparations, a dialogue that is focused in this direction should arise before the examination.

Patients' quest for recognition and continuity in health care: time for a new research agenda?

User involvement is important in democratization of health care and is assumed to contribute to better and more relevant research. Despite increased requirements for user involvement in research, more studies are still needed. This study aimed at exploring what research agenda people with varied health problems consider as important, based on their own experience. The study had a phenomenological approach with a qualitative design. The sample consisted of 23 informants; nine had been critically ill and 14 were suffering from chronic muscle pain. Data were collected in five focus group interviews and one individual interview. A phenomenological approach was used in analyzing the data. Written consent was obtained from all the participants, and ethical considerations were taken throughout the entire research process. Despite various experiences among the participants, a quest to be taken seriously over time by healthcare professionals emerged as a strong meaning structure in both groups. Based on these experiences, continuity across lifetime changes turned out to be an important research topic for future research. User involvement should be appreciated in all parts of the research process. A crucial prerequisite is that the users get the opportunity to bring their own experiences into the process.

Beyond autonomy and care: Experiences of ambivalent abortion seekers.

BACKGROUND: While being prepared for abortions, some women experience decisional ambivalence during their encounters with health personnel at the hospital. Women's experiences with these encounters have rarely been examined. OBJECTIVE: The objective of this study was to explore ambivalent abortion-seeking women's experiences of their encounters with health personnel. RESEARCH DESIGN: The data were collected in individual interviews and analysed with dialogical narrative analyses. PARTICIPANTS AND RESEARCH CONTEXT: A total of 13 women (aged 18-36 years), who were uncertain of whether to terminate their pregnancies during the first trimester, were interviewed before and after they made their decisions. The participants were recruited at six Norwegian outpatient clinics. ETHICAL CONSIDERATIONS: Approval was granted by the Regional Committee for Medical and Health Research Ethics. FINDINGS: The ambivalent pregnant women sought to make autonomous decisions while simultaneously involving their closest confidants and health personnel in the process. The following three types of narratives of women's experiences with encounters with health personnel were identified: the respected women; the identified women; and the abandoned women. DISCUSSION: The findings are discussed in terms of the ambivalent pregnant woman's autonomous responsibility in considering an abortion and how her autonomy can be enabled or impaired during encounters with health personnel. CONCLUSION AND IMPLICATION: Although the women considered themselves autonomous and responsible for their final decisions, they wished health personnel were involved in their situations. The health personnel contributed by enabling or disabling the possibility of decision-making in accordance with the women's values. The findings indicate that health personnel who care for women considering abortions must be trained in dialogical competence.

Perceived barriers and facilitators in providing palliative care for people with severe dementia: the healthcare professionals' experiences.

BACKGROUND: Dementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities. METHODS: This was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke. RESULTS: The major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care. CONCLUSIONS: The findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.

A painful experience of limited understanding: healthcare professionals' experiences with palliative care of people with severe dementia in Norwegian nursing homes.

BACKGROUND: People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes. METHODS: To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes. RESULTS: The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests. CONCLUSIONS: We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care.

Walking on a tightrope-Caring for ambivalent women considering abortions in the first trimester.

AIMS AND OBJECTIVES: To improve the understanding and competence of health personnel when caring for ambivalent pregnant women, the aim of this study was to explore the experiences of encountering women who are unsure whether to complete or terminate pregnancy. BACKGROUND: Feelings of ambivalence are present in a significant number of women preparing for abortions and may challenge the provision of health care. Health personnel have reported an ideal to be nonjudgemental and supportive. Insufficient attention has been directed to the experiences of health personnel who prepare women for abortions in gynaecological units. DESIGN: Qualitative design with a hermeneutic-phenomenological approach. METHODS: Focus group interviews were conducted with health personnel from four gynaecological outpatient clinics and wards in Norway (n = 20). RESULTS: The health personnel felt responsible for contributing to patient well-being. This demanded focused attention towards all women being prepared for abortions and meant a consciousness and balancing act towards revealing, handling and being involved in the woman's potential unsureness without influencing her decision. When involved, the health personnel risked being confronted with their own vulnerabilities and values. CONCLUSIONS: The health personnel tried to balance their care and support without influencing the woman's decision. Although they viewed the women as fully autonomous and responsible, they became personally involved, to varying degrees, in the uncertainty and were faced with their own vulnerabilities and values. They lacked a possibility for immediate debriefing and regular counselling after complicated consultations. RELEVANCE TO CLINICAL PRACTICE: Knowledge of the experiences of health personnel can provide input for professional development at gynaecological departments. These findings contribute to discussions about what information should be given and whether the woman's feelings should be discussed in preparation for an abortion. The ability of health personnel to discuss subjects related to ethically challenging encounters with women who are considering abortions should be established, namely, professional education and workshops at the national level and small groups with counselling and case study discussions at hospitals.

Telemedicine follow-up facilitates more comprehensive diabetes foot ulcer care: A qualitative study in home-based and specialist health care.

AIMS AND OBJECTIVES: To investigate the application of a telemedicine intervention in diabetes foot ulcer care, and its implications for the healthcare professionals in the clinical field. BACKGROUND: Contextual factors are found to be important when applying technology in health care and applying telemedicine in home-based care has been identified as particularly complex. DESIGN AND METHODS: We conducted field observations and individual interviews among healthcare professionals in home-based care and specialist health care in a diabetes foot care telemedicine RCT (Clin.Trial.gov: NCT01710774) during 2016. This study was guided by Interpretive Description, an inductive qualitative methodology. RESULTS: Overall, we identified unequal possibilities for applying telemedicine in diabetes foot ulcer care within the hospital and home care contexts. Different circumstances and possibilities in home-based care made the application of telemedicine as intended more difficult. The healthcare professionals in both care contexts perceived the application of telemedicine to facilitate a more comprehensive approach towards the patients, but with different possibilities to enact it. CONCLUSIONS: Application of telemedicine in home-based care was more challenging than in the outpatient clinic setting. Introducing more updated equipment and minor structural adjustments in consultation time and resources could make the use of telemedicine in home-based care more robust. RELEVANCE TO CLINICAL PRACTICE: Application of telemedicine in diabetes foot ulcer follow-up may enhance the nursing staff's ability to conduct comprehensive assessment and care of the foot ulcer as well as the patient's total situation. Access to adequate equipment and time, particularly in home-based care, is necessary to capitalise on this new technology.

The provision of nurse-led follow-up at Norwegian intensive care units.

AIMS AND OBJECTIVES: To describe the prevalence, content and administration of intensive care unit diaries and follow-up practices offered to patients and their families in Norway. BACKGROUND: Intensive care treatment has been associated with risks for new or increased health impairments affecting both patients and their families. These impairments have the potential of continuing beyond the acute phase of treatment. In parallel, preventive actions have gradually become an integrated part of critical care nursing, and in Norway, national recommendations for the use of intensive care unit diaries have been established. DESIGN AND METHODS: A survey was conducted in Norwegian intensive care units offering care for adult patients, using a questionnaire asking about the frequency, administration and content of the follow-up offered to patients, their relatives, as well as bereaved family members. RESULTS: Thirty-nine of 66 (59.1%) invited intensive care units answered the questionnaire. The majority (n = 33, 84.6%) of the responding units had follow-up routines. The provision of diaries was the most frequent follow-up activity (n = 24, 61.5%), and consultations postdischarge formed an integrated part of the diary practice. Consultations with bereaved were conducted in 21 (53.8%) of the intensive care units. About one quarter of the responding intensive care units had positions for follow-up nursing staff. CONCLUSION: Nurse-led follow-up after critical care was a common activity in Norwegian intensive care units, comprising diaries and consultations offered to patients and family members. The follow-up was mainly driven by bottom-up processes conducted by dedicated nurses motivated by the patients' and their families' situation and feedback. RELEVANCE TO CLINICAL PRACTICE: Adherence to recommendations, as well as the availability of defined positions for aftercare nurses or teams, may improve the implementation of follow-up practices and reduce suffering after discharge from Norwegian intensive care units.

"Eight Days of Nightmares " - Octogenarian Patients' Experiences of Postoperative Delirium after Transcatheter or Surgical Aortic Valve Replacement.

BACKGROUND: Surgical aortic valve replacement (SAVR) and transcatheter aortic valve implantation (TAVI) are increasingly performed in octogenarian patients with severe aortic stenosis (AS), including those with high surgical risk. Postoperative delirium (PD) is a common and serious complication in older patients, characterised by reduced awareness, change in consciousness, disturbance in logical thinking and hallucinations. METHODS: To explore how octogenarian patients experienced PD, a qualitative study was conducted including five women and five men between 81 and 88 years. The incidence of PD was assessed for five days using the Confusion Assessment Method. Cognitive function was assessed preoperatively and at a 6-month follow-up using the Mini-Mental State Examination. In-depth interviews were conducted 6-12 months post-discharge, transcribed, and analysed using Giorgi's phenomenological method. RESULTS: Postoperative delirium experiences were grouped into six themes: "Like dreaming while awake", "Disturbed experiences of time", "Existing in a twilight zone", "Trapped in medical tubes", "Moving between different surroundings" and "Meeting with death and the deceased". CONCLUSIONS: For the first time, we show that octogenarian patients who undergo SAVR or TAVI have strong and distressing memories of their delirious state that can persist for up to 12 months later. These findings provide valuable new information that will likely improve delivery of health services and enhance professional and empathic care of octogenarians after SAVR and TAVI.

Women's experiences when unsure about whether or not to have an abortion in the first trimester.

Abortion during the first trimester is legal in most Western countries. However, deciding to terminate a pregnancy is a challenging process, and some women arrive at the abortion clinic still not absolutely certain. We explored the experiences of 13 pregnant Norwegian women struggling to finalize their decision, interviewing them before and after their decision. Verification of the pregnancy meant a new reality for the women. They started to consider their readiness, describing the experience as a lonely journey during which their values were challenged. A feeling of existential loneliness dominated the decision-making process and the implementation.

A European multicenter study on systematic ethics work in nursing homes.

BACKGROUND: There are many existing ethical challenges in nursing homes. Although different methods and approaches to discussing the ethical challenges have been established, systematic ethics work is not yet a standard in all nursing homes. The aim of the present study was to explore ethical challenges and approaches to implementing systematic ethics work in nursing homes. METHODS: Data from five institutions in Austria, Germany and Norway were collected, and a mixed-methods two-tiered study approach was chosen. Documentation of ethics discussions was combined with qualitative focus group interviews with staff members regarding the implementation of systematic ethics work in nursing homes. RESULTS: One hundred and five ethics meetings were documented. The main topics were advance care planning, ethical challenges associated with artificial nutrition, hospitalisation and end-of-life decision-making. Of the meetings, 33% focused mainly on everyday ethical challenges. In 76% of prospective case discussions, agreements about a solution were reached; however, in 29% of these no residents or relatives participated. The advantages of systematic ethics work described by the staff were enhanced openness and dialogue, overall, and a greater ethical awareness. Many voiced a need for structure and support from the administration. CONCLUSIONS: Systematic ethics work is greatly appreciated by the staff and helps to reach a consensus in the majority of case discussions. It should be implemented in all nursing homes. Attention to everyday ethical challenges is important. The participation of relatives and physicians could be improved. The participation of the residents' in ethics discussions should be encouraged to strengthen their autonomy and dignity.

Conditions for success in introducing telemedicine in diabetes foot care: a qualitative inquiry.

BACKGROUND: The uptake of various telehealth technologies to deliver health care services at a distance is expanding; however more knowledge is needed to help understand vital components for success in using telehealth in different work settings. This study was part of a larger trial designed to investigate the effect of an interactive telemedicine platform. The platform consisted of a web based ulcer record linked to a mobile phone to provide care for people with diabetic foot ulcers in outpatient clinics in specialist hospital care in collaboration with primary health care. The aim of this qualitative study was to identify perceptions of health care professionals in different working settings with respect to facilitators to engagement and participation in the application of telemedicine. METHODS: Ten focus groups were conducted with health care professionals and leaders in Western Norway between January 2014 and June 2015 using Interpretive Description, an applied qualitative research strategy. RESULTS: Four key conditions for success in using telemedicine as a new technology in diabetes foot care were identified: technology and training that were user-friendly; having a telemedicine champion in the work setting; the support of committed and responsible leaders; and effective communication channels at the organizational level. CONCLUSIONS: Successful larger scale implementation of telemedicine must involve consideration of complex contextual and organizational factors associated with different work settings. This form of new care technology in diabetes foot care often involves health care professionals working across different settings with different management systems and organizational cultures. Therefore, attention to the distinct needs of each staff group seems an essential condition for effective implementation.

They know!-Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes.

BACKGROUND: Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision. AIM: To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes. DESIGN: A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description. SETTING/PARTICIPANTS: In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care. RESULTS: The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents' wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia. CONCLUSION: Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents.

Telemedicine in diabetes foot care delivery: health care professionals' experience.

BACKGROUND: Introducing new technology in health care is inevitably a challenge. More knowledge is needed to better plan future telemedicine interventions. Our aim was therefore to explore health care professionals' experience in the initial phase of introducing telemedicine technology in caring for people with diabetic foot ulcers. METHODS: Our methodological strategy was Interpretive Description. Data were collected between 2014 and 2015 using focus groups (n = 10). Participants from home-based care, primary care and outpatient hospital clinics were recruited from the intervention arm of an ongoing cluster randomized controlled trial (RCT) (Clinicaltrials.gov: NCT01710774). Most were nurses (n = 29), but the sample also included one nurse assistant, podiatrists (n = 2) and physicians (n = 2). RESULTS: The participants reported experiencing meaningful changes to their practice arising from telemedicine, especially associated with increased wound assessment knowledge and skills and improved documentation quality. They also experienced more streamlined communication between primary health care and specialist health care. Despite obstacles associated with finding the documentation process time consuming, the participants' attitudes to telemedicine were overwhelmingly positive and their general enthusiasm for the innovation was high. CONCLUSIONS: Our findings indicate that using a telemedicine intervention enabled the participating health care professionals to approach their patients with diabetic foot ulcer with more knowledge, better wound assessment skills and heightened confidence. Furthermore, it streamlined the communication between health care levels and helped seeing the patients in a more holistic way.

Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study.

Women identified as BRCA1 and BRCA2 mutation carriers are advised to manage their cancer risk through intensive screening programs and/or by undergoing risk-reducing surgery. The aim of this study was to explore and describe the experiences of female BRCA1/2 mutation carriers living with cancer risk and their experiences with participation in educational support groups (ESG). This qualitative study enrolled 17 (10 + 7) ESG participants in two different ESGs. The focus group interviews were performed immediately prior to and following two ESGs. The data were analyzed using John Knodel's (1993) practical approach. Three main themes were identified; the women's expectation and experience with ESG, the feeling of loneliness and isolation, and the feelings of living with "something else." In this paper we have focused on one of the main themes- the women's expectation and experience with ESG. This main theme presents four subthemes: the women's need for unambiguous, clear and unified information from health professionals, the need for social support, the important role of the patient representative, and increased knowledge potentially raising concern. Participation in an ESG for women with BRCA1 and BRCA2 mutations can provide relevant information and support in the decision-making process related to risk-reducing surgery.

Experience of knowledge and skills that are essential in self-managing a chronic condition - a focus group study among people with type 2 diabetes.

AIMS: The purpose of the study was to gain new knowledge about how people experience participating in diabetes self-management courses with other people with type 2 diabetes and how they perceive this influences their health and ability to self-manage the disease. METHODS: We conducted five focus groups with 22 people with type 2 diabetes who had participated in a group-based diabetes self-management course. We systematically coded the data and analysed them using Knodel's method. FINDINGS: Participants gained more nuanced and specific knowledge by participating in a group setting. They increased their theoretical and practical understanding of how to handle diabetes in everyday life. The diabetes self-management course made the participants more aware of having a disease they had to take more seriously. Learning by being in the situation while guided by professionals was useful. In addition, the participation learned from each other by carrying out real tasks in a context with others struggling with similar treatment demands. They wished more room to perform practical tasks and more independent activity. Further, they suggested to make parts of the course accessible online. Still, it was noted that web-based solutions cannot replace the practical parts or the dialogue between the participants. They expressed both a need and a wish for a refresher course. CONCLUSION: This study underscored that the participants learned through concrete experience, and by trying out practical tasks by becoming part of the diabetes community. They felt safer regarding their own treatment by experiencing a variety of situations in real-life scenarios.

Nothing to complain about? Residents' and relatives' views on a "good life" and ethical challenges in nursing homes.

BACKGROUND: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives' view, but substantial knowledge about the residents' perspective is lacking. OBJECTIVE: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. RESEARCH DESIGN: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. PARTICIPANTS AND RESEARCH CONTEXT: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. ETHICAL CONSIDERATIONS: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. FINDINGS AND DISCUSSION: The main ethical challenges in Norwegian nursing homes from the residents' and relatives' perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. CONCLUSION: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to "everyday ethical issues."