Implementation of remote home care: assessment guided by the RE-AIM framework.

BACKGROUND: Welfare technology interventions have become increasingly important in home-based palliative care for facilitating safe, time-efficient, and cost-effective methods to support patients living independently. However, studies evaluating the implementation of welfare technology innovations are scarce, and the empirical evidence for sustainable models using technology in home-based palliative care remains low. This study aimed to report on the use of the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework to assess the implementation of remote home care (RHC) a technology-mediated service for home-living patients in the palliative phase of cancer. Furthermore, it aimed to explore areas of particular importance determining the sustainability of technologies for remote palliative home-based care. METHODS: A secondary analysis of data collected by semi-structured interviews with patients with cancer in the palliative phase, focus groups, and semi-structured interviews with healthcare professionals (HCPs) experienced with RHC was performed. A deductive reflexive thematic analysis using RE-AIM dimensions was conducted. RESULTS: Five themes illustrating the five RE-AIM dimensions were identified: (1) Reach: protective actions in recruitment - gatekeeping, (2) Effectiveness: potential to offer person-centered care, (3) Adoption: balancing high touch with high tech, (4) Implementation: moving towards a common understanding, and (5) Maintenance: adjusting to what really matters. The RE-AIM framework highlighted that RHC implementation for patients in the palliative phase of cancer was influenced by HCP gatekeeping behavior, concerns regarding abandoning palliative care as a high-touch specialty, and a lack of competence in palliative care. Although RHC facilitated improved routines in patients' daily lives, it was perceived as a static service unable to keep pace with disease progression. CONCLUSIONS: A person-centered approach that prioritizes individual needs and preferences is necessary for providing optimal care. Although technologies such as RHC are not a panacea, they can be integrated as support for increasingly strained health services.

Health Care Personnel's Perspectives on Quality of Palliative Care During the COVID-19 Pandemic - A Cross-Sectional Study.

Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic. Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents' demographics and quality of care, the latter measured by the short form of the Quality from the Patient's Perspective-Palliative Care instrument, adapted for HCP. The STROBE checklist was used. Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement. Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.

Teaching to prepare undergraduate nursing students for palliative care: nurse educators' perspectives.

BACKGROUND: Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden. METHODS: Educators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis. RESULTS: Educators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, "Transforming person-centred palliative care into student-centred education", educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students' stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals. CONCLUSIONS: This study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students' emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.

Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review.

BACKGROUND: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth in home-based palliative care. OBJECTIVE: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients' use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients. METHODS: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis. RESULTS: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth. CONCLUSIONS: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

Patients' experiences with a welfare technology application for remote home care: A longitudinal study.

AIMS AND OBJECTIVES: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home. BACKGROUND: Introducing welfare technology in home-based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home-based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and challenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found. DESIGN: A qualitative study with a longitudinal, exploratory design. METHODS: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study. RESULTS: Three themes were identified: (1) potential to facilitate self-governance of life-limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care. CONCLUSION: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness-management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow-up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase. RELEVANCE TO CLINICAL PRACTICE: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies. PATIENT OR PUBLIC CONTRIBUTION: The remote home care was developed by interdisciplinary healthcare professionals.

Teaching about death and dying-A national mixed-methods survey of palliative care education provision in Swedish undergraduate nursing programmes.

BACKGROUND: In coming decades, the number of people affected by illnesses who need palliative care will rise worldwide. Registered Nurses are in a central position in providing this care, and education is one of the necessary components for meeting coming requirements. However, there is a lack of knowledge about palliative care in undergraduate nursing education curricula, including the extent of the education provided and the related pedagogical methods. AIM: The aim was to investigate the extent, content and pedagogical methods used and to explore lecturers' experiences of being responsible for teaching and learning about palliative care for undergraduate nursing students on nursing programmes at Swedish universities. SETTING: All 24 universities responsible for providing undergraduate nursing education in Sweden participated. PARTICIPANTS: One lecturer with in-depth knowledge about palliative care or end-of-life care education participated in the quantitative (n = 24) and qualitative (n = 22) parts of the study. METHOD: A mixed-method research study with an explorative design was used. Descriptive statistics were used to analyse quantitative data, and content analysis for qualitative, with both also analysed integratively. RESULTS: Few undergraduate nursing programmes included a specific course about palliative care in their curricula, however, all universities incorporated education about palliative care in some way. Most of the palliative care education was theoretical, and lecturers used a variety of pedagogical strategies and their own professional and personal experience to support students to understand the palliative care approach. Topics such as life and death were difficult to both learn and teach about. CONCLUSIONS: There is a need for substantial education about palliative care. Lecturers strive on their own to develop students' understanding and increase the extent of palliative care education with innovative teaching strategies, but must compete with other topics. Palliative care teaching must be prioritised, not only by the universities, but also by the national authority.

Implementing welfare technology in palliative homecare for patients with cancer: a qualitative study of health-care professionals' experiences.

BACKGROUND: Introducing welfare technology in home-based palliative care has been suggested to be beneficial for improving access to health care at home and enhancing patients' feelings of security and safety. However, little is known about the experiences of municipal health-care professionals using welfare technology in palliative home care. The aim of this study was to explore municipal health-care professionals' experiences regarding the significant challenges, facilitators, and assessments associated with implementing a technological solution named "remote home care" in palliative home care for patients with cancer. METHODS: A qualitative, descriptive, exploratory design was used. Data were collected through focus-group interviews and individual semi-structured interviews with interdisciplinary health-care professionals who had experience using remote home care in clinical encounters with cancer patients who were in the palliative phase and living at home. Data were analyzed using qualitative content analysis. RESULTS: Three themes were identified: 1) shifting from objective measures to assessing priorities for patients, 2) lack of experience and personal distress regarding cancer inhibits professional care, and 3) prominent organizational challenges undermine the premise of remote home care. CONCLUSION: The results showed that shifting from a disease-focused to a person-centered approach enables health-care professionals to assess patients' personal priorities. However, health-care professionals' uncertainty and lack of knowledge and experience, along with organizational issues concerning information-sharing, represent great challenges that have the potential to inhibit professional care. The availability of networks through which difficult issues can be discussed was highlighted as being a fundamental resource for facilitating the provision of care.

Advantages and Challenges in Using Telehealth for Home-Based Palliative Care: Protocol for a Systematic Mixed Studies Review.

BACKGROUND: Given the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE: The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients' use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS: This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data, and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS: We describe the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS: Following the ethos of patient-centered palliative care, this systematic mixed studies review could lead to recommendations for practice and policy, enabling the development and implementation of telehealth applications and services that align with patients' preferences and needs at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/22626.

Development and Psychometric Evaluation of a New Short Version of the Swedish Frommelt Attitudes Toward Care of the Dying Scale.

BACKGROUND: The Frommelt Attitudes Toward Care of the Dying (FATCOD) is widely used as a measure of attitudes toward care of dying patients. However, poor factor structure and item redundancy have been reported across the literature. OBJECTIVE: A short version of the questionnaire is needed, to facilitate effective assessments of the attitudes of those caring for dying patients. The purpose of this study was to develop a FATCOD-Short Form and to secure its psychometric properties. INTERVENTIONS/METHODS: Data gathered from 1000 nurses in previous studies were pooled and reanalyzed. Principal components analysis and confirmatory factor analysis were utilized to assess the factor structure of the FATCOD-30. A Rasch model was used to evaluate the measurement functioning of the scale. RESULTS: Of the original 30 items, 9 items of FATCOD were chosen for retention in the short form based on the principal components analysis, floor or ceiling effects, interitem correlations, and item-total correlation. All 9 items had good internal reliability. Both confirmatory factor analysis and Rasch analysis supported the unidimensionality of the FATCOD-Short Form. CONCLUSIONS: The 9-item FATCOD-Short Form demonstrates evidence of acceptable validity and reliability to identify nurses' attitudes toward caring for dying persons because of its brevity and comprehensive content. IMPLICATIONS FOR PRACTICE: When changing curricula in nursing education or implementing new procedures in nursing practice, it is important to have valid instruments to evaluate the results of the change. Such instruments should not be too lengthy or complicated. FATCOD-Short Form is a brief and valid instrument that can be easily used.

The 6S-model for person-centred palliative care: A theoretical framework.

Palliative care is provided at a certain timepoint, both in a person's life and in a societal context. What is considered to be a good death can therefore vary over time depending on prevailing social values and norms, and the person's own view and interpretation of life. This means that there are many interpretations of what a good death can actually mean for an individual. On a more general level, research in palliative care shows that individuals have basic common needs, for example physical, mental, social and spiritual well-being. Therefore, in today's pluralistic Western society, it becomes important that palliative care is person centred to enable individuals to receive, as far as can be achieved, care that promotes as good a life as possible based on the person's own needs and preferences, and in accordance with evidence and current laws. For many years a research group, consisting nurse researchers together with nurses working in palliative care, has developed a model for person-centred palliative care, the 6S-model. The model's central concept is Self-image, where the starting point is the patient as a person and their own experience of the situation. The other concepts: Self-determination, Symptom relief, Social relationships, Synthesis and Strategies are all related to the patient's self-image, and often to each other. The model's development, value base and starting assumptions are reported here, as are examples of how the model is applied in palliative care in Sweden. The model has been, and still is, constantly evolving in a collaboration between researchers and clinically active nurses, and in recent years also with patients and close relatives.

Elements of assisted bodily care: Ethical aspects.

BACKGROUND: Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy and dignity of identity. While assistant nurses claim to support older persons' wishes, older persons claim they have to adapt to assistant nurses' routines. The provider-receiver incongruence revealed here warrants investigation. AIM: To describe the elements of assisted bodily care, as performed in a nursing home. RESEARCH DESIGN: Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home. ETHICAL CONSIDERATIONS: The research was conducted in line with the Declaration of Helsinki, further approved by the regional ethics committee. FINDINGS: Findings show that assisted bodily care consists of assistant nurses' practical work, performed at a high tempo. Assistant nurses still attempt to adapt this work to the older persons' wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care. DISCUSSION: Assistant nurses try to promote older persons' dignity of identity, but sometimes fail, possibly due to lack of time. They nevertheless seem to know the older persons well enough to adapt the assisted bodily care according to their preferences and to support self-determination. This indicates that openness to older persons' lifeworlds may be more important than the amount of time available. CONCLUSION: Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could agree on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

Being a spectator in ambiguity-Family members' perceptions of assisted bodily care in a nursing home.

AIM: The aim of this study was to explore family members' perceptions of assisted bodily care in a nursing home. BACKGROUND: Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses. DESIGN: This study has a qualitative design with a phenomenographic approach. METHODS: Data were collected through semi-structured interviews (n = 13) with family members of older people who were aged > 80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method. RESULTS: Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older person's self-determination, practically supported by assistant nurses, and complemented by family members. CONCLUSIONS: In the family members' perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons' need for self-determination and need for help, and, further, between their trust in the assistant nurses' skills and their own perceived inadequacies in intimate assisted bodily care. IMPLICATIONS FOR PRACTICE: Policies that address the family members' role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members' perceptions of their situation and learn from them.

Development of the 6S Dialogue Tool to facilitate person-centred palliative care.

AIMS: To develop and psychometrically test the 6S Dialogue Tool. BACKGROUND: The 6S Dialogue Tool was elaborated to provide knowledge to nurses about patients' preferences in congruence with the 6S person-centred palliative care model, which includes the S-concepts of self-image, symptom relief, self-determination, social relationships, synthesis and strategies. The tool needs to be scrutinized for appropriateness. DESIGN: A qualitative study investigating construct validity of the 6S Dialogue Tool. METHODS: Forty-six patients in palliative care services in Sweden responded to 15 questions from May 2015 - August 2016. Responses were analysed with qualitative content analysis. RESULTS: Six categories, capturing the meaning of the 6S-concepts, were formulated: Maintaining everyday life; Challenges in everyday life; Maintaining control; Maintaining selected relationships; Appraisal of life; and Appraisal of the future. CONCLUSION: The responses to the 6S Dialogue Tool questions reflect the intent of the 6S-concepts. Nurses should integrate the 6S-concepts and the questions in their approach to facilitate to co-create meaningful palliative care in dialogue with the patient. IMPACT: Patients' preferences must be explored to co-create palliative care in accordance with their own needs and beliefs. The 6S Dialogue Tool questions are suitable for obtaining patients' preferences and could be used as an approach in palliative care. Patients, families and nurses will have the potential to co-create palliative care and to improve possibilities for patients to have an appropriate death.

Assenting to exposedness - meanings of receiving assisted bodily care in a nursing home as narrated by older persons.

Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons' perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological-hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: 'Assenting to exposedness'. This theme comprised five themes, 'To have hope in hopelessness', 'To relinquish one's body into others' hands', 'To be between power and powerlessness', 'To oscillate between one's own responsibility and demands', 'To be in an ongoing interaction', and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care-suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.

End-of-life care in a nursing home: Assistant nurses' perspectives.

BACKGROUND: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. OBJECTIVE: To describe assistant nurses' perspectives of providing care to older persons at the end of life in a nursing home. RESEARCH DESIGN: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Seven assistant nurses from a nursing home in Sweden were randomly selected. ETHICAL CONSIDERATION: The research was approved by the local ethics committee. RESULTS: Three main categories emerged; "Death a natural part of life"; "The older person's well-being"; and "Care in the moment of death"; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons' dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. DISCUSSION: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. CONCLUSION: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development.

Undergraduate nursing students' transformational learning during clinical training.

BACKGROUND: Undergraduate nursing students encounter patients at the end of life during their clinical training. They need to confront dying and death under supportive circumstances in order to be prepared for similar situations in their future career. AIM: To explore undergraduate nursing students' descriptions of caring situations with patients at the end of life during supervised clinical training. METHODS: A qualitative study using the critical incident technique was chosen. A total of 85 students wrote a short text about their experiences of caring for patients at the end of life during their clinical training. These critical incident reports were then analysed using deductive and inductive content analysis. FINDINGS: The theme 'students' transformational learning towards becoming a professional nurse during clinical training' summarises how students relate to patients and relatives, interpret the transition from life to death, feel when caring for a dead body and learn end-of-life caring actions from their supervisors. IMPLICATIONS: As a preparation for their future profession, students undergoing clinical training need to confront death and dying while supported by trained supervisors and must learn how to communicate about end-of-life issues and cope with emotional stress and grief.

A qualitative study of women's experiences of living with COPD.

AIM: To explore women's experiences of living with chronic obstructive pulmonary disease (COPD) at home. DESIGN: An explorative and descriptive qualitative design. METHODS: A consecutive sample of nine women with COPD living at home. Data were collected in 2014 using semi-structured interviews and analysed using a qualitative content analysis. RESULTS: Three main themes were identified: having a good life with COPD despite limitations; predictability and confidence in getting help; and the struggle to achieve a balance between insight and compliance with management of COPD. These women experienced limitations related to the traditional female role and felt unable to fulfil their own expectations. They experienced a good life despite limitations arising from adaptation and coping strategies. To feel safe, they needed to feel confident that they would receive the necessary help in case of exacerbation of their disease. To enhance compliance with COPD management, the women wanted education that provided specific suggestions.

Undergraduate nursing students' attitudes and preparedness toward caring for dying persons - A longitudinal study.

Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life care. A longitudinal study was performed with 117 nursing students at six universities in Sweden. The students completed the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) questionnaire at the beginning of first and second year, and at the end of third year of education. After education, the students completed questions about how prepared they felt by to perform end-of-life care. The total FATCOD increased from 126 to 132 during education. Five weeks' theoretical palliative care education significantly predicted positive changes in attitudes toward caring for dying patients. Students with five weeks' theoretical palliative care training felt more prepared and supported by the education to care for a dying patient than students with shorter education. A minority felt prepared to take care of a dead body or meet relatives.

Feeling lonely in an unfamiliar place: older people's experiences of life close to death in a nursing home.

AIM: The aim of the study was to deepen the understanding of how older persons living in a nursing home experience life close to death. BACKGROUND: A move to and a life in a nursing home while being close to death is a reality for many older people in Sweden. Being able to express thoughts and feelings about death has been described as both crucial for sustaining personhood as well as for establishing a meaningful existence at the end of life. Important are the experiences of older people living in nursing homes who are approaching death. METHOD: Six older people were interviewed on one to four occasions. A total of 16 interviews were conducted with the participants. An interpretative approach was chosen. FINDINGS: The main interpretation, Feeling lonely in an unfamiliar place, is based on three themes (i) Waiting for death, with the subthemes death as a release and thinking of oneself as dead; (ii) Subordinate oneself to values and norms of the staff, with the subthemes feeling offended and feeling trapped; and (iii) Keep the courage up. The older people's lives were characterised by feelings of aloneness in an unfamiliar place which contributed to a sense of existential loneliness. They experienced few opportunities to discuss their thoughts of life and death, including preparations for passing away. CONCLUSION AND IMPLICATION FOR PRACTICE: It is of importance for professionals to be able to meet older people as they are and respect them as human beings in their transitions, before, during and after the move to a nursing home. It is important to find ways to support older people's wellbeing and identity near death.

Nursing students' perceptions of caring for dying people, after one year in nursing school.

AIM: To describe Swedish nursing students' perceptions of caring for dying people after the first year of a three year in a nursing programme at three university nursing schools in Sweden. METHODS: Interviews (n=17) were undertaken with nursing students at the end of their first year. A phenomenographic approach was used to design and structure the analysis of the nursing students' perceptions. RESULTS: The analysis resulted in five categories: 1) from abstract to reality, 2) from scary to natural, 3) increased knowledge can give bad conscience, 4) time limits versus fear of end-of-life conversations, and 5) meeting with relatives. CONCLUSION: Nursing students need to be prepared both theoretically and within practice to encounter death and dying and to care for dying persons. By combining their theoretical knowledge of dying and death with their own encounters of death and dying people in practice, the students can be supported to develop an understanding of dying and death as a natural part of life rather than something frightening.