The five aspects mealtime environment observation instrument for assessing mealtime environments in nursing homes: Development and validation.

AIMS AND OBJECTIVES: To further develop and validate the Mealtime instrument, an observational instrument for assessing mealtime environments in nursing homes originating from the theoretical framework: Five Aspects Meal Model (FAMM). METHODOLOGICAL DESIGN AND JUSTIFICATION: A mealtime experience is significant for a sense of well-being. In nursing homes, residents' personal preferences, combined with their diagnoses and different stages of illness, influence their mealtime experience and provide a complexity that has been found difficult to assess. Using FAMM, a theoretical framework as its base, this study, attempts to look at different parts of the mealtime environment. FAMM structures the mealtime environment in to five aspects: room, meeting, product, management control system and atmosphere. This study's design includes instrument development and validation. ETHICAL ISSUES AND APPROVAL: This study has been approved by the Swedish Ethical Review Authority (dnr 2019-05477). DESIGN: Methodological study. RESEARCH METHOD: An existing instrument, the Mealtime instrument with FAMM as a theoretical framework, was used as a foundation for the development of the Five Aspects Mealtime Environment Observation Instrument (FAME-OI). Content validity index (CVI) was used to validate FAME-OI. RESULTS: FAME-OI's item-CVI, scale-CVI and modified Kappa displayed high validity. Changes were made in its structure and phrasing. These developments resulted in having a distinct structure in FAME-OI, in reference to FAMM. CONCLUSION: FAME-OI is applicable for clinical use in nursing homes and in research; however, adjustments may be needed before its use in other health care facilities.

Grasping a new approach to older persons' dignity: A process evaluation of the Swedish Dignity Care Intervention in municipal palliative care.

AIM: Dignity in older persons is a goal of palliative care. This study aimed to perform a process evaluation of the Swedish Dignity Care Intervention (DCI-SWE) in municipal palliative care in Sweden, focusing on implementation, context, and mechanism of impact. METHODS: This study had a process evaluation design. The Knowledge to Action framework supported the implementation of the DCI-SWE. The intervention was used by community nurses with older persons (n = 18) in home healthcare and nursing homes. Data were collected by focus groups- and individual interviews with community nurses (n = 11), health care professionals (n = 5) and managers (n = 5), reflective diaries, and field notes. RESULTS: Grasping the DCI-SWE was challenging for some community nurses. Enhanced communication training and increased engagement from managers were requested. However, the DCI-SWE was perceived to enhance professional pride in nursing. In terms of fidelity, dose and reach the project was not fully achieved. Regarding mechanism of impact the DCI-SWE contributes to address older persons' loneliness and existential life issues, as it put conversations with older persons on community nurses' agenda. CONCLUSIONS: The DCI-SWE provided opportunities to maintain older persons' dignity and quality of life. However, with refinements of design and the DCI-SWE, the sustainability in the context may increase.

Exposed - a semantic concept analysis of its origin, meaning change over time and its relevance for caring science.

PURPOSE: A patient is vulnerable and exposed due to illness, relies on and surrender to other people. In caring this means a special dependency. The aim of this study was to describe the origin of the concept 'exposed', to elucidate how the definition of this term has changed over time, and to outline its relevance in caring science. METHOD: A semantic concept analysis in two phases was conducted. RESULTS: The findings show that over time, the degree of binding of the following synonyms has become stronger; unprotected/defenseless, naked/bare, pressed/jostled and unsafe/unprotected and can easily be transferred to a clinical nursing context. CONCLUSIONS: This study provides a deeper understanding of the concept 'exposed' semantically. Being exposed is a profound experience for patients who need to be seen as the person they really are. A life-world led care has an existential power that can support professionals, strengthen patients' health processes, and alleviate the patient's suffering.

Valuing the individual - evaluating the Dignity Care Intervention.

BACKGROUND: Palliative care needs in older persons can endanger their dignity. To provide dignity-conserving care to older persons, the Swedish Dignity Care Intervention (DCI-SWE) can be used. The DCI-SWE is built on Chochinov's dignity model and the original version, developed and tested in UK and Scotland. AIM: To describe older persons' and their relatives' experiences of dignity and dignity-conserving care when using the DCI-SWE in municipal health care. RESEARCH DESIGN: A mixed method study with convergent parallel design. PARTICIPANTS AND RESEARCH CONTEXT: The DCI-SWE was used and evaluated in a Swedish municipality health care context. Older persons' (n=17) dignity-related distress and quality of life were assessed after the intervention. Interviews with older persons (n=10) and their relatives (n=8) were analysed using thematic analysis. ETHICAL CONSIDERATIONS: The study followed the World Medical Association Declaration of Helsinki. Ethical approval was obtained from the Regional Ethical Review Board in Uppsala, Sweden (Reg No. 2014/312) and the National Swedish Ethical Review Authority (Reg. No. Ö 10-2019). Informed consent was collected from older persons and their relatives. FINDINGS: The older persons' dignity-related distress did not significantly change over time (p = 0.44) neither was their overall quality of life (p = .64). Only psychological quality of life was decreased significantly (p = 0.01). The older persons and their relatives emphasized the importance of valuing the individual. CONCLUSIONS: The DCI-SWE provides a forum to talk about dignity issues, but relevant competence, continuity and resources are needed. Psychological care actions and health care professionals' communication skills training are important. To fully evaluate, the DCI-SWE a larger sample and validated instruments are necessary.

The ways specialist nursing students understand the work in the ambulance service - a national Swedish phenomenographic study.

OBJECTIVE: To explore and describe the ways specialist ambulance nursing (SAN) students understand the work in the ambulance service. DESIGN, SAMPLE, AND MEASUREMENTS: An explorative descriptive design was carried out through individual interviews with 16 SAN students from all parts of Sweden and analysed in accordance with the phenomenographic tradition. FINDINGS: Five different ways of understanding the work were described and each was assigned a metaphor; The medical role; The practical role; The patient-oriented role; The commanding role; and The comprehensive role. Several aspects concerning personal, organizational, and situational conditions affecting the understanding and the distribution of these roles in the specific care assignment were identified and presented in a hierarchical model of the outcome space. CONCLUSIONS: This study contributes with a new perspective on supporting role clarity for registered nurses (RN) working in the ambulance service (AS). Specialization and experiential learning are needed to support an understanding of all aspects of the work in order to develop a professional competence aligned with the challenges faced in the AS. The development of expertise in the AS needs a contextualized understanding rooted in a theoretical framework that addresses a holistic perspective towards patients' needs.

Nurse preceptors' experience-based strategies for supporting learning in the ambulance service-A combined focus group and dyadic interview study.

Ambulance service organizations worldwide report about an expanding professional role, responsibilities and scope of practice for ambulance clinicians, resulting in discussions concerning educational design and desired professional competencies. To face the contemporary demands in ambulance care, non-technical skills are advocated and clinical practice considered fundamental for the development of these abilities. However, there is very little research concerning educational strategies for supporting the desired competencies for novice registered nurses in the ambulance service. AIM: To describe and explore nurse preceptors' experience-based strategies for supporting registered nurses learning in the ambulance service. DESIGN: The study had an inductive and data-driven approach, guided by phenomenological epistemology. METHODS: Twenty-seven Swedish nurse preceptors were interviewed in three focus groups and four dyadic interviews between October 2019 and April 2020. The data were analysed with reflexive thematic analysis. FINDINGS: The nurse preceptors use several learning strategies, focusing on a socialization process and a clinical competence process, intertwined during clinical practice to support the development of a situated professional identity and a clinical decision-making competence. Supportive structures facilitate a progressive learning strategy when addressing desired skills and cognitive abilities in teamwork processes and clinical judgement. CONCLUSION: Supporting novice clinicians, prior to and during clinical practice in the ambulance service, should include medical assessment skills, situation awareness and processes for effective teamwork. Further, novice clinicians need to develop complex cognitive abilities to deal with the dynamic nature of decision-making in ambulance care. IMPACT: The study findings show contextual strategies, previously not described and desired competencies when supporting learning for registered nurses in the ambulance service. A theoretical grounding in episteme, techne, phronesis and situation awareness may guide educators at universities, managers in the ambulance service, preceptors and novice clinicians worldwide in the planning and performance of teaching and learning in the ambulance service.

Community nurses' experiences of the Swedish Dignity Care Intervention for older persons with palliative care needs - A qualitative feasibility study in municipal home health care.

OBJECTIVES: The Swedish Dignity Care Intervention (DCI-SWE) is an intervention for people with palliative care needs to enhance their dignity. The original DCI was developed in Scotland, where it was tested by nurses in municipal care. In this study, the DCI has been tested for the first time in a Swedish home health care context. The aim was to describe experiences of the DCI-SWE from the perspectives of community nurses (CNs). METHODS: This was a feasibility study with a qualitative design. Three focus group interviews and one individual interview were performed with CNs (n = 11). Reflective diaries and field notes were written by the CNs and researchers, respectively. Data were analysed using inductive content analysis. RESULTS: Two main categories and six subcategories were identified. The first main category, 'Practising the palliative approach while responding to palliative care needs', consisted of the subcategories: gives structure while providing palliative care; gives older people opportunities to be confirmed; and responding to existential and sensitive needs. The second main category, 'Aspects influencing the use of the DCI-SWE' had two subcategories about facilitators and barriers to the use of the DCI-SWE, and another about how to establish the DCI-SWE in the context of home health care. CONCLUSION: The DCI-SWE offers CNs an overview of older people's concerns while providing palliative care, and gives the older people opportunities to be listened to. Essential prerequisites for using the DCI-SWE in municipal home health care are that CNs are comfortable holding conversations and are given time and space for these by the organisation. Other aspects facilitating the use of the DCI-SWE are managers' engagement and support, continuing training for CNs and CNs' opportunities for reflection.

Space and place for health and care.

Purpose: This discussion paper aims to contribute to a greater understanding of the state of the art of research engaged with conceptual matters of space and place for health and care. Method: The authors, who represent a variety of academic disciplines, discuss and demonstrate the conceptual recognition of space and place in research in health and caring sciences building upon own work and experience. Results: To explore the concepts of space and place for health and care is a research pursuit of utmost importance, and should be made through transdisciplinary research collaborations, whereby spatial theories from various disciplines could be communicated to cultivate truly novel and well-informed research. Furthermore, engaging with relational and topological perceptions of space and place poses methodological challenges to overcome in future research on health and care. Conclusions: We argue that there is a need for accelerating spatially informed research on health and care that is informed by current theories and perspectives on space and place, and transdisciplinary research collaborations are a means to achieving this.

Constructing stability - a classic grounded theory of next-of-kin in palliative cancer care.

BACKGROUND: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person's experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care. METHOD: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour. RESULTS: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources. CONCLUSIONS: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals' awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.

Dignity-conserving care for persons with palliative care needs - identifying outcomes studied in research: An integrative review.

OBJECTIVES: With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized. METHODS: An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis. RESULTS: Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of "Performance, symptoms and emotional concerns" and "End-of-life and existential aspects". Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as "Dignity-related distress" and "Quality of life" were common. However, the results lacked concrete communication outcomes. SIGNIFICANCE OF RESULTS: The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Dignity in life and care: the perspectives of Swedish patients in a palliative care context.

BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored. AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context. METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis. RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'. CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.

How to conserve dignity in palliative care: suggestions from older patients, significant others, and healthcare professionals in Swedish municipal care.

BACKGROUND: An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden. METHODS: This study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9) and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework. RESULTS: With the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity. CONCLUSIONS: As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.

Guilt and shame--a semantic concept analysis of two concepts related to palliative care.

BACKGROUND: The theoretical viewpoint of the study was based on the fundamental motive in caring science, the suffering person and his/her health and life situation, which according to the philosophy of palliative care also includes the next of kin. The latter often wish to participate in the care of their loved ones and it is thus important for them to be able to make decisions that can generate a meaningful participation. Unfulfilled obligations or wrong decisions, concerning their dying relative, can result in experiences of guilt and shame in relation to the care of the loved one. A semantic concept analysis can provide a deeper understanding of these concepts and create a deeper insight into what the concepts mean for the individual. AIM: The aim of the study was to elucidate the meaning of and the distinction between the concepts of guilt and shame. METHODS: Semantic concept analysis based on Koort and Eriksson. FINDINGS: The findings show that guilt and shame are two separate concepts. Guilt contains meaning dimensions of being the cause of and sin. Shame contains meaning dimensions of something that gives rise to shame and ability to experience shame. The synonyms for each concept do not overlap each other. CONCLUSION: The semantic analysis creates an understanding of the concepts ontologically and provides a basis for theoretical, contextual and clinical understanding and development.