Search

Background: Within the contemporary policy turn towards co-production and co-research in Sweden, older people, practitioners and researchers alike have expressed uncertainty about how to undertake co-research. Moreover, scepticism persists about the merits and contributions of co-research and co-production to research and service development. In this paper, we aim to describe a co-research model developed with older care-experienced lay co-researchers and explore the utility of our model's outcomes to social care research and practice., Method: In a Participatory Action Research project, we established a team of three co-researchers by professional experience and eight lay co-researchers by lived experience who were over age 75. Our team undertook a complete study cycle from inception and funding through to knowledge exchange and dissemination. Our process lasted one year and comprised three phases: the group alone establishing collective knowledge, testing knowledge in peer interviews with acquaintances, exchanging knowledge in events with multi-sector actors. We generated and analysed data concurrently in fortnightly workshops and round-table meetings using procedures inspired by framework analysis to produce themes illustrated by vignettes., Findings: We highlight our co-research model's utility to social research, policy and practice under three themes. Expressly, how our approach (1) reaches and engages older people who are isolated at home, (2) generates out-of-the box thinking and innovative solutions for service development and research, (3) recognizes and benefits from older people's authentic experience and knowledge. We critically reflect upon these three themes and the conditions that lead towards or away from the adoption of key co-research principles., Conclusions: Public services and research and development units working in the interests of older people can take inspiration from our co-research model when seeking to meet the challenges brought by new reforms towards closer community involvement. Despite messiness in the process, integrating and embedding principled co-research and co-production can bring clarity and structure to the issues that matter most to older people, and draw organisations closer to the communities they serve., Competing Interests: Declarations Ethics approval and consent to participate The Stockholm Regional Ethical Committee granted permission for this study (Diary numbers 2021–04645, 2022-02744-02). Further details provided in the Methods section under the subheading ‘Ethics’. Consent for publication Not applicable. Competing interests The Stockholm Gerontology Research Centre’s board comprises elected politicians appointed by Stockholm’s regional and district councils. Beyond this contextual detail, the authors have no competing interests to declare., (© 2024. The Author(s).)

The death literacy index (DLI) was developed in Australia to measure death literacy, a set of experience-based knowledge needed to understand and act on end-of-life (EOL) care options but has not yet been validated outside its original context. The aim of this study was to develop a culturally adapted Swedish-language version of the DLI, the DLI-S, and assess sources of evidence for its validity in a Swedish context. The study involved a multi-step process of translation and cultural adaptation and two validation phases: examining first content and response process validity through expert review (n = 10) and cognitive interviews (n = 10); and second, internal structure validity of DLI-S data collected from an online cross-sectional survey (n = 503). The psychometric evaluation involved analysis of descriptive statistics on item and scale-level, internal consistency and test-retest reliability, and confirmatory factor analysis. During translation and adaptation, changes were made to adjust items to the Swedish context. Additional adjustments were made following findings from the expert review and cognitive interviews. The content validity index exceeded recommended thresholds (S-CVIAve = 0.926). The psychometric evaluation provided support for DLI-S' validity. The hypothesized six-factor model showed good fit (χ2 = 1107.631 p<0.001, CFI = 0.993, TLI = 0.993, RMSEA = 0.064, SRMR = 0.054). High internal consistency reliability was demonstrated for the overall scale (Cronbach's α = 0.94) and each sub-scale (α 0.81-0.92). Test-retest reliability was acceptable, ICC ranging between 0.66-0.85. Through a comprehensive assessment of several sources of evidence, we show that the DLI-S demonstrates satisfactory validity and acceptability to measure death literacy in the Swedish context. There are, however, indications that the sub-scales measuring community capacity perform worse in comparison to other sca and may function differently in Sweden than in the original context. The DLI-S has potential to contribute to research on community-based EOL interventions., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Johansson et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Objectives: Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life-related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and sociodemographic, health, and experience variables., Methods: A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions., Results: A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F (22, 477) = 14.75. The sociodemographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy., Significance of Results: This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.

The aim of this study was to describe and compare family members' experiences of approach in encounters with healthcare professionals and possible feelings of alienation in the professional care within four care contexts: the care of older people, psychiatric care, palliative care and diabetes care. The design was an explorative cross-sectional survey study. Data were collected in Sweden using the Family Involvement and Alienation Questionnaire-Revised (FIAQ-R). It measures family members' experiences of the healthcare professionals' approach and the family members' feeling of alienation from the provision of professional care. A total of 1047 questionnaires were distributed to family members using convenient sampling method, of which 294 were included. Data were analysed using rank-based, non-parametric statistical methods. The results indicated that most respondents experienced a positive actual approach from the healthcare professionals. Many participants rated the importance of approach at a higher level than their actual experience. Participants in the context of diabetes care reported a more negative actual approach from the healthcare professionals than did participants in the other contexts and considered the healthcare professionals' approach towards them as being less important. The results for the entire group indicated that the participants felt a low level of alienation from the professional care. Participants in the context of the care of older people reported significantly lower level of feeling of being alienated than did participants in the contexts of psychiatric care and diabetes care. The differences between participants in diabetes care and other care contexts can possibly be explained by a more fully implemented self-care approach among the patients in diabetes care than in the other care contexts. Even though the results are quite positive, it is still important that nurses consider a family-centred approach to better adapt to the needs of both the family members and the patients., (© 2022 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background/objectives: Call-bells are often taken-for-granted systems to heighten safety. In joint discussions among residential care home (RCH) residents, their family members, and staff, issues related to call-bell use in everyday life and work were repeatedly raised. In this article, we explore these experience-based perspectives, addressing several key questions important for call-bell use and communication., Research Design/methods: We inductively analyzed a series of individual interviews and group discussions with 44 individuals at two units of the same Swedish RCH, conducted as part of a participatory action research project to strengthen supportive end-of-life environments., Results: While the call-bell was a central part of RCH communication, we found: fragmented understanding about how the call bell functioned among all participants; many residents lacked the physical and cognitive competencies demanded for call-bell use; tensions between use of the call-bell for social/existential communication versus purely discrete tasks; and that a call-bell system assuming room-bound residents exacerbated issues related to varied response times, lack of feedback mechanisms, and pressured work situations., Discussion and Implications: Investigation of the call-bell system provides an empirical example of how complex relationships among stakeholders are played out in concrete situations. Tensions between different logics of care, and between clock and embodied time become evident., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Proactive conversations about individual preferences between residents, relatives, and staff can support person-centred, value-concordant end-of-life (EOL) care. Nevertheless, prevalence of such conversations is still low in residential care homes (RCHs), often relating to staff's perceived lack of skills and confidence. Using tools may help staff to facilitate EOL conversations. While many EOL-specific tools are script-based and focus on identifying and documenting treatment priorities, the DöBra card tool is developed to stimulate reflection and conversation about EOL care values and preferences. In this study, we explore staff's experiences of use, usability, and perceived impact of the DöBra cards in supporting discussion about EOL care in RCH settings., Methods: This qualitative study was based on data from two participatory action research processes in which RCH staff tested and evaluated use of DöBra cards in EOL conversations. Data comprise 6 interviews and 8 group meetings with a total of 13 participants from 7 facilities. Qualitative content analysis was performed to identify key concepts in relation to use, usability, and impact of the DöBra cards in RCH practice., Results: Based on participants' experiences of using the DöBra cards as an EOL conversation tool in RCHs, we identified three main categories in relation to its usefulness. Outcomes of using the cards (1) included the outlining of content of conversations and supporting connection and development of rapport. Perceived impact (2) related to enabling openings for future communication and aligning care goals between stakeholders. Use and usability of the cards (3) were influenced by supporting and limiting factors on the personal and contextual level., Conclusions: This study demonstrates how the DöBra cards was found to be useful by staff for facilitating conversations about EOL values, influencing both the content of discussion and interactions between those present. The tool encouraged reflection and interaction, which staff perceived as potentially helpful in building preparedness for future care-decision making. The combination of providing a shared framework and being adaptable in use appeared to be key features for the DöBra cards usability in the RCH setting., (© 2022. The Author(s).)

Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout workshop series based on reflection and knowledge exchange to promote EoL communication in RCHs. We identified three overall continuums of change: EoL conversations became perceived as more feasible and valuable; conceptualizations of quality EoL care shifted from being generalizable to acknowledging individual variation; and staff's role in facilitating EoL communication as a prerequisite for care decision-making was emphasized. Two mechanisms influenced changes: cognitively and emotionally approaching one's own mortality and shifting perspectives of EoL care. This study adds nuance and details about changes in staff reasoning, and the mechanisms that underlie them, which are important aspects to consider in future EoL competence-building initiatives.

Aims and Objectives: To explore palliative care nurses' work experiences caring for patients at the end of life in private homes., Background: The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes., Design: Interpretative descriptive., Methods: Participant-generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist., Results: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self-care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and using transitions between homes to reflect, recuperate and prepare., Conclusion: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high-quality care., Relevance to Clinical Practice: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care., (© 2019 John Wiley & Sons Ltd.)

Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person., Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings., Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times., Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations., (© 2018 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL.)

Aim: To adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability., Background: Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed., Design: A psychometric evaluation study, with a cross-sectional design., Method: The content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used., Results: The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability., Conclusion: The study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care., (© 2018 John Wiley & Sons Ltd.)

Background: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed., Objective: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals., Design: This is a national register study., Setting/subjects: The study included 3981 patients with diagnosed heart failure as the underlying cause of death., Measurements: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies., Results: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory., Conclusion: The results indicate inadequate palliative care for patients with heart failure during their last week of life.

Purpose: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care., Methods: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles., Results: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support., Conclusions: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Objective: Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care., Method: Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description., Results: Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals., Significance of Results: Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.

The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: "what is this picture of?" and "why is it meaningful to you?" The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development., (Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.)