To Örebro University

BACKGROUND: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden.

AIMS: To translate the PDI into Swedish, including cultural adaptation for clinical use.

METHODS: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs).

FINDINGS: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs.

CONCLUSION: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.

Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field.

Background: Palliative care in Sweden is not equal in terms of age, disease, and place of care. An essential value within palliative care is dignity, therefore healthcare emphasizing this value must be prioritized. However, older persons are concerned their dignity would not be considered and dignity interventions are rare. The overall aim of the thesis was to evaluate the Swedish Dignity Care Intervention (DCI-SWE) and its implementation within municipal palliative healthcare in order to conserve older persons’ dignity and quality of life. Methods: Qualitative and mixed methods were used. Data were collected with an integrative review (study I), focus group and individual interviews with community nurses (CNs) (studies II, IV), healthcare professionals and managers (study IV), individual interviews with older persons and relatives (study III), reflective diaries and field notes (studies II, IV), and questionnaires measuring older persons’ dignity-related distress and quality of life (study III). Data were analysed using thematic synthesis (study I), inductive content analysis(study II), inductive thematic analysis and comparative statistical analysis (study III), directed content analysis and descriptive statistical analysis (study IV). Results: Within dignity-conserving care, broad outcomes like dignity-related distress and quality of life have been used. However, communication outcomes should also be considered (study I). The DCISWE has clear benefits if it is used with background of who the older person is and with respect of personal needs (studies II - IV). The feasibility of the DCI-SWE depends on the healthcare organization’s engagement and capacity (studies II, IV). The DCI-SWE can support CNs in communicating with older persons (studies II, IV). However, more communication training is needed, and managers leadership is an important component (studies II, IV). The implementation intervention needs further development, and the use of a behavior change model may be beneficial. 

BACKGROUND: Loneliness is a public health concern and more than half of the residents in nursing homes experience lonliness. Risk factors are age and loss of close relatives.

PURPOSE: This study aimed to describe experiences of loneliness among older people living in an academic nursing home.

METHODS: Qualitative semi-structured interviews were conducted with ten older people and data analysed with systematic text condensation inspired by a phenomenological approach.

RESULTS: Three themes were identified: "Relatives and health care professionals matter"; "Acceptance and meaningful existence alleviate loneliness"; and "Challenges affecting the experience of loneliness". The older persons described themselves as lonely, but their experience of loneliness differed. They managed loneliness by adapting to it or getting used to it; some also chose to be alone. To add meaningfulness to their daily life, talking about memories and their past were appriciated. Personality traits and variations in functional ability were identified as barriers to social interactions.

CONCLUSIONS: Health care professionals can reduce negative experiences of loneliness by listening to nursing home residents, creating a meaningful daily life with individualized activities, and by encouraging contacts with close relatives. This can be a way of maintaining older persons' dignity and coping with the longing for what has been.

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.

ABSTRACT

Aim: The aim of this study was to describe child health nurses (CHN´s) experiences of meeting and helping the children exposed to child abuse in the home environment.

Background: CHN´s have the opportunity to come close to families and support them. This support may strengthen the parental role which can improve the child's environment and provide help to children exposed to child abuse.

Methods: A descriptive design with a qualitative approach (content analysis) was used. Six CHN´s were interviewed.

Findings: The experience of to obtain an insight into the child maltreatment was described. The CHN´s experienced their meeting with child abuse as a difficult task e.g. to take a decision to notify the social services and the CHN as the child´ s agent. The CHN´s also had experiences of both providing and receiving support.

Conclusions: CHN´s have a number of difficult tasks like meeting abused children. Through experience and support from colleges the CHN´s can reach a higher confidence in their own capacity of helping the children. This can affect how fast the CHN take the necessary decision to report to social services when a child is abused.

KEYWORDS: Child abuse, Care failure, Child health care, Child health nurse, Failure to thrive.

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.

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.

Background: Older persons’ dignity has to be respected to enhance their quality of life. If not, older persons’ will to live can disappear and their suffering grow. One intervention targeting older persons with palliative care needs, is the Swedish Dignity Care Intervention (DCI-SWE). It includes communication support for nurses with recommendations of evidence-based dignity care actions. 

Aim: To describe experiences about the DCI-SWE from home care nurses’ (HCNs) perspective.

Methods: Data were obtained from three focus group interviews, one individual interview and reflective diaries from HCNs (n=11). Data were analyzed with qualitative inductive content analysis.

Results: The DCI-SWE offered structure for HCNs while providing palliative care. It facilitated for HCNs to get an overview of older persons’ concerns and to discuss with the older person. Older persons were thus given an opportunity to be seen and to be listened to. However, there were some prerequisites for introducing DCI-SWE. It facilitated if older persons were informed about their illness, if HCNs had the ability to hold conversations, and had space for uninterrupted meetings with the person. Some HCNs found it challenging to discuss deeper aspects, for example about death, but DCI-SWE was also found to develop some of the HCNs communication skills. Resources supporting the use of DCI-SWE within the organization were managers’ leadership, sufficient time and staff. HCNs also requested time to reflect while using DCI-SWE in their daily practice.

Conclusion: DCI-SWE can contribute to communication within general palliative home care, and be a valuable support for HCNs to confirm older persons. DCI-SWE can also assist the care planning of the older person, and provide HCNs with guidance for dignity-conserving care. 

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.

Bakgrund: Utvärdering av palliativ vård i Sverige har visat att vården är ojämlik och att äldre personer får sämre palliativ vård. För att främja äldre personers livskvalitet den sista tiden i livet är bevarande av värdighet grundläggande. Förlust av värdighet kan innebära förtvivlan, en känsla av att vara en börda för andra och en önskan om att få dö, vanliga upplevelser hos sköra äldre personer. Konkreta arbetssätt behöver därför utvecklas för att bevara äldre personers värdighet, vilket idag saknas inom svensk palliativ vård. En värdighetsbevarande intervention (DCI) har utvecklats och prövats i Skottland och Irland. Interventionen består av ett formulär för kartläggning av värdighet, reflekterande frågor samt evidensbaserade vårdhandlingar.

Syfte: Syftet var att utveckla och anpassa DCI till en svensk kontext.

Metod: Utveckling och kulturanpassning skedde genom 1) översättning och anpassning av formuläret till svensk kontext via en expertpanel och via kognitiva intervjuer med äldre personer 2) identifiering av värdighetsbevarande vårdhandlingar relevanta för en svensk kontext, utifrån en litteraturgenomgång samt via intervjuer med äldre personer, deras närstående och vårdpersonal.

Resultat: Mindre revideringar av formuläret genomfördes, men överlag accepterades det av de äldre personerna. Identifierade värdighetsbevarande vårdhandlingar speglade mestadels de redan angivna i originalversionen DCI. Dock framkom fler vårdhandlingar än i originalet vid några av kategorierna i den svenska DCI (DCI-SWE) som t.ex. ”socialt stöd”, medan det framkom färre vårdhandlingar än originalet vid t.ex. ”dödens följder för andra”. I DCI-SWE konkretiserades generella vårdhandlingar som t.ex. att lyssna och visa respekt, till skillnad från originalet.

Konklusion: DCI-SWE har möjlighet att främja sköra äldre personers värdighet, och prövas nu av sjuksköterskor i en genomförbarhetsstudie inom hemsjukvården.

Background : In end of life, the older persons´ experiences of dignity can be affected due to serious illness and life changes, derived from physical, psychological, social and existential dimension. Loss of dignity impact the persons´ will to live. The Dignity Care Intervention (DCI) was developed and tested in Scotland and Ireland, to enhance dignity of older persons with palliative care needs, by nurses in municipality care. DCI consists a patient dignity inventory, reflective questions and examples of evidence-based care actions.

The aim was to develop and adapt the DCI to a Swedish context.

Methods: The patient dignity inventory was overall accepted by older persons in home care, however some changes in the wording were performed. The Swedish care actions reflected mostly earlier care actions described in the original version. However some more care actions derived in some of the categories in the Swedish DCI (DCI-SWE) e.g. “social support”, and some less care actions derived for example in the category “aftermath concerns”.  In DCI-SWE general care actions like e.g. to show respect were concretized unlike the original DCI.

Conclusions: The DCI-SWE has prospects to enhance older persons´ dignity, and is now tested in a feasibility study by twelve nurses in home care.

Background: The Dignity Care Intervention (DCI) was developed in Scotland by Johnston and co-workers for nurses in municipality care, to enhance dignity in persons with palliative care needs. DCI includes a questionnaire, examples of reflective questions and suggests care actions. DCI has been tested in Ireland, and is now adapted to Swedish.

Objective: To translate and adapt the DCI to a Swedish palliative context.

Method: The questionnaire was translated and adapted into Swedish and reviewed by an expert group, before validated in cognitive interviews (N=7) with older persons. To update evidence concerning care actions from a Swedish context, a review of Swedish research literature and interviews with older persons, relatives and health care professionals were carried out. This gathered knowledge has been integrated into the Swedish DCI (DCI-SWE) and a feasibility study now takes place in one municipality in home care, Sweden. Included nurses got repeated information and participated in a shorter DCI-education, and will use the DCI in their everyday work for three months. Follow-up interviews will be conducted and analysed with qualitative content analysis.

Results: The Swedish version of the questionnaire was experienced relevant for older persons, and both the Swedish review and the interviews gave culturally relevant proposals about dignity care actions. Further, a feasibility study will contribute to the ongoing development of the Swedish DCI-version.

Conclusion and implication for practice: Implementing DCI in Sweden can enhance dignity in persons with palliative care needs and facilitate for a person-centered care.

Abstract number: P1-212 Abstract type: Poster Adapting the Dignity Care Intervention to a Swedish Context WerkanderHarstäde C. 1 , Blomberg K. 2 , Söderman A. 2 ,ÖstlundU. 1 1 Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Kalmar, Sweden, 2 Örebro University, School of Health and Medical Sciences, Örebro, Sweden Presenting author email address: ulrika.ostlund@lnu.se Aims: The Dignity Care Intervention (DCI) was developed in Scotland to be used by community nurses caring for patients with palliative care needs, with an aim to conserve patients’sense of dignity. The DCI includesthe Patient Dignity Inventory (PDI) that is used to identify dignity related concerns. In a dialogue with the patient, the nurse discussidentified concerns and waysto addressthem by using reflective questions and evidence based care actions provided in the DCI. The DCI is now translated and adapted for implementation in Swedish palliative care. Design, method, and approach: DCI is based on Chochinovs model of dignity and the PDI is one key component. Two researchersindependently translated the model and the inventory from English to Swedish and the research group examined the translationstogether with the original versions. An expert review focusing on items and response alternatives was accomplished followed by cognitive interviews with patients answering the preliminary Swedish version of the PDI. Evidence based care actions were updated with Swedish publicationssuch astheses, clinical guidelines and governmental publications. Results: Swedish versions of the model of dignity and the PDI were produced, the process of translation and adaptation added clarity and consistency. From the review of Swedish publications, care actions were adapted and updated. Conclusions: The focus has been on achieving cultural relevance which might have affected equivalence to the original model of dignity and the PDI. To get local context evidence for care actions, focus group interviews will be conducted with nurses, physicians, patients and family members. After the process of adapting the DCI it will be implemented and evaluated in clinicalsettings. Two clinicalsettings have agreed to collaborate in this phase. Implementing the culturally adapted DCI will be a way for nursesto provide evidence based and person centred palliative 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.