To Örebro University

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.

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.

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.

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: 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.