Effectiveness of integrated person-centered interventions for older people's care: Review of Swedish experiences and experts' perspective.

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.

Evaluating a targeted person-centred pain management intervention programme in lumbar spine surgery - a controlled segment-specific before-and-after interventional design.

BACKGROUND: Postoperative pain management in lumbar spine surgery care remains a challenge. The aim of this study was to evaluate the impact of a person-centred postoperative pain management intervention programme on lumbar spine surgery patients on postoperative pain, shared decision-making, and satisfaction with postoperative pain management. METHODS: The study was performed with a controlled before-and-after interventional design in an orthopaedic unit at a university hospital. Person-centred pain management for patients undergoing spine surgery was developed in co-creation by a multi-professional team and implemented throughout the care pathway. The usual care group (pre-intervention) served as a comparison to the intervention group. Pain intensity, shared decision-making in pain management, and patient satisfaction with results of pain management, served as patient-reported measures, collected using the International Pain Outcomes questionnaire and analysed using descriptive statistics. RESULTS: The intervention showed no benefit for patients' pain and satisfaction, while shared decision-making in pain management was significant lower in the intervention group than in the conventional group. The per-protocol analysis showed no significant differences between groups. CONCLUSION: The initial assumption of the study, that the implementation of a co-created structured person-centred care pathway would improve patient-reported outcomes, was not confirmed. The periodically low fidelity to the intervention due to organizational constraints (due to sub-optimal organizational conditions and managerial support) may have affected the results.

Post-diagnostic support for persons with young-onset dementia - a retrospective analysis based on data from the Swedish dementia registry SveDem.

BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor. CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.

From identifying patient safety risks to reporting patient complaints: A grounded theory study on patients' hospital experiences.

AIM: To explore how patients with hospital experience construct patient safety, from the identification of a patient safety risk to the decision to file a complaint. BACKGROUND: Patients play an important role in the prevention of adverse events in hospitals, but the ability of patients to act and influence their own safety is still challenged by multiple factors. Understanding how patients perceive risk and act to prevent harm may shed light on how to enhance patients' opportunities to participate in patient safety. DESIGN: The research design of this study is qualitative and exploratory. METHODS: Twelve participants who had experienced Swedish hospital care were interviewed between June 2022 and July 2023. The method of analysis was constructivist grounded theory, focusing on social processes. The COREQ checklist for qualitative research was followed. RESULTS: Four categories were constructed: (1) defining the boundary between one's own capacity and that of the hospital, (2) acting to minimize the impact on one's safety, (3) finding oneself in the hands of healthcare professionals and (4) exploring the boundaries between normality and abnormality of the situation. This process was captured in the core category of navigating the path of least suffering. This illustrated how the participants constructed meaning about patient safety risks and showed that they prevented multiple adverse events. CONCLUSIONS: Provided that participants were able to act independently, they avoided a multitude of adverse events. When they were dependent on healthcare professionals, their safety became more vulnerable. Failure to respond to the participants' concerns could lead to long-term suffering. RELEVANCE TO CLINICAL PRACTICE: By responding immediately to patients' concerns about their safety, healthcare professionals can help prevent avoidable suffering and exhaustive searching for someone in the healthcare system who will take their needs seriously. PATIENT CONTRIBUTION: A member check was performed with the help of one of the participants who read the findings to confirm familiarity.

Person-centered care as a tool to reduce behavioral and psychological symptoms in older adults with dementia living in residential care facilities.

Among older adults living in dementia residential care facilities (RCF) behavioral and psychological symptoms (BPSD) are common, affecting the quality of life (QOL) for the residents as well as being challenging for the staff. The person-centered care (PCC) approach addresses BPSD by giving trained staff mandate to focus on the relation and to adapt the encounter and the environment to increase QoL for the person with dementia. The aims with this study were to improve PCC, decrease BPSD and improve QOL among older persons with dementia living in RCFs, and to explore leaders' and healthcare staff's experiences of a PCC intervention. An educational program was implemented at two RCFs. Data was collected through questionnaires, from national quality registries and through focus group interviews. A significant increase in PCC and QOL at three months was seen. However, no significant difference in BPSD was seen. The interviews showed the importance of a trust-based relationship, and support from an active management to improve PCC, as well as changing old patterns and recognising competence among staff. Factors that affect implementation of PCC in RCF are discussed in the article.

Toward a Future Orientation: A Supportive Mental Health Facility Environment.

BACKGROUND: The provision of supportive environments is essential in clinical and environmental psychology. Mental health disorders are a major issue, and the experience of being at a mental health facility is affected by numerous factors related to the building's design. AIM: The aim of this study is to explore the expectations of a mental health facility planning group regarding the potential impact of a supportive design on patients' mental health and staff's therapeutic practices when planning and designing a new mental health facility. METHODS: The new mental health facility is a case study and data were collected through qualitative in-depth interviews with nine participants and analyzed using a thematic analysis. The participants came from a mental health facility planning group in a new mental health facility in Norway. RESULTS: The overall expectation of the new building was related to a future orientation to support patients' mental health and therapeutic practices. Three main themes were identified: toward a future orientation, supportive building design, and work environment. CONCLUSIONS: Supportive environments are expected to influence patients' mental health and staff's therapeutic practices, including providing options for novel treatment needs in contrast to older and more outdated buildings that are perceived as hindering appropriate treatment conditions.

Meals are more than nutrition for children with a malignant or non-malignant disorder with a gastrostomy tube: A qualitative study.

PURPOSE: To elucidate mealtime experiences of children hospitalized with a malignant or severe non-malignant disorder -and their parents-after a gastrostomy tube insertion. METHODS: A qualitative design involving a child-centred care approach was used. Parents of children aged 1-18 years old who had received a gastrostomy tube during treatment for a malignant or non-malignant disorder were included, as were the children themselves when aged 5-18 years old. Semi-structured interviews with 21 families were carried out and a thematic analysis performed. RESULTS: The findings were presented in four themes: changed meal conditions, a troublesome sensory dimension, aggravating obstacles and solving the unmanageable. Hospitalization involves challenges regarding environmental aspects, hospital food and side effects, contributing to impaired nutritional intake and aggravated mealtime situations. CONCLUSIONS: Hospital environment and hospital food have a profound impact on children's nutritional intake and mealtime situations. In addition, sensory aspects and side effects aggravate the child's motivation to eat, resulting in demanding meals. The families described a gastrostomy tube as a valuable strategy for improving mealtime situations.

Worry perception and its association with work conditions among healthcare workers during the first wave of the COVID-19 pandemic: a web-based multimethod survey at a university hospital in Sweden.

OBJECTIVES: In this study, we explored healthcare workers' (HCWs) worry perception and its association with their work situation during the first wave of the COVID-19 pandemic. DESIGN: A web-based multimethods survey including multiple choice and open-ended questions was used. SETTING: The study was conducted at a university hospital in Sweden. PARTICIPANTS: All HCWs who were working during the first wave of the COVID-19 pandemic in March-June 2020 were eligible. HCWs (n=6484, response rate=41%) from 69 departments fulfilled the study inclusion criteria and responded to the survey. Of them, we analysed data from the 3532 participants who replied to the open-ended questions (54% of the respondents). MAIN OUTCOMES MEASURES: Worry perception and its association with work conditions among HCWs. RESULTS: 29% (n=1822) and 35% (n=2235) of the responding HCWs experienced a daily or more than daily strong worry of being infected or infecting others with SARS-CoV-2. This finding could be further confirmed and explored with themes from the qualitative results: 'ambiguity of feeling safe and secure', 'being obliged to adapt to a new reality' and 'into the unknown'. The themes consisted of 6 main categories and 15 subcategories. The findings revealed that the two main drivers of worry perceived by HCWs were lack of personal protective equipment and fear of bringing the virus home to their families and friends. CONCLUSIONS: Worries of getting infected are common among HCWs during crises such as the COVID-19 pandemic. Several factors are raised that plausibly could minimise the negative effects of worry among HCWs. Thus, effective preventive work plans should be created, promoted and communicated in order to minimise the effects of such crises and support HCWs. By focusing on effective communication and preparedness, including access to relevant protective equipment and providing general support to HCWs, the work environment and patient care could be sustained during a crisis such as the COVID-19 pandemic.