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.

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.

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.

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.

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.

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.

Fast track to stroke unit for patients not eligible for acute intervention, a case-control register study on 1066 patients.

Stroke patients not eligible for acute intervention often have low priority and may spend long time at the emergency department (ED) waiting for admission. The aim of this retrospective case-control register study was to evaluate outcomes for such "low priority" stroke patients who were transported via Fast Track directly to the stroke unit, according to pre-specified criteria by emergency medical service (EMS). The outcomes of Fast Track patients, transported directly to stroke unit (cases) were compared with the outcomes of patients who fulfilled these critera for Fast Track, but instead were transported to the ED (controls). In all, 557 cases and 509 controls were identified. The latter spent a mean time of 237 min in the ED before admission. The 90-day mortality rate was 12.9% for cases and 14.7% for controls (n.s.). None of the secondary outcome events differed significantly between the groups: 28-day mortality rate; death rate during hospitalisation; proportion of pneumonias, falls or pressure ulcers; or health-related outcomes according to the EQ-5D-5L questionnaire. These findings indicates that the Fast Track to the stroke unit by an EMS is safe for selected stroke patients and could avoid non-valuable time in the ED.

Patient safety culture in home care settings in Sweden: a cross-sectional survey among home care professionals.

BACKGROUND: The connection between a weak patient safety culture and adverse patient events is well known, but although most long-term care is provided outside of hospitals, the focus of patient safety culture is most commonly on inpatient care. In Sweden, more than a third of people who receive care at home have been affected by adverse events, with the majority judged to be preventable. The aim of this study was to investigate the patient safety culture among care professionals working in care at home with older people. METHODS: This cross-sectional study used a purposive sample of 66 municipal care workers, health care professionals, and rehabilitation staff from five municipal care units in two districts in western Sweden who provided care at home for older people and had been employed for at least six months. The participants completed the Hospital Survey on Patient Safety Culture (HSOPSC) self-report questionnaire, which assessed aspects of patient safety culture-norms, beliefs, and attitudes. Logistic regression analysis was used to test how the global ratings of Patient safety grade in the care units and Reporting of patient safety events were related to the dimensions of safety culture according to the staff's professions and years of work experience. RESULTS: The most positively rated safety culture dimension was Teamwork within care units (82%), which indicates good cooperation with the closest co-workers. The least positively rated dimensions were Handoffs and transitions among care units (37%) and Management support (37%), which indicate weaknesses in the exchange of patient information across care units and limited support from top-level managers. The global rating of Patient safety grade was associated with Communication openness and Management support (p < 0.01 and p = 0.03, respectively). Staff with less work experience evaluated the Patient safety grade higher than those with more work experience. CONCLUSIONS: This study suggests that improvements are needed in care transitions and in support from top-level managers and that awareness of patient safety should be improved in staff with less work experience. The results also highlight that an open communication climate within the care unit is important for patient safety.

Working conditions for healthcare workers at a Swedish university hospital infectious disease department during the COVID-19 pandemic: barriers and facilitators to maintaining employee wellbeing.

Background: Healthcare workers (HCWs) at infectious disease departments have held the frontline during the COVID-19 pandemic. This study aimed to identify barriers and facilitators to maintaining the employees' wellbeing that may be used to increase preparedness for future pandemics within ID Departments. Methods: In September 2020, a web-based survey on demographics and work environment was distributed to all HCWs at the Infectious Disease Department at Sahlgrenska University Hospital. Results were compared with a pre-COVID-19 survey from October 2019. A quantitative analysis of the overall effects of the pandemic on the working conditions of HCWs was conducted; in addition, a qualitative content analysis of open-ended responses was performed. Results: In total, 222 and 149 HCWs completed the pre-COVID-19 and COVID-19 surveys (84 and 54% response rate), respectively. Overall, we found significant changes regarding increased workload, lack of emotional support in stressful work situations, and inability to recover after shifts. These factors correlated both with younger age and concern of becoming infected. The open-ended answers (n = 103, 69%) revealed five generic categories (Workload; Organizational support; Worry and ethical stress; Capability; and Cooperation and unity) with a total of 14 identified factors representing plausible individual and organizational-level barriers or facilitators to sustained employee wellbeing. Conclusion: Younger HCWs as well as those expressing worries about contracting the infection were found to be particularly affected during the COVID-19 pandemic and these groups may require additional support in future outbreaks. Factors both increasing and decreasing the pandemic-induced negative health consequences for HCWs were identified; this knowledge may be utilized in the future.

Struggling for access to appropriate healthcare services: A qualitative content analysis of patient complaints.

AIM: This study aimed to describe circumstances concerning access for patients and relatives to take part in patient health and safety in a hospital setting. DESIGN: This study used a qualitative descriptive design and was conducted at a Swedish university hospital. METHOD: The 79 complaints reported by patients and relatives included in this study were registered between January 2017 and June 2019. These complaints were classified as concerning access to healthcare services. Data were analysed using qualitative content analysis. RESULTS: The overarching theme, struggling for access as a human being in the healthcare system, encompassed three themes describing patients' and relatives' needs. The three themes were (1) navigating through the healthcare organization, (2) making sense of self and what is going on and (3) being acknowledged as having needs. CONCLUSION: Patients and relatives continuously participate in various ways in healthcare to promote health and prevent patient harm. Our findings contribute important knowledge about the meaning of access from a broad healthcare system perspective. Access was restricted in terms of appropriateness in how patients' needs were met. This restriction of access risked the deterioration of patient health and safety. IMPACT: Patients and relatives play an active part in patient health and safety, although their attempts are sometimes hindered. Restrictions in the appropriateness of access prevented patients and relatives from taking part in patient health and safety, which appeared to mean that they had to adapt and expend effort to the point that it negatively affected their health and everyday life. These findings concern all patients, relatives and healthcare professionals in hospital-associated settings. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

The Perceived Support From Light and Color Before and After an Evidence-Based Design Intervention in an Emergency Department Environment: A Quasi-Experimental Study.

AIM: To evaluate patients' and family members' perceived support from light and color before, compared with after an evidence-based design (EBD) intervention at an emergency department (ED) using a validated instrument-the Light and Color Questionnaire (LCQ). BACKGROUND: EDs offer acute care day and night. Thus, a supportive physical environment where light and color is crucial for how the milieu is experienced is vital. Research is limited on how care settings are perceived as supportive by users. METHODS: Quasi-experimental evaluation of the refurbishing and remodeling of an ED by an expert group of nurse managers, nursing staff, nursing researchers and architects in south Sweden. LCQ includes dimensions "maximizing awareness and orientation," "maximizing safety and security," "supporting functional abilities," "providing privacy," "opportunities for personal control" (not for LCQ-Color), and "regulation and quality of stimulation." LCQ was analyzed and compared in 400 surveys from 100 patients and 100 family members before the intervention and 100 patients and 100 family members after the intervention. RESULTS: The LCQ total score significantly improved after the intervention for both patients and family members. Four of the six dimensions of LCQ Light subscale scores were significantly higher for family members, and three of the six dimensions were significantly higher for patients after the intervention. The LCQ Color subscale score showed significant improvements for all five dimensions for both patients and family members after the intervention. CONCLUSION: This study showed improved perceived support from light and color in the physical environment for patients and family members after an EBD intervention at an emergency department using a validated instrument-the Light and Color Questionnaire.

Pain and discomfort in children with gastrostomy tubes - In the context of hematopoietic stem cell transplantation.

BACKGROUND: In children with malignant and severe non-malignant disorders undergoing hematopoietic stem cell transplantation (HSCT), treatment related pain and discomfort are common. Food consumption may become troublesome, making the use of a gastrostomy tube (G-tube) necessary and resulting in complications, why the purpose was to explore pain and discomfort during the transplantation and post-transplantation time. METHODS: This was a mixed methods study where data were collected along the child's total health-care process between 2018 and 2021. Questions with fixed answer options were used, simultaneously, semi-structured interviews were performed. In total, sixteen families participated. Descriptive statistics and content analysis were used to describe analysed data. FINDINGS: Intense pain was common during the post-surgery phase, especially in conjunction with G-tube care, which is why the children needed support to manage the situation. After the post-surgery phase when the skin has healed, most of the children experienced minor to no pain or bodily discomfort, why the G-tube became a well-functioning and supportive tool in daily life. CONCLUSIONS: This study describes variations in and experiences of pain and bodily discomfort in conjunction with G-tube insertion in a unique sample of children who had undergone HSCT. In conclusion, the children's comfort in daily life after the post-surgery phase seemed to be only marginally affected by G-tube insertion. Children with severe non-malignant disorders seemed to experience a higher frequency and intensity of pain and bodily discomfort due to the G-tube than children with malignant disorders. PRACTICE IMPLICATIONS: The paediatric care team need competence in assessing G-tube related pain and awareness that experiences may differ depending on the child's disorder.

Be prepared and do the best you can: a focus group study with staff on the care environment at Swedish secure youth homes.

PURPOSE: This study examined staff members' experiences of the institutional care environment within secure youth homes. METHODS: Data were collected through three focus group discussions with 17 staff members at two secure youth homes. Subsequently, a thematic analysis was conducted. RESULTS: The analysis indicated two main themes: risk management and damage control in a restricted environment and compensating and reconstructing ordinariness-trying to make the best of it; each theme had three subthemes. The care environment seems to be experienced by staff as characterized by conflicting demands, thus constituting a gap between needs and what is possible to achieve-a balancing act that constitutes a constant struggle. CONCLUSIONS: The staff members' constant struggle could be interpreted as conflicting moral and instrumental demands; they know what the youths need, but the environment of the secure youth homes demands the decorous behaviour of sociomaterial control practices-rather than care practices.

Impact of Birthing Room Design on Maternal Childbirth Experience: Results From the Room4Birth Randomized Trial.

OBJECTIVE: To study the effect of the birthing room design on nulliparous women's childbirth experience up to 1 year after birth. BACKGROUND: Although it is known that the birth environment can support or hinder birth processes, the impact of the birthing room design on maternal childbirth experience over time is insufficiently studied. METHODS: The Room4Birth randomized controlled trial was conducted at a labor ward in Sweden. Nulliparous women in active stage of spontaneous labor were randomized (n = 406) to either a regular birthing room (n = 202) or a new birthing room designed with more person-centered considerations (n = 204). Childbirth experiences were measured 2 hr, 3 months, and 12 months after birth by using a Visual Analogue Scale of Overall Childbirth Experience (VAS-OCE), the Fear of Birth Scale (FOBS), and the Childbirth Experience Questionnaire (CEQ2). RESULTS: Women randomized to the new room had a more positive childbirth experience reported on the VAS-OCE 3 months (p = .002) and 12 months (p = .021) after birth compared to women randomized to a regular room. Women in the new room also scored higher in the total CEQ2 score (p = .039) and within the CEQ2 subdomain own capacity after 3 months (p = .028). The remaining CEQ2 domains and the FOBS scores did not differ between the groups. CONCLUSIONS: These findings show that a birthing room offering more possibilities to change features and functions in the room according to personal needs and requirements, positively affects the childbirth experience of nulliparous women 3 and 12 months after they have given birth.

Working conditions for hospital-based maternity and neonatal health care workers during extraordinary situations - A pre-/post COVID-19 pandemic analysis and lessons learned.

OBJECTIVE: The aim of this study was to investigate how the changed work routines during the COVID-19 pandemic has been affecting the working environment for hospital-based maternity and neonatal health care workers, and to identify preventive measures to be used in future situations when health care organizations are under pressure. METHODS: All maternity and neonatal health care workers in a Swedish university hospital were surveyed during October 2019 and September 2020. The data was analyzed by document analysis of implemented changes in working routines, a quantitative analysis of the overall effects on the working conditions, and a qualitative analysis of open-ended responses. RESULTS: A total of 660 maternity and neonatal health care workers completed the pre-COVID-19 survey (74% response rate) and 382 the COVID-19 survey (35% response rate). Lack of personal protective equipment, worry about becoming infected, uncertainty whether implemented changes were enough, and challenges in communicating updated routines had negative effects on maternity and neonatal health care workers' working conditions. Team spirit and feeling valued by peers had a positive effect. CONCLUSIONS: Results suggest that negative effects on maternity and neonatal health care workers' health can partly be prevented in future critical situations by creating a work climate that acknowledges the employees' worry about being infected, securing adequate pre-conditions for managers, creating a strong psychosocial safety climate and systematically improving the working conditions for the maternity and neonatal health care workers, as well as maintaining the positive perceived effects of increased team spirit and feeling valued by peers.

Shared decision-making and person-centred care in Sweden: Exploring coproduction of health and social care services.

In Sweden the health system is nationally regulated and locally provided by 21 regions and 290 municipalities. To meet the shifting paradigm, where the person is viewed as a co-producer of health and care, Sweden has laws, regulations and policies which support the patient as an active partner in the communication with professionals in the system. Coproduction, person-centred care and shared decision making contribute jointly to the paradigm shift. Principles of human dignity and equity must be supported nationally and enacted in the decentralized, regional provision of care. Infrastructures exist or are under development which can support and strengthen care that is co-produced and based in a person-centred philosophy and approach, where shared decision making becomes a reality in practice. A Knowledge management system together with National Quality registries have the potential to form a co-produced, person-centred learning health system, where patients, and next of kin and professionals are included as partners. The joint integration of Shared decision making, Person-centre care and Coproduction into the Swedish healthcare system now looks like a possible way to realize the emerging paradigm.

Room4Birth - The effect of giving birth in a hospital birthing room designed with person-centred considerations: A Swedish randomised controlled trial.

OBJECTIVE: To evaluate if a birthing room designed with person-centred considerations improves labour and birth outcomes for nulliparous women when compared to regular birthing rooms. METHODS: A randomised controlled trial was conducted at a Swedish labour ward between January 2019 and October 2020. Nulliparous women in spontaneous labour were randomised either to a birthing room designed with person-centred considerations (New room) or a Regular room. The primary outcome was a composite of four variables: vaginal non-instrumental birth; no oxytocin augmentation; postpartum blood loss < 1000 ml; and a positive childbirth experience. To detect a difference of 8% between the groups, 1274 study participants were needed, but the trial was terminated early due to consequences of the Covid-19 pandemic. RESULTS: A total of 406 women were randomised; 204 to the New room and 202 to the Regular room. There was no significant difference in the primary outcome between the groups (42.2% versus 35.1%; odds ratio: 1.35, 95% Confidence Interval 0.90-2.01; p = 0.18). Participants in the New room used epidural analgesia to a lower extent (54.4% versus 65.3%, relative risk: 0.83, 95% Confidence Interval 0.71-0.98; p = 0.03) and reported to a higher degree that the room contributed to a sense of safety, control, and integrity (p=<0.001). CONCLUSIONS: The hypothesis that the New room would improve the primary outcome could not be verified. Considering the early discontinuation of the study, results should be interpreted with caution. Nevertheless, analyses of our secondary outcomes emphasise the experiential value of the built birth environment in improving care for labouring women.

Women's Experiences of Physical Features in a Specially Designed Birthing Room: A Mixed-Methods Study in Sweden.

AIM: To explore women's experiences of physical features in a birthing room designed to be adaptable to personal wishes and needs during labor and birth. BACKGROUND: Childbirth is a central life event influenced by numerous factors, including the healthcare environment; however, there is insufficient knowledge on how the physical design affects women during birth. METHODS: This study was part of a randomized controlled trial in the Room4Birth research project, including women randomized to receive care in a new birthing room designed with physical features changeable according to personal wishes. Data consisted of responses to two questions analyzed with descriptive statistics (n = 202) and semi-structured interviews analyzed for content (n = 19). RESULTS: A total of 93.6% (n = 189) assessed the physical features in the birthing room as meaningful to a very high or high extent. The overall impression of the room was positive and exceeded women's expectations. They felt welcomed and strengthened by the room, which shifted the focus to a more positive emotional state. The room differed from traditional hospital birthing rooms, contained familiar features that maintained integrity, and had space for companions. The variety of physical features was appreciated. Of nine listed physical features, the bathtub was ranked most important, followed by the projection of nature scenery, and dimmable lighting, but the room as a whole appeared most important. CONCLUSIONS: When planning and designing hospital-based birthing rooms, it is crucial to offer possibilities to adapt the room and physical features according to personal wishes.