Background: Core elements in providing palliative care are symptom management, interdisciplinary teamwork, communication and relation, and support for relatives. The goal of palliative care is to relieve symptoms based on physical, psychological, social and existential aspects and promote quality of life in patients and their relatives. Close relatives are defined as a person the individual considers to have a close relationship with and can include a romantic partner. Being a close relative can be challenging and relatives have an increased risk of suffering from exhaustion, isolation and depression. In order to be able to provide good palliative care and offer adequate support in accordance with the core elements of palliative care, it is valuable to study the experiences of the partners.

Aim: To describe experiences of being a partner to a person with progressive non curable disease

Method: Non-systematic literature review with twelve included qualitative articles. Data was collected through three scientific databases, PubMed, CINAHL and PsycInfo. Data was analyzed with a thematic method according to Braun and Clarke (2006).

Results: The results are presented in two themes: “Changes in existence” and “The emotional burden”. There are six subthemes. Partners experienced ambivalent feelings and increased need of support. Changes in daily life and interpersonal relations and roles are experienced by the partners. The final days and end of life-care increased the partner's sense of mindfulness.

Conclusion: Partners to someone with progressive non curable disease are experiencing changes in the being and carry a heavy emotional burden. By understanding these relatives' experiences with a wider systemic perspective nurses may be able to provide adequate support for them

Background

About 90.000 people die in Sweden each year, of which approximately 80 percent are in need of palliative care. Palliative care aims to relieve suffering and improve the quality of life for the patient and their relatives. End-of-life care is the final phase of palliative care, when the patient has limited time left to live. The nurse ought to pay attention to the needs and challenges of relatives and offer adequate support to improve the quality of palliative care.

Aim

The aim was to illustrate relatives’ perception of family members’ end-of-life care.

Method

The method used was a non-systematic literature review approach. Data was collected from the databases CINAHL, PubMed and APA Psychinfo. 16 scientific articles with qualitative, quantitative and mixed methods were included. An integrated analysis method was utilized to consolidate the findings from the selected articles. Sophiahemmet University's assessment tool for quality assessment was used to assess the quality of the articles.

Results

The need for clear and honest communication from the healthcare staff is crucial for the relatives to feel involved in the care given to the patient. Miscommunication leads to emotional strain on loved ones, affecting their well-being. Relatives thus experience increased responsibility in promoting the patient's well-being. The importance of support for close carers by health professionals and family members is essential to relieve the burden and create good cooperation between these different roles.

Conclusions

Relatives of end-of-life care patients face a range of challenges and needs, including clear and honest communication from healthcare providers, the strain of being present for the patient, and the need for support during the patient's palliative phase and after the patient's death. Relatives also express difficulties in balancing the added responsibility with emotional distress. Understanding the needs and challenges of relatives is crucial for developing a support system for both the patient and relatives, which ultimately promotes well-being for both parties.

BACKGROUND: Palliative care needs in patients with cardiovascular diseases (CVD) are expected to increase. For the planning of equitable palliative care, it is important to understand where people with CVD die. The aim was to examine trends in place of death, associated factors including utilization of specialized palliative services, and to what extent longitudinal development is influenced by national policy.

METHODS: A population-level registry study of place of death for adults deceased due to CVD (n = 209 671) in Sweden 2013-2019. Linear regression analysis was applied.

RESULTS: The predominant place of death was nursing home (39.1 %) and hospital (37.6 %), followed by home (22.0 %). From 2013 to 2019 home deaths increased by 2.8 % and hospital deaths decreased by 3.0 %. An overall downward trend was found for dying in hospital compared to dying at home. With variations, this trend was seen in all healthcare regions and for all CVD types, except Stockholm and cerebrovascular disease, with no significant trend. Overall, but with cross-regional variations, 2.1 % utilized specialized palliative services, while 94.2 % had potential palliative care needs. Other variables significantly influencing the trend were age and having had an unplanned healthcare visit.

CONCLUSION: Despite a slight positive trend, only a minority of people with CVD die in their own home. Regional variations in place of death and the low and varied utilization of specialized palliative services indicate inequity in access to palliative care. Hence, the impact of current national policies is questionable and calls for strengthening through inclusion of early palliative care in specific CVD policies.

AIM: To explore Finnish paramedics' perceptions of work-related performance expectations in relation to work experience, and understand how organizational socialization contributes to understanding paramedics' performance expectations.

DESIGN: A qualitative design with a deductive-inductive approach utilizing a social constructivist framework. The organizational socialization framework by Wanberg was used as the theoretical basis.

METHODS: Data were collected between May and August 2023, using group and individual interviews of newly graduated (n = 9) and experienced paramedics (n = 13). Participants were recruited via social media channels. Data were first analyzed deductively, according to constructs of the organizational socialization framework (role clarity, task mastery, and social acceptance), then inductively, using codes not utilized in the deductive phase.

DATA SOURCES: Interviewed Finnish paramedics (N = 22), both newly graduated paramedics (n = 9) and experienced paramedics (n = 13). The interviews were performed remotely and then transcribed into text.

RESULTS: Our findings showed comparable performance expectations between newly graduated and experienced paramedics, mismatches in role clarity of paramedic work, challenges in both learning and upholding professional competence, and difficulties of social acceptance into the paramedic community. There were variations in how expectations were perceived between groups, indicating that experience might partly affect how paramedics identify and manage performance expectations. The organizational socialization framework enables the contextualization of these performance expectations.

CONCLUSIONS AND IMPLICATIONS: Paramedic work involves challenges to upholding clinical competence, aligning to a professional role, and social integration into the professional community. Our research contributes to understanding how paramedics perceive these challenges as performance expectations in different stages of their careers and how they could be managed utilizing a framework for organizational socialization. The socialization of paramedics into the workforce needs to account for these performance expectations, especially considering the changing paradigm of paramedic work, role, and societal expectations.

PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.

BACKGROUND: A neonatal mortality prediction score can assist clinicians in making timely clinical decisions to save neonates' lives by facilitating earlier admissions where needed. It can also help reduce unnecessary admissions.

OBJECTIVE: The study aimed to develop and validate a prognosis risk score for neonatal mortality within 28 days in public hospitals in the Amhara region, Ethiopia.

METHODS: The model was developed using a validated neonatal near miss assessment scale and a prospective cohort of 365 near-miss neonates in six hospitals between July 2021 and January 2022. The model's accuracy was assessed using the area under the receiver operating characteristics curve, calibration belt, and the optimism statistic. Internal validation was performed using a 500-repeat bootstrapping technique. Decision curve analysis was used to evaluate the model's clinical utility.

RESULTS: In total, 63 of the 365 neonates died, giving a neonatal mortality rate of 17.3% (95% CI: 13.7-21.5). Six potential predictors were identified and included in the model: anemia during pregnancy, pregnancy-induced hypertension, gestational age less than 37 weeks, birth asphyxia, 5 min Apgar score less than 7, and birth weight less than 2500 g. The model's AUC was 84.5% (95% CI: 78.8-90.2). The model's predictive ability while accounting for overfitting via internal validity was 82%. The decision curve analysis showed higher clinical utility performance.

CONCLUSION: The neonatal mortality predictive score could aid in early detection, clinical decision-making, and, most importantly, timely interventions for high-risk neonates, ultimately saving lives in Ethiopia.

OBJECTIVE: To explore the experiences of healthcare and social services professionals and their perceptions of using Certificate for self-care with support (CSS) for preventive self-care for older adults with home care, including the CSS process and collaborations between primary healthcare and social services.

DESIGN: An inductive qualitative study including seven focus group interviews analyzed with reflexive thematic analysis.

SETTING AND SUBJECTS: The study was conducted in the Stockholm Region 2022/23. In total, 23 informants were recruited from four key partners involved in the CSS process: professionals from primary care rehabilitation and primary healthcare, social services officers, and home care staff.

RESULT: The analyses resulted in five interconnected themes: 'Guidelines with scope for interpretation,' 'Support for self-care is needed, but complicated in practice,' 'To trust the other professions' competence,' 'There is a transfer of responsibility,' and 'Communication is key.' The overarching theme 'Principles or pragmatism for safe person-centered care,' anchoring the other themes, revealed a common goal of achieving safe and individualized care within available resources, but from two conflicting perspectives: the importance of following the process according to the guidelines or taking a more pragmatic approach.

CONCLUSION: This study highlights the need to establish structures facilitating safe self-care among frail groups, such as older persons dependent on home care. Our findings emphasize that the demarcation between, and responsibilities of, organizations need to be discussed and clarified to offer person-centered support. Comprehensible guidelines and functioning communication channels must be established so that all important perspectives can be heard, not least the patient's.

OBJECTIVES: Despite rapid expansion of treatments for metastatic castration-resistant prostate cancer (mCRPC) and the importance of symptom management for enhancing quality of life, few studies have focused on men's experiences of symptom burden over time when receiving one or more lines of treatment in a real-world situation in this phase. The aim was to investigate changes in the multidimensional symptom burden during the first year of life-prolonging treatment of mCRPC.

METHODS: Longitudinal data from the first year of life-prolonging treatment for 134 men with mCRPC were used. Symptoms were measured with the multidimensional Memorial Symptom Assessment Scale. Data are presented with descriptive statistics, and changes in symptom burden (physical, psychological and number of symptoms) were analysed using linear mixed modelling.

RESULTS: On average, the men had approximately 10 (0-31) symptoms at inclusion and 12 (0-33) at the last time point. Lack of energy and sweats were the two most reported symptoms at every time point. Sexual problems had the highest scores in all dimensions (frequency, severity, distress). Regarding pain, the distress score was higher than the scores for frequency and severity at t1-t4. Physical symptom burden and the number of symptoms changed significantly over time, towards a higher symptom burden. Psychological symptom burden did not change significantly over time.

CONCLUSION: The different dimensions of physical symptoms in men treated for mCRPC need to be more acknowledged. Early integration of a palliative care approach could possibly help in enhancing symptom management and quality of life for these men.

BACKGROUND: Altered biosynthesis of eicosanoids is linked to type 2 inflammation in chronic rhinosinusitis with nasal polyps (CRSwNP), but their role in recalcitrant NPs is unclear.

OBJECTIVES: We sought to identify endotypes that are linked to recalcitrant CRSwNP, based on eicosanoids, their biosynthetic enzymes, and receptors as well as cytokines and the presence of eosinophils and mast cells in recurrent NPs.

METHODS: Mucosal tissue collected at the time of sinus surgery from 54 patients with CRSwNP and 12 non-CRS controls were analysed for leukotriene (LT) E4, prostaglandin (PG) D2, 15(S)-hydroxyeicosatetraenoic acid (15(S)-HETE) and 17 cytokines with ELISAs and Bio-Plex immunoassays. Patient subgroups were identified by cluster analysis and the probability of NP recurrence were tested with logistic regression analyses. Gene expressions were analysed with qPCR. Tryptase and eosinophil-derived neurotoxin (EDN) were measured with ELISAs as indications of the presence of mast cells and eosinophils, respectively.

RESULTS: Clustering of patients showed that an inflammatory signature characterised by elevated LTE₄, PGD₂, 15(S)-HETE and IL-13 was associated with NP recurrence. Previous NP surgery as well as aspirin-exacerbated respiratory disease were significantly more common among these patients. Expression of cyclooxygenase 1 was the only gene associated with NP recurrence. Levels of EDN, but not tryptase, were significantly higher in patients with recurrent NPs.

CONCLUSION: Distinguishing endotypes that include LTE₄, PGD₂, 15HETE and conventional biomarkers of type 2 inflammation could help predict recurrent nasal polyposis and thus identify cases of recalcitrant CRSwNP.

PURPOSE: To describe experiences of the ward nurse in relation to extended physiotherapy and mobilising of post-ICU patients.

METHODS: Individual semi-structured interviews were conducted with 17 registered nurses working on surgical wards in a Swedish regional hospital. Qualitative content analysis was used to analyse the data. The study was reported according to the consolidated criteria for reporting qualitative research (COREQ).

RESULTS: The study findings are presented in three categories: challenges to mobilising post-ICU patients, shared responsibility facilitates mobilisation, and extended physiotherapy is beneficial for patients' wellbeing. Nurses stated that they lacked knowledge and skills to perform the safe mobilisation of post-ICU patients due to their complex medical history and needs. Collaboration with physiotherapists was perceived to facilitate mobilisation and to be beneficial for patients' wellbeing outcome.

CONCLUSIONS: The study indicates that post-ICU patients are at risk of remaining immobilised because ward nurses find mobilisation too complex to conduct without support from physiotherapists. Shared responsibility through multi-professional teamwork regarding patient rehabilitation is perceived as contributing the knowledge required to achieve safe mobilisation that enhances autonomy and physical ability in post-ICU patients.

BACKGROUND: This study examined manual therapy business owners' perception of official recommendations during the COVID-19 pandemic and the impact on their clinics' economic performance, including clinic activity hours and business turnover.

MATERIALS AND METHODS: In a longitudinal study design, data were collected in November 2021 (baseline), and after three months, six months, and 12 months. Participants were manual therapists who were business owners. A growth curve model was used to analyze differences in clinical activity trajectories. Multinomial logistic regression analysis was used to assess the relationship between perceived disruptions in business and turnover. Qualitative text analysis was used to examine participants' responses to open-ended questions concerning economic measures taken to sustain their business during the pandemic.

RESULTS: This study of 443 manual therapy business owners found that clinics were initially active with minimal variation, but activity changed following COVID-19 recommendations. Business owners perceived that the disruptions had no significant impact on turnover during the initial stages of the official recommendations. Economic support and the previous decrease in turnover increased the likelihood of experiencing a decreased turnover at 12 months. Business owners implemented cost-cutting measures and diversified income sources to navigate COVID-19 challenges and sustain their businesses.

CONCLUSION: The official recommendations in Sweden had an impact on manual therapists' businesses as the COVID-19 pandemic lingered. Some business owners were concerned at the early stages about lower turnover but showed financial resilience by cutting costs and finding new revenue sources to overcome COVID-19 challenges.

BACKGROUND: The Surprise Question (SQ) is a common method aimed at identifying frail patients who need serious illness conversations to integrate a palliative approach. However, little is known about whether the SQ identifies patients on hemodialysis who perceive that they are declining or have low health-related quality of life (HRQoL)-important aspects when considering the need for serious illness conversations.

OBJECTIVE: To explore how nurses and physicians' responses to the SQ are associated with patients' self-reported HRQoL.

DESIGN: Cross-sectional study.

SUBJECTS: In total, 282 patients on hemodialysis were included.

MEASUREMENTS: One nurse and one physician responded to the SQ for each patient. The patient-reported HRQoL was measured with the RAND 36-Item Health Survey 1.0 (RAND-36) and the EuroQual vertical visual analogue scale (EQ-VAS) from the EuroQual-5 Dimension Questionnaire (EQ-5D).

RESULTS: Nurses' responses "no, not surprised" to the SQ were associated with patient-reported worsened health compared to one year ago (RAND-36), and lower perceived overall health (EQ-VAS). Physicians' responses "no, not surprised" were associated with lower overall health and lower physical functioning. Patient-reported pain, general health, fatigue, and emotional and social aspects were not associated with responses to the SQ.

CONCLUSIONS: The findings indicate that the SQ identifies patients on hemodialysis who report low overall health and low physical functioning. However, the SQ did not identify patients who reported pain, emotional problems, or fatigue, which are also important aspects to consider in identifying needs for serious illness conversations, symptom management, and to be able to integrate a palliative approach.

BACKGROUND: As person centred care (PCC) is being implemented globally, higher educational institutions (HEI) have begun to play a crucial part in enabling this transition. In Sweden, however, the delivery of PCC is inconsistently implemented in medicine, nursing, occupational therapy, and physiotherapy study programmes. This inconsistency is partly the result of a lack of a national strategy across HEI. Program directors are responsible for the PCC content of their programs, so their views influence how PCC is taught. Using interviews with programme directors in higher education, we aim to deepen the understanding of the preconditions needed to implement PCC by exploring discourses and identifying subject positions of how PCC is taught and learned.

METHODS: We performed a discourse analysis based on interviews with program directors in the above-mentioned national study programmes. A discourse can be seen as a struggle over identity. The subject position - i.e., discourses designate positions for persons to occupy as subjects - guided our analysis and identification of the subject positions of the teacher and the student in teaching and learning PCC.

RESULTS: This study unfolded in two main antagonistic aspects with respect to teaching and learning PCC, resulting in four subject positions for the teacher and four corresponding subject positions for the students. First, the teacher and student were given a subject position as change agents towards a more egalitarian healthcare and were assigned a subject position to cope with a practical reality they could not change. Second, the teacher and student were assigned a subject position that embodied profession-specific identities, navigating and valuing these boundaries. Simultaneously, both teachers and students assumed a subject position that required interprofessional interaction and co-creation for teaching and learning PCC.

CONCLUSION: This study demonstrates the discursive tension surrounding the implementation of PCC in HEI, and the findings can serve as a basis for creating future relevant and high-quality learning activities. The process of negotiating diverse and co-existing perspectives as well as building interprofessional trust when incorporating PCC into higher education is essential and requires further exploration.

BACKGROUND: Health and social care staff play a significant role in detecting and reporting abuse among persons with dementia. However, they are often left to their own judgements which can lead to elder abuse not being detected or acted on. The aim was to explore what healthcare and social care staff consider elder abuse, and their experience of elder abuse perpetrated by family members of persons with dementia.

METHODS: This mixed-method vignette study was conducted in Sweden during the year 2021. In total 39 staff working in dementia care were included. They first answered the Caregiver Scenario Questionnaire and then participated in a group interview.

RESULTS: An inconsistency was revealed regarding whether a management strategy for behavioural difficulties included in the Caregiver Scenario Questionnaire should be considered an abusive act or not. No participants were able to identify all five abusive behaviour management strategies. Participants described witnessing 101 abusive acts including different types of abuse of a person with dementia, with emotional/psychological abuse and neglect being most common.

CONCLUSIONS: Health and social care staff who work close to older persons are able to detect abuse perpetrated by family members. However, inconsistency in defining abusive acts demonstrates the uncertainty in identifying abuse. This may lead to abuse not being identified, but it also creates feelings of inadequacy among staff.

BACKGROUND: Assessment of undergraduate students using assessment instruments in the clinical setting is known to be complex. The aim of this study was therefore to examine whether two different assessment instruments, containing learning objectives (LO`s) with similar content, results in similar assessments by the clinical supervisors and to explore clinical supervisors' experiences of assessment regarding the two different assessment instruments.

METHOD: A mixed-methods approach was used. Four simulated care encounter scenarios were evaluated by 50 supervisors using two different assessment instruments. 28 follow-up interviews were conducted. Descriptive statistics and logistic binary regression were used for quantitative data analysis, along with qualitative thematic analysis of interview data.

RESULT: While significant differences were observed within the assessment instruments, the differences were consistent between the two instruments, indicating that the quality of the assessment instruments were considered equivalent. Supervisors noted that the relationship between the students and supervisors could introduce subjectivity in the assessments and that working in groups of supervisors could be advantageous. In terms of formative assessments, the Likert scale was considered a useful tool for evaluating learning objectives. However, supervisors had different views on grading scales and the need for clear definitions. The supervisors concluded that a complicated assessment instrument led to limited very-day usage and did not facilitate formative feedback. Furthermore, supervisors discussed how their experiences influenced the use of the assessment instruments, which resulted in different descriptions of the experience. These differences led to a discussion of the need of supervisor teams to enhance the validity of assessments.

CONCLUSION: The findings showed that there were no significant differences in pass/fail gradings using the two different assessment instruments. The quantitative data suggests that supervisors struggled with subjectivity, phrasing, and definitions of the LO´s and the scales used in both instruments. This resulted in arbitrary assessments that were time-consuming and resulted in limited usage in the day-to-day assessment. To mitigate the subjectivity, supervisors suggested working in teams and conducting multiple assessments over time to increase assessment validity.

BACKGROUND: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD.

METHODS: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy.

RESULTS: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy.

CONCLUSION: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD.

TRIAL REGISTRATION: ISRCTN14565552 (retrospectively registered).

Background

In Sweden, three percent of the population lives with ADHD. Treatment and care are aimed at increasing quality of life and independence in the face of a lifelong disability. Co-morbidities are common, both other psychiatric problems and somatic diseases. Since people with ADHD seek care like the rest of the population, the nurse can have a key role as a support function.

Aim

To explore the needs for support of adults with ADHD from their perspective.

Method

The method used is a non-systematic literature review and is based on 11 scientific articles with both qualitative and quantitative design methods. The collection of the articles took place via PubMed and CINAHL. The quality review of the included articles took place via Sophiahemmet's assessment basis. Through an integrated data analysis that took place in three steps, the results were compiled and analysed.

Results

Two main categories could be identified in the results. The first main category identified was, Need for support in functional impairment, which highlights the complexity of the impairment and includes subcategories, Early intervention and care continuity, Identification of effective strategies and Optimized treatment interventions. The second main category identified was, Psychosocial Support Needs, which includes the subcategories Community support, Belonging and Information and education.

Conclusions

The support needs of adults with ADHD are multi-dimensional and involve different areas of life. The impairments associated with ADHD vary in severity and require early adaptation of support interventions according to the person's needs. Support can be practical support including counseling, education and strategies, but it can also be emotional support from others.