Protocol for the Swiss COhort of Healthcare Professionals and Informal CAregivers (SCOHPICA): Professional trajectories, intention to stay in or leave the job and well-being of healthcare professionals.

The Swiss Cohort of Healthcare Professionals and Informal Caregivers (SCOHPICA) was created to study the career trajectories, retention intentions, and wellbeing of healthcare professionals (HCPs), addressing challenges such as staff turnover, low job satisfaction and burnout. SCOHPICA is a prospective open cohort. An electronic questionnaire was used to collect data from HCPs across multiple healthcare settings in Switzerland, encompassing the intention to stay in the profession, wellbeing, and various organizational, psychosocial, occupational and sociodemographic determinants. The first (2022) baseline sample included 1707 HCPs from over 20 professions. Notably, 13% did not intend to stay in their profession, with intermediate caregivers (24%), registered nurses (17%) and pharmacists (17%) reporting the highest rates. Pharmacists scored lowest in wellbeing. Across determinants, pharmacists, physicians, and registered nurses reported worse scores for workload and work-life balance. Nursing professions had lower scores in various determinants, including influence at work, staffing and resource adequacy, and possibilities for development. SCOHPICA will provide critical insights on HCPs' work conditions and experiences, supporting health workforce monitoring and management, and informing policy-making to ensure high-quality healthcare delivery.

Background Worldwide, health systems face workforce problems such as personnel shortages, low job satisfaction and burnout. In Switzerland, data is insufficient to address this health system crisis. Hence, the Swiss COhort of Healthcare Professionals and Informal Caregivers (SCOHPICA) aims to study healthcare professionals (HCPs) and informal caregivers’ experiences, well-being, and career/personal trajectories. Results of the baseline survey on HCPs (completed in January 2023) are reported. Methods SCOHPICA is an open prospective cohort. Any HCP working with patients in any healthcare setting in Switzerland was eligible. The data was collected with a self-reported electronic questionnaire. Outcome variables are intents to stay in the job/profession/health sector and well-being; we also explored organizational, psychosocial, psychological and occupational factors, as well as sociodemographic and socioprofessional variables. Results The baseline sample included 1707 HCPs, with 32% registered nurses, 12% physicians and 9% physiotherapists among others. In the next few months, 20% of HCPs “not really/not at all intended to stay in their job”, 13% “in their profession” and 11% “in the health sector”; “not intending to stay in the profession” was highest among healthcare assistants (HCAs), nurses and pharmacists. Well-being was also low for these HCPs. Across other factors, pharmacists, physicians, and nurses showed worse scores than other HCPs, especially for workload and work-life balance. HCAs, pharmacists, and nurses reported more burnout and worse self-rated health. Conclusions Results revealed that some categories of HCPs had a lower intent to stay in their profession, and worse working conditions and experiences, such as nurses and pharmacists, compared to other HCPs. Future data collections, findings and data dissemination through a data repository will support decision-makers and public health policies with first-hand evidence. Key messages • SCOHPICA is the first cohort study to examine the working conditions, intents to leave/stay in the profession, well-being and trajectories of all types of healthcare professional across Switzerland. • At baseline, 13% of healthcare professionals did not intend to stay in their profession; pharmacists and nurses reported worse working conditions and experiences than other healthcare professionals.

Perceptions of healthcare professionals’ psychological wellbeing at work and the link to patients’ experiences of care: A scoping review

People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. To explore family members' experiences of living with a spouse with post-stroke dysphagia. This exploratory qualitative study used one-to-one semi-structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Five spouses aged 70-93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. It is important to consider family members' perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support. What is already known on the subject Informal caregivers, often spouses, play a vital role in supporting the health and well-being of older people with health conditions. The presence of post-stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem-solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work? Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality-of-life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well-being and patient safety.

Les professionnels de santé face à la pandémie de la maladie à coronavirus (COVID-19) : quels risques pour leur santé mentale ?

Introduction and Objective Health care professionals (HPs) have been at the forefront facing the pressures and uncertainties of the COVID-19 pandemic, and thus have a higher psychological vulnerability. The incidence of psychological distress, which can negatively affect an HP's work efficiency and long-term well-being, has not been studied in depth in India. Materials and Methods A multicentric study was conducted using the digital means of communication across Max Healthcare between June and August 2020. HPs in the department of oncology, including doctors, nurses, and other support staff, were invited to voluntarily participate in the self-administered online survey. A total of 87 HPs in oncology (41 doctors, 28 nurses, and 18 in other fronts) were assessed using the 12-item General Health Questionnaire (GHQ-12). Outcome of interest was psychological distress (defined as a GHQ-12 score >15). Results The overall incidence of psychological distress among HPs in oncology during the COVID-19 pandemic was 17.20%. Significantly higher levels of psychological distress were observed among HPs with a history of psychiatric illness (p = 0.003), and among HPs with a work experience of less than 10 years (p = 0.017). Conclusion The COVID-19 pandemic had a significant impact on the psychological well-being of HPs in India. This study implicated the recognition of the psychological well-being of HPs in oncology as an unmet need during the COVID-19 pandemic, further recommending efforts toward increasing accessibility of mental health services for them.

Social media platforms, particularly Twitter (X), play an important role in healthcare communication by sharing information and personal disease experiences. We investigated glioblastoma multiforme (GBM) posting behaviors on Twitter by comparing patient and informal caregiver tweets to healthcare professional tweets. Using Keyhole, a third-party analytics tool, we analyzed 1,639 tweets containing the keyword "#glioblastoma" from January 1 to December 31, 2023. Users were categorized as patients, informal caregivers, or healthcare professionals. We employed Generalized Estimating Equation models and multinomial distributions to compare sentiment, thematic, and frequency engagement patterns across stakeholder groups. Informal caregivers produced the slight majority of tweets (51.6%), followed by healthcare professionals (39.0%). Informal caregivers expressed significantly more negative sentiments (relative to neutral ones) than healthcare professionals (p < 0.001). Thematic analysis revealed that patients (p < 0.001) and informal caregivers (p < 0.001) engaged in more emotional support than healthcare professionals. Healthcare professionals were more likely than patients (p < 0.001) and informal caregivers (p < 0.001) to self-promote. Patients (p < 0.001) and informal caregivers (p < 0.001) tweeted more on survival/mortality than healthcare professionals. Additionally, patients (p < 0.001) and informal caregivers (p < 0.001) had a higher average posting frequency per user than healthcare professionals. Our findings indicate that GBM patients and informal caregivers were more likely to discuss emotional aspects of GBM care, while healthcare professionals had more informational and professional motives. Healthcare professionals who address these emotional, social, and financial communication disconnects can make their social media engagement more meaningful to patients who are often at least one of the primary targets of these accounts.

Informal caregivers play an important role for persons with heart failure in strengthening medication adherence, encouraging self-care, and identifying deterioration in health status. Caring for a relative with heart failure can affect informal caregivers' well-being and cause caregiver burden. The objective of this study was to explore informal caregivers' experiences and needs when caring for a relative with heart failure living in their own home. The study has a qualitative design with an inductive approach. Interviews were conducted with 14 informal caregivers. Data were analyzed using qualitative content analysis. Two themes emerged: "living in a changed existence" and "struggling and sharing with healthcare." The first theme describes informal caregivers' experiences, needs, and ways of moving forward when living in a changed existence with their relative. Informal caregivers were responsible for the functioning of everyday life, which challenged earlier established roles and lifestyle. They experienced an ever-present uncertainty related to the relative's impending sudden deterioration and to lack of knowledge about the condition. Incongruence was expressed between their own and their relative's understanding and acceptance of the heart failure condition. They also expressed being at peace with their relative and managed to restore new strength and motivation to care. The second theme describes informal caregivers' experiences, needs, and ways in which they handled the healthcare. They felt counted upon but not accounted for, as their care was taken for granted while their need to be seen and acknowledged by healthcare professionals was not met. Informal caregivers experienced an ever-present uncertainty regarding their lack of involvement with healthcare. The lack of involvement with healthcare had a negative impact on the relationship between informal caregivers and their relative due to the mutual loss of important information about changes in medication regimens and the relative's symptoms and well-being. Another cause of negative impact was the lack of opportunity to talk with healthcare professionals about the emotional and relational consequences of heart failure. Healthcare professionals had provided them neither with knowledge on heart failure nor with information on support groups in the municipality. Informal caregivers captured their own mandate through acting as deputies for their relative and claiming their rights of involvement in their relative's healthcare. They also felt confident despite difficult circumstances. The direct access to the medical clinic was a source of relief and they appreciated the contacts with the registered nurses specialized in heart failure. Informal caregivers' own initiatives to participate in meetings were positively received by healthcare professionals. Informal caregivers' daily life involves decisive changes that are experienced as burdensome. They handled their new situations using different strategies to preserve a sense of "self" and of "us." Informal caregivers express a need for more involvement with healthcare professionals, which may facilitate informal caregivers' situation and improve the dyadic congruence in the relation with their relative.

The importance of familiarity with caregiving for public caregiver stigma: Evidence from a cross-sectional study in Germany

To examine the differences in depressive state and associated factors between informal and professional caregivers, a cross-sectional study was carried out in 23 informal home-based caregivers of demented patients, 24 professional caregivers working in the dementia ward of a psychiatric hospital, and 31 controls. Measurements included severity of dementia (Clinical Dementia Rating Scale, Mini Mental State Examination, MMSE) and levels of caregivers depression (Beck Depression Inventory; BDI), care burden (Zarit Caregiver Burden Interview; ZBI) and quality of life (World Health Organization-Quality of Life-26, WHO-QOL26). Informal caregivers had the highest BDI score and ZBI and the lowest QOL among the three studied groups. Regarding informal caregivers, there was a strong positive correlation between BDI and ZBI scores. The BDI and ZBI scores were significantly high when patients exhibited behavioral problems. The four WHO-QOL categories (physical domain, psychological domain, social relationships and environment) had a strong negative correlation with BDI. Regression analysis demonstrated that the psychological domain points of WHO-QOL, role strain factor of ZBI and MMSE score were significantly associated with BDI. Regarding professional caregivers, their BDI score had a strong negative correlation with the physical and psychological domains and environment categories of WHO-QOL. Regression analysis demonstrated that their BDI score was significantly associated with the psychological domain and environment. It is thus very important to provide sufficient social care services and/or personal support to informal caregivers.

To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. Cross-sectional survey in eight European countries (November 2010-January 2012). Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.

Funding Acknowledgements Type of funding sources: None. Background/Introduction Despite the possibility of invasive procedures, open heart surgery is still recommended in cases of severe ischemic heart disease and valvular heart disease. National health authorities recommend that health care professionals in hospital should offer informal caregivers necessary learning and support for burdensome caring duties. Follow-up of heart surgery patients after discharge from hospital can be an informal caregiver challenge. There is a lack of studies on the informal caregivers’ experiences with information from health care professionals from before and during hospitalization. Purpose This study explores the informal caregivers of heart surgery patients experiences of information and communication from health care professionals before and during hospitalization. Methods Qualitative in-depth interviews were conducted in informal caregivers to patients, who had undergone open heart surgery. A semi-structured interview guide was used during videotelephony (Facetime), phone or face-to-face onsite interview. The settings were university hospitals in Norway and Denmark respectively and were carried out between November 2022 – January 2023. Data analysis in NVivo software tool, following Braun and Clarke`s 6-step thematic analysis process. Results A total of 12 informal caregivers, married or partnered, two men, mean age 65 years, were interviewed two to four weeks after the patient had been discharged to home following open heart surgery. Two main themes were identified: i) lack of preoperative information and ii) responsibility to chase for in-hospital communication. Informal caregivers must invite themselves to gain access to information before admission. Informal caregivers experienced being a team with the patient before admission and then be separated in the health care system. The information and communication were targeted to the patient. Therefore, it was necessary for informal caregivers to be communicatively strong and thereby force doors open to get needed information for themselves. For some informal caregivers it was manageable while others felt lost and withdrew. Conclusion(s) Informal caregivers to patients undergoing open heart surgery want to be part of the information process before and during hospital admission. They want to be in a team with the patient, but it requires an active invitation from health care professionals.

Recent research suggests that persons living with dementia (PLWD) rely on complex networks of interconnected informal and professional caregivers. However, little is known about the structure and composition of caregiver networks and few studies address both informal and professional caregivers simultaneously. This study presents a detailed social network analysis of mixed informal and professional caregiver networks supporting PLWD. A survey-based interview protocol was designed to measure caregiver networks using 10 name generators that identify all participants in caregiving tasks. We obtained information on caregiver network characteristics (size, composition, stability, supportiveness, care coordination) and family caregiving context (family size, household size, social support, disease severity, primary caregiver background). We administered the protocol to primary caregivers for PLWD utilizing outpatient services at a memory disorder clinic. Bivariate statistics were used to identify significant associations between caregiver network characteristics and family contextual factors. 176 primary caregivers (age 28-91) for PLWD provided information on 1,566 caregiver network members; thus, PLWD were supported by large networks of 8.9 caregivers, on average. Caregiver networks were composed of 46% informal caregivers and 54% professionals. Caregiver network characteristics varied based on family caregiving context (Table 1). PLWD with larger families had larger caregiver networks (r=.28; p<.01) but not necessarily more stability, support, or care coordination. Household size, in contrast, was associated with relatively fewer professional caregivers (r=-.19; p<.05) but more types of support (r=.24; p<.01) and more frequent coordination (r=.22; p<.05). Only 45% of PLWD's family members participated in caregiving tasks compared to 72% of household members. Disease severity (ADLs) was associated with more professional caregivers (r=.18; p<.05), more support (r=.38; p<.01) and more frequent coordination (r=.17; p<.05). Primary caregiver resources mattered: household income was associated with larger caregiver networks (r=.19; p<.05), more professional caregivers (r=.21; p<.05), and more support (r=.21; p<.05), but not necessarily stability or coordination. We found that PLWD are supported by large networks of informal and professional caregivers. Moreover, caregiver networks adapt to family caregiving context. Future studies should investigate consequences of caregiver network variations for caregiving-related outcomes like quality and costs of care, formal services use, and caregiver burden.

BackgroundSafe medication management for older adults after hospital discharge requires a well-coordinated, interprofessional, patient-centered approach. This study aimed to describe the perceived needs for collaborative medication management for older adults taking several different medications at home after hospital discharge.MethodsA qualitative descriptive study was conducted using semi-structured interviews with older adults (n = 28), informal (n = 17), and professional caregivers (n = 13).ResultsFindings revealed four main needs: older adults and informal caregivers’ perceived needs for greater involvement in discharge planning; older adults’ perceived needs to be informed, listened to, and to be actively involved in decision-making; informal caregivers’ perceived needs for help in supporting and coordinating medication management; and older adults’ and informal and professional caregivers’ perceived needs for better communication and coordination between professional caregivers.ConclusionThis study revealed two underutilized pathways towards improving collaborative medication management: medication follow-up involving a community healthcare professional taking an overarching responsibility and empowering older adults and their informal caregivers in medication management after hospital discharge.

With aging populations worldwide, informal caregivers (ICs) play an essential role in transitional hospital-to-home care for older people, providing essential first-line support, clinical assistance, emotional care, and crucial coordination of care. However, their involvement in discharge planning remains insufficiently recognized, potentially compromising patient safety and continuity of care. Despite their vital contributions and growing policy initiatives, ICs' involvement in hospital discharge planning remains insufficiently recognized. This lack of structured integration leads to significant gaps in communication, education, and collaborative care planning-factors that can compromise patient safety, disrupt continuity of care, and increase caregiver burden. ICs often report feeling unheard and excluded from key decisions, which contributes to adverse outcomes for both patients and ICs. Addressing these gaps requires comprehensive systemic changes aimed at formalizing the role of ICs in professional training, hospital discharge protocols, and integrating ICs meaningfully into care decision-making processes. This perspectives article provides an overview of the current state of IC involvement in transitional care, reflects on its relevance among healthcare professionals, policymakers, and researchers, and explores the implications for patient safety and health outcomes. Drawing on evidence-based models such as the Transitional Care Model and Better Outcomes for Older people through Safe Transitions, the article discusses key strategies to enhance IC participation. These include raising awareness among professional caregivers, improving communication and information transfer, formally recognizing and integrating ICs as care partners, and leveraging technology and support systems tailored to their needs. By fostering structured partnerships and collaborative approaches with ICs, healthcare systems can improve the quality and safety of transitional care while alleviating caregiver burden and promoting better long-term health trajectories for older people.