Disruption Of Life Research Articles

Application and effectiveness of adaptive AI in elderly healthcare.

In addressing elderly healthcare issues, cognitive impairment can cause significant disruptions in daily life and may potentially develop into dementia. Thus, finding ways to delay the progression of cognitive impairment is a critical issue. This study aims to develop an adaptive artificial intelligence (AI) mechanism that creates enjoyable and beneficial content to help delay cognitive impairment in the elderly. Utilising virtual reality (VR) and a fishing game, the design enhances reaction time and attention through interactive fishing activities. The AI personalises content based on individual performance to improve cognitive function. Experimental results showed that adaptive AI increased participant satisfaction from 86.84 to 91.05 points and future willingness from 75.26 to 85.68 points. The number of fish caught rose from 98 to 120, with the average per participant increasing from 2.64 to 2.85. This is undoubtedly the trend of the future. VR allows the elderly to have a more impactful and memorable first experience, while AI dynamically adjusts the game's difficulty based on the elderly's performance, addressing the issue of reduced willingness to continue due to inappropriate game difficulty. The VR game developed in this study is designed to be relaxing and incorporates mechanisms to promote the elderly's health. It is not restricted by location or time and, more importantly, meets the health promotion needs of the elderly.

Household exposure to COVID‐19 and life insurance holdings

AbstractThe COVID‐19 pandemic has resulted in substantial loss of life and economic disruption, leading to a reevaluation of financial planning strategies. This paper examines the relationship between household exposure to COVID‐19 and their life insurance holdings using data from a nationwide household survey in the US. The results indicate that households diagnosed with COVID‐19 are more likely to own life insurance and hold a larger amount of coverage due to the pandemic, with these effects significantly influenced by the bequest motive. Conversely, hospitalization and the death of family members due to COVID‐19 are negatively correlated with life insurance holdings. The implications can inform household and industry decisions to enhance household financial welfare in response to pandemic risks.

Göç Olgusunun Göçmen Bireyler Üzerindeki Ruh Sağlığına Etkisi

Migration is a complex structure that has existed throughout human history of individuals and units. There are different types of migration. Internal migration means displacement within the borders of the country. Emigration means leaving the regions they belong to for certain reasons. Brain drain, on the other hand, occurs when people who have developed their own personality are academically educated elsewhere due to the country's conditions. As a result of this move, immigrant individuals are affected by spiritual and emotional changes. The psychological effects of immigration on immigrants are known. Immigrant individuals may experience difficulties in three different categories: before migration, during migration and after migration. As a result of research on common pathologies seen in immigrants, post-traumatic stress disorder, anxiety disorders, self-alienation, schizophrenia, somatization disorder, and increased psychotic features have been expressed. It is known that the life disruption of immigrants has also been reduced. There are definitions of these immigrant types, as well as the psychological transitions of immigrant individuals and the common problem seen in immigrants. Literature research is included in their content. It can be stated that the results of the research showing that migration disrupts the daily life of the students and that psychological problems arise in their lives in a negative way can be expressed. Keywords: Types of migration, migrants, psychology, mental health, trauma.

Efficacy of Streptococcus salivarius Blis K12 in the Prevention of Upper Respiratory Tract Infections in Physically Active Individuals: A Randomized Controlled Trial

This study investigates the efficacy of Streptococcus salivarius K12 in preventing upper respiratory tract infections (URTIs) in healthy adults. URTIs are a common issue, particularly in physically active individuals, leading to significant disruptions in daily life. Probiotics, such as S. salivarius K12, have emerged as a potential preventive strategy for these infections. This research was conducted as a randomized, double-blind, placebo-controlled trial involving 112 participants aged between 19 and 25. Participants were randomly divided into two groups: one group received a daily dose of S. salivarius K12, marketed as Bactoblis®, while the other received a placebo. The trial lasted for four months, during which adherence to the treatment protocol was closely monitored. The primary goal was to measure the incidence of URTIs using the Jackson Scale and the Wisconsin Upper Respiratory Symptom Survey (WURSS-11). The results indicated that higher adherence to the S. salivarius K12 treatment was associated with an increased number of days without URTI symptoms. Although the overall severity of symptoms did not differ significantly between the treatment and control groups, those with high adherence to S. salivarius K12 (greater than 90%) reported more days free from illness. In conclusion, S. salivarius K12 demonstrated potential as a preventive measure against URTIs, especially in individuals who adhered strictly to the treatment regimen. However, further research involving larger populations and longer follow-up periods is needed to fully confirm these findings and better understand the role of S. salivarius K12 in preventing respiratory infections.

Altered Gut Microbiota Patterns in Young Children with Recent Maltreatment Exposure

Background: The brain and the intestinal microbiota are highly interconnected and especially vulnerable to disruptions in early life. Emerging evidence indicates that psychosocial adversity detrimentally impacts the intestinal microbiota, affecting both physical and mental health. This study aims to investigate the gut microbiome in young children in the immediate aftermath of maltreatment exposure. Methods: Maltreatment exposure was assessed in 88 children (ages 3–7) using the Maternal Interview for the Classification of Maltreatment [MICM]. Children were allocated to three groups according to the number of experienced maltreatment categories: no maltreatment, low maltreatment, and high maltreatment exposures. Stool samples were collected and analyzed by 16S rRNA sequencing. Results: Children subjected to high maltreatment exposure exhibited lower alpha diversity in comparison to those with both no and low maltreatment exposure (Simpson Index, Tukey post hoc, p = 0.059 and p = 0.007, respectively). No significant distinctions in beta diversity were identified. High maltreatment exposure was associated with the enrichment of several genera from the class Clostridia (Clostridium, Intestinibacter, Howardella and Butyrivibrio) and the depletion of the genus Phocaeicola (class Bacteriodia). Conclusions: Severe maltreatment exposure is associated with alterations in the gut microbiota of young children. Longitudinal trajectories of intestinal microbiota composition in the context of maltreatment may reveal important insights related to psychiatric and somatic health outcomes.

AI fusion of multisource data identifies key features of vitiligo

Vitiligo is a skin disorder that is associated with a decreased risk of skin cancer, but it can lead to increased susceptibility to sunburn, psychological distress, and disruptions in daily life, consists of two primary subtypes: segmental and nonsegmental vitiligo, each with distinct underlying mechanisms. However, the reliable identification of diagnostic markers and the ability to differentiate between these subtypes have remained elusive challenges. This study aims to pioneer predictive algorithms for vitiligo diagnosis, harnessing the capabilities of AI (Artificial Intelligence) to amalgamate multisource data and uncover essential features for distinguishing vitiligo subtypes.An ensemble algorithm was thoughtfully developed for vitiligo diagnosis, utilizing a spectrum of machine learning techniques to evaluate the likelihood of vitiligo, whether segmental or nonsegmental. Diverse machine learning methodologies were applied to distinguish between healthy individuals and vitiligo patients, as well as to differentiate segmental from nonsegmental vitiligo. The ensemble algorithm achieved a remarkable AUC (Area Under the Curve) of 0.99 and an accuracy of 0.98 for diagnosing vitiligo. Furthermore, in predicting the development of segmental or nonsegmental vitiligo, the model exhibited an AUC of 0.79 and an accuracy of 0.73. Key parameters for vitiligo identification encompassed factors such as age, FBC (full blood count)-neutrophils, FBC-lymphocytes, LKF(liver and kidney function)-direct bilirubin, LKF-total bilirubin, and LKF-total protein levels. In contrast, vital indicators for monitoring the progression of segmental and nonsegmental vitiligo included FBC-B lymphocyte count, FBC-NK (Natural Killer) cell count, and LKF-alkaline phosphatase levels. This retrospective study underscores the potential of AI-driven analysis in identifying significant risk factors for vitiligo and predicting its subtypes at an early stage. These findings offer great promise for the development of effective diagnostic tools and the implementation of personalized treatment approaches in managing this challenging skin disorder.

Assessment of Adverse Effects Associated with Antipsychotics in Patients with Schizophrenia

Schizophrenia causes major disruptions in a person's life, making it challenging to go to work or school, maintain a routine, interact with others, finish daily duties, or take care of oneself. This study aimed to assess adverse effects of antipsychotics in patients with schizophrenia. This study is relevant in identifying the side effects and improving the treatment options which HELPs reducing side effects and improved quality of life of patients. Antipsychotic drugs can lessen or alleviate psychotic symptoms like delusions and hallucinations. Antipsychotic medications can have side effects that range from being mildly unpleasant to extremely unpleasant. A total of 42 patients complying the inclusion criteria were included in the study among which The majority were in the age group of 35-44 and with male gender dominanc. The study observed no significant relationship between the occurrence of the side effects and age but found to have a significant relation between weight gain and male gender. The drug which was most prescribed was Risperidone, followed by Olanzapine. From this study it was evident that, side effects such as akathisia, tremors, insomnia, weight gain, dizziness, weight gain etc was due to second generation antipsychotics from usage over a longer period of time. This study observed that male age groups were more prone to get weight gain as side effect while taking second generation side effects. While no significant comparison with age was found. The study concluded that adverse effect can be attenuated by alternating the drugs instead of long term usage.

The role of temporality in refugees’ work-related meaningfulness-making

ABSTRACT This study explores how refugees, i.e., people experiencing liminality due to career and life disruptions, make work-related meaningfulness, and it uncovers how they apply temporality in their meaningfulness-making. Analysing 48 interviews of 24 refugees in Germany, the findings show how, post-migration, refugees faced two types of under-institutionalized liminal experiences challenging their meaningfulness – one concerning self-focused and one pertaining to other-focused sources of meaningfulness. To navigate these liminal experiences, refugees actively made meaningfulness. This was a temporal process, as refugees connected their past, present, and future. They drew on their past and present vocational experiences when moving towards their future vocational self, built on their past and acted in the present to secure present and future social connections, amplified synergies and resolved tensions in meaningfulness sources, and compensated unavailable meaningfulness sources with available ones. Based on our findings, we propose a model on how people make meaningfulness despite missing its main ingredients (i.e., a clear sense of self and social connections) and how under-institutionalized liminality can turn from a space devoid of meaningfulness into an agentic and creative space of meaningfulness-making. We contribute to meaningfulness, temporality, and liminality research.

The impact of preferred language on cancer wellbeing screen outcomes.

57 Background: Preferred language is a barrier to adequately screening patients for supportive care needs. At a large health system, a Wellbeing Screen (WBS) is regularly administered to identify stressors and guide referrals to supportive services. WBS completion rates and domains of wellbeing impacted were compared among cancer patients with non-preferred English language (nPEL) vs. preferred English language (PEL). We hypothesized nPEL patients may have lower completion rates or report differing needs. Methods: A single institution retrospective study evaluating WBS among all patients receiving ambulatory cancer care at one of 7 sites from 01/2021-12/2022 was performed. The WBS instrument assesses degree of impact for 15 wellbeing domains and is assigned to patients at each oncology-related visit if a WBS has not been completed within the last 30 days. PEL vs. nPEL patients were compared for rate of completion among assigned WBS, percentage of screens with moderate/severe impact on at least one domain and for each individual domain, and average number of domains with moderate/severe impact. Fisher’s exact test was used to calculate odds ratios and p-values. Results: During the study period, a total of 12,642 patients were assigned at least one WBS resulting in 56,821 assigned WBS, of which 7,898 (13.9%) were assigned to nPEL patients. Of all assigned WBS, 20,191 (35.5%) were completed. The odds of completing an assigned WBS was 1.6 times higher for the PEL compared to nPEL group (p<0.001), despite a lower average number of assigned WBS per patient in the PEL group (4.4 vs. 5.3, p<0.001). Of 20,191 completed WBS, 10,097 (50.0%) WBS identified a moderate/severe impact on at least one domain. WBS completed by PEL patients had 1.42 higher odds of moderate/severe impact on at least one domain compared to those completed by nPEL (p<0.001). WBS completed by PEL patients also had significantly higher odds of identifying a moderate/severe impact on 11 of the 15 individual domains (p-value <0.01): Life Disruption (OR 1.9), Sexual function (OR 1.7), Body Image (OR 1.5), Feeling Valued (OR 1.5), Worry About Others (OR 1.4), Depressed Mood (OR 1.3), Anxiety (OR 1.3), Treatment Decisions (OR 1.3), Sleep Issues (OR 1.3), Cognitive Problems (OR 1.2), and Physical symptoms (OR 1.2). Among all WBS with moderate/severe impact on at least one domain, the average number of domains affected was similar at 4 domains for both groups. Conclusions: WBS assigned to PEL had higher odds of being completed compared to nPEL. In addition, WBS completed by PEL had higher odds of identifying moderate/severe impact on at least one wellbeing domain and higher odds of identifying moderate or severe impact on 11/15 of the individual WBS domains when compared to those completed by nPEL. Cultural norms, such as differential importance of or meaning ascribed to the WBS domains, along with practical barriers, such as need for an interpreter, may impact these outcomes.

The transnational mental health burden of Haiti's alleged collapse: preliminary findings from The Haitian Well-Being Study.

Transnational drug trafficking, political unrest, gang violence, and paramilitarism, which are pervasive in Haiti, have resulted in a mental health crisis for the broader Haitian community. This study explores the mental well-being of Haitians in Haiti and the United States by identifying barriers and facilitators to mental health through the lived experiences of men and women. Four Focus group discussions conducted in April and November 2023 engaged 28 participants (20 women and eight men) aged between 23 and 60 years from locations in Haiti (Port-au-Prince, Cite Soleil, Cayes, Cap-Haitien, Saint-Marc) and the United States. Discussions revolved around the definition of mental health, stressors, coping mechanisms, risk and protective factors, and barriers to mental health care. Six principal themes emerged: 1- Chronic Traumatic Stress: continued violence, political instability, unemployment, lack of social support, adverse childhood experiences, family separation, and forced displacement were significant sources of stress. 2- Increased Health Burden: Participants reported experiencing chronic physical and psychological symptoms [i.e., hypertension, anxiety, depression, sleep issues, substance abuse, suicidal ideations, characteristics of post-traumatic stress disorder (PTSD)], which were attributed to Haiti's social, political, and infrastructure collapse. 3- Risk Factors: limited access to mental health services, pervasive hopelessness, scarcity of opportunities, and stigma were identified as significant risks. 4- Future Uncertainty: widespread concerns regarding the future predominated. 5- Multigenerational Concerns: Significant anxiety concerning the mental health and development of children, as well as the functionality of mental health practitioners, was noted. 6- Coping and Protective Factors: Effective coping strategies include mental stimulation, peer support, managing digital consumption, engaging in leisurely activities, such as listening to music, and faith/spirituality. The study's findings underscore the sociopolitical and economic crisis in Haiti, which has resulted in violence and a dismantle of political, educational, financial, and health infrastructures. These factors were identified as the primary source of chronic distress, contributing to widespread mental health issues, adverse physical symptoms, and disruption in daily life. The implications for practice, healing, research & policy are discussed.

Evaluating the Effectiveness of Cognitive-Behavioral Play Therapy on Reducing Separation Anxiety in Boys in the First Grade of Primary School

Background: Separation anxiety disorder (SAD) is one of the most common disorders among children's behavioral problems, which leads to disruption in academic performance, social adjustment, family life, and peer relationships. Cognitive-behavioral play therapy (CBPT) is one of the appropriate treatment methods for correcting children's behavioral problems. It is designed for children aged three to eight. Objectives: Considering the importance of controlling separation anxiety in primary school children, the main aim of this research was to assess the effectiveness of CBPT in reducing SAD in boys in the first grade of primary education. Methods: A total of 30 primary school students with SAD were selected and then divided into the experimental group (15 students) and the control group (15 students) to conduct the present study. For the control group, no intervention was performed, but CBPT was done in ten sessions for the experimental group. The level of SAD was evaluated in both groups and then compared with each other before and after the intervention. In addition, the level of SAD in both groups was compared between the pre- and post-study stages to assess the effect of CBPT. The statistical analysis of the results was performed using SPSS software version 24 and using relevant tests at the significance level (α = 0.05). Results: The results showed that the average SAD score before the intervention was equal to 78.84 ± 1.26 for the control group and 78.66 ± 1.28 for the CBPT group. The statistical analysis revealed no significant distinction across these average levels (P = 0.975). After the intervention, the average SAD for the control and experimental groups was 77.50 ± 1.65 and 47.75±0.76, respectively, showing a significant difference between the two values (P < 0.001). Conclusions: Based on the findings, CBPT can reduce SAD in primary school children. Therefore, psychologists and educational counselors of elementary school students can recommend using CBPT to treat some behavioral problems of elementary students.

Memory, Mourning, and the Chilean Constitution

The present paper investigates and provides an account of the feeling of grief evidenced in certain sectors of the Chilean population after the electoral defeat following the constitutional plebiscite of September 2022 in Chile. How can one experience grief at the rejection of a political referendum? We suggest that the experience of grief is importantly related to a loss of life possibilities and disruptions in one’s practical identity. The outpouring of grief experienced by many Chileans at this political loss can be traced to the importance of the constitutional plebiscite for their identities. The grieving process involves a renegotiation, through memory and future oriented imagination, of past, present, and future aspects of one’s practical identity.

Development of a questionnaire to assess the patient perspective regarding challenges in psoriatic arthritis treatment—a mixed-methods study

BackgroundLimited data exist on psoriatic arthritis (PsA) treatment in lower-income regions, particularly from the patient perspective. This study explores the challenges faced by socioeconomically vulnerable PsA patients and the reasons for non-adherence to treatment guidelines. The main objective of the study is to develop a questionnaire to identify the primary challenges in PsA treatment adherence and to analyze its feasibility while simultaneously understanding the target population’s unique characteristics.MethodsWe included PsA patients meeting the Classification Criteria for PsA (CASPAR), excluding those with other overlapping inflammatory diseases. The study, supported by two patient-research partners, began with focus groups to identify treatment challenges, leading to the creation of a 26-item questionnaire. Its reliability was verified using the test-retest method, targeting a percent agreement ≥ 0.8. Then, PsA patients at a rheumatology clinic completed the final survey.ResultsThe study involved 69 PsA patients. The final questionnaire contained 26-questions across five-domains, with a 92.2% agreement rate and an average completion time of 8.3 minutes. Diagnostic delays exceeded a year for 59% of patients and more than two years for 33%. Daily life disruptions affected 43.2% of patients, with 35.3% taking sick leave or retiring. Around 25% waited over 8 weeks for drug approval, and 17.6% required legal intervention to access medication. Drug dispensation issues impacted about 60% of patients. Furthermore, 66.7% lived far from their rheumatologist, with 49% traveling over an hour for appointments. Approximately 30% were unaware of the risks of methotrexatein relation to alcohol consumption and pregnancy.ConclusionsThe questionnaire was feasible and reliable, with its results underscoring patient-centric challenges in PsA management, particularly concerning diagnostic delays and medication access, as well as daily life disruptions and misinformation. These findings emphasize the urgency for healthcare reforms aimed at improving diagnosis efficiency, patient education, and streamlined medication access, emphasizing the need for tailored initiatives to improve the healthcare experience for PsA patients.

Probiotics in the management of radiation-induced oral mucositis.

Oral mucositis is a common and debilitating oral complication in head and neck cancer patients undergoing radiotherapy, resulting in diminished quality of life and potential treatment disruptions. Oral microbiota has long been recognized as a contributing factor in the initiation and progression of radiation-induced oral mucositis (RIOM). Numerous studies have indicated that the radiation-induced oral microbial dysbiosis promotes the occurrence and severity of oral mucositis. Therefore, approaches that modulate oral microbial ecology are promising for the management of RIOM. Probiotics as a relatively predicable and safe measure that modulates microecology have garnered significant interest. In this review, we discussed the correlation between RIOM and oral microbiota, with a particular focus on the efficacy of probiotics in the control of RIOM, in order to provide novel paradigm for the management of this disease.

FP1.10 - Functional Outcomes of a Standard vs Modified Brooke Ileostomy – A Quality of Life Study

Abstract Aim Previous studies have shown that IBD patients with a modified Brooke ileostomy, where there is retention of the ileocolic sphincter, may have improved stoma function by preserving a functional high pressure zone. This study aims to review functional outcomes through a patient-reported quality of life survey. Methods This cohort study was conducted across two sites, one performing Standard Brooke Ileostomy (SBI), and the other Modified Brooke Ileostomy (MBI), as standard practice. Patients with diagnosis of colitis were identified from a prospectively collected database. A stoma activity log and a validated stoma Quality of Life survey (PRATO) was sent, with 23 responses obtained (14 MBI, 9 SBI). Activity log included bag emptying, hours of interrupted sleep, and number of visits to stoma nurse. Results For QoL survey (minimum score 20, max 80), patients with MBI scored higher (mean 55.36), compared to SBI (mean 48.22), (p=0.037). Bag emptying over 24 hours was similar (MBI mean 5.71, SBI mean 5.86), as was bag emptying overnight (MBI mean 1 (range 0-3), SBO mean 1 (range 1-2). MBI patients reported longer mean uninterrupted sleep (7.07 hours vs 5.43 hours (p=0.005)). MBI patients required fewer stoma nurse visits in the first year (mean 5.3, median 5, range 0-13). SBI (mean 10.7, median 10, range 2-33). Conclusion A practice of Modified Brooke Ileostomy has comparable patient reported quality of life outcomes to a standard Brooke Ileostomy and performs better overall in terms of less interruption to sleep and lower disruption of daily life through hospital visits.

A qualitative study of experiences among young adults who increased their cannabis use during the COVID-19 pandemic

BackgroundYoung adults face unique vulnerabilities during major life disruptions like the COVID-19 pandemic. The pandemic contributed to increases in mental health challenges and substance use among young adults. This study explores the experiences of young adults who increased their cannabis use during the pandemic.MethodsParticipants were recruited from the Nicotine Dependence in Teens (NDIT) study, and qualitative data were collected through semi-structured interviews conducted via Zoom. A total of 25 participants (ages 33–34) reporting increased cannabis use during the pandemic were included. Thematic analysis and gender-based analysis was employed to extract key themes.ResultsFive themes emerged: (1) No disruption in cannabis use; (2) Cannabis use to manage declines in mental health; (3) Cannabis use to break up pandemic boredom; (4) Cannabis use as an expression of freedom; (5) Cannabis use as “another way to chill out.”ConclusionsThis research provides valuable perspectives on how major life disruptions, like the COVID-19 pandemic, influence cannabis use among young adults. The findings offer guidance for public health initiatives and highlight avenues for further investigation.

Occupational Stress in United Kingdom Audiologists.

Occupational stress is known to have detrimental effects on health care professionals worldwide. This study aimed to address a research gap by investigating sources and levels of occupational stress in U.K. audiologists. A mixed-methods cross-sectional design and convenience sampling were utilized. The study used the Audiologist Occupational Stress Questionnaire (AOSQ) and an audiological working practices questionnaire. The study included 100 registered U.K. audiologists. The research revealed that over a third of participants reported experiencing moderate or higher levels of occupational stress. Pediatric audiologists and those with a high daily patient load reported significantly higher stress scores than other specialties and those seeing fewer patients per day. Identified sources of stress for U.K. audiologists included clinical demands and time constraints, staffing issues, leadership in the workplace, and equipment availability. Reported impacts of stress encompassed mental health issues, fatigue, social life disruptions, and physical health concerns. The research validated the use of the AOSQ in a U.K. setting, and the findings provided insights into the sources and levels of occupational stress experienced by U.K. audiologists, supporting existing research on occupational stress in audiologists in other countries. The identification of consistent stress themes across the literature underscores the need for targeted support and interventions to ensure the well-being of audiologists and empower them in maintaining their pivotal role in health care.

Asserting the Right to New Cities: Farmers’ (re)claiming Space in New Clark City

New cities, often designed as development strategies, cause dispossession, displacement, and disruption of everyday lives of local communities. To further explore the effects of new cities and urban development in the Global South, this study explores the realities of farmers whose homes and livelihoods are affected by the construction of New Clark City in the Philippines. Employing the concept of the right to the city by Henri Lefebvre, this study delves into the farmers' agency in reclaiming space in the city being built on their rice fields. Through qualitative research methods, including interviews and participant observation, the study elucidates the strategies employed by farmers to assert their right to New Clark City. Highlighting that (re)claiming of space by the farmers is motivated by their need to make a living and provide for their families, the study builds on the understanding of the right to the city as the right of the inhabitants to shape their environment and manage their resources. Although the right to the city heavily depends upon the collective power to reshape the process of urbanization, the article argues that it can also be asserted through individual and unorganized actions.

Deterioration of people with Parkinson’s symptoms during COVID-19 lockdown: results of a web-based survey in Northwestern Italy

Objectives COVID-19 lockdowns were introduced to control the pandemic, however, they resulted in a global disruption of daily life and of individual and global health. Reduced accessibility of health services, unavailability of food and drugs, and mental health challenges had a huge impact on older people and on people living with disabling conditions such as Parkinson’s disease (PD). We assessed whether and to what extent the more disabled and vulnerable people with Parkinson’s (PwP) were affected by lockdowns. Method We analysed responses collected through a web-based survey of PwP according to their self-sufficiency [self-sufficient (SS); nearly self-sufficient (nSS); non-self-sufficient, cared for by family (NSS/F); non-self-sufficient, needs professional care (NSS/PC)]. Results Fears due to COVID-19 and difficulties with food supply were highest in NSS/F PwP. Difficulties with the supply of Parkinson’s medication or other drugs were apparently not an issue, while problems accessing primary care physicians and neurologists were similar across all patient groups. On the contrary, difficulties with daily and motor activities were higher in NSS/F and NSS/PC PwP. PwP symptoms worsened in all groups, with NSS/F and NSS/PC participants experiencing the worst deterioration. Notably, the deterioration of PwP symptoms was specifically related to changes in daily and motor activities, with participants who reported less engagement in daily and motor activities experiencing the worst deterioration. Conclusion Findings strongly support the need for decision-makers and healthcare providers to carefully re-evaluate the risk–benefit ratio of limiting healthcare accessibility for PwP, since evidence shows that lockdown measures primarily impact the groups who are most fragile and vulnerable.

A sense of injustice in care networks: An intersectional exploration of the collaboration between professionals and carers with a migration background.

This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.