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Surgically repaired esophageal atresia (EA) is associated with chronic esophageal and respiratory morbidity that require ongoing management. The care of chronically ill children can exert considerable stress on parents, thereby potentially affecting their mental well-being. In response to this, disease-specific support groups have emerged with the aim to bring together individuals facing similar challenges, facilitating the exchange of experiences within a nurturing environment, and providing essential emotional support. In the context of this international collaborative study, we investigated the role played by EA-specific support groups in promoting the emotional well-being of EA families. An anonymous online survey was distributed through a network comprising 12 international EA support groups affiliated with the Federation of Esophageal Atresia and Tracheoesophageal Fistula (EAT) during May and August of 2022. In the study, 96 parents from 23 different countries completed the survey. Fifty-six percent indicated a lack of interaction with other EA families during the initial diagnosis, with 91% expressing the belief that such contact would have been beneficial. Participants exhibited a unanimous recognition of the critical role played by disease-specific support groups in navigating the emotional journey associated with EA. Conclusion: The findings of this global survey align with existing literature, reaffirming the beneficial impact of disease-specific support groups tailored for EA patients and their families on their emotional well-being. These groups provide a valuable platform for the exchange of personal experiences and narratives, delivering advantages to both those who share their stories and those who receive this valuable information. What is Known: • Parents are exposed to several stressors during the neonatal period. • Emotional well-being of EA families is important. What is New: • EA support groups play a valuable role in the emotional well-being of EA families. • Family-centered care of neonates should also include older siblings of neonates in NICU. [ABSTRACT FROM AUTHOR]

Objective Data Sources, Study Setting Study Design Data Collection/Extraction Methods Principal Findings Conclusions Evaluate whether cost‐sharing decreases led high‐deductible health plans (HDHP) enrollees to increase their use of healthcare.National sample of chronically‐ill patients age 18–64 from 2018 to 2020 (n = 1,318,178).Difference‐in‐differences analyses using entropy‐balancing weights were used to evaluate the effect of a policy shift to $0 cost‐sharing for telehealth on utilization for HDHP compared with non‐HDHP enrollees. Due to this shock, HDHP enrollees experienced substantial declines in cost‐sharing for telehealth, while non‐HDHP enrollees experienced small declines. Event study models were also used to evaluate changes over time.Outcomes included use of any outpatient care; use of $0 telehealth; use of $0 telehealth as a proportion of all outpatient care; and use of any telehealth. To test whether any differences were due to preferences for care modality versus cost‐sharing, we further evaluated use of non‐$0 telehealth as a placebo test.There was no difference in change in overall outpatient visits (p = 0.84), with chronicall‐ill HDHP enrollees using less care both before and after the policy shift. However, compared with non‐HDHP enrollees, HDHP enrollees increased their use of $0 telehealth by 0.08 visits over a 9‐month period, a 27% increase (95% CI 0.07–0.09, p < 0.001) and shifted 1.2 percentage points more of their care to $0 telehealth, a 15% increase (ß = 0.01, 95% CI 0.01, 0.01, p < 0.001). However, HDHP enrollees had lower uptake of non‐$0 telehealth than non‐HDHP enrollees (ß = −0.01, 95%CI −0.02, 0.00, p = 0.04).Recent‐but‐expiring federal legislation exempts telehealth from HDHP deductibles for care provided in 2023 and 2024. Our results indicate that extending the protections provided by this legislation could help reduce the gap in access to care for chronically‐ill persons enrolled in HDHPs. [ABSTRACT FROM AUTHOR]

Physicians, patients, and families alike perceive a need to improve how goals of care (GOC) decisions occur in chronic critical illness (CCI), but little is currently known about this decision-making process. How do intensivists from various health systems facilitate decision-making about GOC for patients with CCI? What are barriers to, and facilitators of, this decision-making process? We conducted semistructured interviews with a purposeful sample of intensivists from the United States and Canada using a mental models approach adapted from decision science. We analyzed transcripts inductively using qualitative description. We interviewed 29 intensivists from six institutions. Participants across all sites described GOC decision-making in CCI as a complex, longitudinal, and iterative process that involved substantial preparatory work, numerous stakeholders, and multiple family meetings. Intensivists required considerable time to collect information on prior events and conversations, and to arrive at a prognostic consensus with other involved physicians prior to meeting with families. Many intensivists stressed the importance of scheduling multiple family meetings to build trust and relationships prior to explicitly discussing GOC. Physician-identified barriers to GOC decision-making included 1-week staffing models, limited time and cognitive bandwidth, difficulty eliciting patient values, and interpersonal challenges with care team members or families. Potential facilitators included scheduled family meetings at regular intervals, greater interprofessional involvement in decisions, and consistent messaging from care team members. Intensivists described a complex time- and labor-intensive group process to achieve GOC decision-making in CCI. System-level interventions that improve how information is shared between physicians and decrease logistical and relational barriers to timely and consistent communication are key to improving GOC decision-making in CCI. [ABSTRACT FROM AUTHOR]

AbstractObjectiveMethodResultsConclusion\nHIGHLIGHTSThere is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population.A cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors.42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors.Parent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.This is the first dedicated study of suicide risk in parent carers.More than 40% of parents had considered suicide while caring for a disabled or chronically ill child.The risk factors for suicidal ideation in parent carers were depression, entrapment, dysfunctional coping strategies, and having a mental health diagnosis prior to becoming a carer.Parent carers may be a high-risk group for suicide and need urgent support. [ABSTRACT FROM AUTHOR]

Background Aim Methods Findings Conclusion Family caregivers have a vital role to play in palliative care for chronically ill patients. In Taiwan, caregiver demographics are evolving, with the number of male caregivers increasing. Gender differences influence psychosocial behaviours, thought processes and communication styles. In healthcare, acknowledgement of gender differences facilitates effective delivery of high‐quality care.The aim of this study is to explore male caregivers' decision‐making process for palliative care for chronically ill family members.This study employed grounded theory to generate a substantive theory of male caregivers' decision‐making process for palliative care for chronically ill family members. We recruited 22 male participants from three inner‐city teaching hospitals in Taiwan.Regarding the decision‐making process of palliative care of chronic ill family, where male caregivers do not want their loved ones suffering anymore, the male caregivers' decision‐making process was impacted, first, by caregivers' views on the last stage of life; second, by their wish for good care during the end of life; and third, by their conviction that the patients' wishes should be respected. Furthermore, caregivers' philosophy of life and death is also a supportive ground for decision‐making. This philosophy was influenced by their education in palliative care, financial status and religious beliefs and practices. The core category emerging from this study is encapsulated by a participant's assertion, ‘How difficult is it? There are no male and female differences’.We found that palliative care experiences of male caregivers are important for the decision‐making process for palliative care for their chronically ill family members. Caregivers want their loved ones to receive good care as the last step in life, to respect their wishes and no more suffering for the patient. Therefore, health professionals should be familiar with the palliative care process that caregivers go through to offer updated information when needed. [ABSTRACT FROM AUTHOR]

Background: To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease (COPD)), it is imperative that care is of high quality and suitable to patients' needs. Patients with intellectual disabilities (ID) differ from the average patient population in general practice because of their limitations in adaptive behaviour and intellectual functioning, and concomitant difficulties recognising and reacting to disease symptoms, proactively searching health information, and independently managing diseases effectively. Because of these differences, information on their care needs is essential for suitable chronic disease management (CDM). Inadequate recognition of the care needs of this vulnerable population may hamper the harmonisation of evidence-based and person-centred care, compounded by issues such as stigma, misconceptions, and diagnostic overshadowing. This study therefore aimed to explore the needs of patients with ID from perspectives of both patients and of healthcare providers (HCPs) in the context of CDM in general practice. Methods: This qualitative study recruited patients with ID for face-to-face individual interviews and HCPs for focus groups. With the Chronic Care Model as the underlying framework, semi-structured interviews and focus-group guides were defined to explore patients' care needs and HCPs' perspectives. All interviews and focus groups were audio-recorded and transcribed verbatim. Using Atlas.ti software, data were analysed using reflexive thematic analysis. Results: Between June and September 2022, 14 patients with ID and cardiovascular disease, diabetes mellitus type 2, and/or asthma/COPD were interviewed; and 32 general practitioners and practice nurses participated in seven focus groups. We identified six care needs underpinning suitable CDM: trusting relationship between patient and HCP; clear expectations about the CDM process; support in disease management; directive decision-making; support in healthy lifestyle; accessible medical information. Conclusions: This vulnerable patient population has complex care needs that must be acknowledged for suitable CDM. Although HCPs largely recognise these needs, organisational factors and lack of training or experience with patients with ID hamper HCPs' ability to fully adjust care provision to these needs. Access to, and knowledge of, easy-language information on chronic diseases and communication guidelines could aid HCPs to facilitate patients in managing their diseases more adequately. [ABSTRACT FROM AUTHOR]

Introduction: People living with HIV (PLWH) live longer and face new health challenges resulting from the confluence of chronic HIV infection and the natural effect of aging and comorbidities. However, there is a dearth of information on the long-term impact of HIV infection on the health and wellbeing of PLWH in sub-Saharan Africa. This research aimed to fill this gap by reporting on physical, functional and social outcomes among PLWH treated at a referral center in Abidjan, Ivory Coast, and comparing them with those of a control group. Methods: Body composition, functional capacity, sarcopenia, limitations in daily activities and social participation were assessed among 300 PLWH (aged ≥ 30 years) and 200 uninfected adults of similar age and sex. The associations between these outcomes and participants' socioeconomic characteristics, HIV history and physical activity level were assessed using generalized additive models adjusted for age and sex. Results: The median age was 51 years, and the median antiretroviral therapy duration was 15 years. Compared to controls, PLWH reported higher levels of physical activity (p < 0.0001). They had a lower muscle index (adjusted p < 0.0001) and grip strength (adjusted p < 0.0001) but achieved similar performance on the 6-min walk test (6MWT, p = 0.2). Among PLWH, physical activity level was positively associated with better performance in the 6MWT (p = 0.006) and greater hand grip strength (p = 0.04). The difference in physical performance according to the level of physical activity appeared mainly after the age of 60. PLWH reported similar rates of activity limitations (p = 0.8), lower depression levels and greater scores for social functioning (p = 0.02). Conclusion: In this study, PLWH achieved high levels of physical activity, which may explain why they maintained good physical performance and social functioning despite having a higher risk of sarcopenia. These results have important implications for resource-limited health systems and show avenues for chronic care models. Trial registration: This study was registered on the ClinicalTrials.gov website (NCT05199831, first registration the 20/01/2022). [ABSTRACT FROM AUTHOR]

Objectives: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs' psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs' lived experiences. Methods: We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews. Results: AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences. Significance of the results: Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences. [ABSTRACT FROM AUTHOR]

Background: In face of demographic challenges and increasing needs, primary care in Germany could be guaranteed and even expanded by integration of further health professions. Current practice and core principles of family medicine must be included. Objective: With the help of multifarious professional perspectives, the aim was to develop a model for an interprofessional primary care center in Germany (HÄPPI). Materials and methods: In nine workshops, a multiprofessional working group of the Baden-Wuerttemberg Association for General Practice/Family Medicine developed the HÄPPI model. In 2023, nine interviews (45–60 min) with stakeholders and various health professions (attorney, medical assistant, medical insurance representative, general practitioner, nurse, physician assistant, social worker, physician specialist) were conducted to explore principles of successful collaboration in an interprofessional primary care (IPPC) team. Results: An IPPC team could expand primary care, foster patient-centered care, and improve care for the chronically ill. Challenges are seen especially in documentation, organization of team collaboration, and framework conditions such as imbursement and legal restrictions. Helpful approaches include standardized documentation and continuous team-oriented communication. By inclusion of these interview results, the aims and scopes of HÄPPI were identified and formulated and the HÄPPI model was summarized in a short and long version. Conclusion: A future-oriented and feasible model for primary care in Germany could be described at the end of a semistructured iterative process, which could be implemented in a stepwise manner. Integration of further health professions offers various opportunities and requires sufficient team collaboration and IT support, as well as leadership and change-management skills. [ABSTRACT FROM AUTHOR]

This article discusses the economic evaluations of treatments for Duchenne Muscular Dystrophy (DMD) and the impact on caregivers. Unpaid family caregivers play a significant role in the long-term care of chronically ill patients, but this can lead to adverse health effects for the caregivers. Caregiving for DMD patients is associated with reduced quality of life, financial burden, and other negative impacts. Historically, caregiver burden has not been included in economic evaluations of new therapies, but some countries are now recommending its inclusion. However, there is a trade-off between extending the patient's life and reducing the caregiver's burden, leading to a phenomenon called the "caregiver QALY trap." The article suggests solutions to manage this trap, such as modeling a bereavement effect and considering treatment and disease stage-specific caregiver utilities. Decision makers should be aware of this trap when evaluating the cost-effectiveness of life-extending treatments for DMD. Ongoing research is needed to better understand caregiver utilities after the death of their children with DMD. Overall, economic evaluations should consider the impact on caregivers to ensure efficient resource allocation for rare neuromuscular diseases like DMD. [Extracted from the article]

The global COVID-19 pandemic forced changes in everyday life of children and adolescents due to government containment measures, an altered healthcare accessibility and utilization, and public concern about SARS-CoV-2 transmission. Data on the challenges and impact on children and their families with chronic diseases are limited. The primary objectives of this study were to assess (i) concerns for SARS-CoV-2 infection, (ii) perceived effects on health-related and overall quality of life (HRQoL and QoL), and (iii) accessibility and utilization of healthcare, comparing families with chronically ill children to families with healthy children during the second SARS-CoV-2 infection wave in Germany. A caregiver questionnaire was designed and participation offered in the emergency department and outpatient clinic of a German tertiary care children's hospital. 45.9% of the 205 participants were majorly concerned about their children contracting a SARS-CoV-2 infection. Caregivers of chronically ill children (128/205, 62.4%) stated significantly more often a negative impact on their child's QoL (w = 0.17; p = 0.014), while caregivers of chronically ill adolescents over the age of 13 expressed significantly more frequent a negative impact on their child's HRQoL (w = 0.21; p = 0.016). Outpatient appointments for chronically ill children were significantly more often canceled (w = 0.17; p = 0.025). Caregivers of chronically ill children were significantly more likely to report that they would actively delay hospital visits for emerging health issues due to the pandemic (w = 0.12; p = 0.049). Conclusion: Our findings underscore the importance of identifying families with chronically ill children as a vulnerable patient group with higher burdens during the COVID-19 pandemic and potential future pandemics. Healthcare providers may mitigate such burdens by ensuring reliable appointment allocation, offering contactless healthcare options, and providing tailored advice regarding vulnerabilities and preventive measures specific to their chronically ill children. What is Known: • The SARS-CoV-2 pandemic has led to significant restrictions in everyday life and both accessibility and utilization of healthcare for children and adolescents. • Chronically ill children faced exceptional challenges as they depend on regular and functioning medical care, but data comparing the pandemic's impact between chronically ill and healthy children are lacking. What is New: • The perceived impact of the SARS-CoV-2 pandemic on quality of life is more negative for chronically ill children and their health-related quality of life is more often affected compared to healthy children. • Caregivers of chronically ill children would more often delay a visit to their child's doctor during the SARS-CoV-2 pandemic and their medical appointments are more often postponed which both could increase health burdens for such vulnerable patients. [ABSTRACT FROM AUTHOR]

Since their inception, small area studies intended to measure health system performance have been challenged by concerns that regional variation in health care may be primarily explained by differences in patient health risk. Controlling for regional population differences depends on appropriate risk adjustment, but the adequacy of the methods used in early analyses was contested. A novel response to these concerns was the development of end-of-life cohorts by Dartmouth Atlas investigators. These were used initially to control for differences in population health status in studies investigating relative efficiency across regions. Later, they became useful for studying hospital-level variation in chronic illness care, and for measuring utilization and patient experiences at the very end of life. Altogether, end-of-life cohorts have been invaluable for clarifying the contribution of health system and provider factors to health care variation and outcomes. [ABSTRACT FROM AUTHOR]

Background: Sustaining evidence-based practices (EBPs) is crucial to ensuring care quality and addressing health disparities. Approaches to identifying factors related to sustainability are critically needed. One such approach is Matrixed Multiple Case Study (MMCS), which identifies factors and their combinations that influence implementation. We applied MMCS to identify factors related to the sustainability of the evidence-based Collaborative Chronic Care Model (CCM) at nine Department of Veterans Affairs (VA) outpatient mental health clinics, 3–4 years after implementation support had concluded. Methods: We conducted a directed content analysis of 30 provider interviews, using 6 CCM elements and 4 Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) domains as codes. Based on CCM code summaries, we designated each site as high/medium/low sustainability. We used i-PARIHS code summaries to identify relevant factors for each site, the extent of their presence, and the type of influence they had on sustainability (enabling/neutral/hindering/unclear). We organized these data into a sortable matrix and assessed sustainability-related cross-site trends. Results: CCM sustainability status was distributed among the sites, with three sites each being high, medium, and low. Twenty-five factors were identified from the i-PARIHS code summaries, of which 3 exhibited strong trends by sustainability status (relevant i-PARIHS domain in square brackets): "Collaborativeness/Teamwork [Recipients]," "Staff/Leadership turnover [Recipients]," and "Having a consistent/strong internal facilitator [Facilitation]" during and after active implementation. At most high-sustainability sites only, (i) "Having a knowledgeable/helpful external facilitator [Facilitation]" was variably present and enabled sustainability when present, while (ii) "Clarity about what CCM comprises [Innovation]," "Interdisciplinary coordination [Recipients]," and "Adequate clinic space for CCM team members [Context]" were somewhat or less present with mixed influences on sustainability. Conclusions: MMCS revealed that CCM sustainability in VA outpatient mental health clinics may be related most strongly to provider collaboration, knowledge retention during staff/leadership transitions, and availability of skilled internal facilitators. These findings have informed a subsequent CCM implementation trial that prospectively examines whether enhancing the above-mentioned factors within implementation facilitation improves sustainability. MMCS is a systematic approach to multi-site examination that can be used to investigate sustainability-related factors applicable to other EBPs and across multiple contexts. [ABSTRACT FROM AUTHOR]

The quality of care for the chronically ill is to be improved through interprofessional cooperation (IPC). To date, evaluation projects on IPC have mostly focused on the inpatient sector. The aim was to use a multiple case study design to investigate forms of IPC in primary care and to identify facilitating and inhibiting factors. Factors that facilitated the implementation of IPC included having a responsible person employed to provide the service, supportive training, and the introduction of evidence-based interventions. There appeared to be insufficient incentives to implement IPC and the needs of the chronically ill were poorly integrated. More systematic evaluation of IPC initiatives is needed to demonstrate their added value. Greater integration of patient needs is key. [ABSTRACT FROM AUTHOR]

Background: The ability to predict the prognosis of a disease and anticipate death is valuable for patients and families especially in an acute care setting for chronically ill patient. Multiple scoring systems are used to measure disease progression and predict hospital mortality in patients with life-threatening illnesses, taking into account acute conditions, catastrophic events, and slow decline. Aim: Our primary aim is to assess palliative performance score (PPS), early warning score (EWS) and local rumah sakit Dr Hasan Sadikin (RSHS) score to predict 14 days in-hospital mortality. Methods: This was a single-center prospective cohort study from November 2022 to April 2023. Patients with World Health Organization category of terminal illnesses were scored using PPS, EWS and RSHS score and were followed up for 14 days in hospital. Multivariate analysis were conducted and The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines were used. Results: A multivariable model was calculated using Cox regression. The final model results indicate that EWS (HR: 2.9, 95% CI: 1.1– 7.7) and a decrease in consciousness (HR: 3.6, 95% CI: 1.2– 10.22) were statistically significant in predicting mortality. Discussions: Most patient in the cohort that died had cancer and were admitted in the previous 6 months. Relying solely on single prediction may not provide enough accuracy, within a 14-day timeframe. Therefore, the results of multivariate analysis were not statistically significant due to Several factors contribute to the complexity of this prediction challenge. As a multifaceted disease with varying stages, treatments, and outcomes, cancer presents a diverse landscape of patient experiences. Conclusion: EWS and decreased consciousness are significant predictors of in-hospital mortality. It is crucial in clinical setting to use multiple indicators to predict death and improve patient care. [ABSTRACT FROM AUTHOR]

Objectives: Airway clearance interventions are recommended for people with chronic lung conditions and mucus hypersecretion, but there are few published models of care or descriptions of airway clearance service provision. This evaluation describes a dedicated, physiotherapy-led, community-based airway clearance service in a metropolitan local health network. Design: Retrospective evaluation using existing airway clearance service administrative database. Participants: All first referrals to the airway clearance service in a 5-year period (1/1/2017 to 31/12/2021). Main outcome measures: Available service data grouped into four domains: participant demographics, referral demographics, service provision and outcomes. Results: Of the 1335 first referrals eligible for inclusion, 1157 (87%) people attended. Bronchiectasis was the commonest condition (n = 649/1135, 49%). A total of 2996 occasions of service (face to face clinic n = 2108, 70%, phone n = 736, 25%, telehealth n = 99, 3%, home visit n = 53, 2%) were delivered. Airway clearance devices frequently prescribed were the Aerobika (525/1157, 45%), bubble-positive expiratory pressure (263/1157, 23%) and the Acapella (127/1157, 11%). On average, initial appointment with the airway clearance service occurred within 36 days of referral and people attended the service three times. Individuals voluntarily completed both pre/post service questionnaires around a third of the time. At least half of responders reported an improvement in respiratory symptom outcome measures consistent with the minimum clinically important difference. Conclusions: This evaluation describes an airway clearance service as it exists, providing an example from which airway clearance services can be planned, implemented and improved. [ABSTRACT FROM AUTHOR]

Background: Increasing proportions of geriatric patients pose tremendous challenges for our society. Developments in assistive technologies have the potential to support older and frail people in aging and care. To reach a sustainable adoption of these technologies, the perceptions and wishes of future users must be understood. In particular, the relationships between individual health-related factors, and the perceptions of aging and using assistive technologies in severe health situations must be empirically examined. Methods: Addressing this research gap, our quantitative study (N = 570) investigates the impact of diverse future users' age and health status on their a) perceptions of aging, b) perceptions and acceptance of using assistive technologies in aging and care, as well as c) end-of-life decisions regarding technology usage. For this, four groups were segmented for the comparison of younger (< 50 years) healthy, younger chronically ill, older (50 + years) healthy, and older chronically ill participants. Results: The results revealed that health status is more decisive for age-related perceptions compared to age. The technology-related perceptions were slightly impacted by either chronological age or health status. The end-of-life decisions showed the most striking differences in the willingness to use assistive technologies, revealing older chronically ill participants to have more restrained attitudes towards technology usage than older healthy as well as all younger participants. Conclusions: The findings suggest that the benefits of assistive technologies in private or professional care contexts should be communicated and implemented tailored to the respective user group's needs. Moreover, the results allow us to derive practical implications within the geriatric care context. [ABSTRACT FROM AUTHOR]

To describe the experiences of multi-professional teams of implementation of group-based adaptation training intervention for patients with chronic somatic illnesses or disabilities in specialized healthcare. Multi-professional teams (n = 7) implementing adaptation training courses for chronically ill patients in specialised healthcare were interviewed between 09/2020 and 12/2021. The themes for thematic group interviews were based on the standard protocol implementation of adaptation training in specialised healthcare, including planning, implementation and evaluation of the adaptation training courses. The interviews were audio-recorded and transcribed. The data were analysed using inductive content analysis. The experiences of multi-professional teams involved using pedagogical methods, providing guidance and counselling to support the rehabilitation process, ensuring opportunities for peer support, and supporting the course participants' involvement and activities in everyday life. Healthcare professionals should use pedagogical methods in reflective guidance and counselling to promote client-oriented approach in supporting adaptation. Their competence in pedagogy needs to be build and maintained by continuous education. Multi-professional teams need to ensure sufficient and versatile conditions for peer support and involvement of family members by creating open and trusting atmosphere, unhurried encounters, discussions, different and varying ways of working. Adaptation training can strengthen the self-efficacy of participants and help them shift their attention from illness and disability to thoughts of the future. Adaptation training can support active and meaningful daily life in a changed life situation. Pedagogical methods are useful in multi-professional group rehabilitation interventions. Multi-professionalism is essential to providing meaningful guidance and counselling to support the rehabilitation process of patients with long-term illnesses and disabilities. Application of provided knowledge and counselling to everyday life as well as the involvement of family members and taking advantage of the possibilities of peer support, enables active agency in daily life and rehabilitation. [ABSTRACT FROM AUTHOR]

Vaccines against COVID-19 and influenza are highly recommended for the chronically ill. They often suffer from co-morbid mental health issues. This cross-sectional observational study analyzes the associations between depression (PHQ-9) and anxiety (OASIS) with vaccination readiness (5C) against COVID-19 and influenza in chronically ill adults in primary care in Germany. Sociodemographic data, social activity (LSNS), patient activation measure (PAM), and the doctor/patient relationship (PRA) are examined as well. Descriptive statistics and linear mixed-effects regression models are calculated. We compare data from n = 795 study participants. The symptoms of depression are negatively associated with confidence in COVID-19 vaccines (p = 0.010) and positively associated with constraints to get vaccinated against COVID-19 (p = 0.041). There are no significant associations between symptoms of depression and vaccination readiness against influenza. Self-reported symptoms of a generalized anxiety disorder seem not to be associated with vaccination readiness. To address confidence in COVID-19 vaccines among the chronically ill, targeted educational interventions should be elaborated to consider mental health issues like depression. As general practitioners play a key role in the development of a good doctor/patient relationship, they should be trained in patient-centered communication. Furthermore, a standardized implementation of digital vaccination management systems might improve immunization rates in primary care. [ABSTRACT FROM AUTHOR]

With medical advancements and improvements in medical technology, an increasing number of children with chronic conditions survive into adulthood. There is accordant growing interest toward supporting adolescents throughout the transition from paediatric to adult care. However, there is currently a paucity of research focusing on the role that these patients' parents should play during and after the transition to adult care and if maintained parental involvement is beneficial during this transition within a North American context. Accordingly, this scoping review utilized Arksey and O'Malley's five-step framework to consider parental roles during chronically ill children's transition to adult care. APA PsycInfo, CINAHL, EMBASE, MEDLINE, ProQuest, and Scopus were searched alongside advanced Google searches. Thematic content analysis was conducted on 30 articles meeting the following inclusion criteria: (1) published in English between 2010 and 2022, (2) conducted in Canada or the United States, (3) considered adolescents with chronic conditions transitioning to adult care, (4) family being noted in the title or abstract, and (5) patient populations of study not being defined by delays in cognitive development, nor mental illness. Three themes emerged from the literature: the impacts of maintaining parental involvement during transition to adult care for patients, parents experiencing feeling loss of stability and support surrounding the transition of their child's care, and significant nonmedical life events occurring for youths at the time of transition of care. Parents assuming supportive roles which change alongside their maturing child's needs were reported as being beneficial to young peoples' transition processes, while parents who hover over or micromanage their children during this time were found to hinder successful transitions. Ultimately, the majority of reviewed articles emphasized maintained parental involvement as having a net positive impact on adolescents' transitions to adult care. As such, practice and policies should be structured to engage parents throughout the transition process to best support their chronically ill children during this time of change. [ABSTRACT FROM AUTHOR]

Objective: Transcultural adaptation and validation of FACIT-TS-PS questionnaire to Serbian language. Methods: Standard forward and backward translation from English to Serbian language was performed. Pilot testing of FACIT-TS-PS was conducted on 12 patients with a confirmed diagnosis of malignant tumor. The study included 154 patients with malignant disease. The Questionnaire of Patient Satisfaction was used as a validated tool to evaluate concurrent validity of FACIT-TS-PS questionnaire. Reproducibility was tested on 30 subjects who answered the questionnaire for the second time two weeks later. Results: Three FACIT-TS-PS subscales (Physician Communication, Treatment Staff Communication and Nurse Communication) demonstrated satisfactory construct validity using Cronbach's alpha, the remaining two subscales (Technical Competence and Confidence & Trust) showed high ceiling effect. Treatment Staff Communication subscale showed large floor effect. Concurrent validity was demonstrated by correlation with the two dimensions of the Questionnaire of Patient Satisfaction. Satisfactory reproducibility was demonstrated on 30 patients who filled the questionnaire for the second time two weeks after initial interview. Conclusion: The Serbian version of FACIT-TS-PS with the omission of Treatment Staff Communication subscale could be used as a valid instrument to assess patient and treatment satisfaction in chronically ill patients in the Serbian population. Omission of Treatment Staff Communication subscale is necessary because it contains questions not relevant for patients in Serbian healthcare system. [ABSTRACT FROM AUTHOR]

Background: Demographic change and the rise of diabetes mellitus are leading to a projected increase in the prevalence of chronic wounds. People suffering from chronic wounds experience significant losses in their health-related quality of life. Health systems struggle to meet the needs of these persons, even in high-income countries. This paper explores wound nurses' perspectives on their professional practice in Austria. They play a key role as they do much of the treatment work, contribute to advancing the field, and enable interprofessional coordination. Their perspectives enable insights into how a health system provides care for elderly and chronically ill people. Methods: We used the Constructivist Grounded Theory framework to analyse transcripts of 14 semi-structured qualitative interviews with nurses who work in different treatment settings. Results: We identified three themes. Firstly, the interviewees characterise working with patients as a balancing act between offering enough support to build a trustful relationship while protecting themselves against the overwhelming situation of caring for a chronically ill person. Secondly, the interviewees compensate for nonexistent care pathways by building informal networks with doctors, which requires delicate relationship work. Thirdly, the study participants must prove their competence in every new professional encounter. Their need for professional autonomy clashes with the traditional doctor-nurse hierarchy. Based on these insights, we propose a grounded theory that conceives of nursing practice in terms of 'acts of negotiations'. Conclusion: Our results demonstrate that wound nurses in Austria operate in an institutional environment whose outdated imagination of the nursing role is at odds with the care demands that arise from a growing number of elderly and chronically ill people. We detailed the 'acts of negotiation' nurses deploy to compensate for this situation. We identify areas for policy intervention to strengthen the autonomy of wound nurses, including access to statutory health insurance billing. [ABSTRACT FROM AUTHOR]

End-of-life doulas provide support to the chronically ill, dying, and their families. However, little is known about the roles and services of doulas practicing in the United States. The purpose of the current study is to gain understanding of the roles and experiences of death doulas in the United States. The current study used concurrent triangulation mixed methods design combining survey data with video and audio file submissions from end-of-life doulas. The survey included demographics information, a questionnaire about the roles, services, and training of doulas, and the Professional Quality of Life Scale. There were 74 (77.08%) complete responses from doulas practicing in the United States. Doulas shared about the types of services offered and professional roles they filled in work with the dying and their families. Many doulas offered hybrid or virtual services in addition to in-person care. Many worked at least partially on a volunteer basis. Professional Quality of Life Scales indicated a high level of compassion satisfaction, a low level of burnout, and a low level of secondary trauma. In the complex healthcare system of the United States, end-of-life doulas offer valuable interpersonal services like legacy and grief work as well as practical services like financial and logistical end-of-life planning. [ABSTRACT FROM AUTHOR]

Background: Pensioners of Turkish origin residing in Germany often engage in circular migration between the two countries, thereby experiencing discontinuities in prescribed medication and medical care for chronic diseases, with the risk of deteriorating health status. So far, discontinuities in prescriptions and care have not been analyzed quantitatively. Methods: Routine data of elderly chronically ill Turkish-origin members of a German statutory health insurance scheme were analyzed for discontinuities in prescriptions and care compared to non-Turkish members. The study was based on data on bronchial asthma, diabetes mellitus, hypertension, and coronary heart disease from the AOK Rhineland/Hamburg from 2012-2018. Results: Discontinuities in prescribed medication and general care were significantly more frequent among Turkish than non-Turkish persons for several chronic diseases. Particularly for diabetes mellitus and bronchial asthma, Turkish persons had high odd ratios for discontinuities. Discontinuities tended to occur less frequently among Turkish persons aged 60-64 years compared to those of retirement age. Conclusion: A relevant proportion of Turkish persons show healthcare disparities. Comparing the pattern of discontinuities among groups, age, and disease, circular migration seems a likely cause. Family physicians in Germany need to be aware of circular migration patterns. They should address longer stays in Turkey as one possible reason for irregular medication and health care early, to prevent inadequate care. [ABSTRACT FROM AUTHOR]

Copyright of Online Turkish Journal of Health Sciences (OTJHS) / Online Türk Sağlık Bilimleri Dergisi is the property of Oguz KARABAY and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Positive end-expiratory pressure (PEEP) consists of the delivery of a constant positive pressure in the airways by means of a noninvasive interface aiming to maintain airway patency throughout the entire respiratory cycle. PEEP is increasingly used in the chronic care of children with anatomical or functional abnormalities of the upper airways to correct severe persistent obstructive sleep apnea despite optimal management which commonly includes adenotonsillectomy in young children. PEEP may be used at any age, due to improvements in equipment and interfaces. Criteria for CPAP/NIV initiation, optimal setting, follow-up and monitoring, as well as weaning criteria have been established by international experts, but validated criteria are lacking. As chronic PEEP is a highly specialised treatment, patients should be managed by an expert pediatric multidisciplinary team. [ABSTRACT FROM AUTHOR]

Over 41 million people die of chronic non-communicable diseases (CNCDs) each year, accounting for 71% of all global deaths. The burden of CNCD is specifically a problem in sub-Saharan Africa (SSA) since CNCDs are largely a leading major cause of mortality in the sub-region. While the disease burden and mortality from chronic non-communicable diseases (CNCDs) have reached an epidemic threshold in sub-Saharan Africa (SSA), health systems, policy-makers and individuals still consider CNCDs to be uncommon and, therefore, do not give its management the required attention. In sub-Saharan Africa (SSA), effectively addressing the growing burden of CNCDs will require comprehensive measures that incorporate both curative and preventive interventions, towards achieving the Sustainable Development Goal (SDG) 3.4 target of reducing by one-third premature mortality from CNCDs through prevention and treatment and the promotion of mental health and well-being by the year 2030. In this commentary, we adopt the Chronic Care Model (CCM) to discuss how improved investment in Chronic Disease Care is crucial in achieving the SDG target in SSA. At the health systems level of the CCM, we propose that countries in SSA should increase the proportion of their annual budgets allocated to health in line with the Abuja Declaration of 2001. Social health insurance should also be adopted by all countries and effectively implemented. At the community level, we propose intensified community-based health education, the formation of peer support groups and the implementation of community-based policies that promote healthy eating and physical activity. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals caring for chronically ill patients increasingly want to provide patient-centered care (PCC). By understanding each individual patient journey, they can significantly improve the quality of PCC. A patient journey consists of patient interactions, so-called touchpoints, with healthcare professionals distributed over three periods: pre-service, service, and post-service period. The aim of this study was to ascertain chronically ill patients' needs for digital alternatives for touchpoints. Specifically, we aimed to explore which digital alternatives patients would like to see implemented into their patient journey to help healthcare professionals providing PCC. Methods: Eight semi-structured interviews were conducted either face-to-face or via Zoom. Participants were included if they had visited the department of internal medicine and had received treatment for either arteriosclerosis, diabetes, HIV, or kidney failure. The interviews were analyzed utilizing a thematic analysis approach. Results: The results suggest that the patient journey of chronically ill patients is a continuous cycle. Furthermore, the results showed that chronically ill patients would like to see digital alternatives for touchpoints implemented into their patient journey. These digital alternatives consisted of video calls, digitally checking in before a physical appointment, digitally self-monitoring one's medical condition and personally uploading monitoring results into the patient portal, and viewing their own medical status in a digital format. Particularly, patients who were familiar with their healthcare professional(s) and were in a stable condition mostly opted for digital alternatives. Conclusion: In the cyclical patient journey, digitalization can help put the wishes and needs of the chronically ill patients at the center of care. It is recommended that healthcare professionals implement digital alternatives for touchpoints. Most chronically ill patients consider digital alternatives to lead to more efficient interactions with their healthcare professionals. Furthermore, digital alternatives support patients to be better informed about the progress of their chronical illness. [ABSTRACT FROM AUTHOR]

Abstract: To enhance patient-centred care of people with hip pain, we need a comprehensive understanding of peoples' beliefs about their hip pain. This systematic review explored the beliefs and expectations of middle-aged and older adults about chronic hip pain and its care across different healthcare settings and contexts. This review was a synthesis of qualitative studies using a framework synthesis approach. We searched 5 databases: MEDLINE, CINAHL, The Cochrane Central Register of Controlled Trials, EMBASE, and PsycINFO. Two reviewers independently screened the studies for eligibility. We included qualitative studies that included people with a mean age of older than 45 years and 80% or more of the participants had chronic hip pain, or if they reported the data about participants with chronic hip pain who were 45 years or older separately. We excluded studies of people with systemic conditions and studies not published in English. We included 28 studies involving 352 participants with chronic hip pain. We generated 5 themes: (1) biomedical causes (subtheme 1: scary pathoanatomical labels, subtheme 2: information needs); (2) negative impacts on physical, social, and mental health; (3) activity avoidance or modification and rest; (4) treatment failures (subtheme: information and support were helpful); (5) surgery is inevitable. Middle-aged and older adults labelled their hip joint damaged and attributed their hip pain to age, and wear and tear. People coped with their hip pain by avoiding or modifying activity. People were not educated about treatments or used treatments that failed to improve their hip pain. People believed that surgery for their hip was inevitable. [ABSTRACT FROM AUTHOR]

Growing evidence shows that primary care--oriented systems achieve better health outcomes, more health equity, and lower costs. Despite this strong evidence, such care has been chronically underfunded. If a council focused on primary care had existed during the height of the coronavirus disease 2019 (COVID-19) pandemic, it could have helped rapidly mobilize primary care to address vaccine equity and shore up public health, particularly in rural and historically marginalized urban communities. We believe an infrastructure investment plan should include oversight, tools, and resources for rebuilding primary care. Researchers have tried to compare the number of deaths due to "neglected tropical diseases" and that due to COVID -- total deaths in the former cases are greater than COVID deaths. We should take into consideration a few issues: (a) distinction between health (as a human right) and health care (as commodity), (b) "clinical health" and "public health," (3) primary health care (as the backbone of public health) as well as community-based horizontal program NOT to be replaced by selective primary health care or GOBI or any disease-centered vertical program. [ABSTRACT FROM AUTHOR]

Introduction: Caring for the chronically ill at home is a particularly demanding process that can place a great burden on the caregiver. International and Greek studies underline and confirm this problem. In addition, family caregivers are not supported by the health systems of the different countries, especially in Greece, where the system relies mainly on the family to care for these patients, which is even more challenging during the Covid-19 pandemic. Aim: The aim of this study is to evaluate the psychological burden of family caregivers of the chronically ill and the outcomes of care for these individuals. It also aims to assess the intensity of burden and changes in quality of life of family caregivers by demographic characteristics. Methods: The sample of the study was a random sample and consisted of 102 family caregivers of chronically ill patients registered in home care of "Metaxa" hospital. The scales (BAKAS/BCOS) and (HADS) were used for data collection. SPSS 25 statistical package was used for statistical analysis of the results. Results: The results of the study, calculated with the BCOS scale, show a low burden (-0.93) of family caregivers, patients with chronic diseases and moderate depression and anxiety. The results of the analysis associate the intensity of family caregiver burden with increased levels of anxiety and depression. The factors that affect burden are gender, with women having higher burden, living with the patient, and low education level. According to the HADS anxiety scale, family caregivers had an average score of 11, indicating a moderate level of anxiety, and for depression, the average score was 10.4, also indicating a moderate level of depression. The results indicate that the state needs to support family caregivers and take immediate action to create structures and implement actions to help families continue in their difficult roles in a pain-free manner. [ABSTRACT FROM AUTHOR]

Care paves efficient ways to sustain life during illness, nonetheless, caring for a chronically ill person is a hard, demanding, tedious and unglamorous work, often fraught with challenges. In contrast, creativity refers to a generative process that brings something new into existence. For instance, creativity implies a moment of discovery, the birth of new ideas, crossing existing boundaries among others. Perfusing creativity with care practices mitigates the difficult experiences, and aid in the healthy management of challenges put forth by the illness. The present article after elaborating on how creativity transforms care as a meaningful and constructive life-changing practice in the context of one of the chronic illnesses, dementia/AD, and briefing on graphic medicine—an interdisciplinary field of healthcare and comics, seeks to close-read Dana Walrath's Aliceheimer's: Alzheimer's Through the Looking Glass to demonstrate how care as creative practice provides a therapeutic direction when biomedical cure becomes impossible. The article investigates how such distinctive caring practices challenges the predominant perspective of dementia as a social death and aid in finding meaning in the alternative experiential realities of the person living with dementia. Further, the article also examines how these practices help in retaining the personhood and humanity of the care-receiver. [ABSTRACT FROM AUTHOR]

This article attempts to analyze the social as well as relational needs and problems of people suffering from chronic oncological diseases. At the same time, we would like to present the possible available ranges of social support that oncologically ill people can get under the existing support systems in Poland, Hungary and Slovakia. This article will also present the results of the first findings based on the pilot studies which were the expert interviews aimed at discerning environmental, institutional and non-institutional forms of support. This research project undertaken by researcher from Poland (University of Silesia in Katowice), Hungary (Reformed Theological Academy of Sárospatak) and Slovakia (Trnava University) is to answer the question of the types of community psychosocial support available to cancer patients, their families and carers. [ABSTRACT FROM AUTHOR]

The names of the board members are: HE Hesham Al Qasem, HE Dr. Khalid Al Midfa, Dr. Mohammad Al-Sharhan, Dr. Ahmed ElSobky, Dr. Abdullah Al Sumit, Dr. Ali Al Sayyed, Dr Abdul Salam Al Madani, Dr. Hesham Abdullah, Dr. Hani Hamdan, Dr. Ahmed AlEnizi, Dr. Makiyyah Mejrici, Dr. Khalid Al Naqbi, Dr. Mirna Matni, Dr. Sawsan Al Madhi, Dr. Nora Al Thumairi, Dr. Omar A. Hamid, Dr. Fakhr Al-Ayoubi, Dr. Maryam Al Khatri, Dr. Mohamed El Sahili, Dr. Mohammed A. Omair, Dr. Anas Hamad, Dr. Haitham Al Bashir, HE Dr. Mohammed Suhail Al Mehari, Mr. Salem bin Lahej, Dr. Joseph Saba, and Dr. Anas Nofal (Secretariat). Dubai, United Arab Emirates: Ambitious and passionate healthcare experts from the Middle East and Africa region have come together to shape an Advocacy Board that will transform access to healthcare through innovative, consistent, sustainable, and customized solutions. [Extracted from the article]

High healthcare utilizers are often chronically ill patients who require aggressive hospital and outpatient care. We describe a patient with septic shock who was stabilized in the intensive care unit, then transitioned to a virtual hybrid hospital‐at‐home to complete both inpatient care as well as outpatient wound and rehabilitation therapy. [ABSTRACT FROM AUTHOR]

Copyright of Revista Bioetica is the property of Conselho Federal de Medicina and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

1. Utilizing the ISPEC curriculum and case-based demonstration, participants will self-report the ability to define spiritual distress and recognize components of spiritual assessment. 2. Utilizing an established experiential exercise, participants will self-report the ability to reflect on their own spirituality as part of their clinical practice, and their own well-being and call to serve. Spiritual care, an essential domain of Palliative Care, is increasingly recognized as an equal aspect of patient-centered, whole person care. The ISPEC curriculum is a resource for spiritual care training and clinician self-care. The Interprofessional Spiritual Care Curriculum (ISPEC), offered since 2018, is an evidence-informed curriculum to train interdisciplinary health teams to recognize and attend to the spiritual needs of seriously or chronically ill patients. Addressing spiritual and religious issues is essential to DEI and fundamental to respectful care. Based on the generalist-specialist spiritual care model, clinician-chaplain pairs attend ISPEC to learn content, teaching, and leadership skills. To date, over 500 attendees from 29 countries have participated in ISPEC. With increasing physician suicides and nurse burnout, attendees note how ISPEC reconnects them to their sense of meaning and purpose. Participants have the opportunity, through reflection on their patient encounters, to develop their inner resources. In this session, we will teach key concepts from the six-module ISPEC curriculum, with particular focus on spiritual distress, spiritual assessment, and clinician well-being. ISPEC is designed to meet the critical need to educate clinicians to provide spiritual care in clinical settings. Teaching methods include content from the ISPEC curriculum, case presentations, discussion, and experiential exercises. Attendance at three recent courses included 53% clinicians and 45% chaplains. Course participants' (N=113) overall course ratings were 27% as very good and 69% as excellent. Individual module ratings were 32% rated as very good and 55% as excellent. Along with reporting an increase in skill and confidence in providing spiritual care, ISPEC participants report the course also impacts them on a personal level. ISPEC can serve as a model for organizations as they strive to improve spiritual care, practiced by clinicians and chaplains, as essential to an overall QI effort in palliative care. Managing Suffering and Distress / Existential / Humanities / Spirituality / Religion [ABSTRACT FROM AUTHOR]

This cross-sectional internet-based questionnaire aimed to assess the knowledge and experience of autoimmune disease patients in Saudi Arabia of the ocular effects of hydroxychloroquine (HCQ). Among the 245 respondents, discontinuation of the drug was linked to its ocular toxicity in approximately 7.3%. Most patients had taken HCQ for a period longer than five years, exceeding a dose of 5 mg/Kg. A lack of education and physician communication about medication toxicity was reported by approximately 40.8% of the participants. Despite the knowledge about HCQ retinopathy, the drug is prescribed to autoimmune disease patients at an inappropriate dosage. Knowledge obtained from physicians' communication may improve the health outcomes of chronically ill patients. Rheumatologists and ophthalmologists should work together to recognize patients at risk of hydroxychloroquine toxicity and ensure they receive proper education and adhere to periodic follow-up. [ABSTRACT FROM AUTHOR]

Context: Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following discharge.Objectives: To describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year.Methods: Chart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016 and 2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year.Results: Among 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital and/or genetic conditions (68.5%), prematurity (28.2%), and birth events (3.3%). At discharge, surgical feeding tubes (75.1%) and tracheostomies (24.5%) were the most common technologies. Infants received a median of 6 [IQR 4-9] medications and were followed by a median of 8 [IQR 7-9] providers. At one year, 91.4% continued with one or more technologies, similar numbers of medications and specialty providers. In the NICU, nearly all families had social work involvement, 78.8% had chaplaincy and 53.8% child life; 19.8% received specialty palliative care consultation. At one year, only 13.2% were followed by palliative care.Conclusions: CCI infants receive intensive medical care including multiple medical technologies, medications, and specialty follow up at discharge and remain complex at one year of life. Most receive primary interprofessional palliative care in the NICU, however these infants and their families may have limited access to specialty palliative care in the short- and long-term. [ABSTRACT FROM AUTHOR]

Background: Continuity of care strengthens health promotion and decreases mortality, although the mechanisms of these effects are still unclear. In recent decades, continuity of care and accessibility of health care services have both decreased in Finland.Objectives: The aim of the study was to investigate whether a named and assigned GP representing continuity of care is associated with the use of primary and hospital health care services and to create knowledge on the state of continuity of care in a changing health care system in Finland.Methods: The data are part of the Health and Social Support (HeSSup) mail survey based on a random Finnish working age population sample of 64,797 individuals drawn in 1998 and follow-up surveys in 2003 and 2012. The response rate in 1998 was 40% (n = 25,898). Continuity of care was derived from the 2003 and 2012 data sets, other variables from the 2012 survey (n = 11,924). The principal outcome variables were primary health care and hospital service use reported by participants. The association of the explanatory variables (gender, age, education, reported chronic diseases, health status, smoking, obesity, NYHA class of any functional limitation, depressive mood and continuity of care) with the outcome variables was analysed by binomial logistic regression analysis.Results: A named and assigned GP was independently and significantly associated with more frequent use of primary and hospital care in the adjusted logistic regression analysis (ORs 1.53 (95% CI 1.35-1.72) and 1.19 (95% CI 1.08-1.32), p < 0.001).Conclusion: A named GPs is associated with an increased use of primary care and hospital services. A named GP assures access to health care services especially to the chronically ill population. The results depict the state of continuity of care in Finland. All benefits of continuity of care are not enabled although it still assures treatment of population in the most vulnerable position. [ABSTRACT FROM AUTHOR]

The objective of this scoping review is to synthesize and identify gaps in existing research on accessibility of telemedicine-delivered contraceptive health services to female adolescents and young adults (AYAs) and acceptability of these services to AYA patients and their medical providers. We searched the PubMed, Scopus, Embase, and CINAHL databases to extract relevant studies on telemedicine and provision of contraceptive services among non-institutionalized, non-chronically ill female AYAs, ages 10 through 24 years. We screened 154 articles, and 6 articles representing 5 studies met the full inclusion criteria. Three studies assessed telemedicine acceptability and accessibility from the perspective of providers, and 3 described patients' perceived accessibility and acceptability of a theoretical telemedicine visit. No studies directly assessed AYA patients' satisfaction with actual telemedicine visits for contraceptive services. Providers viewed telemedicine-delivered sexual and reproductive health (SRH) services as acceptable to themselves and AYA patients. Most AYAs reported that they would use telemedicine for SRH services, although they would prefer in-person care. All articles identified concerns about privacy and confidentiality as a barrier to SRH telemedicine care. Telemedicine-delivered contraceptive health services for AYAs were perceived as acceptable and accessible by providers and by most AYA patients, although patients reported a preference for in-person care. However, none of these findings are based on patients' actual experiences with SRH telemedicine. Further research is needed to directly assess the accessibility and acceptability of telemedicine-delivered contraceptive health services for female AYA patients. [ABSTRACT FROM AUTHOR]

Background and objectives: Rheumatoid arthritis (RA) is an autoimmune inflammatory condition that causing disability and affection of patient's quality of life (QoL). Self-efficacy investigation helps us to detect the requirements of chronically affected patients and evaluation of self-care management programs. The aim of our study was to test validity and reliability of Self-Efficacy for Managing Chronic Disease (SEMCD-Arabic) in RA patients. Method: This study included 248 RA patients, carried out at Rheumatology and Rehabilitation Department. The SEMCD-Arabic Validity was assessed by correlating the SEMCD-Arabic scale with the validated Arabic version of the modified Health Assessment Questionnaire HAQ (MHAQ), the Arabic version of the Multidimensional Assessment of Fatigue (MAF) scale, and the Arabic version of Short Form 36 version 2 for quality of life (SF QoL). Internal consistency, test–retest reliability was assessed. Results: Convergent validity was confirmed by a positive correlation between (physical, mental) component of SF QoL and SEMCD-Arabic (r = 0.918, r = 0.925) respectively, and negative correlation between MAF and SEMCD-Arabic (r = − 0.657) and MHAQ with SEMCD-Arabic (r = − 0.595). Discriminant validity confirmed by a significant negative correlation between visual analogue scale (VAS) for pain, disease activity scale (DAS28), Morning stiffness, patient health, physician health, age, duration, and SEMCD-Arabic (r = − 0.1–0.7) (P < 0.001). Test–retest reliability was estimated which revealed a high interclass correlation coefficient (ICC = 0.87–0.997) indicating excellent agreement and internal consistency is acceptable as the Cronbach's alpha value (0.660 to 0.78). Conclusion: The SEMCD-Arabic questionnaire can be used as a valid and reliable measure for assessment of patient's self-efficacy in RA. Key Points • The SEMCD-Arabic questionnaire has a statistically significant validity in correlation with different clinical manifestations MHAQ, SF QoL, and MAF. • The Arabic SEMCD is highly reliable with a Cronbach's alpha of 0.660 to 0.78. [ABSTRACT FROM AUTHOR]

Facts about the increased corporatization of medical care in the United States are offered here in order to trace their impact on patients and their care. The culture of medicine, as it has been impacted by a corporate ethos, is also addressed, including aspects of physicians' training that make it difficult for them to empathize with their patients' struggles, and the gradual evolution of practices that view patients as isolated, impaired "organ systems" targeted for siloed treatments. Narratives from patients who report their encounters with an alienating system are discussed from a perspective that focuses on patients' resulting self‐experience. Finally, three cases of chronically ill patients who engaged in psychoanalytic treatments in the context of their experiences with "not care" are examined in depth. [ABSTRACT FROM AUTHOR]

Objective: For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era. Method: Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children's Hospital were invited to participate. We used qualitative methodology, including a semi-structured interview guide, verbatim transcription, and thematic analysis supported by QSR NVivo. Results: Thirteen parents of children receiving tertiary-level care, for nine chronic illnesses, participated. Parents reported intense fears relating to their ill child's additional vulnerabilities, which included their risk of developing severe COVID-19 disease and the potential impact of COVID-19-related disruptions to accessing clinical care, medications, allied health support and daily care protocols should their parent contract COVID-19. Parents perceived telehealth as a highly convenient and preferred method for ongoing management of less complex healthcare needs. Parents reported that the accrual of additional stressors and responsibilities during the pandemic, experienced in combination with restricted social interaction and reduced access to usual support networks was detrimental to their own mental health. Hospital-based visitation restrictions reduced emotional support, coping, and resilience for both parents and children and in some cases led to marital discord, sibling distress, and financial loss. Supportive factors included increased time spent together at home during the pandemic and improved hygiene practices at school, which dramatically reduced the incidence of non-COVID-19-related communicable illnesses in chronically ill children. Discussion: For families caring for a chronically ill child, COVID-19 made a difficult situation harder. The pandemic has highlighted the need for targeted psychosocial intervention for vulnerable families, to mitigate current mental health burden and prevent chronic psychological distress. [ABSTRACT FROM AUTHOR]

This paper dwells upon COVID-19-related efforts of the Center for Sports Medicine, Federal Medical and Biological Agency of Russia. The Agency has the following precautions in place: regular polymerase chain reaction (PCR) testing of athletes and staff; double PCR testing before going to training camps or medical examinations; isolating athletes and their traceable contacts when COVID is suspected; observation and isolation wards set up at training camp venues. Athlete vaccination has begun. Athletes are provided online advice on health, diet, and exercising plus special care for chronically ill athletes and remote psychological counseling. Athletes recovering from COVID-19 are offered rehabilitation programs and doctor-supervised return to training. Specialists of the Research Department at FMBA's Center for Sports Medicine carried out a research dedicated to the prevalence of COVID-19 and different variants of its course in Russian athletes. The study period lasted from March to December 2020. A total of 27,438 records were analyzed. In May, June, July and August 2020, the percentage of positive PCR tests for athletes was significantly lower than the nationwide percentage at p < 0.05, Pearson's chi-squared test. However, the differences were nullified by September–October. The disease was mild or asymptomatic in most patients. Athletes of summer sports were found to be most likely to contract COVID-19. [ABSTRACT FROM AUTHOR]