Search results for: caregiver overload

Authors: Elzbieta Sikorska-Simmons

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Advanced dementia is a progressive terminal brain disease that is accompanied by a syndrome of difficult to manage symptoms and complications that eventually lead to death. The management of advanced dementia poses major challenges to family caregivers who act as patient health care proxies in making medical treatment decisions. Little is known, however, about how they manage advanced dementia and how their treatment choices influence the quality of patient life. This prospective qualitative study examines the key medical treatment decisions that family caregivers make while managing advanced dementia. The term ‘family caregiver’ refers to a relative or a friend who is primarily responsible for managing patient’s medical care needs and legally authorized to give informed consent for medical treatments. Medical decision-making implies a process of choosing between treatment options in response to patient’s medical care needs (e.g., worsening comorbid conditions, pain, infections, acute medical events). Family caregivers engage in this process when they actively seek treatments or follow recommendations by healthcare professionals. Better understanding of medical decision-making from the family caregiver perspective is needed to design interventions that maximize the quality of patient life and limit inappropriate treatments. Data were collected in three waves of semi-structured interviews with 20 family caregivers for patients with advanced dementia. A purposive sample of 20 family caregivers was recruited from a senior care center in Central Florida. The qualitative personal interviews were conducted by the author in 4-5 months intervals. The ethical approval for the study was obtained prior to the data collection. Advanced dementia was operationalized as stage five or higher on the Global Deterioration Scale (GDS) (i.e., starting with the GDS score of five, patients are no longer able survive without assistance due to major cognitive and functional impairments). Information about patients’ GDS scores was obtained from the Center’s Medical Director, who had an in-depth knowledge of each patient’s health and medical treatment history. All interviews were audiotaped and transcribed verbatim. The qualitative data analysis was conducted to answer the following research questions: 1) what treatment decisions do family caregivers make while managing the symptoms of advanced dementia and 2) how do these treatment decisions influence the quality of patient life? To validate the results, the author asked each participating family caregiver if the summarized findings accurately captured his/her experiences. The identified medical decisions ranged from seeking specialist medical care to end-of-life care. The most common decisions were related to arranging medical appointments, medication management, seeking treatments for pain and other symptoms, nursing home placement, and accessing community-based healthcare services. The most challenging and consequential decisions were related to the management of acute complications, hospitalizations, and discontinuation of treatments. Decisions that had the greatest impact on the quality of patient life and survival were triggered by traumatic falls, worsening psychiatric symptoms, and aspiration pneumonia. The study findings have important implications for geriatric nurses in the context of patient/caregiver-centered dementia care. Innovative nursing approaches are needed to support family caregivers to effectively manage medical care needs of patients with advanced dementia.

Keywords: advanced dementia, family caregiver, medical decision-making, symptom management

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Authors: Nyimas Annissa Mutiara Andini

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There are 325,000 children younger than age 15 in the U.S. have epilepsy. In Indonesia, 40% of 3,5 millions cases of epilepsy happens in children. The most common type of epilepsy, which affects 6 out of 10 people with the disorder, is called idiopathic epilepsy and which has no identifiable cause. One of the most commonly used medications in the treatment of this childhood epilepsy is sodium valproate. Administration of sodium valproat in children has a problem to fail. Nearly 60% of pediatric patients known were mildly, moderately, or severely non-adherent with therapy during the first six months of treatment. Many parents or caregiver took far less medication than prescribed, and the treatment-adherence pattern for the majority of patients was established during the first month of treatment. 42% of the patients were almost always given their medications as prescribed but 13% had very poor adherence even in the early weeks and months of treatment. About 7% of patients initially gave the medication correctly 90% of the time, but adherence dropped to around 20% within six months of starting treatment. Over the six months of observation, the total missing of administration is about four out of 14 doses in any given week. This fail can cause the epilepsy to relapse. Whereas, current reported epilepsy disorder were significantly more likely than those never diagnosed to experience depression (8% vs 2%), anxiety (17% vs 3%), attention-deficit/hyperactivity disorder (23% vs 6%), developmental delay (51% vs 3%), autism/autism spectrum disorder (16% vs 1%), and headaches (14% vs 5%) (all P< 0.05). They had a greater risk of limitation in the ability to do things (relative risk: 9.22; 95% CI: 7.56–11.24), repeating a school grade (relative risk: 2.59; CI: 1.52–4.40), and potentially having unmet medical and mental health needs. In the other side, technology can help to make our life easier. One of the technology, that we can use is a mobile application. A mobile app is a software program we can download and access directly using our phone. Indonesians are highly mobile centric. They use, on average, 6.7 applications over a 30 day period. This paper is aimed to describe an application that could help to control a sodium valproat administration in children; we call it as D-Epi app. D-Epi app is a downloadable application that can help parents or caregiver alert by a timer-related application to warn whether it is the time to administer the sodium valproat. It works not only as a standard alarm, but also inform important information about the drug and emergency stuffs to do to children with epilepsy. This application could help parents and caregiver to take care a child with epilepsy in Indonesia.

Keywords: application, children, D-Epi, epilepsy

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Authors: Beste Ozcan, Valerio Sperati, Laura Romano, Tania Moretta, Simone Scaffaro, Noemi Faedda, Federica Giovannone, Carla Sogos, Vincenzo Guidetti, Gianluca Baldassarre

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+me is an experimental interactive toy with the appearance of a soft, pillow-like, panda. Shape and consistency are designed to arise emotional attachment in young children: a child can wear it around his/her neck and treat it as a companion (i.e. a transitional object). When caressed on paws or head, the panda emits appealing, interesting outputs like colored lights or amusing sounds, thanks to embedded electronics. Such sensory patterns can be modified through a wirelessly connected tablet: by this, an adult caregiver can adapt +me responses to a child's reactions or requests, for example, changing the light hue or the type of sound. The toy control is therefore shared, as it depends on both the child (who handles the panda) and the adult (who manages the tablet and mediates the sensory input-output contingencies). These features make +me a potential tool for therapy with children with Neurodevelopmental Disorders (ND), characterized by impairments in the social area, like Autism Spectrum Disorders (ASD) and Language Disorders (LD): as a proposal, the toy could be used together with a therapist, in rehabilitative play activities aimed at encouraging simple social interactions and reinforcing basic relational and communication skills. +me was tested in two pilot experiments, the first one involving 15 Typically Developed (TD) children aged in 8-34 months, the second one involving 7 children with ASD, and 7 with LD, aged in 30-48 months. In both studies a researcher/caregiver, during a one-to-one, ten-minute activity plays with the panda and encourages the child to do the same. The purpose of both studies was to ascertain the general acceptability of the device as an interesting toy that is an object able to capture the child's attention and to maintain a high motivation to interact with it and with the adult. Behavioral indexes for estimating the interplay between the child, +me and caregiver were rated from the video recording of the experimental sessions. Preliminary results show how -on average- participants from 3 groups exhibit a good engagement: they touch, caress, explore the panda and show enjoyment when they manage to trigger luminous and sound responses. During the experiments, children tend to imitate the caregiver's actions on +me, often looking (and smiling) at him/her. Interesting behavioral differences between TD, ASD, and LD groups are scored: for example, ASD participants produce a fewer number of smiles both to panda and to a caregiver with respect to TD group, while LD scores stand between ASD and TD subjects. These preliminary observations suggest that the interactive toy +me is able to raise and maintain the interest of toddlers and therefore it can be reasonably used as a supporting tool during therapy, to stimulate pivotal social skills as imitation, turn-taking, eye contact, and social smiles. Interestingly, the young age of participants, along with the behavioral differences between groups, seem to suggest a further potential use of the device: a tool for early differential diagnosis (the average age of a child

Keywords: autism spectrum disorders, interactive toy, social interaction, therapy, transitional wearable companion

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Authors: Fruzsina Pataki-Bittó, Edit Németh

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On the one hand, new technologies and communication tools improve employee productivity and accelerate information and knowledge transfer, while on the other hand, information overload and continuous interruptions make it even harder to concentrate at work. It is a great challenge for companies to find the right balance, while there is also an ongoing demand to recruit and retain the talented employees who are able to adopt the modern work style and effectively use modern communication tools. For this reason, this research does not focus on the objective measures of office interruptions, but aims to find those disruption factors which influence the comfort and job satisfaction of employees, and the way how they feel generally at work. The focus of this research is on how employees feel about the different types of interruptions, which are those they themselves identify as hindering factors, and those they feel as stress factors. By identifying and then reducing these destructive factors, job satisfaction can reach a higher level and employee turnover can be reduced. During the research, we collected information from depth interviews and questionnaires asking about work environment, communication channels used in the workplace, individual communication preferences, factors considered as disruptions, and individual steps taken to avoid interruptions. The questionnaire was completed by 141 office workers from several types of workplaces based in Hungary. Even though 66 respondents are working at Hungarian offices of multinational companies, the research is about the characteristics of the Hungarian labor force. The most important result of the research shows that while more than one third of the respondents consider office noise as a disturbing factor, personal inquiries are welcome and considered useful, even if in such cases the work environment will not be convenient to solve tasks requiring concentration. Analyzing the sizes of the offices, in an open-space environment, the rate of those who consider office noise as a disturbing factor is surprisingly lower than in smaller office rooms. Opinions are more diverse regarding information communication technologies. In addition to the interruption factors affecting the employees' job satisfaction, the research also focuses on the role of the offices in the 21^st century.

Keywords: information overload, interruption, job satisfaction, office environment, work efficiency

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Authors: Chiao-Chen Chang, Yang-Chieh Chin

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Social media has created a change in the way the network community is clustered, especially from the location of the community, from the original virtual space to the intertwined network, and thus the communication between people will change from face to face communication to social media-based communication model. However, social media users who have had a fixed engagement may have an intention to switch to another service provider because of the emergence of new forms of social media. For example, some of Facebook or Twitter users switched to Instagram in 2014 because of social media messages or image overloads, and users may seek simpler and instant social media to become their main social networking tool. This study explores the impact of system features overload, information overload, social monitoring concerns, problematic use and privacy concerns as the antecedents on social media fatigue, dissatisfaction, and alternative attractiveness; further influence social media switching. This study also uses the online questionnaire survey method to recover the sample data, and then confirm the factor analysis, path analysis, model fit analysis and mediating analysis with the structural equation model (SEM). Research findings demonstrated that there were significant effects on multiple paths. Based on the research findings, this study puts forward the implications of theory and practice.

Keywords: social media, switching, social media fatigue, alternative attractiveness

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Authors: V. Howard, R. Maguire, S. Corrigan

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Background: Type 1 Diabetes (T1D) is a chronic autoimmune disease, typically diagnosed in childhood. T1D puts an enormous strain on families; controlling blood-glucose in children is difficult and the consequences of poor control for patient health are significant. Successful illness management and better health outcomes can be dependent on quality of caregiving. On diagnosis, parent-caregivers face a steep learning curve as T1D care requires a significant level of knowledge to inform complex decision making throughout the day. The majority of illness management is carried out in the home setting, independent of clinical health providers. Parent-caregivers vary in their level of knowledge and their level of engagement in applying this knowledge in the practice of illness management. Enabling researchers to quantify these aspects of the caregiver experience is key to identifying targets for psychosocial support interventions, which are desirable for reducing stress and anxiety in this highly burdened cohort, and supporting better health outcomes in children. Currently, there are limited tools available that are designed to capture this information. Where tools do exist, they are not comprehensive and do not adequately capture the lived experience. Objectives: Development of quantitative tools, informed by lived experience, to enable researchers gather data on parent-caregiver knowledge and engagement, which accurately represents the experience/cohort and enables exploration of questions that are of real-world value to the cohort themselves. Methods: This research employed an engaged approach to address the problem of quantifying two key aspects of caregiver diabetes management: Knowledge and engagement. The research process was multi-staged and iterative. Stage 1: Working from a constructivist standpoint, literature was reviewed to identify relevant questionnaires, scales and single-item measures of T1D caregiver knowledge and engagement, and harvest candidate questionnaire items. Stage 2: Aggregated findings from the review were circulated among a PPI (patient and public involvement) expert panel of caregivers (n=6), for discussion and feedback. Stage 3: In collaboration with the expert panel, data were interpreted through the lens of lived experience to create a long-list of candidate items for novel questionnaires. Items were categorized as either ‘knowledge’ or ‘engagement’. Stage 4: A Delphi-method process (iterative surveys) was used to prioritize question items and generate novel questions that further captured the lived experience. Stage 5: Both questionnaires were piloted to refine wording of text to increase accessibility and limit socially desirable responding. Stage 6: Tools were piloted using an online survey that was deployed using an online peer-support group for caregivers for Juveniles with T1D. Ongoing Research: 123 parent-caregivers completed the survey. Data analysis is ongoing to establish face and content validity qualitatively and through exploratory factor analysis. Reliability will be established using an alternative-form method and Cronbach’s alpha will assess internal consistency. Work will be completed by early 2024. Conclusion: These tools will enable researchers to gain deeper insights into caregiving practices among parents of juveniles with T1D. Development was driven by lived experience, illustrating the value of engaged research at all levels of the research process.

Keywords: caregiving, engaged research, juvenile type 1 diabetes, quantified engagement and knowledge

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Authors: Zbigniew Czyz, Pawel Magryta, Mateusz Paszko

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The paper discusses the status of loads acting on the drive unit of the unmanned helicopter during deceleration to dash maneuver. Special attention was given for the loads of bearings in the gas generator turbine engine, in which will be equipped a helicopter. The analysis was based on the speed changes as a function of time for manned flight of helicopter PZL W3-Falcon. The dependence of speed change during the flight was approximated by the least squares method and then determined for its changes in acceleration. This enabled us to specify the forces acting on the bearing of the gas generator in static and dynamic conditions. Deceleration to dash maneuvers occurs in steady flight at a speed of 222 km/h by horizontal braking and acceleration. When the speed reaches 92 km/h, it dynamically changes an inclination of the helicopter to the maximum acceleration and power to almost maximum and holds it until it reaches its initial speed. This type of maneuvers are used due to ineffective shots at significant cruising speeds. It is, therefore, important to reduce speed to the optimum as soon as possible and after giving a shot to return to the initial speed (cruising). In deceleration to dash maneuvers, we have to deal with the force of gravity of the rotor assembly, gas aerodynamics forces and the forces caused by axial acceleration during this maneuver. While we can assume that the working components of the gas generator are designed so that axial gas forces they create could balance the aerodynamic effects, the remaining ones operate with a value that results from the motion profile of the aircraft. Based on the analysis, we can make a compilation of the results. For this maneuver, the force of gravity (referring to statistical calculations) respectively equals for bearing A = 5.638 N and bearing B = 1.631 N. As overload coefficient k in this direction is 1, this force results solely from the weight of the rotor assembly. For this maneuver, the acceleration in the longitudinal direction achieved value a_max = 4.36 m/s2. Overload coefficient k is, therefore, 0.44. When we multiply overload coefficient k by the weight of all gas generator components that act on the axial bearing, the force caused by axial acceleration during deceleration to dash maneuver equals only 3.15 N. The results of the calculations are compared with other maneuvers such as acceleration and deceleration and jump up and jump down maneuvers. This work has been financed by the Polish Ministry of Science and Higher Education.

Keywords: gas bearings, helicopters, helicopter maneuvers, turbine engines

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Authors: Frank Fan

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PharmD (Doctor of Pharmacy) education has confronted an increasing challenge — curricular overload, a phenomenon resulting from the expansion of curricular requirements, as PharmD education strives to produce graduates who are practice-ready. The aftermath of the global pandemic has amplified the need for healthcare professionals, leading to a growing trend of assigning more responsibilities to them to address the global healthcare shortage. For instance, the pharmacist’s role has expanded to include not only compounding and distributing medication but also providing clinical services, including minor ailments management, patient counselling and vaccination. Consequently, PharmD programs have responded by continually expanding their curricula adding more requirements. While these changes aim to enhance the education and training of future professionals, they have also led to unintended consequences, including curricular overload, student burnout, and a potential decrease in program quality. To address the issue and ensure program quality, there is a growing need for evidence-based curriculum reforms. My research seeks to integrate Cognitive Load Theory, emerging machine learning algorithms within artificial intelligence (AI), and statistical approaches to develop a quantitative framework for optimizing curriculum design within the PharmD program at the University of Toronto, the largest PharmD program within Canada, to provide quantification and measurement of issues that currently are only discussed in terms of anecdote rather than data. This research will serve as a guide for curriculum planners, administrators, and educators, aiding in the comprehension of how the pharmacy degree program compares to others within and beyond the field of pharmacy. It will also shed light on opportunities to reduce the curricular load while maintaining its quality and rigor. Given that pharmacists constitute the third-largest healthcare workforce, their education shares similarities and challenges with other health education programs. Therefore, my evidence-based, data-driven curriculum analysis framework holds significant potential for training programs in other healthcare professions, including medicine, nursing, and physiotherapy.

Keywords: curriculum, curriculum analysis, health professions education, reflective writing, machine learning

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Authors: Grace Fangmin Tan, Elaine Yiling Tay, Elizabeth Huiwen Tham, Andrea Wei Ching Yeo

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Background: While accidental poisonings in children may seem unavoidable, knowledge of circumstances surrounding such incidents and identification of risk factors is important in the development of secondary prevention strategies. Some risk factors include age of the child, lack of adequate supervision and improper storage of substances. The aim of this study is to assess risk factors and circumstances influencing outcomes in these children. Methodology: A retrospective medical record review of all accidental poisoning cases presenting to the Children’s Emergency at National University Hospital (NUH), Singapore between January 2014 and December 2015 was conducted. Information on demographics, poisoning circumstances and clinical outcomes were collected. Results: Ninety-nine of a total of 186 poisoning cases were accidental ingestions, with a mean age of 4.7 (range 0.4 to 18.3 years). The gender distribution is rather equal with 52(52.5%) females and 47(47.5%) males. Seventy-nine (79.8%) were self-administered by the child and in 20 cases (20.2%), the substance was administered erroneously by caregivers 12/20 (60.0%) of whom were given the wrong drug dose while 8/20 (40.0%) were given the wrong substance. Self-administration was associated with presentation to the ED within 12 hours (p=0.027, OR 6.65, 95% CI 1.24-35.72). Notably, 94.9% of the cases involved substances kept within reach of the child. Sixty-nine (82.1%) had the substance kept in the original container, 3(3.6%) in food containers, 8(9.5%) in other containers and 4(4.8%) without a container. Of the 50 cases with information on labelling, 40/50(80.0%) were accurately labelled, 2/50 (4.0%) wrongly labelled, and 8/50 (16.0%) were unlabelled. Implicated substances included personal care products (11.1%), household cleaning products (3.0%), and different classes of drugs such as paracetamol (22.2%), antihistamines (17.2%) and sympathomimetics (8.1%). Children < 3 years of age were 4.8 times more likely to be poisoned by household substances than children >3 years of age (p=0.009, 95% CI 1.48-15.77). Prehospital interventions were more likely to have been done in poisoning with household substances (p=0.005, OR 6.12 95% CI 1.73-21.68). Fifty-nine (59.6%) were asymptomatic, 34 (34.3%) had a Poisoning Severity Score (PSS) grade of 1 (minor) and 6 (6.1%) grade 2 (moderate). Older children were 9.3 times more likely to be symptomatic (p<0.001, 95% CI 3.15-27.25). Thirty (32%) required admission. Conclusion: A significant proportion of accidental poisoning cases were due to medication administration errors by caregivers, which should be preventable. Risk factors for accidental poisoning included lack of adequate caregiver supervision, improper labelling and young age of the child. There is an urgent need to improve caregiver counselling during medication dispensing as well as to educate caregivers on basic child safety measures in the home to prevent future accidental poisonings.

Keywords: accidental, caregiver, paediatrics, poisoning

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Authors: Sakkaphat T. Ngamake, Arunya Tuicomepee, Panrapee Suttiwan, Rewadee Watakakosol, Sompoch Iamsupasit

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Generally, 'positive' emotion regulation strategies such as cognitive reappraisal have linked to desirable outcomes while 'negative' strategies such as behavioral suppression have linked to undesirable outcomes. These trends have been found in both the elderly and professional practitioners. Hence, this study sought to investigate these trends further by examining the relationship between two dominant emotion regulation strategies in the literature (i.e., cognitive reappraisal and behavioral suppression) and well-being outcomes among the elderly (i.e., successful aging) and their caregivers (i.e., satisfaction with life), using the actor-partner interdependence model. A total of 150 elderly-caregiver dyads participated in the study. The elderly responded to two measures assessing the two emotion regulation strategies and successful aging while their caregivers responded to the same emotion regulation measure and a measure of satisfaction with life. Two criterion variables (i.e., successful aging and satisfaction with life) were specified as latent variables whereas four predictors (i.e., two strategies for the elderly and two strategies for their caregivers) were specified as observed variables in the model. Results have shown that, for the actor effect, the cognitive reappraisal strategy yielded positive relationships with the well-being outcomes for both the elderly and their caregivers. For the partner effect, a positive relationship between caregivers’ cognitive reappraisal strategy and the elderly’s successful aging was observed. The behavioral suppression strategy has not related to any well-being outcomes, within and across individual agents. This study has contributed to the literature by empirically showing that the mental activity of the elderly’s immediate environment such as their family members or close friends could affect their quality of life.

Keywords: emotion regulation, caregiver, older adult, well-being

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Authors: Thananyada Buapian

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Overnutrition is emerging as a morbid disease in developing and Westernized countries. Because of its comorbidity diseases, it is cost-effective to prevent and manage this disease earlier. In Thailand, this alarming disease has long been studied, but the prevalence is still higher than that in the past. Physicians should recognize it well and have a definite direction to face and combat this dangerous disease. Rapid changes in the tremendous figure of overnutrition students indicate that genetic factors are not the primary determinants since human genes have remained unchanged for a century. This study aims to assess the prevalence of overnutrition students and to investigate the non-genetic factors affecting over nutrition students. A cross-sectional school-based survey was conducted. A two-stage sampling was adopted. Respondents included 1,850 students in grades 4 to 6 in Ayutthaya Province. An anthropometric measurement and questionnaire were developed. Childhood over nutrition was defined as a weight-for-height Z-score above +2SD of NCHS/WHO references. About thirty three percent of the children were over nutrition in Ayutthaya province. Stepwise multiple logistic regression analysis showed that 8 statistically significant non genetic factors explain the variation of childhood over nutrition by 18 percent. Sex is the prime factor to explain the variation of childhood over nutrition, followed by duration of light physical activities, duration of moderate physical activities, having been breastfed, the presence of a healthy role model of the caregiver, number of siblings, birth order, and occupation of the caregiver, respectively. Non genetic factors, especially the subjects’ demographic and physical activities, as well as the caregivers’ background and family environment, should be considered in viable approach to remedy this health imbalance in children.

Keywords: non genetic factors, non-genetic, over nutrition, over nutrition students

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Authors: Shyamani Hettiarachchi, Gopi Kitnasamy

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Background: The potentially high level of physical need and dependency experienced by children with cerebral palsy could affect the quality of life (QOL) of the child, the caregiver and his/her family. Poor QOL in children with cerebral palsy is associated with the parent-child relationship, limited opportunities for social participation, limited access to healthcare services, psychological well-being and the child's physical functioning. Given that children experiencing disabilities have little access to remedial support with an inequitable service across districts in Sri Lanka, and given the impact of culture and societal stigma, there may be differing viewpoints across respondents. Objectives: The aim of this study was to evaluate the psychometric properties of the Tamil version of the Cerebral Palsy Quality of Life for Children (CPQOL-Child) Questionnaire. Design: An instrument development and validation study. Methods: Forward and backward translations of the CPQOL-Child were undertaken by a team comprised of a physiotherapist, speech and language therapist and two linguists for the primary caregiver form and the child self-report form. As part of a pilot phase, the Tamil version of the CPQOL was completed by 45 primary caregivers with children with cerebral palsy and 15 children with cerebral palsy (GMFCS level 3-4). In addition, the primary caregivers commented on the process of filling in the questionnaire. The psychometric properties of test-retest reliability, internal consistency and construct validity were undertaken. Results: The test-retest reliability and internal consistency were high. A significant association (p < 0.001) was found between limited motor skills and poor QOL. The Cronbach's alpha for the whole questionnaire was at 0.95.Similarities and divergences were found between the two groups of respondents. The child respondents identified limited motor skills as associated with physical well-being and autonomy. Akin to this, the primary caregivers associated the severity of motor function with limitations of physical well-being and autonomy. The trend observed was that QOL was not related to the level of impairment but connected to environmental factors by the child respondents. In addition to this, the main concern among primary caregivers about the child's future and on the child's lack of independence was not fully captured by the QOL questionnaire employed. Conclusions: Although the initial results of the CPQOL questionnaire show high test-retest reliability and internal consistency of the instrument, it does not fully reflect the socio-cultural realities and primary concerns of the caregivers. The current findings highlight the need to take child and caregiver perceptions of QOL into account in clinical practice and research. It strongly indicates the need for culture-specific measures of QOL.

Keywords: cerebral palsy, CPQOL, culture, quality of life

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Authors: Ian Christopher Rocha

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This study aimed to determine the association of the quality of life (QOL) of the caregivers of children in need of special protection (CNSP) in child-caring institutions in Metro Manila with the levels of their role overload (RO) and role distress (RD). The CNSP in this study covered the orphaned, abandoned, abused, neglected, exploited, and mentally-challenged children. In this study, the domains of QOL included physical health (PH), psychological health, social health (SH), and living conditions (LC). It also intended to ascertain the association of their personal and work-related characteristics with their RO and RD levels. The respondents of this study were 130 CNSP caregivers in 17 residential child-rearing institutions in Metro Manila. A purposive non-probability sampling was used. Using a quantitative methodological approach, the survey method was utilized to gather data with the use of a self-administered structured questionnaire. Data were analyzed using both descriptive and inferential statistics. Results revealed that the level of RO, the level of RD, and the QOL of the CNSP caregivers were all moderate. Data also suggested that there were significant positive relationships between the RO level and the caregivers’ characteristics, such as age, the number of training, and years of service in the institution. At the same time, the findings revealed that there were significant positive relationships between the RD level and the caregivers’ characteristics, such as age and hours of care rendered to their care recipients. In addition, the findings suggested that all domains of their QOL obtained significant relationships with their RO level. For the correlations of their level of RO and their QOL domains, the PH and the LC obtained a moderate negative correlation with the RO level while the rest of the domains obtained weak negative correlations with RO level. For the correlations of their level of RD and the QOL domains, all domains, except SH, obtained strong negative correlations with the level of RD. The SH revealed to have a moderate negative correlation with RD level. In conclusion, caregivers who are older experience higher levels of RO and RD; caregivers who have more training and years of service experience the higher level of RO; and caregivers who have longer hours of rendered care experience the higher level of RD. In addition, the study affirmed that if the levels of RO and RD are high, the QOL is low, and vice versa. Therefore, the RO and RD levels are reliable predictors of the caregivers’ QOL. In relation, the caregiving situation in the Philippines revealed to be unique and distinct from other countries because the levels of RO and RD and the QOL of Filipino CNSP caregivers were all moderate in contrast with their foreign counterparts who experience high caregiving RO and RD leading to low QOL.

Keywords: quality of life, caregivers, children in need of special protection, physical health, psychological health, social health, living conditions, role overload, role distress

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Authors: Fenni Sim

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Background: The application of systemic family therapy approaches to community health cases have not gathered traction. In National Kidney Foundation, Singapore, the belief is that community support has great potential in helping End Stage Renal Failure (ESRF) patients manage the demands of their treatment regime, whether Hemodialysis (HD) or Peritoneal Dialysis(PD) and sustain them on the treatment. However, the current community support does not include family interventions and is largely nursing based. Although nursing support is well provided to patients, and their family members in issues related to treatment and compliance, complex family issues and dynamics arising from caregiver strain or pre-dialysis relationship strain might deter efforts in managing the challenges of the treatment. Objective: The objective of the study is to understand the potential scope of work provided by a social worker who is trained in systemic family therapy and the effects of these interventions. Methodology: 3 families on HD and 3 families on PD who have been receiving family intervention for the past 6 months would be chosen for the study. A qualitative interview would be conducted to review the effectiveness for the family. Scales such as SCORE-15, PHQ-9, and Zarit Burden were used to measure family functioning, depression, and caregiver’s burden for the families. Results: The research is still in preliminary phase. Conclusion: The study highlights the importance of family intervention for families with multiple stressors on different treatment modalities who might have different needs and challenges. Nursing support needs to be complemented with family-based support to manage complex family issues in order to achieve better health outcomes and improved family coping.

Keywords: complementing nursing support, end stage renal failure, healthcare, systemic approaches

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Authors: John Tarus, Zhendong Niu, Bakhti Khadidja

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In recent years, e-learning recommender systems has attracted great attention as a solution towards addressing the problem of information overload in e-learning environments and providing relevant recommendations to online learners. E-learning recommenders continue to play an increasing educational role in aiding learners to find appropriate learning materials to support the achievement of their learning goals. Although general recommender systems have recorded significant success in solving the problem of information overload in e-commerce domains and providing accurate recommendations, e-learning recommender systems on the other hand still face some issues arising from differences in learner characteristics such as learning style, skill level and study level. Conventional recommendation techniques such as collaborative filtering and content-based deal with only two types of entities namely users and items with their ratings. These conventional recommender systems do not take into account the learner characteristics in their recommendation process. Therefore, conventional recommendation techniques cannot make accurate and personalized recommendations in e-learning environment. In this paper, we propose a recommendation technique combining collaborative filtering and ontology to recommend personalized learning materials to online learners. Ontology is used to incorporate the learner characteristics into the recommendation process alongside the ratings while collaborate filtering predicts ratings and generate recommendations. Furthermore, ontological knowledge is used by the recommender system at the initial stages in the absence of ratings to alleviate the cold-start problem. Evaluation results show that our proposed recommendation technique outperforms collaborative filtering on its own in terms of personalization and recommendation accuracy.

Keywords: collaborative filtering, e-learning, ontology, recommender system

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Authors: Suvorov Vasyl, Filipchuk Viktor

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Developmental Dysplasia of the Hip (DDH) is a frequent pathology in pediatric orthopedist’s practice. Neglected or residual cases of DDH in walking patients are usually treated using pelvic osteotomies. Plastic changes take place in hinge points due to acetabulum reorientation during surgery. Classically described hinge points and a traditional division of pelvic osteotomies on reshaping and reorientation are currently debated. The purpose of this article was to evaluate biomechanical changes during the most commonly used pelvic osteotomies (Salter, Dega, Pemberton) for DDH treatment in pediatric patients. Methods: virtual pelvic models of 2- and 6-years old patients were created, material properties were assigned, pelvic osteotomies were simulated and biomechanical changes were evaluated using finite element analysis (FEA). Results: it was revealed that the patient's age has an impact on pelvic bones and cartilages density (in younger patients the pelvic elements are more pliable - p<0.05). Stress distribution after each of the abovementioned pelvic osteotomy was assessed in 2- and 6-years old patients’ pelvic models; hinge points were evaluated. The new term "restriction point" was introduced, which means a place where restriction of acetabular deformity correction occurs. Pelvic ligaments attachment points were mainly these restriction points. Conclusions: it was found out that there are no purely reshaping and reorientation pelvic osteotomies as previously believed; the pelvic ring acts as a unit in carrying out the applied load. Biomechanical overload of triradiate cartilage during Salter osteotomy in 2-years old patient and in 2- and 6-years old patients during Pemberton osteotomy was revealed; overload of the posterior cortical layer in the greater sciatic notch in 2-years old patient during Dega osteotomy was revealed. Level of Evidence – Level IV, prognostic.

Keywords: developmental dysplasia of the hip, pelvic osteotomy, finite element analysis, hinge point, biomechanics

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Authors: Moshmi Sangavarapu

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The US healthcare industry has undergone tremendous digital transformation in recent years, but critical care access to lower-income ethnicities is still in its nascency. This population has historically showcased substantial hesitation to seek any medical assistance. While the lack of sufficient financial resources plays a critical role, the existing cultural and knowledge barriers also contribute significantly to widening the access gap. It is imperative to break these barriers to ensure timely access to therapeutic procedures that can save important lives! Based on ongoing research, healthcare access barriers can be best addressed by tapping the untapped potential of caregiver communities first. They play a critical role in patients’ diagnoses, building healthcare knowledge and instilling confidence in required therapeutic procedures. Recent technological advancements have opened many avenues by developing smart ways of reaching the large caregiver community. A digitized go-to-market strategy featuring connected media coupled with smart IoT devices and geo-location targeting can be collectively leveraged to reach this key audience group. AI/ML algorithms can be thoroughly trained to identify relevant data signals from users' location and browsing behavior and determine useful marketing touchpoints. The web behavior can be further assimilated with natural language processing to identify contextually relevant interest topics and decipher potential caregivers on digital avenues to serve that brand message. In conclusion, grasping the true health access journey of any lower-income ethnic group is important to design beneficial touchpoints that can alleviate patients’ concerns and allow them to break their own access barriers and opt for timely and quality healthcare.

Keywords: healthcare access, market access, diversity barriers, patient journey

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Arsalan Memon

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There are many challenges that a caregiver faces in average everyday life. One such challenge is coping with the stress and negative emotions of caregiving. The Stoics (i.e. Lucius Annaeus Seneca [4 B.C.E. - 65 C.E.], Epictetus [50-135 C.E.], and Marcus Aurelius [121-180 C.E.]) have provided coping techniques that are useful for dealing with stress and negative emotions. This paper lists and explains some of the fundamental coping techniques provided by the Stoics. For instance, some Stoic coping techniques thus follow (the list is far from exhaustive): a) mindfulness: to the best of your ability, constantly being aware of your thoughts, habits, desires, norms, memories, likes/dislikes, beliefs, values, and of everything outside of you in the world (b) constantly adjusting one’s expectations in accordance with reality, c) memento mori: constantly reminding oneself that death is inevitable and that death is not to be seen as evil, and d) praemeditatio malorum: constantly detaching oneself from everything that is so dear to one so that the least amount of suffering follows from the loss, damage, or ceasing to be of such entities. All coping techniques will be extracted from the following original texts by the Stoics: Seneca’s Letters to Lucilius, Epictetus’ Discourses and the Encheiridion, and Marcus Aurelius’ Meditations. One major finding is that the usefulness of each Stoic coping technique can be empirically tested by anyone in the sense of applying it one’s own life especially when one is facing real-life challenges. Another major finding is that all of the Stoic coping techniques are predicated upon, and follow from, one fundamental principle: constantly differentiate what is and what is not in one’s control. After differentiating it, one should constantly habituate oneself in not controlling things that are beyond one’s control. For example, the following things are beyond one’s control (all things being equal): death, certain illnesses, being born in a particular socio-economic family, etc. The conclusion is that if one habituates oneself by practicing to the best of one’s ability both the fundamental Stoic principle and the Stoic coping techniques, then such a habitual practice can eventually decrease the stress and negative emotions that one experiences by being a caregiver.

Keywords: care-giving, coping techniques, negative emotions, stoicism, stress

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Authors: Ramesh Chand Chauhan, Sanjay Kumar Rai, Shashi kant, Rakesh Lodha, Nand Kumar

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Background: With a better understanding of HIV pathogenesis and availability of antiretroviral therapy more children are growing and entering in teenage group; informing children of their own HIV status has become an important aspect of long-term disease management. There is little evidence of how and when this type of disclosure takes place in a resource-limited setting. Methods: A cross-sectional study was conducted from June 2010 to May 2011 among a dyads of 156 HIV-infected children and their caregivers, those were visiting pediatric clinic at a tertiary care hospital in Delhi, India. The study protocol was approved by the Institute Ethics Committee. After taking written informed consent; pretested structured questionnaire was administered to caregivers during routine clinic visits. Information regarding socio-demographic characteristics, awareness of HIV infection status among children and their perception regarding disclosure was collected. Mean and frequencies were calculated and chi-square and logistic regression test were applied. Results: The mean age of children was 8.4 ±3.45 years. Among them 73.7% were male and 39.1% were orphans. Among 156 enrolled children, 74.4% (n=116) were of ≥ 6 years and were assessed for disclosure. Only 18.1% (n=21) children had been informed of their HIV status. Of those under 9 years, 6.4% knew their status, whereas 18.4% of 9-11 years and 35.5% of 12-14 years children knew they had HIV. Awareness among males (23.3%) was higher than females (3.3%). Both age and sex of child were significantly (p<0.01) associated with disclosure status. Other factors favoring disclosure were orphan-hood, non-perinatal mode of transmission (OR = 4.32; 95% CI 1.01-7.12), ART initiation (OR = 4.21; 95% CI 1.03-6.98), and caregiver educated beyond primary level (OR = 1.89; 95% CI 1.03-3.26). Repeated enquiry regarding the visit to clinic was the most common reason (66.6%) for disclosure. In 52.4% children disclosure was done with the involvement of other family members. 82.5% caregivers felt the age of > 10 years is appropriate for disclosing the HIV infection status to the child. Conclusion: Detailed guidelines on disclosure are required focusing on children of school-going age with perinatal infection who are not on ART and with caregivers of low educational status.

Keywords: HIV, children, India, disclosure

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Authors: Bowen Li, Dan Shu, Shiguang Pang, Li Wang, Qian Liu

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Background: Every year, approximately 429,000 adolescents aged 0-19 are diagnosed with cancer worldwide. The diagnosis brings about substantial psychological pressure and caregiving responsibilities for family members and impacts the families significantly. Family resilience has been found to reduce caregiver distress and can also foster post-traumatic growth in cancer survivors. However, current research on family resilience in childhood cancer mainly focuses on individual caregiver resilience and child adaptation, with less attention given to categorizing family resilience among caregivers of children with cancer. Method: A total of 292 caregivers of children with cancer were recruited from four tertiary hospitals in central China from July 2022 to March 2024. This study was approved by the ethics committee, and participants provided informed consent, with the option to withdraw at any time. The Family Resilience Assessment Scale was used to measure family resilience among caregivers of children with cancer. The Quality of Life scale-family, The Perceived Social Support Scale, and The Connor-Davidson Resilience Scale were used to measure potential influencing factors. This study used latent profile analysis (LPA) to identify latent categories of family resilience among caregivers of children with cancer. Binary logistic regression was used to analyze the influencing factors of family resilience. Results: The results reveal two distinct categories: "high family resilience" and "low family resilience." "Low family resilience" group accounts for 85.96% of the total while "high family resilience" group is 14.04%. "High family resilience" scores higher across all dimensions compared to "low family resilience". Within-group comparisons reveals that "family communication and problem-solving" and "empowering the meaning of adversity" received the highest scores, while "utilizing social and economic resources" scores the lowest. "Maintaining a positive attitude" scores similarly high to "family communication and problem-solving" in the high family resilience group, whereas it scores similarly low to "utilizing social and economic resources" in the low family resilience group. In single-factor analysis, residence, number of siblings, caregiver's education level, resilience, social support, quality of life, physical well-being and psychological well-being showed significant difference between two categories. In binary logistic regression analysis, households with only one child are more likely to exhibit low family resilience, whereas high personal resilience is associated with a high level of family resilience. Conclusion: Most families with children suffering from cancer require strengthened family resilience. Support for utilizing socio-economic resources is important for both high and low family resilience families. Single-child families and caregivers with lower resilience require more attention. These findings imply the development of targeted interventions to enhance family resilience among families with children of cancer. Future studies could involve children and other family members for a comprehensive understanding of family resilience. Longitudinal studies are necessary to explore the dynamic changes in family resilience throughout the cancer journey.

Keywords: cancer children, caregivers, family resilience, latent profile analysis

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Authors: Caroline McDonald-Harker, Julie Drolet

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Abstract— In the last six years Canada In the last six years Canada has experienced two major and catastrophic environmental disasters– the 2013 Southern Alberta flood and the 2016 Fort McMurray, Alberta wildfire. These two disasters resulted in damages exceeding 12 billion dollars, the costliest disasters in Canadian history. In the aftermath of these disasters, many families faced the loss of homes, places of employment, schools, recreational facilities, and also experienced social, emotional, and psychological difficulties. Children and youth are among the most vulnerable to the devastating effects of disasters due to the physical, cognitive, and social factors related to their developmental life stage. Yet children and youth also have the capacity to be resilient and act as powerful catalyst for change in their own lives and wider communities following disaster. Little is known, particularly from a sociological perspective, about the specific factors that contribute to resilience in children and youth, and effective ways to support their overall health and well-being. This paper focuses on the voices and experiences of children and youth residing in these two disaster-affected communities in Alberta, Canada and specifically examines: 1) How children and youth’s lives are impacted by the tragedy, devastation, and upheaval of disaster; 2) Ways that children and youth demonstrate resilience when directly faced with the adversarial circumstances of disaster; and 3) The cumulative internal and external factors that contribute to bolstering and supporting resilience among children and youth post-disaster. This paper discusses the characteristics associated with high levels of resilience in 183 children and youth ages 5 to 17 based on quantitative and qualitative data obtained through a mix methods approach. Child and youth participants were administered the Children and Youth Resilience Measure (CYRM-28) in order to examine factors that influence resilience processes including: individual, caregiver, and context factors. The CYRM-28 was then supplemented with qualitative interviews with children and youth to contextualize the CYRM-28 resiliency factors and provide further insight into their overall disaster experience. Findings reveal that high levels of resilience among child and youth participants is associated with both individual factors and caregiver factors, specifically positive outlook, effective communication, peer support, and physical and psychological caregiving. Individual and caregiver factors helped mitigate the negative effects of disaster, thus bolstering resilience in children and youth. This paper discusses the implications that these findings have for understanding the specific mechanisms that support the resiliency processes and overall recovery of children and youth following disaster; the importance of bridging the gap between children and youth’s needs and the services and supports provided to them post-disaster; and the need to develop resiliency processes and practices that empower children and youth as active agents of change in their own lives following disaster. These findings contribute to furthering knowledge about pragmatic and representative changes to resources, programs, and policies surrounding disaster response, recovery, and mitigation.

Keywords: children and youth, disaster, environment, resilience

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Authors: Kingston Rajiah, Mari Kannan Maharajan, Si Jen Yeen, Sara Lew

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Parkinson’s disease (PD) is a progressive neurodegenerative disorder with evolving layers of complexity. Both motor and non-motor symptoms of PD may affect patients’ quality of life (QoL). Life expectancy for an individual with Parkinson’s disease depends on the level of care the individual has access to, can have a direct impact on length of life. Therefore, improvement of the QoL is a significant part of therapeutic plans. Patients with PD, especially those who are in advanced stages, are in great need of assistance, mostly from their family members or caregivers in terms of medical, emotional, and social support. The role of a caregiver becomes increasingly important with the progression of PD, the severity of motor impairment and increasing age of the patient. The nature and symptoms associated with PD can place significant stresses on the caregivers’ burden. As the prevalence of PD is estimated to more than double by 2030, it is important to recognize and alleviate the burden experienced by caregivers. This study focused on the impact of the clinical features on the QoL of PD patients, and of their caregivers. This study included PD patients along with their caregivers and was undertaken at the Malaysian Parkinson's Disease Association from June 2016 to November 2016. Clinical features of PD patients were assessed using the Movement Disorder Society revised Unified Parkinson Disease Rating Scale (MDS-UPDRS); the Hoehn and Yahr Staging of Parkinson's Disease were used to assess the severity and Parkinson's disease activities of daily living scale were used to assess the disability of Parkinson’s disease patients. QoL of PD patients was measured using the Parkinson's Disease Questionnaire-39 (PDQ-39). The revised version of the Zarit Burden Interview assessed caregiver burden. At least one of the clinical features affected PD patients’ QoL, and at least one of the QoL domains affected the caregivers’ burden. Clinical features ‘Saliva and Drooling’, and ‘Dyskinesia’ explained 29% of variance in QoL of PD patients. The QoL domains ‘stigma’, along with ‘emotional wellbeing’ explained 48.6% of variance in caregivers’ burden. Clinical features such as saliva, drooling and dyskinesia affected the QoL of PD patients. The PD patients’ QoL domains such as ‘stigma’ and ‘emotional well-being’ influenced their caregivers’ burden.

Keywords: carers, quality of life, clinical features, Malaysia

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Authors: Kohkan Shamsi

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Background: MRI and PET are now extensively utilized in Alzheimer's disease (AD) trials for patient eligibility, efficacy assessment, and safety evaluations but including imaging in AD trials impacts site selection process, patient recruitment, and patient retention. Methods: PET/MRI are performed at baseline and at multiple follow-up timepoints. This requires prospective site imaging qualification, evaluation of phantom data, training and continuous monitoring of machines for acquisition of standardized and consistent data. This also requires prospective patient/caregiver training as patients must go to multiple facilities for imaging examinations. We will share our experience form one of the largest AD programs. Lesson learned: Many neurological diseases have a similar presentation as AD or could confound the assessment of drug therapy. The inclusion of wrong patients has ethical and legal issues, and data could be excluded from the analysis. Centralized eligibility evaluation read process will be discussed. Amyloid related imaging abnormalities (ARIA) were observed in amyloid-β trials. FDA recommended regular monitoring of ARIA. Our experience in ARIA evaluations in large phase III study at > 350 sites will be presented. Efficacy evaluation: MRI is utilized to evaluate various volumes of the brain. FDG PET or amyloid PET agents has been used in AD trials. We will share our experience about site and central independent reads. Imaging logistic issues that need to be handled in the planning phase will also be discussed as it can impact patient compliance thereby increasing missing data and affecting study results. Conclusion: imaging must be prospectively planned to include standardizing imaging methodologies, site selection process and selecting assessment criteria. Training should be transparently conducted and documented. Prospective patient/caregiver awareness of imaging requirement is essential for patient compliance and reduction in missing imaging data.

Keywords: Alzheimer's disease, ARIA, MRI, PET, patient recruitment, retention

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Authors: Prisa Damrongsiri, Kittinan Pongpianskul, Mario Kubek, Herwig Unger

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Apps are today the most important possibility to adapt mobile phones and computers to fulfill the special needs of their users. Location- and context-sensitive programs are hereby the key to support the interaction of the user with his/her environment and also to avoid an overload with a plenty of dispensable information. The contribution shows, how a trusted, secure and really bi-directional communication and interaction among users and their environment can be established and used, e.g. in the field of home automation.

Keywords: apps, context-sensitive, location-sensitive, self-configuration, mobile computing, smart home

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Authors: Natasha Yasmin Felles, Gerard Riley

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Background and Aims: Relationship breakdown is typical when one partner lives with an acquired brain injury caused by issues like a stroke. Research has found that the perception of relationship satisfaction decreases following such an injury among non-injured partners. Non-injured partners also are found to experience caregiver stress/burden as they immediately have to take the role of a caregiver along with being a partner of the injured. Research has also found that the perception of a continuous relationship, i.e. the perception of the relationship to be essentially the same as it was before the injury, also changes among those caregiving partners. However, there is a lack of available intervention strategies that can help those partners with both individual and relationship difficulties. The aim of this case study was to conduct a pilot test of an intervention aimed to explore whether it is possible to support a partner to experience greater continuity within the relationship poststroke, and what benefits such a change might have. Method: A couple, where one partner experienced an acquired brain injury poststroke were provided with Integrated Behavioural Couples Therapy for 3-months. The intervention addressed goals identified as necessary by the couple and by the formulation of their individual and relationship difficulties, alongside the goal of promoting relationship continuity. Before and after measures were taken using a battery of six questionnaires to evaluate changes in perceptions of continuity, stress, and other aspects of the relationship. Results: Both quantitative and qualitative data showed that relationship continuity was improved after the therapy, as were the measures of stress and other aspects of the relationship. The stress felt by the person with the acquired brain injury also showed some evidence of improvement. Conclusion: The study found that perceptions of relationship continuity can be improved by therapy and that improving these might have a beneficial impact on the stress felt by the carer, their satisfaction with the relationship and overall levels of conflict and closeness within the relationship. The study suggested the value of further research on enhancing perceptions of continuity in the relationship after an acquired brain injury. Currently, the findings of the study have been used to develop a pilot feasibility study to collect substantive evidence on the impact of the intervention on the couples and assess its feasibility and acceptability, which will help in further developing a specific generalized relationship continuity intervention, that will be beneficial in preventing relationship breakdown in the future.

Keywords: acquired brain injury, couples therapy, relationship continuity, stroke

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Authors: Akulov M. A., Zaharov V. O., Jurishhev P. E., Tomskij A. A.

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Introduction: Spasticity is a severe consequence of stroke, leading to profound disability, decreased quality of life and decrease of rehabilitation efficacy [4]. Spasticity is often associated with pain syndrome, arising from joint damage of paretic limbs (postural arthropathy) or painful spasm of paretic limb muscles. It is generally accepted that injection of botulinum toxin into a cramped muscle leads to decrease of muscle tone and improves motion range in paretic limb, which is accompanied by pain alleviation. Study aim: To evaluate the change in pain syndrome intensity after incections of botulinum toxin A (Xeomin) in stroke patients with upper limb spasticity. Patients and methods. 21 patients aged 47-74 years were evaluated. Inclusion criteria were: acute stroke 4-7 months before the inclusion into the study, leading to spasticity of wrist and/or finger flexors, elbow flexor or forearm pronator, associated with severe pain syndrome. Patients received Xeomin as monotherapy 90-300 U, according to spasticity pattern. Efficacy evaluation was performed using Ashworth scale, disability assessment scale (DAS), caregiver burden scale and global treatment benefit assessment on weeks 2, 4, 8 and 12. Efficacy criterion was the decrease of pain syndrome by week 4 on PQLS and VAS. Results: The study revealed a significant improvement of measured indices after 4 weeks of treatment, which persisted until the 12 week of treatment. Xeomin is effective in reducing muscle tone of flexors of wrist, fingers and elbow, forearm pronators. By the 4th week of treatment we observed a significant improvement on DAS (р < 0,05), Ashworth scale (1-2 points) in all patients (р < 0,05), caregiver burden scale (р < 0,05). A significant decrease of pain syndrome by the 4th week of treatment on PQLS (р < 0,05) и VAS (р < 0,05) was observed. No adverse effect were registered. Conclusion: Xeomin is an effective treatment of pain syndrome in postural upper limb spasticity after stroke. Xeomin treatment leads to a significant improvement on PQLS and VAS.

Keywords: botulinum toxin, pain syndrome, spasticity, stroke

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Authors: Candida Petrogalli, Giovanni Incerti, Luigi Solazzi

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This paper describes three lumped parameters models for the study of the dynamic behaviour of a boom crane. The models proposed here allow evaluating the fluctuations of the load arising from the rope and structure elasticity and from the type of the motion command imposed by the winch. A calculation software was developed in order to determine the actual acceleration of the lifted mass and the dynamic overload during the lifting phase. Some application examples are presented, with the aim of showing the correlation between the magnitude of the stress and the type of the employed motion command.

Keywords: crane, dynamic model, overloading condition, vibration

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Authors: Ana Ferraz, Martim Santos, M. Graça Pereira

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Distress among parents of children with acute lymphoblastic leukemia (ALL) is common during treatment and can persist several years post-diagnosis, impacting the adjustment of children and parents themselves. Current evidence is needed to examine the scope and nature of parental distress in childhood ALL. This review focused on associated variables, predictors, and outcomes of parental distress following their ALL diagnosis of their child. PubMed, Web of Science, and PsycINFO databases were searched for English and Spanish papers published from 1983 to 2021. PRISMA statement was followed, and papers were evaluated through a standardized methodological quality assessment tool (NHLBI). Of the 28 papers included, 16 were evaluated as fair, eight as good, and four as poor. Regarding results, 11 papers reported subgroup differences, and 15 found potential predictors of parental distress, including sociodemographic, psychosocial, psychological, family, health, and ALL-specific variables. Significant correlations were found between parental distress, social support, illness cognitions, and resilience, as well as contradictory results regarding the impact of sociodemographic variables on parental distress. Family cohesion and caregiver burden were associated with distress, and the use of healthy coping strategies was associated with less anxiety. Caregiver strain contributed to distress, and the overall impact of illness positively predicted anxiety in mothers and somatization in fathers. Differences in parental distress were found regarding group risk, time since diagnosis, and treatment phases. Thirteen papers explored the outcomes of parental distress on psychological, family, health, and social/education outcomes. Parental distress was the most important predictor of family strain. Significant correlations were found between parental distress at diagnosis and further psychological adjustment of parents themselves and their children. Most papers reported correlations between parental distress on children’s adjustment and quality of life, although few studies reported no association. Correlations between maternal depression and child participation in education and social life were also found. Longitudinal studies are needed to better understand parental distress and its consequences on health outcomes, in particular. Future interventions should focus mainly on parents on distress reduction and psychological adjustment, both in parents and children over time.

Keywords: childhood acute lymphoblastic leukemia, family, parental distress, psychological adjustment, quality of life

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Authors: Meiyan Gao, Zongmin Wang, Haibo Yang, Qiuhua Liang

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Under the background of global climate change and rapid development of modern urbanization, the frequency of climate disasters such as extreme precipitation in cities around the world is gradually increasing. In this paper, Hi-PIMS model is used to simulate the "720" flood in Zhengzhou, and the continuous stages of flood resilience are determined with the urban flood stages are divided. The flood resilience curve under the influence of multiple factors were determined and the urban flood toughness was evaluated by combining the results of resilience curves. The flood resilience of urban unit grid was evaluated based on economy, population, road network, hospital distribution and land use type. Firstly, the rainfall data of meteorological stations near Zhengzhou and the remote sensing rainfall data from July 17 to 22, 2021 were collected. The Kriging interpolation method was used to expand the rainfall data of Zhengzhou. According to the rainfall data, the flood process generated by four rainfall events in Zhengzhou was reproduced. Based on the results of the inundation range and inundation depth in different areas, the flood process was divided into four stages: absorption, resistance, overload and recovery based on the once in 50 years rainfall standard. At the same time, based on the levels of slope, GDP, population, hospital affected area, land use type, road network density and other aspects, the resilience curve was applied to evaluate the urban flood resilience of different regional units, and the difference of flood process of different precipitation in "720" rainstorm in Zhengzhou was analyzed. Faced with more than 1,000 years of rainstorm, most areas are quickly entering the stage of overload. The influence levels of factors in different areas are different, some areas with ramps or higher terrain have better resilience, and restore normal social order faster, that is, the recovery stage needs shorter time. Some low-lying areas or special terrain, such as tunnels, will enter the overload stage faster in the case of heavy rainfall. As a result, high levels of flood protection, water level warning systems and faster emergency response are needed in areas with low resilience and high risk. The building density of built-up area, population of densely populated area and road network density all have a certain negative impact on urban flood resistance, and the positive impact of slope on flood resilience is also very obvious. While hospitals can have positive effects on medical treatment, they also have negative effects such as population density and asset density when they encounter floods. The result of a separate comparison of the unit grid of hospitals shows that the resilience of hospitals in the distribution range is low when they encounter floods. Therefore, in addition to improving the flood resistance capacity of cities, through reasonable planning can also increase the flood response capacity of cities. Changes in these influencing factors can further improve urban flood resilience, such as raise design standards and the temporary water storage area when floods occur, train the response speed of emergency personnel and adjust emergency support equipment.

Keywords: urban flood resilience, resilience assessment, hydrodynamic model, resilience curve

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