Search results for: Caregivers

Authors: Rubai M. Ochieng

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Cancer, which accounts for 7 percent of deaths per year in Kenya, is the third highest cause of death after infectious and cardiovascular diseases. Awareness Campaigns have tended to focus on leading cancers including breast and cervical for women as well as prostrate and Esophageal for men. Consequently, less common cancers such as Acute Myeloid Leukemia (AML) are rarely properly understood by the general population and a section of the medical fraternity. Diagnoses of AML in patients who may not have heard about it sometimes results in shock, denial and confusion not just to the diagnosed, but also to their family and friends. The diagnosed and caregivers are bound to receive a lot of contradicting information about prognosis, care and treatment of AML. This information, which often comes from diverse sources including doctors, friends, internet and social media platforms, causes further confusion and panic. The situation is handled differently by different people. Religious people sometimes resort to prayer. This paper, written from the perspective of a care giver, is based on data collected from a case of Acute Myeloid Leukemia diagnosed in a 32 year old male who lost his life within six weeks of diagnosis. The sample constitutes of 16 people who participated in prayers. Out of this total, 5 were males including the diagnosed and 11 were females. All the 16 were Christians of protestant orientation including Anglicans, Quakers and Church of God members. Data was collected by the researcher herself through participant of observation. Findings discuss how the 16 participants prayed individually at different times, together in an overnight prayer meeting and every morning through a group social media platform. They shared songs and words of encouragement from the bible. The group prayed for healing, peace and strength to the diagnosed and family, financial breakthrough and doctors’ work and decisions, among other challenges that came with the situation. The paper reveals the immense benefits of prayer to the diagnosed and his close relatives and friends. They include acceptance of the condition and a positive attitude in handling the challenges that arose from the disease and treatment processes. The challenges arising from the prayer approach of handling the situation are also discussed. The paper concludes that prayer as therapy goes a long way in cancer management.

Keywords: acute myeloid leukemia, Kenya, participant observation, prayer

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Authors: Etsuko Sakairi

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In 2016 Japan started to enforce domestic legislation in the form of the Act of Elimination of Discrimination against Persons with Disability, along with ratifying the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2014. However, it is not clear what kind of situations would be considered cases of discrimination in relation to issues of sexuality according to this legislation. Furthermore, in March 2016, the United Nations Committee on the Elimination of Discrimination against Women (CEDAW) made a recommendation to the Japanese government to conduct a study of the forced sterilization of women under the Eugenic Protection Act. This research is carried out against this background in which the experiences of people with disabilities have often been restricted by caregivers and family members—as evidenced by the high number of eugenics surgeries performed on people with disabilities without their consent. This research contributes to this topic by presenting voices and perspectives of key people, especially focusing on the voices of carers who are working with people with physical disabilities in a Non-Western country, Japan. Furthermore, since 90% of the research on the topic of sexuality of people with disabilities is conducted in Western countries, the voices from Non-Western countries in this regard are greatly lacking. In the part of the research presented here, the researcher has employed a feminist disability theory to understand the circumstances surrounding people with physical disabilities. She has gathered voices from 58 carers by using an on-line questionnaire (55) and by conducting face-to-face interviews (3). In this presentation, the researcher will introduce experiences and thoughts regarding sexuality and people with disabilities by using carers’ own words. One of the major findings was carers’ concern about a boundary issue. Although each carer has had unique experiences depending on their professional or personal relationship with people with physical disabilities, many of them shared some similar viewpoints. This included a concern that assisting with the meeting of some forms of sexual needs 9e.g. assisted masturbation) would result in the possibility of transgressing the boundary between the carer and the person with physical disability. Most of the carer did not have any opportunity to receive any trainings regarding to sexuality of people with disabilities. Furthermore, most of the carers conceptualized that ‘Keeping a sexual dignity of people with disabilities’ means practicing a ‘Principle of same sex assistance’. The researcher hopes that this presentation provides an opportunity for audiences to look back at their own community and to think about what sexuality of people with physical disabilities means to their carers as well as to look back at their own practice in relation to this issue.

Keywords: Carer, Japan, physical disabilities, sexuality

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Authors: Maria Hopkins, Sarah Koch, Fred Biasini

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Autism is lifelong disorder that affects one out of every 110 Americans. The deficits that accompany Autism Spectrum Disorders (ASD), such as abnormal behaviors and social incompetence, often make it extremely difficult for these individuals to gain functional independence from caregivers. These long-term implications necessitate an immediate effort to improve social skills among children with an ASD. Any technology that could teach individuals with ASD necessary social skills would not only be invaluable for the individuals affected, but could also effect a massive saving to society in treatment programs. The overall purpose of the first study was to develop, implement, and evaluate an avatar tutor for social skills training in children with ASD. “Face Say” was developed as a colorful computer program that contains several different activities designed to teach children specific social skills, such as eye gaze, joint attention, and facial recognition. The children with ASD were asked to attend to FaceSay or a control painting computer game for six weeks. Children with ASD who received the training had an increase in emotion recognition, F(1, 48) = 23.04, p < 0.001 (adjusted Ms 8.70 and 6.79, respectively) compared to the control group. In addition, children who received the FaceSay training had higher post-test scored in facial recognition, F(1, 48) = 5.09, p < 0.05 (adjusted Ms: 38.11 and 33.37, respectively) compared to controls. The findings provide information about the benefits of computer-based training for children with ASD. Recent research suggests the value of also using socially assistive robots with children who have an ASD. Researchers investigating robots as tools for therapy in ASD have reported increased engagement, increased levels of attention, and novel social behaviors when robots are part of the social interaction. The overall goal of the second study was to develop a social robot designed to teach children specific social skills such as emotion recognition. The robot is approachable, with both an animal-like appearance and features of a human face (i.e., eyes, eyebrows, mouth). The feasibility of the robot is being investigated in children ages 7-12 to explore whether the social robot is capable of forming different facial expressions to accurately display emotions similar to those observed in the human face. The findings of this study will be used to create a potentially effective and cost efficient therapy for improving the cognitive-emotional skills of children with autism. Implications and study findings using the robot as an intervention tool will be discussed.

Keywords: autism, intervention, technology, emotions

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Authors: Leandra Prempeh, Emily Malugen

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Prenatal drug exposure can have a molecular impact on the hypothalamic and reward genes that regulate feeding behavior. This can impact feeding regulation, resulting in feeding difficulties and growth failure. This was potentially seen in “McKayla,” a 19- month old girl with a history of in-utero drug exposure, patent ductus arteriosus, and gastroesophageal reflux disease who presented for intensive day treatment feeding therapy. She was diagnosed with Avoidant Restrictive Food Intake Disorder, described as total food refusal and meeting 100% of her caloric needs from a gastrostomy tube. The primary goals during intensive feeding therapy were to increase her oral intake and decrease her reliance on supplementation with formula. Several behavioral antecedent manipulations were implemented to establish consistent responding and make progress towards treatment goals. This included multiple modified bolus placements (using underloaded and Nuk brush), reinforcement contingencies, and variety fading before stability was finally achieved. Following, increasing retention of bites then increasing volume and variety were goals targeted. From treatment onset to the last 3 days of treatment, McKayla's rate of rapid acceptance of bite presentations increased significantly from 33.33% to 93.13%, rapid swallowing went from 0.00% to 92.32%, and her percentage of inappropriate mealtime behavior and expels decreased from 58.33% and 100% to 2.31% and 7.68%, respectively. Overall, the treatment team successfully introduced and increased the bite size of 7 pureed foods, generalize the treatment to caregivers with high integrity, and began facilitating tube weaning. She was receiving about 33.42% of her needs by mouth at the time of discharge. Other nutritional concerns addressed during treatment included drinking a nutritionally complete drink out of an open cup and age appropriate growth. McKayla continued to have emesis almost daily, as was her baseline before starting treatment; however, the frequency during mealtime decreased. Overall, McKayla responded well to treatment. She had a very slow response to treatment and required a lot of antecedent manipulations to establish consistent responding. As the literature suggests, [drug]-exposed neonates, like McKayla, may be at increased risk for nutritional and growth challenges that may persist throughout development. This supports the need for longterm follow-up of infant growth.

Keywords: behavioral intervention, feeding problems, in-utero drug exposure, intensive multidisciplinary intervention

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Authors: Melissa K. Hord, Stephen P. Whiteside

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Impairment in functioning is a requirement for diagnosing psychopathology, identifying individuals in need of treatment, and documenting improvement with treatment. Further, identifying different types of functional impairment can guide educators and treatment providers. However, most assessment tools focus on symptom severity and few measures assess impairment associated with childhood anxiety disorders. The child- and parent-report versions of the Child Sheehan Disability Scale (CSDS) are measures that may provide useful information regarding impairment. The purpose of the present study is to examine whether children diagnosed with different anxiety disorders have greater impairment in school or home functioning based on self or parent report. The sample consisted of 844 children ages 5 to 19 years of age (mean 13.43, 61% female, 90.9% Caucasian), including 281 children diagnosed with obsessive compulsive disorder (OCD), 200 with generalized anxiety disorder (GAD), 176 with social phobia, 83 with separation anxiety, 61 with anxiety not otherwise specified (NOS), 30 with panic disorder, and 13 with panic with agoraphobia. To assess whether children and parents reported greater impairment in school or home functioning, a multivariate analysis of variance was conducted. (The assumptions of independence and homogeneity of variance were checked and met). A significant difference was found, Pillai's trace = .143, F (4, 28) = 4.19, p < .001, partial eta squared = .04. Post hoc comparisons using the Tukey HSD test indicated that children report significantly greater impairment in school with panic disorder (M=5.18, SD=3.28), social phobia (M=4.95, SD=3.20), and OCD (M=4.62, SD=3.32) compared to other diagnoses; whereas parents endorse significantly greater school impairment when their child has a social phobia (M=5.70, SD=3.39) diagnosis. Interestingly, both children and parents reported greater impairment in family functioning for an OCD (child report M=5.37, SD=3.20; parent report M=5.59, SD=3.38) diagnosis compared to other anxiety diagnoses. (Additional findings for the anxiety disorders associated with less impairment will also be presented). The results of the current study have important implications for educators and treatment providers who are working with anxious children. First, understanding that differences exist in how children and parents view impairment related to childhood anxiety can help those working with these families to be more sensitive during interactions. Second, evidence suggests that difficulties in one environment do not necessarily translate to another environment, thus caregivers may benefit from careful explanation of observations obtained by educators. Third, results support the use of the CSDS measure by treatment providers to identify impairment across environments in order to more effectively target interventions.

Keywords: anxiety, childhood, impairment, school functioning

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Authors: Aarti Agarwal, Ajmal Khan

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Background and Objective: Breathing difficulty is most distressing symptom for the patient and their caregivers providing palliative care to individuals with advanced malignancy. It needs to be tackled effectively and sometimes preemptively to provide relief from respiratory obstruction. Interventional procedures like tracheal stenting are becoming increasingly popular as a part of palliation for respiratory symptoms. We present a case of esophageal tumor earlier stented by Gastroenterologist to maintain esophageal patency, but the tumor outgrew to produce tracheal infiltration and thereby causing airway obstruction. Method and Result: 62-year-old man presented with unresectable Carcinoma oesophagus with inability to swallow. A metallic stent was placed by the gastroenterologist, to maintain esophageal patency and enable patient to swallow. Two months later, the patient returned to hospital in emergency with respiratory distress. CT neck and thorax revealed tumor infiltration through posterior tracheal wall. Lower extent of the tumor was till 1 cm above the carina. Airway stenting with Tracheo bronchial stent with Y configuration was planned under general anaesthesia with airway blocks. Superior Laryngeal Nerve Block, Glossopharyngeal block and Trans tracheal infiltration of local anaesthetics were performed. The patient was sedated with Fentanyl, Midazolam and propofol infusion but was breathing spontaneously. Once the rigid bronchoscope was placed inside trachea, breathing was supported with oxygen and sevoflurane. Initially, the trachea was cleared of tumor by coring. After creating space, tracheal stent was positioned and deployed. After stent placement patient was awakened, suctioned and nebulized. His respiratory stridor relieved instantaneously and was shifted to recovery. Conclusion: Airway blocks help in decreasing the incidence and severity of coughing during airway instrumentation thereby help in proper stent placement. They also reduce the requirement of general anaesthetics and hasten the post stenting recovery. Airway stent provided immediate relief to patient from symptoms of respiratory difficulty. Decision for early tracheal stenting may be taken for a select group of patients with high propensity for local spread, thereby avoiding respiratory complications and providing better quality of life in patients with inoperable malignancy.

Keywords: tracheal stent, respiratory difficulty, esophageal tumor, anaesthetic management

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Authors: Maria Klitgaard Christensen, Carmen Lim, Sukanta Saha, Danielle Cannon, Finley Prentis, Oleguer Plana-Ripoll, Natalie Momen, Kim Moesgaard Iburg, John J. McGrath

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Introduction: About a third of the world’s population will develop a mental disorder over their lifetime. Having a mental disorder is a huge burden in health loss and cost for the individual, but also for society because of treatment cost, production loss and caregivers’ cost. The objective of this study is to synthesize the international published literature on the economic burden of mental disorders. Methods: Systematic literature searches were conducted in the databases PubMed, Embase, Web of Science, EconLit, NHS York Database and PsychInfo using key terms for cost and mental disorders. Searches were restricted to 1980 until May 2019. The inclusion criteria were: (1) cost-of-illness studies or cost-analyses, (2) diagnosis of at least one mental disorder, (3) samples based on the general population, and (4) outcome in monetary units. 13,640 publications were screened by their title/abstract and 439 articles were full-text screened by at least two independent reviewers. 112 articles were included from the systematic searches and 31 articles from snowball searching, giving a total of 143 included articles. Results: Information about diagnosis, diagnostic criteria, sample size, age, sex, data sources, study perspective, study period, costing approach, cost categories, discount rate and production loss method and cost unit was extracted. The vast majority of the included studies were from Western countries and only a few from Africa and South America. The disorder group most often investigated was mood disorders, followed by schizophrenia and neurotic disorders. The disorder group least examined was intellectual disabilities, followed by eating disorders. The preliminary results show a substantial variety in the used perspective, methodology, costs components and outcomes in the included studies. An online tool is under development enabling the reader to explore the published information on costs by type of mental disorder, subgroups, country, methodology, and study quality. Discussion: This is the first systematic review synthesizing the economic cost of mental disorders worldwide. The paper will provide an important and comprehensive overview over the economic burden of mental disorders, and the output from this review will inform policymaking.

Keywords: cost-of-illness, health economics, mental disorders, systematic review

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Authors: Karla Lebedoff, Susan Walsh, Michelle Bain

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Eczema is a chronic atopy condition requiring long-term daily management in children. Written action plans for other chronic atopic conditions, such as asthma and food allergies, are widely recommended and distributed to pediatric patients' parents and caregivers, seeking to improve clinical outcomes and become empowered to manage the patient's ever-changing symptoms. Written action plans for eczema, referred to as "asthma of the skin," are not routinely used in practice. Parents of children suffering from eczema rarely receive a written action plan to follow, and commendations supporting eczema action plans are inconsistent. Pediatric patients between birth and 18 years old who were followed for eczema at an urban Midwest community hospital were eligible to participate in this quality improvement project. At the initial visit, parents received instructions on individualized eczema action plans for their child and completed two validated surveys: Health Confidence Score (HCS) and Patient-Oriented Eczema Measure (POEM). Pre- and post-survey responses were collected, and clinical symptom presentation at follow-up were outcome determinants. Project implementation was guided by Institute for Healthcare Improvement's Step-up Framework and the Plan-Do-Study-Act cycle. This project measured clinical outcomes and parent confidence in self-management of their child's eczema symptoms with the responses from 26 participant surveys. Pre-survey responses were collected from 36 participants, though ten were lost to follow-up. Average POEM scores improved by 53%, while average HCS scores remained unchanged. Of seven completed in-person follow-up visits, six clinical progress notes documented improvement. Individualized eczema action plans can be seamlessly incorporated into primary and specialty care visits for pediatric patients suffering from eczema. Following a patient-specific eczema action plan may lessen the daily physical and mental burdens of uncontrolled eczema for children and parents, managing symptoms that chronically flare and recede. Furthermore, incorporating eczema action plans into practice potentially reduces the likely underestimated $5.3 billion economic disease burden of eczema on the U.S. healthcare system.

Keywords: atopic dermatitis, eczema action plan, eczema symptom management, pediatric eczema

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Authors: Smita Mathur

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Play is an innate, player-centric, joyful, fundamental activity of early childhood development that significantly contributes to social, emotional, and academic learning. Leveraging the power of play can enhance these domains by creating engaging, interactive, and developmentally appropriate learning experiences for young children. This research aimed to systematically examine young children’s play behaviors with a focus on four primary objectives: (1) the frequency and duration of on-task behaviors, (2) social interactions and emotional expressions during play, (3) the correlation between academic skills and play, and (4) identifying best practices for integrating play-based curricula. To achieve these objectives, a mixed-method study was conducted among young preschool-aged children in low socio-economic populations in the United States. The children were identified using purposive sampling. The children were observed during structured play in classrooms and unstructured play during outdoor playtime and in their home environments. The study sampled 97 preschool-aged children. A total of 3970 minutes of observations were coded to address the research questions. Thirty-seven percent of children lived in linguistically isolated families, and 76% lived in basic budget poverty. Children lived in overcrowded housing situations (67%), and most families had mixed citizenship status (66%). The observational study was conducted using the observation protocol during the Oxford Study Project. On-task behaviors were measured by tracking the frequency and duration of activities where children maintained focus and engagement. In examining social interactions and emotional expressions, the study recorded social interactions, emotional responses, and teacher involvement during play. The study aimed to identify best practices for integrating play-based curricula into early childhood education. By analyzing the effectiveness of different play-based strategies and their impact on on-task behaviors, social-emotional development, and academic skills, the research sought to provide actionable recommendations for educators and caregivers. The findings from study 1. Highlight play behaviors that increase on-task behaviors and academic, & social skills in young children. 2. Offers insights into teacher preparation and designing play-based curriculum 3. Research critiques observation as a data collection technique.

Keywords: play, early childhood education, social-emotional development, academic development

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Authors: Mariana Calderón, Rocío Murad, Natalia Acevedo, Laura León, Juliana Fonseca, Maria de los Angeles Balaguera Villa

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Recently, different countries and international organizations have put on their agenda the elimination of violence against people with disabilities. This research aims to evaluate the social dimensions of sexual violence against people with disabilities, particularly those with psychosocial and cognitive, in Colombia. Results reveal that 55% of people with disabilities that are survivors of sexual violence are younger than 29 years and 20,4 are people with cognitive and psychosocial disabilities. Colombian regions with better social positions presented more cases of sexual violence against people with disabilities. There were found access barriers for health, education and employment among this population, and there was also found poor data quality. Despite Colombia having an important normative framework aimed at preventing and attending to gender-based violence, it does not take into account people with disabilities specific needs. Additionally, it was found an insufficient implementation and appropriation of these norms, negative attitudes, and in general, a lack of service adaptation according to the needs, identities and circumstances of people with disabilities. Furthermore, among the factors that are exposing people with disabilities to sexual violence, it was found that family members tend to be the main aggressors, there are deep gaps in the sex education received by people with disabilities, imaginaries and perceptions about their sexuality are both hypersexualizing and presenting them as asexual. On the other hand, among protective factors, there were found body self-knowledge and conscience, acknowledgment of their sexuality and their sexual and reproductive rights and access to sex ed. Although during the last few years, there has occurred a positive change toward social inclusion of people with disabilities, specifically through their role in the political agenda and the recognition of their rights. More work is needed in order to guarantee their sexual and reproductive rights, particularly for persons with psychosocial and cognitive disabilities. This research results showed the importance of transforming persisting negative imaginaries about their sexuality and also enforcing and promoting their autonomy. In this sense, it is important to acknowledge gaps and barriers faced by them and create strategies to encourage their social inclusion through education, employment, and skill development. Nevertheless, it is necessary to keep contributing new evidence of the social determinants of health that are influencing the occurrence of sexual violence. This research understands sexual violence against people with disabilities in a multidimensional manner and offers the following recommendations: 1- To foment public sensitization and understanding of disabilities. 2- To increase parents, caregivers and officers’ commitment to the prevention and reduction of sexual violence. 3- To focus on the needs, identities and circumstances of people with disabilities.

Keywords: disabilities, sexual and reproductive rights, sexual violence, prevention

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Authors: Kuniaki Kudo, Raviraj Solanki, Kaushal Patel, Yash Virani

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This research mainly concerns optimizing UI test automation for large-scale web applications. The test target application is the HHAexchange homecare management WEB application that seamlessly connects providers, state Medicaid programs, managed care organizations (MCOs), and caregivers through one platform with large-scale functionalities. This study focuses on user interface automation testing for the WEB application. The quality assurance team must execute many manual users interface test cases in the development process to confirm no regression bugs. The team automated 346 test cases; the UI automation test execution time was over 17 hours. The business requirement was reducing the execution time to release high-quality products quickly, and the quality assurance automation team modernized the test automation framework to optimize the execution time. The base of the WEB UI automation test environment is Selenium, and the test code is written in Python. Adopting a compilation language to write test code leads to an inefficient flow when introducing scalability into a traditional test automation environment. In order to efficiently introduce scalability into Test Automation, a scripting language was adopted. The scalability implementation is mainly implemented with AWS's serverless technology, an elastic container service. The definition of scalability here is the ability to automatically set up computers to test automation and increase or decrease the number of computers running those tests. This means the scalable mechanism can help test cases run parallelly. Then test execution time is dramatically decreased. Also, introducing scalable test automation is for more than just reducing test execution time. There is a possibility that some challenging bugs are detected by introducing scalable test automation, such as race conditions, Etc. since test cases can be executed at same timing. If API and Unit tests are implemented, the test strategies can be adopted more efficiently for this scalability testing. However, in WEB applications, as a practical matter, API and Unit testing cannot cover 100% functional testing since they do not reach front-end codes. This study applied a scalable UI automation testing strategy to the large-scale homecare management system. It confirmed the optimization of the test case execution time and the detection of a challenging bug. This study first describes the detailed architecture of the scalable test automation environment, then describes the actual performance reduction time and an example of challenging issue detection.

Keywords: aws, elastic container service, scalability, serverless, ui automation test

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Authors: Catharina Lindberg, Cecilia Fagerstrom, Ania Willman

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Patients in high-tech care environments are usually dependent on both formal/informal caregivers and technology, highlighting their vulnerability and challenging their autonomy. Autonomy presumes that a person has education, experience, self-discipline and decision-making capacity. Reference to autonomy in relation to patients in high-tech care environments could, therefore, be considered paradoxical, as in most cases these persons have impaired physical and/or metacognitive capacity. Therefore, to understand the prerequisites for patients to experience autonomy in high-tech care environments and to support them, there is a need to enhance knowledge and understanding of the concept of patient autonomy in this care context. The development of concepts and theories in a practice discipline such as nursing helps to improve both nursing care and nursing education. Theoretical development is important when clarifying a discipline, hence, a theoretical framework could be of use to nurses in high-tech care environments to support and defend the patient’s autonomy. A meta-synthesis was performed with the intention to be interpretative and not aggregative in nature. An amalgamation was made of the results from three previous studies, carried out by members of the same research group, focusing on the phenomenon of patient autonomy from a patient perspective within a caring context. Three basic approaches to theory development: derivation, synthesis, and analysis provided an operational structure that permitted the researchers to move back and forth between these approaches during their work in developing a theoretical framework. The results from the synthesis delineated that patient autonomy in a high-tech care context is: To be in control though trust, co-determination, and transition in everyday life. The theoretical framework contains several components creating the prerequisites for patient autonomy. Assumptions and propositional statements that guide theory development was also outlined, as were guiding principles for use in day-to-day nursing care. Four strategies used by patients to remain or obtain patient autonomy in high-tech care environments were revealed: the strategy of control, the strategy of partnership, the strategy of trust, and the strategy of transition. This study suggests an extended knowledge base founded on theoretical reasoning about patient autonomy, providing an understanding of the strategies used by patients to achieve autonomy in the role of patient, in high-tech care environments. When possessing knowledge about the patient perspective of autonomy, the nurse/carer can avoid adopting a paternalistic or maternalistic approach. Instead, the patient can be considered to be a partner in care, allowing care to be provided that supports him/her in remaining/becoming an autonomous person in the role of patient.

Keywords: autonomy, caring, concept development, high-tech care, theory development

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Authors: Linneth Nkateko Mabila, Patrick Hulisani Demana, Tebogo Maria Mothiba

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Background: Sustaining adherence to antiretroviral therapy (ART) over the long term by people, especially children living with Human-Immunodeficiency Virus (HIV), requires accurate and consistent monitoring, and this is a particular challenge for countries in sub-Saharan Africa. However, the regularity and punctuality in monthly antiretroviral treatment collections indicate medication adherence to a certain extent since it has been revealed to be a significant determinant of the outcome of ART. Aim: This study assessed and described the pattern of monthly antiretroviral treatment collections among a cohort of virally unsuppressed HIV-positive children initiated and managed on ART in the rural public clinics of Mopani District, Limpopo, and explored the nurses' perceptions and views of the findings. Methods: A facility-based mixed-methods study was conducted to assess the honoring of scheduled monthly treatment collection practices by a cohort of HIV-positive children under 15 years initiated and managed on ART by Nurse Initiated Management of Antiretroviral Treatment (NIMART)-trained professional nurses (PNs) from 01 January 2015 to 31 December 2015 in public PHC clinics of Mopani District Municipality. This was followed by the exploration of the nurses' perceptions and views regarding this issue to share their experiences and knowledge acquired through managing these children on ART. Results: From a total of 7105 analysable visits, only 44% (3134) were honored as scheduled, with 40% (2828) of children presenting to the clinics after the scheduled appointment date – they missed their appointments, and 11% (768) of treatment collections that took place before the scheduled appointment date. This finding was further confirmed by 90% (97) of the nurses, who reported that they have children who miss scheduled appointments in their public clinics. The primary reasons for children missing appointments were related to caregivers' forgetfulness and conflict between the school schedule and the dates of clinic visits. Conclusion: We confirmed a high prevalence of non-adherence to scheduled monthly ART collections and the existence of health system, social, and caregiver-related factors that threaten treatment adherence and proper clinical outcomes. These findings suggest an urgent need for intervention since non-adherence to ARV therapy can be life-threatening to the child and poses the danger of reduced life expectancy.

Keywords: antiretroviral therapy (art), nimart, virally unsuppressed children, missed appointments

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Authors: Hacer Kobya Bulut, Ilknur Kahriman, Birsel C. Demirbag

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Introduction and Purpose: The lives of children with cancer are affected by long term hospitalizations in a negative way due to complications arising from diagnosis or treatment. However, the children's parents are known to have difficulties in meeting their children’s needs and providing home care after cancer treatment or during remission process. Supporting these children and their parents by giving a planned discharge training starting from the hospital and home care leads to reducing hospital applications, hospitalizations, hospital costs, shortening the length of hospital stay and increasing the satisfaction of the children with cancer and their families. This study was conducted to investigate the status of children and their parents' unplanned application to hospital and re-hospitalization. Methods: The study was carried out with 65 children with hematological malignancy in 0-17 age group and their families in a hematology clinic and polyclinic of a university hospital in Trabzon. Data were collected with survey methodology between August-November, 2015 through face to face interview using numbers, percentage and chi-square test in the evaluation. Findings: Most of the children were leukemia (90.8%) and 49.2% had been ill over 13 months. Few of the parents (32.3%) stated that they had received discharge and home care training (24.6%) but most of them (69.2%) found themselves enough in providing home care. Very few parents (6.2%) received home care training after their children being discharged and the majority of parents (61.5%) faced difficulties in home care and had no one to call around them. The parents expressed that in providing care to their children with hematological malignance, they faced difficulty in feeding them (74.6%), explaining their disease (50.0%), giving their oral medication (47.5%), providing hygiene (43.5%) and providing oral care (39.3%). The question ‘What are the emergency situations in which you have to bring your children to a doctor immediately?' was replied as fever (89.2%), severe nausea and vomiting (87.7%), hemorrhage (86.2%) and pain (81.5%). The study showed that 50.8% of the children had unplanned applications to hospitals and 33.8% of them identified as unplanned hospitalization and the first causes of this were fever and pain. The study showed that the frequency of applications (%78.8) and hospitalizations (%81.8) was higher for boys and a statistically significant difference was found between gender and unplanned applications (X=4.779; p=0.02). Applications (48.5%) and hospitalizations (40.9%) were found lower for the parents who had received hospital discharge training, and a significant difference was determined between receiving training and unplanned hospitalizations (X=8.021; p=0.00). Similarly, applications (30.3%) and hospitalizations (40.9%) was found lower for the ones who had received home care training, and a significant difference was determined between receiving home care training and unplanned hospitalizations (X=4.758; p=0.02). Conclusion: It was found out that caregivers of children with cancer did not receive training related to home care and complications about treatment after discharging from hospital, so they faced difficulties in providing home care and this led to an increase in unplanned hospital applications and hospitalizations.

Keywords: cancer, children, unplanned application, unplanned hospitalization

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Authors: Ingrid Van Der Heijden, Naeemah Abrahams, Jane Harries

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Background: Commonly, womanhood is defined as the qualities considered to be natural to or characteristic of a woman. However, womanhood is not a static concept; it is contextual and negotiable. For women with disabilities, gender roles or ‘qualities’ of womanhood are often overstated or contradicted because of assumptions of weakness, passivity, asexuality and infertility. Currently, little is known about how disability stigma intersects with notions of womanhood to make women with disabilities vulnerable to violence, or how women navigate this intersection to prevent or protect themselves from violence. Objective: To describe how the stigmatized constructions of womanhood and disability promote women with physical disabilities’ exposure to or protection from violence. Methods: Qualitative data for this paper comes from a doctoral study involving women with disabilities living in Cape Town, South Africa. It presents data from repeat in-depth interviews with 30 women with a range of physical impairments. Women attending protective workshops, rehabilitative centers and residential care facilities for people living with disabilities were invited to participate. Consent procedures and interviews were conducted by the first author (who is herself a woman living with a physical disability), and a female research assistant/translator who is a qualified occupational therapist. Reasonable accommodation is central to the methodology and the study as a whole. Findings: Descriptive and thematic analyses reveal how stigma and local constructions around womanhood, as well as women’s self-image and physical limitations, promotes women’s exposure to psychological, physical and sexual violence. It reveals how disabled women feel they are presumed incapable of living up to expectations of a ‘proper’ woman. This plays out as psychological violence, with women reporting that they feel ‘devalued,' ‘rejected’ and deprived of lasting intimate relationships. Furthermore, forms of psychological violence perpetuate physical and sexual violence. Women also discuss using strategies to prevent violence; by refusing to date, avoiding certain places or avoiding isolation, creating awareness, hiding their physical impairments, and exaggerating their ‘femininity.' Implications: Service providers need to be made aware of women’s violence experiences, and provide a range of accessible psychological and mental health services to women living with disabilities, as well as raising awareness around disability, and violence prevention, among caregivers, men, and women. Violence awareness and prevention interventions need to involve disability experts, researchers and people with disabilities.

Keywords: disability, gender, stigma, violence awareness and prevention interventions

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Authors: Satendra Pal Singh, Dalip Kr. Kakru, Jyoti Mishra, Rajesh Thakur, Tarana Sarwat

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COVID-19 is still an intrigue as far as morbidity or mortality is concerned. The rate of recovery varies from person to person, & it depends upon the accessibility of the healthcare system and the roles played by the physicians and caregivers. It is envisaged that with the passage of time, people would become immune to this virus, and those who are vulnerable would sustain themselves with the help of vaccines. The proposed study deals with the severeness of COVID-19 is associated with some specific biomarkers linked to correlate age and gender. We will be assessing the overall homeostasis of the persons who were affected by the coronavirus infection and also of those who recovered from it. Some people show more severe effects, while others show very mild symptoms, however, they show low CT values. Thus far, it is unclear why the new strain of Covid has different effects on different people in terms of age, gender, and ABO blood typing. According to data, the fatality rate with heart disease was 10.5 percent, 7.3 percent were diabetic, and 6 percent who are already infected from other comorbidities. However, some COVID-19 cases are worse than others & it is not fully explainable as of date. Overall data show that the ABO blood group is effective or prone to the risk of SARS-COV2 infection, while another study also shows the phenotypic effects of the blood group related to covid. It is an accepted fact that females have more strong immune systems than males, which may be related to the fact that females have two ‘X’ chromosomes, which might contain a more effective immunity booster gene on the X chromosome, and are capable to protect the female. Also specific sex hormones also induce a better immune response in a specific gender. This calls for in-depth analysis to be able to gain insight into this dilemma. COVID-19 is still not fully characterized, and thus we are not very familiar with its biology, mode of infection, susceptibility, and overall viral load in the human body. How many virus particles are needed to infect a person? How, then, comorbidity contribute to coronavirus infection? Since the emergence of this virus in 2020, a large number of papers have been published, and seemingly, vaccines have been prepared. But still, a large number of questions remain unanswered. The proneness of humans for infection by covid-19 needs to be established to be able to develop a better strategy to fight this virus. Our study will be on the Impact of demography on the Severity of covid-19 infection & at the same time, will look into gender-specific sensitivity of Covid-19 and the Operational variation of different biochemical markers in Covid-19 positive patients. Besides, we will be studying the co-relation, if any, of COVID severity & ABO Blood group type and the occurrence of the most common blood group type amongst positive patience.

Keywords: coronavirus, ABO blood group, age, gender

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Authors: Amit Zriker, Anat Freund

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The aim of the study was to conduct a thorough examination into the multiple complexities of bringing a foreign caregiver into the home to care for older adults in the Haredi society, by relating to the perspectives of the older adult and his family members. Research questions were: What is the meaning of bringing a foreign caregiver into the home in Haredi society, from the point of view of the older adult’s family members, and what are the implications of these meanings in the context of developing social policies and interventions? The current study was a qualitative-phenomenological study, which relates to “the lived experience” of those involved in the studied phenomenon. In the framework of the study, the participants included 15 adult Haredi sons and daughters of elderly impaired parents who receive homecare from a foreign caregiver. Data collection was carried out using in-depth, semi-structured interviews; the interview guidelines are comprised of the following content worlds: the meanings of aging in Haredi families; the decision-making process in relation to providing home care assistance for elderly impaired parents; making decisions regarding bringing a foreign caregiver into the home to care for an elderly parent; the daily routine after bringing in a foreign caregiver; bringing in a foreign caregiver vs. the society and vs. the Haredi establishment; and more. The issue of bringing a foreign caregiver into the home in the context of a faith-based society has received only scant and partial research attention to date. Nevertheless, in light of the growing elderly population in the Haredi society in Israel, and in closed, faith-based societies, in general; there is a growing need to bring foreign caregivers into the home as a possible solution to the “aging-in-place” problem in these societies. The separatist nature, and the collectivist and faith-based lifestyle of the Haredi society present unique challenges and needs in the process of employing a foreign caregiver. Moreover, the foreign caregiver also brings his/her own cultural world to the encounter, meaning, this process involves the elderly impaired individual, his/her family members, as well as the foreign caregiver. Therefore, it is important to understand their attitudes, perceptions and interactions, in order to create a good fit among all involved parties. The innovation and uniqueness of the current study is in its in-depth exploration of a phenomenon through an emotional-cultural lens. The study findings also contribute to the creation of social policy in the field of nursing, which will be adapted and culturally sensitive to Haredi society, and other faith-based societies.

Keywords: culturally-sensitive intervention, faith-based society, foreign caregiver, Haredi society

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Authors: J. Jessa

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Background: Autism is a pervasive developmental disorder, the incidence of which has significantly increased in recent years. Children with autism have impairments in social skills, communication, and imagination. Children with autism has more common than healthy children feeding problems: food selectivity, problems with gastrointestinal tract: diarrhea, constipations, abdominal pain, reflux and others. Many parents of autistic children report that after implementation of gluten-, casein- and sugar free diet those symptoms disappear and even cognitive functions become better. Some children begin to understand speech and to communicate with parents, regain eye contact, become more calm, sleep better and has better concentration. Probably at the root of this phenomenon lies elimination from the diet peptides construction of which is similar to opiates. Enhanced permeability of gut causes absorption of not fully digested opioid-like peptides from food, like gluten and casein and probably others (proteins from soy and corn) which impact on brain of autistic children. Aim of the study: The aim of the study is to assess the safety of gluten-free diet in children with autism, aged 2,5-7. Methods: Participants of the study (n=70) – children aged 2,5-7 with autism are divided into 3 groups. The first group (research group) are patients whose parents want to implement a gluten-free diet. The second group are patients who have been recommended to eliminate from the diet artificial substances, such as preservatives, artificial colors and flavors, and others (control group 1). The third group (control group 2) are children whose parents did not agree for implementation of the diet. Caregivers of children on the diet are educated about the specifics of the diet and how to avoid malnutrition. At the start of the study we exclude celiac disease. Before the implementation of the diet we performe a blood test for patients (morphology, ferritin, total cholesterol, dry peripheral blood drops to detect some genetic metabolic diseases), plasma aminogram) and urine tests (excretion of ions: Mg, Na, Ca, the profile of organic acids in urine), which assess nutritional status as well as the psychological test assessing the degree of the child's psychological functioning (PEP-R). All of these tests will be repeated after one year from the implementation of the diet. Results: To the present moment we examined 42 children with autism. 12 of children are on gluten- free diet. Our preliminary results are promising. Parents of 9 of them report that, there is a big improvement in child behavior, concentration, less aggression incidents, better eye contact and better verbal skills. Conclusion: Our preliminary results suggest that dietary intervention may positively affect developmental outcome for some children diagnosed with ASD.

Keywords: gluten free diet, autism spectrum disorder, autism, blood test

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Authors: Irene Kretchy, Frances Owusu-Daaku, Samuel Danquah

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Hypertension is the leading risk factor for cardiovascular diseases, and a major cause of death and disability worldwide. This study examined whether psychosocial variables influenced patients’ perception and experience of side effects of their medicines, how they coped with these experiences and the impact on mental health and medication adherence to conventional hypertension therapies. Methods: A hospital-based mixed methods study, using quantitative and qualitative approaches was conducted on hypertensive patients. Participants were asked about side effects, medication adherence, common psychological symptoms, and coping mechanisms with the aid of standard questionnaires. Information from the quantitative phase was analyzed with the Statistical Package for Social Sciences (SPSS) version 20. The interviews from the qualitative study were audio-taped with a digital audio recorder, manually transcribed and analyzed using thematic content analysis. The themes originated from participant interviews a posteriori. Results: The experiences of side effects – such as palpitations, frequent urination, recurrent bouts of hunger, erectile dysfunction, dizziness, cough, physical exhaustion - were categorized as no/low (39.75%), moderate (53.0%) and high (7.25%). Significant relationships between depression (x 2 = 24.21, P < 0.0001), anxiety (x 2 = 42.33, P < 0.0001), stress (x 2 = 39.73, P < 0.0001) and side effects were observed. A logistic regression model using the adjusted results for this association are reported – depression [OR = 1.9 (1.03 – 3.57), p = 0.04], anxiety [OR = 1.5 (1.22 – 1.77), p = < 0.001], and stress [OR = 1.3 (1.02 – 1.71), p = 0.04]. Side effects significantly increased the probability of individuals to be non-adherent [OR = 4.84 (95% CI 1.07 – 1.85), p = 0.04] with social factors, media influences and attitudes of primary caregivers further explaining this relationship. The personal adoption of medication modifying strategies, espousing the use of complementary and alternative treatments, and interventions made by clinicians were the main forms of coping with side effects. Conclusions: Results from this study show that contrary to a biomedical approach, the experience of side effects has biological, social and psychological interrelations. The result offers more support for the need for a multi-disciplinary approach to healthcare where all forms of expertise are incorporated into health provision and patient care. Additionally, medication side effects should be considered as a possible cause of non-adherence among hypertensive patients, thus addressing this problem from a Biopsychosocial perspective in any intervention may improve adherence and invariably control blood pressure.

Keywords: biopsychosocial, hypertension, medication adherence, psychological disorders

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Authors: Mathieu Audet, Monica Soliman, Emilie Eve Gravel, Rebecca Friesdorf

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Access to higher education is critical for reducing social inequalities. The Canada Learning Bond (CLB) is a government savings incentive aimed at increasing higher education access for children of low income families by providing money toward a Registered Education Savings Plan. To better understand the educational and financial decision-making of low income families, Employment Social Development Canada conducted qualitative fieldwork with eligible parents and children, teachers, and community organizations promoting the Bond. Insights from this fieldwork were then used to develop letters to better target the needs and experiences of eligible families. In the present study, we conducted a randomized controlled trial with children ages 12 to 13, the oldest cohort of eligible children, to test the effectiveness of the new letters. Parents or caregivers of 150,088 eligible children were assigned to one of five letter conditions promoting the Bond or to a control condition that did not receive a letter. The letter conditions were: (a) the standard letter from past outreach, (b) a letter presenting the exact amount the child was eligible to receive, enhancing the salience of benefits, (c) a letter with a social norm, (d) a letter with an image emphasizing the feasibility of higher education by presenting the diversity of options (i.e., college, trade schools, apprenticeships) – many participants interviewed viewed that university was unfeasible, and (e) a letter minimizing references to 'saving' (i.e., not framing the Bond explicitly as a savings incentive) – a concept that did not resonate with low income families who felt they could not afford to save. The exact amount was also presented in letters (c) through (e). The letter minimizing references to 'saving' and presenting the exact amount had the highest net take-up rate at 6.6%, compared to 3.5% for the standard letter group. Furthermore, this trial’s BI-informed letters showed the largest impact on take-up so far, with a net take-up of 5.7% compared to 3.0% and 3.9% in the first two trials. This research highlights the value of mixed-method approaches combining qualitative and behavioural insights methods for developing context-sensitive interventions for social programs. By gaining a deeper understanding of the needs and experiences of program users through qualitative fieldwork, and then integrating these insights into behaviourally informed communications, we were able to increase take-up of an education savings program, which may ultimately improve access to higher education in children of low income families.

Keywords: access to higher education, behavioral insights, government, innovation, mixed-methods, social programs

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Authors: Corbel Camille, Le Cerf Flora, Capriz Françoise, Vaillant-Ciszewicz Anne-Julie, Breaud Jean, Guerin Olivier, Corveleyn Xavier

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Background: The medical environment can generate stressful and anxiety-provoking situations for patients, particularly during painful care procedures for the older population. These stressful environments have deleterious effects on the quality of care and can even put the patient at risk and set the care team up for failure. The search for a solution is, therefore, imperative. The development of new technologies, such as virtual reality (VR), seems to be an answer to this problem. Objectives: The objective of this study is to compare the effects of virtual reality on pain and anxiety when caring for older hospitalized people with the effects of usual care. More precisely, different individual factors (age, cognitive level, individual preferences, etc.) and different virtual reality universes (personalized or non-personalized) are studied to understand the role of these factors in reducing pain and anxiety during care procedures. The aim of this study is to improve the quality of life of patients and caregivers in their work environment. Method: This mono-centered, randomized, controlled study was conducted from September 2023 to September 2024 on 120 participants recruited from the geriatric departments of the Cimiez Hospital, Nice, France. Participants are randomized into three groups: a control group, a personalized VR group and a non-personalized VR group. Each participant is followed during a painful care session. Data are collected before, during and after the care, using measures of pain (Algoplus and numerical scale) and anxiety (Hospital anxiety scale and numerical scale). Physiological assessments with an oximeter are also performed to collect both heart and respiratory rate measurements. The implementation of the care will be assessed among healthcare providers to evaluate its effects on the difficulty and fatigue associated with the care. Additionally, a questionnaire (System Usability Scale) will be administered at the conclusion of the study to determine the willingness of healthcare providers to integrate VR into their daily care practices. Result: The preliminary results indicate significant effects on anxiety (p=.001) and pain (p=<.001) following the VR intervention during care, as compared to the control group. Conclusion: The preliminary results suggest that VRI appears to be a suitable and effective method for reducing anxiety and pain among older hospitalized individuals compared with standard care. Finally, the experiences of healthcare professionals involved will also be considered to assess the impact of these interventions on working conditions and patient support.

Keywords: anxiety, care, pain, older adults, virtual reality

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Authors: Dercan Gencbas, Hatice Bebis, Sue Moorhead

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In the nursing process, many of the nursing classification systems were created to be used in international. From these, NANDA-I, Nursing Outcomes Classification (NOC) and Nursing Interventions Classification (NIC). In this direction, the main objective of this study is to establish a model for caregivers in hospitals and communities in Turkey and to ensure that nursing outputs are assessed by NOC-based measures. There are many scales to measure Urinary Incontinence (UI), which is very common in children, in old age, vaginal birth, NOC scales are ideal for use in the nursing process for comprehensive and holistic assessment, with surveys available. For this reason, the purpose of this study is to evaluate the validity of the NOC outputs and indicators used for UI NANDA-I. This research is a methodological study. In addition to the validity of scale indicators in the study, how much they will contribute to recovery after the nursing intervention was assessed by experts. Scope validations have been applied and calculated according to Fehring 1987 work model. According to this, nursing inclusion criteria and scores were determined. For example, if experts have at least four years of clinical experience, their score was 4 points or have at least one year of the nursing classification system, their score was 1 point. The experts were a publication experience about nursing classification, their score was 1 point, or have a doctoral degree in nursing, their score was 2 points. If the expert has a master degree, their score was 1 point. Total of 55 experts rated Fehring as a “senior degree” with a score of 90 according to the expert scoring. The nursing interventions to be applied were asked to what extent these indicators would contribute to recovery. For coverage validity tailored to Fehring's model, each NOC and NOC indicator from specialists was asked to score between 1-5. Score for the significance of indicators was from 1=no precaution to 5=very important. After the expert opinion, these weighted scores obtained for each NOC and NOC indicator were classified as 0.8 critical, 0.8 > 0.5 complements, > 0.5 are excluded. In the NANDA-I / NOC / NIC system (guideline), 5 NOCs proposed for nursing diagnoses for UI were proposed. These outputs are; Urinary Continence, Urinary Elimination, Tissue Integrity, Self CareToileting, Medication Response. After the scales are translated into Turkish, the weighted average of the scores obtained from specialists for the coverage of all 5 NOCs and the contribution of nursing initiatives exceeded 0.8. After the opinions of the experts, 79 of the 82 indicators were calculated as critical, 3 of the indicators were calculated as supplemental. Because of 0.5 > was not obtained, no substance was removed. All NOC outputs were identified as valid and usable scales in Turkey. In this study, five NOC outcomes were verified for the evaluation of the output of individuals who have received nursing knowledge of UI and variant types. Nurses in Turkey can benefit from the outputs of the NOC scale to perform the care of the elderly incontinence.

Keywords: nursing outcomes, content validity, nursing diagnosis, urinary incontinence

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Authors: Yun-Shan Tsai, Si-Ping Lin, En-Chieh Lin, Xin-Hong Chen, Shin-Yun Ho, Shin-Hong Huang, Ching-ju Hsieh

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Background and significance: Uncorrected refractive errors and cataracts are the main visually debilitating ophthalmological abnormalities in adult participants with intellectual disability (ID). However, not all adult participants with ID may receive a regular and timely ophthalmological assessment. Consequently, some of the ocular diseases may not be diagnosed until late, thereby causing unnecessary ocular morbidity. In addition, recent clinical practice and researches have also suggested that eye-care services for this group are neglected. Purpose: To investigate the unmet need for eye care services, clinical characteristics of cataract, visual function, surgical outcome and prognostic predictors in adult participants with ID at Taipei City Hospital in Taiwan. Methods: This is a one-year prospective clinical study. We recruited about 120 eyes of 60 adult participants with ID who were received cataract surgery. Caregivers of all participants received a questionnaire on current eye care services. Clinical demographic data, such as age, gender, and associated systemic diseases or syndromes, were collected. All complete ophthalmologic examinations were performed 1 month preoperatively and 3 months postoperatively, including ocular biometry, visual function, refractive status, morphology of cataract, associated ocular features, anesthesia methods, surgical types, and complications. Morphology of cataract, visual and surgical outcome was analyzed. Results: A total of 60 participants with mean age 43.66 ± 13.94 years, including 59.02% male and 40.98% female, took part in comprehensive eye-care services. The prevalence of unmet need for eye care services was high (about 70%). About 50% of adult participants with ID have bilateral cataracts at the time of diagnosis. White cataracts were noted in about 30% of all adult participants with ID at the time of presentation. Associated ocular disorders were included myopic maculopathy (4.54%), corneal disorders (11.36%), nystagmus (20.45%), strabismus (38.64%) and glaucoma (2.27%). About 26.7% of adult participants with ID underwent extracapsular cataract extraction whereas a phacoemulsification was performed in 100% of eyes. Intraocular lens implantation was performed in all eyes. The most common postoperative complication was posterior capsular opacification (30%). The mean best-corrected visual acuity was significantly improved from preoperatively (mean log MAR 0.48 ± 0.22) to at 3 months postoperatively (mean log MAR 0.045 ± 0.22) (p < .05). Conclusions: Regular follow up will help address the need for eye-care services in participants with ID. A high incidence of bilateral cataracts, as well as white cataracts, was observed in adult participants with ID. Because of early diagnosis and early intervention of cataract, the visual and surgical outcomes of cataract are good, but the visual outcomes are suboptimal due to associated ocular comorbidities.

Keywords: adult participants with intellectual disability, cataract, cataract surgery

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Authors: Aneal Khan, Elleine Allapitan, Desmond Koo, Katherine-Ann Piedalue, Shaneel Pathak, Utkarsh Subnis

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Background: Disease management of metabolic, genetic disorders is long-term and can be cumbersome to patients and caregivers. Patient-Reported Outcome Measures (PROMs) have been a useful tool in capturing patient perspectives to help enhance treatment compliance and engagement with health care providers, reduce utilization of emergency services, and increase satisfaction with their treatment choices. Currently, however, PROMs are collected during infrequent and decontextualized clinic visits, which makes translation of patient experiences challenging over time. The GRIT study aims to evaluate a digital health journal application called Zamplo that provides a personalized health diary to record self-reported health outcomes accurately and efficiently in patients with metabolic, genetic disorders. Methods: This is a randomized controlled trial (RCT) (1:1) that assesses the efficacy of Zamplo to increase patient activation (primary outcome), improve healthcare satisfaction and confidence to manage medications (secondary outcomes), and reduce costs to the healthcare system (exploratory). Using standardized online surveys, assessments will be collected at baseline, 1 month, 3 months, 6 months, and 12 months. Outcomes will be compared between patients who were given access to the application versus those with no access. Results: Seventy-seven patients were recruited as of November 30, 2021. Recruitment for the study commenced in November 2020 with a target of n=150 patients. The accrual rate was 50% from those eligible and invited for the study, with the majority of patients having Fabry disease (n=48) and the remaining having Pompe disease and mitochondrial disease. Real-time clinical responses, such as pain, are being measured and correlated to disease-modifying therapies, supportive treatments like pain medications, and lifestyle interventions. Engagement with the application, along with compliance metrics of surveys and journal entries, are being analyzed. An interim analysis of the engagement data along with preliminary findings from this pilot RCT, and qualitative patient feedback will be presented. Conclusions: The digital self-care journal provides a unique approach to disease management, allowing patients direct access to their progress and actively participating in their care. Findings from the study can help serve the virtual care needs of patients with metabolic, genetic disorders in North America and the world over.

Keywords: eHealth, mobile health, rare disease, patient outcomes, quality of life (QoL), pain, Fabry disease, Pompe disease

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Authors: Archil Undilashvili, Ketevan Stvilia, Dustin Gilbreath, Giorgi Dzneladze, Gordon Charchward

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Introduction: In recent years, diverse types of wheelchairs, both local production and imported, have been made available on the Georgian market for wheelchair users. Some types of wheelchairs are sold together with a service package, while the others, including the State Program, Supported locally-produced ones, don’t provide adjustment and maintenance service packages to users. Within the USAID Physical Rehabilitation Project in Georgia, a study was conducted to assess the impact of the wheelchair service provision in line with the WHO guidelines on the health and overall satisfaction of wheelchair users in Georgia. Methodology: A cross-sectional survey was conducted in May 2021. A structured questionnaire was used for telephone interviews that, along with socio-demographic characteristics, included questions for assessment of accessibility, availability, timeliness, cost and quality of wheelchair services received. Out of 1060 individuals listed in the census of wheelchair users, 752 were available for interview, with an actual response rate of 73.4%. 552 wheelchair users (31%) or their caregivers (69%) agreed to participate in the survey. In addition to using descriptive statistics, the study used multivariate matching of wheelchair users who received wheelchair services and who did not (control group). In addition, to evaluate satisfaction with service provision, respondents were asked to assess services. Findings: The majority (67%) of wheelchair users included in the survey were male. The average age of participants was 43. The three most frequently named reasons for using a wheelchair were cerebral palsy (29%), followed by stroke (18%), and amputation (12%). Users have had their current chair for four years on average. Overall, 60% of respondents reported that they were assessed before providing a wheelchair, but only half of them reported that their preferences and needs were considered. Only 13% of respondents had services in line with WHO guidelines and only 22% of wheelchair users had training when they received their current chair. 16% of participants said they had follow-up services, and 41% received adjustment services after receiving the chair. A slight majority (56%) of participants were satisfied with the quality of service provision and the service provision overall. Similarly, 55% were satisfied with the accessibility of service provision. A slightly larger majority (61%) were satisfied with the timeliness of service provision. The matching analysis suggests that users that received services in line with WHO guidelines were more satisfied with their chairs (the difference 17 point/0-100 scale) and they were four percentage points less likely to have health problems attributed to the chair. The regression analysis provides a similar finding of a 21 point increase in satisfaction attributable to services. Conclusion: The provision of wheelchair services in line with WHO guidelines and with follow-up services is likely to have a positive impact on the daily lives of wheelchair users in Georgia. Wheelchair services should be institutionalized as a standard component of wheelchair provision in Georgia.

Keywords: physical rehabilitation, wheelchair users, persons with disabilities, wheelchair production

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Authors: Bu Kyung Park

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Background: The survival rate of pediatric cancer patients has been increased. Thus, the needs of long-term management and follow-up education after discharge continue to grow. Purpose: The purpose of this study was to explore the experiences of pediatric cancer patients and their families from first diagnosis to returning their social life. The ultimate goal of this study was to assess which information and intervention did pediatric cancer patients and their families required and needed, so that this could provide fundamental information for developing educational content of web-based intervention program for pediatric cancer patients. Research Approach: This study was based on a descriptive qualitative research design using semi-structured focus group interview. Participants: Twelve pediatric cancer patients and 12 family members participated in a total six focus group interview sessions. Methods: All interviews were audiotaped after obtaining participants’ approval. The recordings were transcribed. Qualitative Content analysis using the inductive coding approach was performed on the transcriptions by three coders. Findings: Eighteen categories emerged from the six main themes: 1) Information needs, 2) Support system, 3) Barriers to treatment, 4) Facilitators to treatment, 5) Return to social life, 6) Healthcare system issues. Each theme had both pediatric cancer patients’ codes and their family members’ codes. Patients and family members had high information needs through the whole process of treatment, not only the first diagnosis but also after completion of treatment. Hospitals provided basic information on chemo therapy, medication, and various examinations. However, they were more likely to rely on information from other patients and families by word of mouth. Participants’ information needs were different according to their treatment stage (e.g., first admitted patients versus cancer survivors returning to their social life). Even newly diagnosed patients worried about social adjustment after completion of all treatment, such as return to school and diet and physical activity at home. Most family members had unpleasant experiences while they were admitted in hospitals and concerned about healthcare system issues, such as medical error and patient safety. Conclusions: In conclusion, pediatric cancer patients and their family members wanted information source which can provide tailored information based on their needs. Different information needs with patients and their family members based on their diagnosis, progress, stage of treatment were identified. Findings from this study will be used to develop a patient-centered online health intervention program for pediatric cancer patients. Pediatric cancer patients and their family members had variety fields of education needs and soak the information from various sources. Web-based health intervention program for them is required to satisfy their inquiries to provide reliable information.

Keywords: focus group interview, family caregivers, pediatric cancer patients, qualitative content analysis

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Authors: Anshu Gupta, Charu Gupta

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Background: Adolescence is the transitional period between puberty and adulthood. It is marked by immense turmoil in emotional and behavioral spheres. Adolescents are at risk of an array of behavioral and emotional problems, resulting in social, academic and vocational function impairments. Conflicts in the family and inability of the parents to cope with the changing demands of an adolescent have a negative impact on the overall development of the child. This augers ill for the individual’s future, resulting in depression, delinquency and suicides among other problems. Aim: The aim of the study was to compare the prevalence of behavioral and emotional problems in school going adolescents aged 13 to 15 years residing in Ludhiana city. Method: A total of 1380 school children in the age group of 13 to 15 years were assessed by the adolescent health screening questionnaire (FAPS) and Youth Self-Report (2001) questionnaire. Statistical significance was ascertained by t-test, chi-square test (x²) and ANOVA, as appropriate. Results: A considerably high prevalence of behavioral and emotional problems was found in school going adolescents (26.5%), more in girls (31.7%) than in boys (24.4%). In case of boys, the maximum problem was in the 13 year age group, i.e., 28.2%, followed by a significant decline by the age of 14 years, i.e., 24.2% and 15 years, i.e., 19.6%. In case of girls also, the maximum problem was in the 13 year age group, i.e., 32.4% followed by a marginal decline in the 14 years i.e., 31.8% and 15 year age group, i.e., 30.2%. Demographic factors were non contributory. Internalizing syndrome (22.4%) was the most common problem followed by the neither internalizing nor externalizing (17.6%) group. In internalizing group, most (26.5%) of the students were observed to be anxious/ depressed. Social problem was observed to be the most frequent (10.6%) among neither internalizing nor externalizing group. Aggressive behavior was the commonest (8.4%) among externalizing group. Internalizing problems, mainly anxiety and depression, were commoner in females (30.6%) than males (24.6%). More boys (16%) than girls (13.4%) were reported to suffer from externalizing disorders. A critical review of the data showed that most of the adolescents had poor knowledge about reproductive health. Almost 36% reported that the source of their information on sexual and reproductive health being friends and the electronic media. There was a high percentage of adolescents who reported being worried about sexual abuse (20.2%) with majority of them being girls (93.6%) reflecting poorly on the social setup in the country. About 41% of adolescents reported being concerned about body weight and most of them being girls (92.4%). Up to 14.5% reported having thoughts of using alcohol or drugs perhaps due to the easy availability of substances of abuse in this part of the country. 12.8% (mostly girls) reported suicidal thoughts. Summary/conclusion: There is a high prevalence of emotional and behavioral problems among school-going adolescents. Resolution of these problems during adolescence is essential for attaining a healthy adulthood. The need of the hour is to spread awareness among caregivers and formulation of effective management strategies including school mental health programme.

Keywords: adolescence, behavioral, emotional, internalizing problem

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Authors: Hennie Boeije, Renate Verkaik, Joke Korevaar

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In Dutch national policy, it is promoted that the elderly remain living at home longer. They are less often admitted to a nursing home or only later in life. While living at home, it is important that they experience a good quality of life. Care providers in primary care support this. In this study, it was investigated what quality of life means for the elderly and which characteristics care should have that supports living at home longer with quality of life. To explore this topic, a qualitative methodology was used. Four focus groups were conducted: two with elderly people who live at home and their family caregivers, one with district nurses employed in-home care services and one with elderly care physicians working in primary care. Next to this individual interviews were employed with general practitioners (GPs). In total 32 participants took part in the study. The data were thematically analysed with MaxQDA software for qualitative analysis and reported. Quality of life is a multi-faceted term for elderly. The essence of their description is that they can still undertake activities that matter to them. Good physical health, mental well-being and social connections enable them to do this. Own control over their life is important for some. They are of opinion that how they experience life and manage old age is related to their resilience and coping. Key terms in the definitions of quality of life by GPs are also physical and mental health and social contacts. These are the three pillars. Next, to this elderly care, physicians mention security and safety and district nurses add control over their own life and meaningful daily activities. They agree that with frail elderly people, the balance is delicate and a change in one of the three pillars can cause it to collapse like a house of cards. When discussing what support is needed, professionals agree on access to care with a low threshold, prevention, and life course planning. When care is provided in a timely manner, a worsening of the situation can be prevented. They agree that hospital care often is not needed since most of the problems with the elderly have to do with care and security rather than with a cure per se. GPs can consult elderly care physicians to lower their workload and to bring in specific knowledge. District nurses often signal changes in the situation of the elderly. According to them, the elderly predominantly need someone to watch over them and provide them with a feeling of security. Life course planning and advance care planning can contribute to uniform treatment in line with older adults’ wishes. In conclusion, all stakeholders, including elderly persons, agree on what entails quality of life and the quality of care that is needed to support that. A future challenge is to shape conditions for the right skill mix of professionals, cooperation between the professions and breaking down differences in financing and supply. For the elderly, the challenge is preparing for aging.

Keywords: elderly living at home, quality of life, quality of care, professional cooperation, life course planning, advance care planning

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Authors: Rozelle Labuschagne, Ronel Roos

Abstract:

Individuals often experience a reduction in physical function, quality of life and basic activities of daily living after surgery. This is exponentially true for high-risk patients, especially the elderly and frail individuals. Not much is known about the physical function, physical activity preferences and factors associated with the six-minute walk test of elderly individuals who would undergo elective abdominal surgery in South Africa. Such information is important to design effective prehabilitation physiotherapy programs prior to elective surgery. The purpose of the study was to describe the demographic profile and physical function of elderly patients who would undergo elective surgery and to determine factors associated with their six-minute walk test distance findings. A cross-sectional descriptive study in elderly patients older than 60 years of age who would undergo elective abdominal surgery were consecutively sampled at a private hospital in Pretoria, South Africa. Participants’ demographics were collected and physical function assessed with the Functional Comorbidity Index (FCI), DeMorton Mobility Index (DEMMI), Lawton-Brody Instrumental Activities of Daily Living Scale (IADL) and six-minute walk test (6MWT). Descriptive and inferential statistics were used for data analysis with IBM SPSS 25. A p-value ≤ 0.05 were deemed statistically significant. The pilot study consisted of 12 participants (female (n=11, 91.7%), male (n=1, 8.3%) with a mean age of 65.8 (±4.5) years, body mass index of 28 (±4.2) kg.m2 with one (8.3%) participant being a current smoker and four (33.3%) participants having a smoking history. Nine (75%) participants lived independently at home and three (25%) had caregivers. Participants reported walking (n=6, 50%), stretching exercises (n=1, 8.3%), household chores & gardening (n=2, 16.7%), biking/swimming/running (n=1, 8.3%) as physical activity preferences. Physical function findings of the sample were: mean FCI score 3 (±1.1), DEMMI score 81.1 (±14.9), IADL 95 (±17.3), 6MWT 435.50 (IQR 364.75-458.50) with percentage 6MWT distance achieved 81.8% (IQR 64.4%-87.5%). A strong negative correlation was observed between 6MWT distance walked and FCI (r = -0.729, p=0.007). The majority of study participants reported incorporating some form of physical activity into their daily life as form of exercise. Most participants did not achieve their predicted 6MWT distance indicating less than optimal levels of physical function capacity. The number of comorbidities as determined by the FCI was associated with the distance that participants could walk with the 6MWT. The results of this pilot study could be used to indicate which elderly individuals would benefit most from a pre-surgical rehabilitation program. The main goal of such a program would be to improve physical function capacity as measured by the 6MWT. Surgeons could refer patients based on age and number of comorbidities, as determined by the FCI, to potentially improve surgical outcomes.

Keywords: abdominal surgery, elderly, physical function, six-minute walk test

Procedia PDF Downloads 196

Authors: Khalid A. Salman, Shereen Wagih, Tariq Munshi, Musaed Almalki, Safwan Zatari, Zahid Khan

Abstract:

Aim: To measure exposure levels to family members and caregivers of Saudi patients treated with low dose I131 therapy, and household radiation exposure rate to predict different factors that can affect radiation exposure. Patients and methods: All adult self dependent patients with hyperthyroidism or cancer thyroid referred for low dose radioactive I131 therapy on outpatient basis are included. Radiation protection procedures are given to the participant and family members in details. TLD’s were dispensed to each participant in sufficient quantity for his/her family members living in the household. TLD’s are collected at fifth days post-dispense from patients who agreed to have a home visit during which the household is inspected and level of radiation contamination of surfaces was measured. Results: Thirty-two patients were enrolled in the current study, with a mean age of 43.1± 17.1 years Out of them 25 patients (78%) are females. I131 therapy was given in twenty patients (63%) for cancer thyroid of and for toxic goiter in the remaining twelve patients (37%), with an overall mean I131 dose of 24.1 ± 7.5mCi that is relatively higher in the former. The overall number of household family members and helpers of patients are 139, out of them77 are females (55.4%) & 62 are males (44.6%) with a mean age of 29.8± 17.6. The mean period of contact with the patient is 7.6 ±5.6hours. The cumulative radiation exposure shows that radiation exposure to all family members is below the exposure constraint (1mSv), with a range of 109 to 503uSv, and a mean value of 220.9±91 uSv. Numerical data shows a little higher exposure rate for family members of those who receive higher dose of I131 (patients with thyroid cancer) and household members who spent longer time with the patient, yet, the difference is statistically insignificant (P>0.05). Besides, no significant correlation was found between the degree of cumulative exposure of the family members to their gender, age, socioeconomic standard, educational level and residential factors. In the 21 home visits all data from bedrooms, reception areas and kitchens are below hazardous limits (0.5uSv/h) apart from bathrooms that give a slightly higher reading of 0.57±0.39 uSv/h in those with cancer thyroid who receive a higher radiation dose. A statistically significant difference was found between radiation exposure rate in bathrooms used by the patient versus those used by family members only, with a mean value of exposure rate of 0.701±0.21 uSv/h and 0.17±0.82 uSv/h respectively, with a p-value of 0.018 (<0.05). Conclusion: Family members of patients treated with low dose I131 on outpatient basis have a good compliance to radiation protection instruction if given properly with a cumulative radiation exposure rate evidently beyond the radiation exposure constraints of 1 mSv. Given I131 dose, hours spent with the patient, age, gender, socioeconomic standard, educational level and residential factors have no significant correlation with the cumulative radiation exposure. The patient bathroom exhibits more radiation exposure rate, needing more strict instructions for patient bathroom use and health hygiene.

Keywords: family members, radiation exposure, radioactive iodine therapy, radiation safety

Procedia PDF Downloads 275