Search results for: caregivers
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 258

Search results for: caregivers

48 Scalable UI Test Automation for Large-scale Web Applications

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

Abstract:

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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47 A Theoretical Framework of Patient Autonomy in a High-Tech Care Context

Authors: Catharina Lindberg, Cecilia Fagerstrom, Ania Willman

Abstract:

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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46 Nimart-trained Nurses' Perspectives Regarding Virally Unsuppressed Children HIV-positive on Antiretroviral Therapy and Missing Scheduled Clinic Visits: Mopani District, Limpopo Province

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

Abstract:

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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45 Investigating Unplanned Applications and Admissions to Hospitals of Children with Cancer

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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44 'It Is a Sin to Be in Love with a Disabled Woman': Stigma, Rejection and Intersections of Womanhood and Violence among Physically Disabled Women Living in South Africa

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

Abstract:

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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43 Study of COVID-19 Intensity Correlated with Specific Biomarkers and Environmental Factors

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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42 "At 60 – Old Age, at 70 – the Hoary Head": The Perceived Meaning of Bringing a Foreign Caregiver into the Home in the Haredi Society – Challenges and Barriers to Culturally-Sensitive Intervention

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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41 Safety of Implementation the Gluten - Free Diet in Children with Autism Spectrum Disorder

Authors: J. Jessa

Abstract:

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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40 Medication Side Effects: Implications on the Mental Health and Adherence Behaviour of Patients with Hypertension

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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39 Integrating Qualitative and Behavioural Insights to Increase the Take-Up of an Education Savings Program for Low Income Canadians

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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38 Randomized Controlled Trial for the Management of Pain and Anxiety Using Virtual Reality During the Care of Older Hospitalized Patients

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

Abstract:

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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37 Turkish Validation of the Nursing Outcomes for Urinary Incontinence and Their Sensitivities on Nursing Interventions

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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36 Need for Eye Care Services, Clinical Characteristics, Surgical Outcome and Prognostic Predictors of Cataract in Adult Participants with Intellectual Disability

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

Abstract:

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

Procedia PDF Downloads 278
35 The GRIT Study: Getting Global Rare Disease Insights Through Technology Study

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

Abstract:

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

Procedia PDF Downloads 125
34 The Positive Impact of Wheelchair Service Provision on the Health and Overall Satisfaction of Wheelchair Users with the Devices

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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33 Experiences of Pediatric Cancer Patients and Their Families: A Focus Group Interview

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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32 Prevalence of Behavioral and Emotional Problems in School Going Adolescents in India

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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31 A Multi-Perspective, Qualitative Study into Quality of Life for Elderly People Living at Home and the Challenges for Professional Services in the Netherlands

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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30 Physical Function and Physical Activity Preferences of Elderly Individuals Admitted for Elective Abdominal Surgery: A Pilot Study.

Authors: Rozelle Labuschagne, Ronel Roos

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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 171
29 A Study of The Factors Predicting Radiation Exposure to Contacts of Saudi Patients Treated With Low-Dose Radioactive Iodine (I-131)

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

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28 Examining the Independent Effects of Early Exposure to Game Consoles and Parent-Child Activities on Psychosocial Development

Authors: Rosa S. Wong, Keith T. S. Tung, Frederick K. Ho, Winnie W. Y. Tso, King-wa Fu, Nirmala Rao, Patrick Ip

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As technology advances, exposures in early childhood are no longer confined to stimulations in the surrounding physical environments. Children nowadays are also subject to influences from the digital world. In particular, early access to game consoles can cause risks to child development, especially when the game is not developmentally appropriate for young children. Overstimulation is possible and could impair brain development. On the other hand, recreational parent-child activities, including outdoor activities and visits to museums, require child interaction with parents, which is beneficial for developing adaptive emotion regulation and social skills. Given the differences between these two types of exposures, this study investigated and compared the independent effects of early exposure to a game console and early play-based parent-child activities on children’s long-term psychosocial outcomes. This study used data from a subset of children (n=304, 142 male and 162 female) in the longitudinal cohort study, which studied the long-term impact of family socioeconomic status on child development. In 2012/13, we recruited a group of children at Kindergarten 3 (K3) randomly from Hong Kong local kindergartens and collected data regarding their duration of exposure to game console and recreational parent-child activities at that time. In 2018/19, we re-surveyed the parents of these children who were matriculated as Form 1 (F1) students (ages ranging from 11 to 13 years) in secondary schools and asked the parents to rate their children’s psychosocial problems in F1. Linear regressions were conducted to examine the associations between early exposures and adolescent psychosocial problems with and without adjustment for child gender and K3 family socioeconomic status. On average, K3 children spent about 42 minutes on a game console every day and had 2-3 recreational activities with their parents every week. Univariate analyses showed that more time spent on game consoles at K3 was associated with more psychosocial difficulties in F1 particularly more externalizing problems. The effect of early exposure to game console on externalizing behavior remained significant (B=0.59, 95%CI: 0.15 to 1.03, p=0.009) after adjusting for recreational parent-child activities and child gender. For recreational parent-child activities at K3, its effect on overall psychosocial difficulties became insignificant after adjusting for early exposure to game consoles and child gender. However, it was found to have significant protective effect on externalizing problems (B=-0.65, 95%CI: -1.23 to -0.07, p=0.028) even after adjusting for the confounders. Early exposure to game consoles has negative impact on children’s psychosocial health, whereas play-based parent-child activities can foster positive psychosocial outcomes. More efforts should be directed to propagate the risks and benefits of these activities and urge the parents and caregivers to replace child-alone screen time with parent-child play time in daily routine.

Keywords: early childhood, electronic device, parenting, psychosocial wellbeing

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27 Relationship Demise After Having Children: An Analysis of Abandonment and Nuclear Family Structure vs. Supportive Community Cultures

Authors: John W. Travis

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There is an epidemic of couples separating after a child is born into a family, generally with the father leaving emotionally or physically in the first few years after birth. This separation creates high levels of stress for both parents, especially the primary parent, leaving her (or him) less available to the infant for healthy attachment and nurturing. The deterioration of the couple’s bond leaves parents increasingly under-resourced, and the dependent child in a compromised environment, with an increased likelihood of developing an attachment disorder. Objectives: To understand the dynamics of a couple, once the additional and extensive demands of a newborn are added to a nuclear family structure, and to identify effective ways to support all members of the family to thrive. Qualitative studies interviewed men, women, and couples after pregnancy and the early years as a family, regarding key destructive factors, as well as effective tools for the couple to retain a strong bond. In-depth analysis of a few cases, including the author’s own experience, reveal deeper insights about subtle factors, replicated in wider studies. Using a self-assessment survey, many fathers report feeling abandoned, due to the close bond of the mother-baby unit, and in turn, withdrawing themselves, leaving the mother without support and closeness to resource her for the baby. Fathers report various types of abandonment, from his partner to his mother, with whom he did not experience adequate connection as a child. The study identified a key destructive factor to be unrecognized wounding from childhood that was carried into the relationship. The study culminated in the naming of Male Postpartum Abandonment Syndrome (MPAS), describing the epidemic in industrialized cultures with the nuclear family as the primary configuration. A growing family system often collapses without a minimum number of adult caregivers per infant, approximately four per infant (3.87), which allows for proper healing and caretaking. In cases with no additional family or community beyond one or two parents, the layers of abandonment and trauma result in the deterioration of a couple’s relationship and ultimately the family structure. The solution includes engaging community in support of new families. The study identified (and recommends) specific resources to assist couples in recognizing and healing trauma and disconnection at multiple levels. Recommendations include wider awareness and availability of resources for healing childhood wounds and greater community-building efforts to support couples for the whole family to thrive.

Keywords: abandonment, attachment, community building, family and marital functioning, healing childhood wounds, infant wellness, intimacy, marital satisfaction, relationship quality, relationship satisfaction

Procedia PDF Downloads 198
26 Pandemic-Related Disruption to the Home Environment and Early Vocabulary Acquisition

Authors: Matthew McArthur, Margaret Friend

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The COVID-19 pandemic disrupted the stability of the home environment for families across the world. Potential disruptions include parent work modality (in-person vs. remote), levels of health anxiety, family routines, and caregiving. These disruptions may have interfered with the processes of early vocabulary acquisition, carrying lasting effects over the life course. Our justification for this research is as follows: First, early, stable, caregiver-child reciprocal interactions, which may have been disrupted during the pandemic, contribute to the development of the brain architecture that supports language, cognitive, and social-emotional development. Second, early vocabulary predicts several cognitive outcomes, such as numeracy, literacy, and executive function. Further, disruption in the home is associated with adverse cognitive, academic, socio-emotional, behavioral, and communication outcomes in young children. We are interested in how disruptions related to the COVID-19 pandemic are associated with vocabulary acquisition in children born during the first two waves of the pandemic. We are conducting a moderated online experiment to assess this question. Participants are 16 children (10F) ranging in age from 19 to 39 months (M=25.27) and their caregivers. All child participants were screened for language background, health history, and history of language disorders, and were typically developing. Parents completed a modified version of the COVID-19 Family Stressor Scale (CoFaSS), a published measure of COVID-19-related family stressors. Thirteen items from the original scale were replaced to better capture change in family organization and stability specifically related to disruptions in income, anxiety, family relations, and childcare. Following completion of the modified CoFaSS, children completed a Web-Based version of the Computerized Comprehension Task and the Receptive One Word Picture Vocabulary if 24 months or older or the MacArthur-Bates Communicative Development Inventory if younger than 24 months. We report our preliminary data as a partial correlation analysis controlling for age. Raw vocabulary scores on the CCT, ROWPVT-4, and MCDI were all negatively associated with pandemic-related disruptions related to anxiety (r12=-.321; r1=-.332; r9=-.509), family relations (r12=-.590*; r1=-.155; r9=-.468), and childcare (r12=-.294; r1=-.468; r9=-.177). Although the small sample size for these preliminary data limits our power to detect significance, this trend is in the predicted direction, suggesting that increased pandemic-related disruption across multiple domains is associated with lower vocabulary scores. We anticipate presenting data on a full sample of 50 monolingual English participants. A sample of 50 participants would provide sufficient statistical power to detect a moderate effect size, adhering to a nominal alpha of 0.05 and ensuring a power level of 0.80.

Keywords: COVID-19, early vocabulary, home environment, language acquisition, multiple measures

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25 A Stepped Care mHealth-Based Approach for Obesity with Type 2 Diabetes in Clinical Health Psychology

Authors: Gianluca Castelnuovo, Giada Pietrabissa, Gian Mauro Manzoni, Margherita Novelli, Emanuele Maria Giusti, Roberto Cattivelli, Enrico Molinari

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Diabesity could be defined as a new global epidemic of obesity and being overweight with many complications and chronic conditions. Such conditions include not only type 2 diabetes, but also cardiovascular diseases, hypertension, dyslipidemia, hypercholesterolemia, cancer, and various psychosocial and psychopathological disorders. The financial direct and indirect burden (considering also the clinical resources involved and the loss of productivity) is a real challenge in many Western health-care systems. Recently the Lancet journal defined diabetes as a 21st-century challenge. In order to promote patient compliance in diabesity treatment reducing costs, evidence-based interventions to improve weight-loss, maintain a healthy weight, and reduce related comorbidities combine different treatment approaches: dietetic, nutritional, physical, behavioral, psychological, and, in some situations, pharmacological and surgical. Moreover, new technologies can provide useful solutions in this multidisciplinary approach, above all in maintaining long-term compliance and adherence in order to ensure clinical efficacy. Psychological therapies with diet and exercise plans could better help patients in achieving weight loss outcomes, both inside hospitals and clinical centers and during out-patient follow-up sessions. In the management of chronic diseases clinical psychology play a key role due to the need of working on psychological conditions of patients, their families and their caregivers. mHealth approach could overcome limitations linked with the traditional, restricted and highly expensive in-patient treatment of many chronic pathologies: one of the best up-to-date application is the management of obesity with type 2 diabetes, where mHealth solutions can provide remote opportunities for enhancing weight reduction and reducing complications from clinical, organizational and economic perspectives. A stepped care mHealth-based approach is an interesting perspective in chronic care management of obesity with type 2 diabetes. One promising future direction could be treating obesity, considered as a chronic multifactorial disease, using a stepped-care approach: -mhealth or traditional based lifestyle psychoeducational and nutritional approach. -health professionals-driven multidisciplinary protocols tailored for each patient. -inpatient approach with the inclusion of drug therapies and other multidisciplinary treatments. -bariatric surgery with psychological and medical follow-up In the chronic care management of globesity mhealth solutions cannot substitute traditional approaches, but they can supplement some steps in clinical psychology and medicine both for obesity prevention and for weight loss management.

Keywords: clinical health psychology, mhealth, obesity, type 2 diabetes, stepped care, chronic care management

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24 Personal Data Protection: A Legal Framework for Health Law in Turkey

Authors: Veli Durmus, Mert Uydaci

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Every patient who needs to get a medical treatment should share health-related personal data with healthcare providers. Therefore, personal health data plays an important role to make health decisions and identify health threats during every encounter between a patient and caregivers. In other words, health data can be defined as privacy and sensitive information which is protected by various health laws and regulations. In many cases, the data are an outcome of the confidential relationship between patients and their healthcare providers. Globally, almost all nations have own laws, regulations or rules in order to protect personal data. There is a variety of instruments that allow authorities to use the health data or to set the barriers data sharing across international borders. For instance, Directive 95/46/EC of the European Union (EU) (also known as EU Data Protection Directive) establishes harmonized rules in European borders. In addition, the General Data Protection Regulation (GDPR) will set further common principles in 2018. Because of close policy relationship with EU, this study provides not only information on regulations, directives but also how they play a role during the legislative process in Turkey. Even if the decision is controversial, the Board has recently stated that private or public healthcare institutions are responsible for the patient call system, for doctors to call people waiting outside a consultation room, to prevent unlawful processing of personal data and unlawful access to personal data during the treatment. In Turkey, vast majority private and public health organizations provide a service that ensures personal data (i.e. patient’s name and ID number) to call the patient. According to the Board’s decision, hospital or other healthcare institutions are obliged to take all necessary administrative precautions and provide technical support to protect patient privacy. However, this application does not effectively and efficiently performing in most health services. For this reason, it is important to draw a legal framework of personal health data by stating what is the main purpose of this regulation and how to deal with complicated issues on personal health data in Turkey. The research is descriptive on data protection law for health care setting in Turkey. Primary as well as secondary data has been used for the study. The primary data includes the information collected under current national and international regulations or law. Secondary data include publications, books, journals, empirical legal studies. Consequently, privacy and data protection regimes in health law show there are some obligations, principles and procedures which shall be binding upon natural or legal persons who process health-related personal data. A comparative approach presents there are significant differences in some EU member states due to different legal competencies, policies, and cultural factors. This selected study provides theoretical and practitioner implications by highlighting the need to illustrate the relationship between privacy and confidentiality in Personal Data Protection in Health Law. Furthermore, this paper would help to define the legal framework for the health law case studies on data protection and privacy.

Keywords: data protection, personal data, privacy, healthcare, health law

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23 Effect of Timing and Contributing Factors for Early Language Intervention in Toddlers with Repaired Cleft Lip and Palate

Authors: Pushpavathi M., Kavya V., Akshatha V.

Abstract:

Introduction: Cleft lip and palate (CLP) is a congenital condition which hinders effectual communication due to associated speech and language difficulties. Expressive language delay (ELD) is a feature seen in this population which is influenced by factors such as type and severity of CLP, age at surgical and linguistic intervention and also the type and intensity of speech and language therapy (SLT). Since CLP is the most common congenital abnormality seen in Indian children, early intervention is a necessity which plays a critical role in enhancing their speech and language skills. The interaction between the timing of intervention and factors which contribute to effective intervention by caregivers is an area which needs to be explored. Objectives: The present study attempts to determine the effect of timing of intervention on the contributing maternal factors for effective linguistic intervention in toddlers with repaired CLP with respect to the awareness, home training patterns, speech and non-speech behaviors of the mothers. Participants: Thirty six toddlers in the age range of 1 to 4 years diagnosed as ELD secondary to repaired CLP, along with their mothers served as participants. Group I (Early Intervention Group, EIG) included 19 mother-child pairs who came to seek SLT soon after corrective surgery and group II (Delayed Intervention Group, DIG) included 16 mother-child pairs who received SLT after the age of 3 years. Further, the groups were divided into group A, and group B. Group ‘A’ received SLT for 60 sessions by Speech Language Pathologist (SLP), while Group B received SLT for 30 sessions by SLP and 30 sessions only by mother without supervision of SLP. Method: The mothers were enrolled for the Early Language Intervention Program and following this, their awareness about CLP was assessed through the Parental awareness questionnaire. The quality of home training was assessed through Mohite’s Inventory. Subsequently, the speech and non-speech behaviors of the mothers were assessed using a Mother’s behavioral checklist. Detailed counseling and orientation was done to the mothers, and SLT was initiated for toddlers. After 60 sessions of intensive SLT, the questionnaire and checklists were re-administered to find out the changes in scores between the pre- and posttest measurements. Results: The scores obtained under different domains in the awareness questionnaire, Mohite’s inventory and Mothers behavior checklist were tabulated and subjected to statistical analysis. Since the data did not follow normal distribution (i.e. p > 0.05), Mann-Whitney U test was conducted which revealed that there was no significant difference between groups I and II as well as groups A and B. Further, Wilcoxon Signed Rank test revealed that mothers had better awareness regarding issues related to CLP and improved home-training abilities post-orientation (p ≤ 0.05). A statistically significant difference was also noted for speech and non-speech behaviors of the mothers (p ≤ 0.05). Conclusions: Extensive orientation and counseling helped mothers of both EI and DI groups to improve their knowledge about CLP. Intensive SLT using focused stimulation and a parent-implemented approach enabled them to carry out the intervention in an effectual manner.

Keywords: awareness, cleft lip and palate, early language intervention program, home training, orientation, timing of intervention

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22 Parenting Interventions for Refugee Families: A Systematic Scoping Review

Authors: Ripudaman S. Minhas, Pardeep K. Benipal, Aisha K. Yousafzai

Abstract:

Background: Children of refugee or asylum-seeking background have multiple, complex needs (e.g. trauma, mental health concerns, separation, relocation, poverty, etc.) that places them at an increased risk for developing learning problems. Families encounter challenges accessing support during resettlement, preventing children from achieving their full developmental potential. There are very few studies in literature that examine the unique parenting challenges refugee families’ face. Providing appropriate support services and educational resources that address these distinctive concerns of refugee parents, will alleviate these challenges allowing for a better developmental outcome for children. Objective: To identify the characteristics of effective parenting interventions that address the unique needs of refugee families. Methods: English-language articles published from 1997 onwards were included if they described or evaluated programmes or interventions for parents of refugee or asylum-seeking background, globally. Data were extracted and analyzed according to Arksey and O’Malley’s descriptive analysis model for scoping reviews. Results: Seven studies met criteria and were included, primarily studying families settled in high-income countries. Refugee parents identified parenting to be a major concern, citing they experienced: alienation/unwelcoming services, language barriers, and lack of familiarity with school and early years services. Services that focused on building the resilience of parents, parent education, or provided services in the family’s native language, and offered families safe spaces to promote parent-child interactions were most successful. Home-visit and family-centered programs showed particular success, minimizing barriers such as transportation and inflexible work schedules, while allowing caregivers to receive feedback from facilitators. The vast majority of studies evaluated programs implementing existing curricula and frameworks. Interventions were designed in a prescriptive manner, without direct participation by family members and not directly addressing accessibility barriers. The studies also did not employ evaluation measures of parenting practices or the caregiving environment, or child development outcomes, primarily focusing on parental perceptions. Conclusion: There is scarce literature describing parenting interventions for refugee families. Successful interventions focused on building parenting resilience and capacity in their native language. To date, there are no studies that employ a participatory approach to program design to tailor content or accessibility, and few that employ parenting, developmental, behavioural, or environmental outcome measures.

Keywords: asylum-seekers, developmental pediatrics, parenting interventions, refugee families

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21 Risk and Protective Factors for the Health of Primary Care-Givers of Children with Autism Spectrum Disorders or Intellectual Disability: A Narrative Review and Discussion

Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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20 Exploring the Carer Gender Support Gap: Results from Freedom of Information Requests to Adult Social Services in England

Authors: Stephen Bahooshy

Abstract:

Our understanding of gender inequality has advanced in recent years. Differences in pay and societal gendered behaviour expectations have been emphasized. It is acknowledged globally that gender shapes everyone’s experiences of health and social care, including access to care, use of services and products, and the interaction with care providers. NHS Digital in England collects data from local authorities on the number of carers and people with support needs and the services they access. This data does not provide a gender breakdown. Caring can have many positive and negative impacts on carers’ health and wellbeing. For example, caring can improve physical health, provide a sense of pride and purpose, and reduced stress levels for those who undertake a caring role by choice. Negatives of caring include financial concerns, social isolation, a reduction in earnings, and not being recognized as a carer or involved and consulted by health and social care professionals. Treating male and female carers differently is by definition unequitable and precludes one gender from receiving the benefits of caring whilst potentially overburdening the other with the negatives of caring. In order to explore the issue on a preliminary basis, five local authorities who provide statutory adult social care services in England were sent Freedom of Information requests in 2019. The authorities were selected to include county councils and London boroughs. The authorities were asked to provide data on the amount of money spent on care at home packages to people over 65 years, broken down by gender and carer gender for each financial year between 2013 and 2019. Results indicated that in each financial year, female carers supporting someone over 65 years received less financial support for care at home support packages than male carers. Over the six-year period, this difference equated to a £9.5k deficit in financial support received on average per female carer when compared to male carers. An example of a London borough with the highest disparity presented an average weekly spend on care at home for people over 65 with a carer of £261.35 for male carers and £165.46 for female carers. Consequently, female carers in this borough received on average £95.89 less per week in care at home support than male carers. This highlights a real and potentially detrimental disparity in the care support received to female carers in order to support them to continue to care in parts of England. More research should be undertaken in this area to better explore this issue and to understand if these findings are unique to these social care providers or part of a wider phenomenon. NHS Digital should request local authorities collect data on gender in the same way that large employers in the United Kingdom are required by law to provide data on staff salaries by gender. People who allocate social care packages of support should consider the impact of gender when allocating support packages to people with support needs and who have carers to reduce any potential impact of gender bias on their decision-making.

Keywords: caregivers, carers, gender equality, social care

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19 Implementation of a Culturally Responsive Home Visiting Framework in Head Start Teacher Professional Development

Authors: Meilan Jin, Mary Jane Moran

Abstract:

This study aims to introduce the framework of culturally responsive home visiting (CRHV) to head start teacher professional sessions in the Southeastern of the US and investigate its influence on the evolving beliefs of teachers about their roles and relationships with families in-home visits. The framework orients teachers to an effective way of taking on the role of learner to listen for spoken and unspoken needs and look for family strengths. In addition, it challenges the deficit model that is grounded on 'cultural deprivation,' and it stresses the value of family cultures and advocates equal, collaborative parent-teacher relationships. The home visit reflection papers and focus group transcriptions of eight teachers have been collected since 2010 throughout a five-year longitudinal collaboration with them. Reflection papers were written by the teachers before and after introducing the CRHV framework, including the details of visit purposes and actions and their plans for later home visits. Particularly, the CRHV framework guided the teachers to listen and look for information about family-living environments; parent-child interactions; child-rearing practices; and parental beliefs, values, and needs. Two focus groups were organized in 2014 by asking the teachers to read their written reflection papers and then discussing their shared beliefs and experiences of home visits in recent years. The average length of the discussions was one hour, and the discussions were audio-recorded and transcribed verbatim. Moreover, the data were analyzed using constant comparative analysis, and the analysis was verified through (a) the uses of multiple data sources, (b) the involvement of multiple researchers, (c) coding checks, and (d) the provisions of the thick descriptions of the findings. The study findings corroborate that the teachers become to reposition themselves as 'knowledge seekers' through reorienting their cynosure toward 'setting stones' to learn, grow, and change rather than framing their home visits. The teachers also continually engage in careful listening, observing, questioning, and dialoguing, and these actions reflect their care toward parents. The value of teamwork with parents is advocated, and the teachers recognize that when parents feel empowered, they are active and committed to doing more for their children, which can further advantage proactive long-term parent-teacher collaborations. The study findings also validate that the framework is influential for educators to provide the experiences of home visiting that is culturally responsive and to share collaborative relationships with caregivers. The long-term impact of the framework further implies that teachers continue to put themselves in the position of evolving, including beliefs and actions, to better work with children and families who are culturally, ethnically, and linguistically different from them. This framework can be applicable to educators and professionals who are looking for avenues to bridge the relationship between home and school and parents and teachers.

Keywords: culturally responsive home visit, early childhood education, parent–teacher collaboration, teacher professional development

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