Search results for: child care homes

Authors: Karla Lebedoff, Susan Walsh, Michelle Bain

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

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

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Authors: A. Zurraini, Syed Alwi Sar, H. Helmy, H. Nazeefah

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Early Dementia Questionnaire (EDQ) was developed as a screening tool to detect patients with early dementia in primary care. It was developed based on 20 symptoms of dementia. From a preliminary study, EDQ had been shown to be a promising alternative for screening of early dementia. This study was done to further test on EDQ’s reliability and validity. Using a systematic random sampling, 200 elderly patients attending primary health care centers in Kuching, Sarawak had consented to participate in the study and were administered the EDQ. Geriatric Depression Scale (GDS) was used to exclude patients with depression. Those who scored >21 MMSE, were retested using the EDQ. Reliability was determined by Cronbach’s alpha for internal consistency and construct validity was assessed using confirmatory factor analysis (principle component with varimax rotation). The result showed that the overall Cronbach’s alpha coefficient was good which was 0.874. Confirmatory factor analysis on 4 factors indicated that the Cronbach’s alpha for each domain were acceptable with memory (0.741), concentration (0.764), emotional and physical symptoms (0.754) and lastly sleep and environment (0.720). Pearson correlation coefficient between the first EDQ score and the retest EDQ score among those with MMSE of >21 showed a very strong, positive correlation between the two variables, r = 0.992, N=160, P <0.001. The results of the validation study showed that Early Dementia Questionnaire (EDQ) is a valid and reliable tool to be used as a screening tool to detect early dementia in primary care.

Keywords: Early Dementia Questionnaire (EDQ), screening, primary care, construct validity

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Authors: Deirdre Mc Grath, Joanne Reid

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Background: Ovarian cancer is the leading cause of mortality among gynaecologic cancers in developed countries and the seventh most common cancer worldwide, with nearly 240,000 women diagnosed each year. Although it is recognized engaging in exercise results in positive health care outcomes, women with ovarian cancer are reluctant to participate. No evidence currently exists focusing on how to successfully implement an exercise intervention program for patients with ovarian cancer, using a realist approach. There is a requirement for the implementation of exercise programmes within the oncology health care setting as engagement in such interventions has positive health care outcomes for women with ovarian cancer both during and following treatment. Aim: To co-design the implementation of an exercise intervention for women following treatment for ovarian cancer. Methods: This study is a realist evaluation using quantitative and qualitative methods of data collection and analysis. Realist evaluation is well-established within the health and social care setting and has, in relation to this study, enabled a flexible approach to investigate how to optimise implementation of an exercise intervention for this patient population. This single centre study incorporates three stages in order to identify the underlying contexts and mechanisms which lead to the successful implementation of an exercise intervention for women who have had treatment for ovarian cancer. Stage 1 - A realist literature review. Stage 2 -Co-design of the implementation of an exercise intervention with women following treatment for ovarian cancer, their carer’s, and health care professionals. Stage 3 –Implementation of an exercise intervention with women following treatment for ovarian cancer. Evaluation of the implementation of the intervention from the perspectives of the women who participated in the intervention, their informal carers, and health care professionals. The underlying programme theory initially conceptualised before and during the realist review was developed further during the co-design stage. The evolving programme theory in relation to how to successfully implement an exercise for these women is currently been refined and tested during the final stage of this realist evaluation which is the implementation and evaluation stage. Results: This realist evaluation highlights key issues in relation to the implementation of an exercise intervention within this patient population. The underlying contexts and mechanisms which influence recruitment, adherence, and retention rates of participants are identified. Conclusions: This study will inform future research on the implementation of exercise interventions for this patient population. It is anticipated that this intervention will be implemented into practice as part of standard care for this group of patients.

Keywords: exercise, ovarian cancer, co-design, implementation

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Authors: Freya Harding, Anne Gatuguta, Chi Eziefula

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Introduction Research shows the quality of experiences of pregnancy, birth, and postpartum impacts the health and well-being of the mother and baby. This is recognised by the WHO in their recommendations ‘Intrapartum care for a positive childbirth experience’. The COVID-19 pandemic saw the transformation of the NHS Maternity services to prevent the transmission of COVID-19. Physical and social isolation may have affected women’s experiences of pregnancy, birth and postpartum; especially those of healthcare. Examples of such changes made to the NHS include both the reduction in volume of face-to-face consultations and restrictions to visitor time in hospitals. One notable detriment due to these changes was the absence of a partner during certain stages of birth. The aim of this study was to explore women’s experiences of pregnancy, birth, and postnatal period during the COVID-19 pandemic in the UK. Methods We collected qualitative data from women who had given birth during the COVID-19 pandemic. In-depth, semi-structured interviews were conducted with twelve participants recruited from mother and baby groups in Southeast England. Data were audio-recorded, transcribed verbatim, and analysed thematically using both inductive and deductive approaches. Ethics permission was granted from Brighton and Sussex Medical School (ER/BSMS9A83/1). Results Interviews were conducted with 12 women who gave birth between May 2020 and February 2021. Ages of the participants ranged between 28 and 42 years, most of which were white British, with one being Asian British. All participants were heterosexual and either married or co-habiting with their partner. Five participants worked in the NHS, and all participants had professional occupations. Women felt inadequately supported both socially and medically. An appropriate sense of control over their own birthing experience was lacking. Safety mechanisms, such as in-person visits from the midwife, had no suitable alternatives in place. Serious health issues were able to “slip through the net.” Mental health conditions in some of those interviewed worsened or developed. Similarly, reduced support from partners during birth and during the immediate postpartum period at the hospital, coupled with reduced ward staffing, resulted in some traumatic experiences; particularly for women who had undergone caesarean section. However, some unexpected positive effects were reported; one example being that partners were able to spend more time with their baby due to furlough schemes and working from home. Similarly, emergency care was not felt to have been compromised. Overall, six themes emerged: (1) Self-reported traumatic experiences, (2) Challenges of caring for a baby with reduced medical and social support, (3) Unexpected benefits to the parenting experience, (4) The effects of a sudden change in medical management (5) Poor communication from healthcare professionals (6) Social change; with subthemes of support accessing medical care, the workplace, family and friends, and antenatal & baby groups. Conclusions The results indicate that the healthcare system was unable to adequately deliver maternity care to facilitate positive pregnancy, birth, and postnatal experiences during the heights of the pandemic. The poor quality of such experiences has been linked an increased risk of long-term health complications in both the mother and child.

Keywords: pregnancy, birth, postpartum, postnatal, COVID-19, maternity, social support, qualitative, pandemic

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Authors: Behnaz Farahani, Razieh Sotoudeh, Ali Vahdani, Hamed Abdi

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Individual differences in eating behavior can cause underweight or overweight and obesity. Thus influencing factors on children’s eating behavior such as mothers’ feeding practices are needed to be more investigated. The goals of this survey are to evaluate the association of (i) parental pressure and children’s food avoidant tendency, (ii) parental restriction and children’s food approach tendency, (iii) modeling of healthy eating in front of children and their children’s eating behavior. 760 mothers of children aged 7-10 from schools in Isfahan were asked to complete questionnaires including Child Feeding Questionnaire, Children’s Eating Behavior Questionnaire, Modeling Questionnaire, and self-administered demographic questionnaire in which mothers reported their children’s height and weight as well. Of those mothers, 745 completed the questionnaires for the children’s index (mean age: 8.513±1.112) during the 2011-2012 school year. The results of this quantitative, descriptive, cross-sectional analysis indicated that “parental restriction” was positively associated with child food responsiveness (P,0.000) and food enjoyment (P,0.000) and surprisingly, it was positively associated with Food Fussiness(0.000) .Parental pressure to eat was positively associated with child satiety responsiveness (P,0.000), slowness (P,0.000), and fussiness (P,0.00) and negatively associated with Food responsiveness(p,0.000)and Enjoyment of food (p,0.002), modeling of healthy eating were positively associated with Enjoyment of food / q (p,0.000) and negatively with food fussiness (P,0.000). The results of this survey will improve interventions and maternal guidance on their feeding practices and their association with children’s eating behavior and weight.

Keywords: feeding practices, eating behavior, pressure to eat, restriction, modeling, satiety responsiveness, slowness in eating, food fussiness, food responsiveness, enjoyment of food

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Authors: Bill D. Geis

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Suicide wrongful death forensic cases are the fastest rising tort in mental health law. It is estimated that suicide-related cases have accounted for 15% of U.S. malpractice claims since 2006. Most suicide-related personal injury claims fall into the legal category of “wrongful death.” Though mental health experts may be called on to address a range of forensic questions in wrongful death cases, the central consultation that most experts provide is about the negligence element—specifically, the issue of whether the clinician met the clinical standard of care in assessing, treating, and managing the deceased person’s mental health care. Standards of care, varying from U.S. state to state, are broad and address what a reasonable clinician might do in a similar circumstance. This fact leaves the issue of the suicide standard of care, in each case, up to forensic experts to put forth a reasoned estimate of what the standard of care should have been in the specific case under litigation. Because the general state guidelines for standard of care are broad, forensic experts are readily retained to provide scientific and clinical opinions about whether or not a clinician met the standard of care in their suicide assessment, treatment, and management of the case. In the past and in much of current practice, the assessment of suicide has centered on the elicitation of verbalized suicide ideation. Research in recent years, however, has indicated that the majority of persons who end their lives do not say they are suicidal at their last medical or psychiatric contact. Near-term risk assessment—that goes beyond verbalized suicide ideation—is needed. Our previous research employed structural equation modeling to predict lethal suicide risk--eight negative thought patterns (feeling like a burden on others, hopelessness, self-hatred, etc.) mediated by nine transdiagnostic clinical factors (mental torment, insomnia, substance abuse, PTSD intrusions, etc.) were combined to predict acute lethal suicide risk. This structural equation model, the Lethal Suicide Risk Pattern (LSRP), Acute model, had excellent goodness-of-fit [χ2(df) = 94.25(47)***, CFI = .98, RMSEA = .05, .90CI = .03-.06, p(RMSEA = .05) = .63. AIC = 340.25, ***p < .001.]. A further SEQ analysis was completed for this paper, adding a measure of Acute Suicide Ideation to the previous SEQ. Acceptable prediction model fit was no longer achieved [χ2(df) = 3.571, CFI > .953, RMSEA = .075, .90% CI = .065-.085, AIC = 529.550].This finding suggests that, in this additional study, immediate verbalized suicide ideation information was unhelpful in the assessment of lethal risk. The LSRP and other dynamic, near-term risk models (such as the Acute Suicide Affective Disorder Model and the Suicide Crisis Syndrome Model)—going beyond elicited suicide ideation—need to be incorporated into current clinical suicide assessment training. Without this training, the standard of care for suicide assessment is out of sync with current research—an emerging dilemma for the forensic evaluation of suicide wrongful death cases.

Keywords: forensic evaluation, standard of care, suicide, suicide assessment, wrongful death

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Authors: Amanda Noble

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The process of exiting/escaping situations of sex trafficking can be arduous and fraught with numerous barriers. In this paper the results of a national Canadian study on escaping situations of sex trafficking is discussed. Surveys and focus groups were conducted with 201 stakeholders in 8 cities, including 50 survivors of sex trafficking, service providers, health care providers and police. The results show that survivors are both vulnerable to being exploited and experience barriers to exiting as a result of structural factors such as colonialism, poverty, and discrimination based on race and gender. Survivors also face numerous barriers within various systems such as child welfare and the legal system. In addition, survivors contend with multiple psychological and psychosocial factors when exiting including the trauma bond, complex trauma and mental health concerns, substance use, isolation, and adjusting to ‘mainstream’ life. In light of these factors, the service needs of survivors escaping sex trafficking are discussed, and promising practices, such as trauma-informed practice and working from a stages of change model are outlined. This paper is useful for service providers that work with survivors, policy makers, or anyone who has ever wondered why survivors that are not being physically detained don’t ‘just leave’ or escape their exploitative situations.

Keywords: Barriers, Exiting, Promising Practices, Sex Trafficking

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Authors: Billy Zou

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Statement of the Problem: The burden of mental illness and problem behaviors in adolescence has risen worldwide. While less than 50% of teens have access to traditional mental health care, more than 73% have smartphones. Internet-based interventions offer advantages such as cost-effectiveness, availability, and flexibility. Methodology & Theoretical Orientation: A literature review was done using a PubMed search with the words mental health app yielding 2113 results. 103 articles that met inclusion criteria were reviewed, and findings were then described and synthesized. Findings: 1. Computer-based CBT was found to be effective for OCD, depression, social phobia, and panic disorder. 2. Web-based psychoeducation reduced problem behavior and improved parental well-being. 3. There is limited evidence for mobile-phone-based apps, but preliminary results suggest computer-based interventions are transferrable to mobile apps. 4. Adherence to app-based treatment was correlated with impressions about the user interface Conclusion & Significance: There is evidence for the effectiveness of computer-based programs in filling the significant gaps that currently exist in mental health delivery in the United States and internationally. There is also potential and theoretical validity for mobile-based apps to do the same, though more data is needed.

Keywords: children's mental health, mental health app, child and adolecent psychiatry, digital therapy

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Authors: Aikaterini Tavoulari

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This research aims to address the types of repetitive behaviours (RBs) observed by adults in children with vision impairment (VI) or autism spectrum disorder (ASD), the explanations the adults employ to interpret these behaviours, and the impact RBs have on the child, the caregiver, the professional and society. The underlying reason for this is an attempt to discover any potential differences between two different disabilities in a comparative fashion. The study is based on the interpretivism paradigm and follows a qualitative approach. A comparative case study design based on the ecological systems theory (EST) is adopted. Thirty-five caregivers and accredited professionals were recruited (17 for the VI group, out of whom 8 were caregivers and 9 were professionals, and 18 for the ASD group, out of whom 9 were caregivers and 9 were professionals). Following the completion of a pilot study, all participants were interviewed regarding one specific child – their own child/student – via semi-structured interviews. During the interviews, the researcher used a research diary as a methodological tool and video elicitation as a facilitation tool. A cross-case analysis was conducted, and data were analysed according to the method of thematic analysis. A link has been indicated between VI and ASD, which concerns perceptions about the socially constructed manner in which an RB is perceived. ASD is perceived by the participants as a disability with challenging characteristics, such as an RB. The ASD group perceived RB as linked to ableism, social stigmatisation, and taboo, in contrast to VI, where the existence of RB seems to be a consequence of sensory loss. Bi-directionality of EST seems to have been lost completely, and the macrosystem seems to drive the interactions between the ecological systems.

Keywords: ableism, social stigma, disability, repetitive behaviour, vision impairment, autism spectrum disorder, perceptions

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Authors: Zemenu Yohannes

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Introduction: The pandemic overstretched the weak health systems in developing countries, including Ethiopia. This study aims to assess and explore the effect of COVID-19 on antenatal care (ANC) provision. Methods: A concurrent mixed methods study was applied. An interrupted time series design was applied for the quantitative study, and in-depth interviews were implemented for the qualitative research to explore maternity care providers' perceptions of ANC provision during COVID-19. We used routine monthly collected data from the health management information system (HMIS) in fifteen hospitals in the Sidama region, Ethiopia, from March 2019 to February 2020 (12 months) before COVID-19 and from March to August 2020 (6 months) during COVID-19. We imported data into STATA V.17 for analysis. ANC provision's mean monthly incidence rate ratio (IRR) was calculated using Poisson regression with a 95% confidence interval. The qualitative data were analysed using thematic analysis. Findings from quantitative and qualitative elements were integrated with a contiguous approach. Results: Our findings indicate the rate of ANC provision significantly decreased in the first six months of COVID-19. This study has three identified main themes: barriers to ANC provision, inadequate COVID-19 prevention approach, and delay in providing ANC. Conclusion and recommendation: Based on our findings, the pandemic affected ANC provision in the study area. The health bureau and stakeholders should take a novel and sustainable approach to prevent future pandemics. The health bureau and hospital administrators should establish a task force that relies on financial self-reliance to close gaps in future pandemics of medical supply shortages. Pregnant women should receive their care promptly from maternity care providers. In order to foster contact and avoid discrimination the future pandemics, hospital administrators should set up a platform for community members and maternity care providers.

Keywords: ANC provision, COVID-19, mixed methods study, Ethiopia

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Authors: Neeti Rustagi, Naveen Dutt, Arvind Sinha, Mahaveer S. Rhodha, Pankaja R. Raghav

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Background: Pre-hospital trauma care services are in developing stage in fast-urbanizing cities of India including Jodhpur. Training of health professionals in providing necessary pre-hospital trauma care is an essential step in decreasing accident related morbidity and mortality. The current study explores the response of a medical graduate toward helping an accident victim in a pre-hospital setting before patient can be transferred to definitive trauma facility. Methodology: This study examines the perceived competence in predicting response to an accident victim by medical graduates in Jodhpur, Rajasthan. Participants completed measures of attitude, normative influence and perceived behavior control toward providing pre-hospital care to an accident victim. Likert scale was used to measure the participant responses. Preliminary and descriptive analysis were used using SPSS 21.0. Internal consistency of the responses received was measured using Cronbach’s alpha. Results: Almost all medical graduates agreed that road accidents are common in their area (male: 92%; female: 78%). More male medical graduates (28%) reported helping an accident victim as compared to female physicians (9%) in the previous three months. Majority of study participants (96%) reported that providing immediate care to an accident victim is essential to save the life of an individual. Experience of helping an accident victim was considered unpleasant by the majority of female participants (70%) as compared to male participants (36%). A large number of participants believed that their friends (80%) and colleagues (96%) would appreciate them helping an accident victim in a pre-hospital setting. A large number of participants also believed that they possess the necessary skills and competencies (80%) towards helping a roadside accident victim in the pre-hospital care environment. Perceived competence of helping a roadside accident victim until they are transferred to a health facility was reported by less than half of the participants (male: 56%; female: 43%). Conclusion: Medical graduates have necessary attitude, competencies, and intention of helping a roadside accident victim. The societal response towards helping a road side accident victim is also supportive. In spite of positive determinants, a large proportion of medical graduates have perceived lack of competence in helping a roadside accident victim. This is essential to explore further as providing pre-hospital care to a roadside accident victim is an essential step in establishing the continuum of care to an accident victim especially in countries where pre-hospital services are in developing phase.

Keywords: prehospital care, perceived behavior, perceived competence, medical graduates

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Authors: Huda Al-Awisi, Mohammed Al-Azri, Samira Al-Rasbi, Mansour Al-Moundhri

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Cancer diagnosis is invariably a profound and catastrophic life-changing experience for individuals and their families. It has been found that cancer patients and survivors are distressed with the fragility of their life and their mortality. Based on the literature, cancer patients /survivors value their spiritual experience and connecting with unknown power either related to religious belief or not as an important coping mechanism. Health care professionals including nurses are expected to provide spiritual care for cancer patients as holistic care. Yet, nurses face many challenges in providing such care mainly due to lack of clear definition of spirituality. This study aims to explore coping mechanisms of Omani women diagnosed with breast cancer throughout their cancer journey including spirituality using a qualitative approach. A purposive sample of 19 Omani women diagnosed with breast cancer at different stages of cancer treatment modalities were interviewed. Interviews were tape recorded and transcribed verbatim. The framework approach was used to analyze the data. One main theme related to spirituality was identified and called “The power of faith”. For the majority of participants, faith in God (the will of God) was most important in coping with all stages of their breast cancer experience. Some participants thought that the breast cancer is a test from God which they have to accept. Participants also expressed acceptance of death as the eventual end and reward from God. This belief gives them the strength to cope with cancer and seek medical treatment. In conclusion, women participated in this study believed faith in God imposed spiritual power for them to cope with cancer. They connected spirituality with religious beliefs. Therefore, regardless of nurses’ faith in spirituality, the spiritual care needs to be tailored and provided according to each patient individual need.

Keywords: breast cancer, spiritual, religion, coping, diagnosis, oman, women

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Authors: Philip Eappen, Narasimha Rao Vajjhala

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This chapter examines how healthcare organizations harnessed innovative healthcare informatics to navigate the challenges posed by the COVID-19 pan-demic, addressing critical needs and improving care delivery. The pandemic's un-precedented demands necessitated the adoption of new and advanced tools to manage healthcare operations more effectively. Informatics solutions played a crucial role in facilitating the smooth functioning of healthcare systems during this crisis and are anticipated to remain central to future healthcare management. Technologies such as telemedicine helped healthcare professionals minimize ex-posure to COVID-19 patients, thereby reducing infection risks within healthcare facilities. This chapter explores a range of informatics applications utilized worldwide, including telemedicine, AI-driven solutions, big data analytics, drones, robots, and digital platforms for drug delivery, all of which enabled re-mote patient care and enhanced healthcare accessibility and safety during the pan-demic.

Keywords: healthcare informatics, COVID-19 Pandemic, telemedicine, AI-driven healthcare, big data analytics, remote patient care, digital health platforms

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Authors: Geoff Skinner, Ilung Pranata

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The advancement of ICT innovations provides us with a comfortable and convenient modern lifestyle. However, this modern easy lifestyle is proving to have some serious health consequences. Such technological advancements that have dramatically increased ones time in front of screens have been a contributing factor to increasing rates of obesity. In particular the youth obesity issue has gained more and more attention from researchers and health institutions around the world. Although technology innovations may lead to a sedate modern life, they also have a potential to solve the obesity issue in children. This paper provides a review of the issues in child obesity and the potential of active video games to mitigate these issues. Additionally, the paper also discusses the key requirements to develop an active video game that hopes to help combat child obesity through motivating youth to exergame. A framework is introduced to meet the requirements, from which a prototype was implemented. Discussion of the simulation and testing that were performed to verify the attainment of objectives is also detailed.

Keywords: e-video games, exergaming, health informatics, human computer interaction

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Authors: Mohit Kumar, Beklashwar Salona, Shiv Murti, Mukesh Singh

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We report here a case of five-months old male baby, born as second child of non-consanguineous parents with no considerable history of genetic abnormality which was referred to our cytogenetic laboratory for chromosomal analysis. Physical dysmorphic facial features including mongoloid face, cleft palate, simian crease, and developmental delay were observed. We present this case with unique balanced autosomal translocation of t(3;10)(p21;p13). The risk of phenotypic abnormalities based on de novo balanced translocation was estimated to be 7%. The association of balanced chromosomal rearrangement with Down syndrome features such as multiple congenital anomalies, facial dysmorphism and congenital heart anomalies are very rare in a 5-months old male child. Trisomy-21 is not uncommon in chromosomal abnormality with the birth defect and balanced translocations are frequently observed in patients with secondary infertility or recurrent spontaneous abortion (RSA). Two ml heparinized peripheral blood cells cultured in RPMI-1640 for 72 hours supplemented with 20% fetal bovine serum, phytohemagglutinin (PHA), and antibiotics were used for chromosomal analysis. A total 30 metaphases images were captured using Olympus-BX51 microscope and analyzed using Bio-view karyotyping software through GTG-banding (G bands by trypsin and Giemsa) according to International System for Human Cytogenetic Nomenclature 2016. The results showed balanced translocation between short arm of chromosome # 3 and short arm of chromosome # 10. The karyotype of the child was found to be 46,XY,t(3;10)(p21; p13). Chromosomal abnormalities are one of the major causes of birth defect in new born babies. Also, balanced translocations are frequently observed in patients with secondary infertility or recurrent spontaneous abortion. The index case presented with dysmorphic facial features and had a balanced translocation 46,XY,t(3;10)(p21;p13). This translocation with break points at (p21; p13) has not been reported in the literature in a child with facial dysmorphism. To the best of our knowledge, this is the first report of novel balanced translocation t(3;10) with break points in a child with dysmorphic features. We found balanced chromosomal translocation instead of any trisomy or unbalanced aberrations along with some phenotypic abnormalities. Therefore, we suggest that such novel balanced translocation with abnormal phenotype should be reported in order to enable the pathologist, pediatrician, and gynecologist to have a better insight into the intricacies of chromosomal abnormalities and their associated phenotypic features. We hypothesized that dysmorphic features as seen in this case may be the result of change in the pattern of genes located at the breakpoint area in balanced translocations or may be due to deletion or mutation of genes located on the p-arm of chromosome # 3 and p-arm of chromosome # 10.

Keywords: balanced translocation, karyotyping, phenotypic abnormalities, facial dimorphisms

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Authors: Aimen Batool Bint-E-Rashid, Syed Muhammad Dawood Ali Shah, Muhammad Usman Farooq, Mahgul Anwar

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As the world is progressing, the needs and demands of the consumer market are also changing. Nowadays the trends of consumer purchase decisions are dependent upon multiple factors. This study aims to identify the influential impact of country of origin over the perception and devotion towards daily personal care products specifically in reference to the knowledge and awareness regarding that particular brand in Pakistan. To corroborate this study, a 30-item brand origin questionnaire has been used with 300 purchase decision makers belonging to different age groups. To illustrate this study, a model has been developed based on brand origin, brand awareness and brand loyalty. Correlation and regression analysis have been used to find out the results which conclude the findings on the perspective of Pakistan’s consumer market as that brand origin has a direct relationship with brand loyalty provided that the consumer has a positive brand awareness. Support for the fact that brand origin impacts brand loyalty through brand awareness has been presented in this study.

Keywords: brand awareness, brand loyalty, brand origin, personal care products, P&G, Unilever

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Authors: Roshanak Farjad, Amirhossein Hosseini

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Fecal incontinence (FI) is a stressful condition for children and their parents that may affect the patient’s psychological well-being. Evaluating the patients’ psychological status may help physicians manage the disease effectively. This study aimed to assess the emotional and behavioral disturbances in children with FI who were referred to the pediatric gastroenterology clinic in Mofid Children’s Hospital from April 2021 to 2022. This cross-sectional study included children (over four years old) with chronic constipation and fecal incontinence. The diagnosis of chronic constipation and FI were made according to Rome-IV criteria. The Child Behavior Checklist (CBCL) evaluated patients’ emotional, behavioral, and social problems. One hundred one patients with a mean age of 7.96 years were enrolled in the study; 67.32% were males. According to CBCL, 12% (12 patients) indicated emotional and behavioral problems, with CBCL scores in the clinical or at-risk range. We detected anxious/depressed problems in five (4.95%), withdrawn/depressed problems in eight (7.92%), somatic complaints in seven (6.93%), social problems in eight (7.92%), thought problems in nine (8.91%), attention problems in seven (6.93%), rule-breaking behavior in two (1.98%), and aggressive behavior in nine (8.91%) patients. The risk of internalizing and externalizing disorders was reported in four (3.96%) and five (4.95%) patients. Also, eight (7.92%) and seven (6.93%) patients had clinical symptoms of internalizing and externalizing disorders, respectively. There was no significant relationship between patients’ age and gender with the CBCL scores in any subscales. However, there was a significant difference in the total score among the age groups (P = 0.04). The relatively high prevalence of emotional, behavioral, and social problems in our study corroborates the importance of psychological screening of children with FI during the treatment process.

Keywords: chronic constipation, child behavior checklist (CBCL), fecal incontinence, rome-IV criteria

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Authors: Shannon Hearney, Jeffrey Hoch

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While all cancers are costly to treat, pancreatic cancer is a notoriously costly and deadly form of cancer. Across the world there are a variety of treatment centers ranging from small clinics to large, high-volume hospitals as well as differing structures of payment and access. It has been noted that centers that treat a high volume of pancreatic cancer patients have higher quality of care, it is unclear if that care is cost-effective. In the US there is no clear consensus on the cost-effectiveness of high-volume centers for the surgical care of pancreatic cancer. Other European countries, like Finland and Italy have shown that high-volume centers have lower mortality rates and can have lower costs, there however, is still a gap in knowledge about these centers cost-effectiveness globally. This paper seeks to review the current literature in Europe and the US to gain a better understanding of the state of high-volume pancreatic surgical centers cost-effectiveness while considering the contextual differences in health system structure. A review of major reference databases such as Medline, Embase and PubMed will be conducted for cost-effectiveness studies on the surgical treatment of pancreatic cancer at high-volume centers. Possible MeSH terms to be included, but not limited to, are: “pancreatic cancer”, “cost analysis”, “cost-effectiveness”, “economic evaluation”, “pancreatic neoplasms”, “surgical”, “Europe” “socialized medicine”, “privatized medicine”, “for-profit”, and “high-volume”. Studies must also have been available in the English language. This review will encompass European scientific literature, as well as those in the US. Based on our preliminary findings, we anticipate high-volume hospitals to provide better care at greater costs. We anticipate that high-volume hospitals may be cost-effective in different contexts depending on the national structure of a healthcare system. Countries with more centralized and socialized healthcare may yield results that are more cost-effective. High-volume centers may differ in their cost-effectiveness of the surgical care of pancreatic cancer internationally especially when comparing those in the United States to others throughout Europe.

Keywords: cost-effectiveness analysis, economic evaluation, pancreatic cancer, scientific literature review

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Authors: Harmeet Pal Singh Dhooria, Deepinder Chinna, UPS Sidhu, Alok Jain

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Serious infections caused by gram-negative bacteria are a significant cause of mortality and morbidity in the hospital setting. In acute care facilities like in intensive care units (ICUs), the intensity of antimicrobial use together with a population highly susceptible to infection, creates an environment, which facilitates both emergence and transmission of Extended Spectrum -lactamase (ESBL) producing Enterobacteriaceae species. The study was conducted in the Medical Intensive Care Unit (MICU) and the Pulmonary Critical Care Unit (PCCU) of the Department of Medicine, Dayanand Medical College and Hospital, Ludhiana, Punjab, India. Out of a total of 1108 samples of urine, blood and respiratory tract secretions received for culture and sensitivity analysis from Medical Intensive Care Unit and Pulmonary Critical Care Unit, a total of 170 isolates of Enterobacteriaceae species were obtained which were then included in our study. Out of these 170 isolates, confirmed ESBL production was seen in 116 (68.24%) cases. E.coli was the most common species isolated (56.47%) followed by Klebsiella (32.94%), Enterobacter (5.88%), Citrobacter (3.53%), Enterobacter (0.59%) and Morganella (0.59%) among the total isolates. The rate of ESBL production was more in Klebsiella (78.57%) as compared to E.coli (60.42%). ESBL producers were found to be significantly more common in patients with prior history of hospitalization, antibiotic use, and prolonged ICU stay. Also significantly increased the prevalence of ESBL related infections was observed in patients with a history of catheterization or central line insertion but not in patients with the history of intubation. Patients who had an underlying malignancy had significantly higher prevalence of ESBL related infections as compared to other co-morbid illnesses. A slightly significant difference in the rate of mortality/LAMA was observed in the ESBL producer versus the non-ESBL producer group. The rate of mortality/LAMA was significantly higher in the ESBL related UTI but not in the ESBL related respiratory tract and bloodstream infections. ESBL producing isolates had significantly higher rates of resistance to Cefepime and Piperacillin/Tazobactum, and to non β-lactum antibiotics like Amikacin and Ciprofloxacin. The level of resistance to Imipenem was lower as compared to other antibiotics. However, it was noted that ESBL producing isolates had higher levels of resistance to Imipenem as compared to non-ESBL producing isolates. Conclusion- The prevalence of ESBL producing organisms was found to be very high (68.24%) among Enterobacteriaceae isolates in our ICU setting as among other ICU care settings around the world.

Keywords: enterobacteriaceae, extended spectrum B-lactamase (ESBL), ICU, antibiotic resistance

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Authors: R. Pääkkönen, L. Korpinen, T. Kava, I. Salmi

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This study evaluates obstructive sleep apnea treatment through a case study involving a 67-year-old male driver who had a successful continuous positive airway pressure (CPAP) treatment at home but experienced difficulties with traveling and dental care. There are many cheap sleep apnea and snoring devices available, but there is little professional advice on what kind of devices can help. Professional drivers receive yearly specialized medical care follow-up.

Keywords: sleep, apnea patient, CPAP, professional driver

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Authors: Samantha Ramachandra, Avanthi Rupasinghe

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Demographic transition from lower to higher percentage of elderly population eventually coupled with epidemiological transition from communicable to non-communicable diseases (NCD). Higher percentage of NCD overload the health system as NCD survivors claims continuous health care. The demands are challenging to a resource constrained setting but reorganizing the system may find solutions. The study focused on the facilities available and their utilization at outpatient department (OPD) setting of the public hospitals of Sri Lanka for continuous medical care. This will help in identifying steps of reorganizing the system to provide better care with the maximum utilization of available facilities. The study was conducted as a situation analysis with secondary data at hospital planning units. Variable were identified according to the world health organization (WHO) recommendation on continuous health care for elders in “age-friendly primary health care toolkit”. Data were collected from secondary and tertiary care hospitals of Sri Lanka where most of the continuous care services are available. Out of 58 secondary and tertiary care hospitals, 16 were included in the study to represent each hospital categories. Average number of patient attending for episodic treatment at OPD and Clinical follow-up of chronic conditions shows vast disparity according to the category of the hospital ranging from 3750 – 800 per day at OPD and 1250 – 200 per clinic session. Average time spent per person at OPD session is low, range from 1.54 - 2.28 minutes, the time was increasing as the hospital category goes down. 93.7% hospitals had special arrangements for providing acute care on chronic conditions such as catheter, feeding tube and wound care. 25% hospitals had special clinics for elders, 81.2% hospitals had healthy lifestyle clinics (HLC), 75% hospitals had physical rehabilitation facilities and 68.8% hospitals had facilities for counselling. Elderly clinics and HLC were mostly available at lower grade hospitals where as rehabilitation and counselling facilities were mostly available at bigger hospitals. HLC are providing health education for both patients and their family members, refer patients for screening of complication but not provide medical examinations, investigations or treatments even though they operate in the hospital setting. Physical rehabilitation is basically offered for patients with rheumatological conditions but utilization of centers for injury rehabilitation and rehabilitation of survivors following major illness such as myocardial infarctions, stroke, cancer is not satisfactory (12.5%). Human Resource distribution within hospital shows vast disparity and there are 103 physiotherapists in the biggest hospital where only 36 physiotherapists available at the next level hospital. Counselling facilities also provided mainly for the patient with psychological conditions (100%) but they were not providing counselling for newly diagnosed patients with major illnesses (0%). According to results, most of the public-sector hospitals in Sri Lanka have basic facilities required in providing continuous care but the utilization of services need more focus. Hospital administration or the government need to have initial steps in proper utilization of them in improving continuous health care incorporating team approach of rehabilitation. The author wishes to acknowledge that this paper was made possible by the support and guidance given by the “Australia Awards Fellowships Program for Sri Lanka – 2017,” which was funded by the Department of Foreign Affairs and Trade, Australia, and co-hosted by Monash University, Australia and the Sri Lanka Institute of Development Administration.

Keywords: continuous care, outpatient department, non communicable diseases, rehabilitation

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Authors: Arezoo Fallahi, Fateme Aslibigi, Parvaneh Taymoori, Babak Nematshahrbabaki

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Background and Aims: Cancer of the cervix, one of cancer-related death, is the second most common cancer in women worldwide. It develops over time but it is one of the most preventable types of cancer and there is the available proper screening program for its preventing. Since Pap smear test is vital to prevent and control of disease but women do not accomplish it regularly. Therefore, this study was aimed to explore women's needs referring to health care centers for doing Pap smear test. Material and methods: In this study, an inductive qualitative method with content analysis approach was used. This survey was done in varamin city (is located capital of Iran) in year 2014. Through the purposive sampling 15 women's view of point referring to health care centers of for doing Pap smear test was surveyed. Inclusion criteria were: 20-50 years old married women, having experience Pap smear test and attendance to participate in the Study. Recorded semi- structured interviews were typed and analyzed through of content analysis method. To obtain trustworthiness and rigor of the data, the criteria of credibility, dependability, confirmability and transferability was used. Results: During the data analysis, four main categories of “role of health care team”, “role of organizations”, “social support” and “policies and administration system” were developed. The participants emphasized on making motivational rules and coordination among organizations to do behaviors related to women health. Conclusion: The findings of study showed that doing Pap smear test are attributed to appropriate and intimate interactions with health professionals, family support, encouraging legislation and policies and coordination and notification of organizations. Therefore, designers and stockholders of policies and health system should more consider to growth and involve other organizations toward women's health.

Keywords: qualitative approach, pap smear test, women, health care centers

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Authors: Reshma Parvin Nuri, Heather Michelle Aldersey, Setareh Ghahari

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Objectives: Worldwide, it is well known that taking care of children with disabilities (CWD) can have a significant impact on the entire family unit. Over the last few decades, an increased number of studies have been conducted on families of CWD in higher income countries, and much of this research has identified family needs and strategies to meet those needs. However, family needs are incredibly under-studied in developing countries. Therefore, the aims of this study were to: (a) explore the needs of families of children with cerebral palsy (CP) in Bangladesh; (b) investigate how some of the family needs have been met and (c) identify the sources of supports that might help the families to meet their needs in the future. Methods: A face to face, semi-structured in-depth interview was conducted with 20 family members (12 mothers, 4 fathers, 1 sister, 2 grandmothers, and 1 aunt) who visited the Centre for the Rehabilitation of the Paralysed (CRP), Bangladesh between June and August 2016. Constant comparison method of grounded theory approach within the broader spectrum of qualitative study was used to analyze the data. Results: Participants identified five categories of needs: (a) financial needs, (b) access to disability-related services, (c) family and community cohesion, (d) informational needs, and (e) emotional needs. Participants overwhelmingly reported that financial need is their greatest family need. Participants noted that families encountered additional financial expenses for a child with CP, beyond what they would typically pay for their other children. Participants were seeing education as their non-primary need as they had no hope that their children would be physically able to go to school. Some participants also shared their needs for social inclusion and participation and receiving emotional support. Participants further expressed needs to receive information related to the child’s health condition and availability/accessibility of governmental support programs. Besides unmet needs, participants also highlighted that some of their needs have been met through formal and informal support systems. Formal support systems were mainly institution-based and run by non-governmental organizations, whereas participants identified informal support coming from family, friends and community members. Participants overwhelmingly reported that they receive little to no support from the government. However, participants identified the government as the key stakeholder who can play vital role in meeting their unmet needs. Conclusions: In the next phase of this research, the plan is to understand how the Government of the People’s Republic of Bangladesh is working to meet the needs of families of CWD. There is also need for further study on needs of families of children with conditions other than CP and those who live in the community and do not have access to the CRP Services. There is clear need to investigate ways to enable children with CP have better access to education in Bangladesh.

Keywords: Bangladesh, children with cerebral palsy, family needs, support

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Authors: Haifeng Shi, Kun Song, Yili Zhao

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In China, with the extensive promotion of the ‘aging in place’ pension policy as the background, most of the elders will choose to remain in their current homes and communities, finding out of preference or necessity that they will need to remodel their homes to fit their changing needs. This generation elder born in the 1960s to 1970s almost live in the same form of housing-condominium built from 1982 to 2012. Based on the survey of existing multi-family housing, especially in Tianjin, it is found that the current ‘double two-thirds principles’ is becoming the threshold for modification to existing house, particularly in the project of elevators addition to existing condominium (built from 1982 to 2016 without elevators below 6 floors according to the previous building code). Firstly, this article concludes the local policies of elevator addition nationwide, most of which has determined the importance and necessity of the community-based self-organization principle in the operation of the elevator addition. Secondly, by comparing the three existing community management systems (owners' congress, property management system and community committee) in instances, find that the community-based ‘two-thirds’ principle is not conducive to implement for multi-owned property renovation in the community or common accessibility modification in the building. However, analysis the property and other community management related laws, pointing out the shortcomings of the existing community-based ‘two-thirds’ decision-making norms. The analyzation showed that the unit-based and ‘100% principle’ method is more capable of common accessibility in the condominium in China. Differing from existing laws, the unit-based principle will be effective for the process of decision-making and ‘100% principle’ will protect closely profit-related householders for condominium modification in the multi-owned area. These three aspects of the analysis suggest that the establishment of the unit-based self-organization mechanism is a preferred and inevitable method to solve the problem of elevators addition to the existing condominium in China.

Keywords: aging in place, condominium, modification, multi own

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Authors: Danielle A. Walker, Kyle L. Johnson, Tara B. Thomas, Sandor Dorgo, Jacen S. Moore

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Approximately 37 million people worldwide are infected with the Human Immunodeficiency Virus (HIV), with the majority located in sub-Saharan Africa. The relationship existing between HIV incidence and socioeconomic inequity confirms the critical need for programs promoting HIV education, prevention and treatment access. This literature review analyzed 36 sources with a specific focus on the Democratic Republic of Congo, whose critically low socioeconomic status and education rate have resulted in a drastically high HIV rates. Relationships between HIV testing and treatment and barriers to care were explored. Cultural and religious considerations were found to be vital when creating and implementing HIV education and testing programs. Partnerships encouraging active support from community-based spiritual leaders to implement HIV educational programs were also key mechanisms to reach communities and individuals. Gender roles were highlighted as a key component for implementation of effective community trust-building and successful HIV education programs. The efficacy of added support by hospitals and clinics in rural areas to facilitate access to HIV testing and care for people living with HIV/AIDS (PLWHA) was discussed. This review highlighted the need for healthcare providers to provide a network of continued education for PLWHA in clinical settings during disclosure and throughout the course of treatment to increase retention in care and promote medication adherence for viral load suppression. Implementation of culturally sensitive models that rely on community familiarity with HIV educators such as ‘train-the-trainer’ were also proposed as efficacious tools for educating rural communities about HIV. Further research is needed to promote community partnerships for HIV education, understand the cultural context of gender roles as barriers to care, and empower local health care providers to be successful within the HIV Continuum of Care.

Keywords: cultural sensitivity, Democratic Republic of the Congo, education, HIV

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Authors: Danny Hjeij, Karine Bilodeau, Caroline Arbour

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Background: Chemotherapy infusions often lead to a cluster of co-occurring and difficult-to-treat symptoms (nausea, tingling, etc.), which may negatively impact the treatment experience at the outpatient clinic. Although several complementary approaches have shown beneficial effects for chemotherapy-induced symptom management, they are not easily implementable during chemotherapy infusion. In response to this limitation, comfort talk (CT), a simple, fast conversational method inspired by the language principles of clinical hypnosis, is known to optimize the management of symptoms related to antineoplastic treatments. However, the perception of nurses who have had to integrate this practice into their care has never been documented. Study design: A qualitative descriptive study with iterative content analysis was conducted among oncology nurses working in a chemotherapy outpatient clinic who had previous experience with CT. Semi-structured interviews were conducted by phone, using a pre-tested interview guide and a sociodemographic survey to document their perception of CT. The conceptual framework. Results: A total of six nurses (4 women, 2 men) took part in the interviews (N=6). The average age of participants was 49 years (36-61 years). Participants had an average of 24 years of experience (10-38 years) as a nurse, including 14.5 years in oncology (5-32 years). Data saturation (i.e., redundancy of words) was observed around the fifth interview. A sixth interview was conducted as confirmation. Six themes emerged: two addressing contextual and organizational obstacles at the chemotherapy outpatient clinic, and three addressing the added value of CT for oncology nursing care. Specific themes included: 1) the outpatient oncology clinic, a saturated care setting, 2) the keystones that support the integration of CT into care, 3) added value for patients, 4) a positive and rewarding experience for nurses, 5) collateral benefits, and 6) CT an approach to consider during the COVID-19 pandemic. Conclusion: For the first time, this study describes nurses' perception of the integration of CT into the care surrounding the administration of chemotherapy at the outpatient oncology clinic. In summary, contextual and organizational difficulties, as well as the lack of training, are among the main obstacles that could hinder the integration of CT in oncology. Still, the experience was reported mostly as positive. Indeed, nurses saw HC as an added value to patient care and meeting their need for holistic care. HC also appears to be beneficial for patients on several levels (for pain management in particular). Results will be used to inform future knowledge transfer activities related to CT in oncology nursing.

Keywords: cancer, chemotherapy, comfort talk, oncology nursing role

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Authors: Robyn L. Curran, Joanne R. Naidoo, Gugu Mchunu

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Along with the increasing awareness of human trafficking, is the acknowledgement that it is no longer just a social problem but also a significant public health problem that requires both increased knowledge and the specialist equipping of aftercare providers such as nurses who care for human trafficking survivors. Current discourse regarding aftercare of human trafficking survivors, is that approaches do not clearly explain the function or content of aftercare and what aftercare entails. Although psychological and medical aftercare are emphasized as important components, little practical attention is devoted to what these components actually involve and the effectiveness of current practice in aftercare. Review of the literature on the processes that take place from aftercare to empowerment, revealed the need for emphasis to be placed on the voices of survivors concerning their liberation from oppression. The aim of the study was to develop a theory for aftercare of human trafficking survivors, through analyzing the experiences of survivors and aftercare providers in shelters in three provinces in South Africa. Through using a Straussian grounded theory approach, the researcher developed a theory to inform care of human trafficking survivors in low resource settings using the voice of the survivors and those experienced in direct care of human trafficking survivors. Four human trafficking survivors and three aftercare providers from three shelters in three provinces in South Africa were individually interviewed in order for the theory to emerge. The findings of the study elicited a theoretical model of the renewed self, and the conditions that facilitate this process in care of human trafficking survivors. The process that human trafficking survivors navigate to empowerment require mutual collaboration of the aftercare provider and survivor as the survivor awakens vision, confronts reality, re-salvages autonomy and liberates self. Psychological resilience of the survivor facilitates the transition to renewed self. The recommendations of this study may improve the nursing care provided to human trafficking survivors and equip professionals with knowledge and skills to promote the process of renewing self for survivors.

Keywords: aftercare, aftercare providers, grounded theory, human trafficking survivors

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Authors: Cátia Regina Branco da Fonseca, Maria Wany Louzada Strufaldi, Lídia Raquel de Carvalho, Rosana Fiorini Puccini

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Background: Birth weight reflects gestational conditions and development during the fetal period. Low birth weight (LBW) may be associated with antenatal care (ANC) adequacy and quality. The purpose of this study was to analyze ANC adequacy and its relationship with LBW in the Unified Health System in Brazil. Methods: A case-control study was conducted in Botucatu, São Paulo, Brazil, 2004 to 2008. Data were collected from secondary sources (the Live Birth Certificate), and primary sources (the official medical records of pregnant women). The study population consisted of two groups, each with 860 newborns. The case group comprised newborns weighing less than 2,500 grams, while the control group comprised live newborns weighing greater than or equal to 2,500 grams. Adequacy of ANC was evaluated according to three measurements: 1. Adequacy of the number of ANC visits adjusted to gestational age; 2. Modified Kessner Index; and 3. Adequacy of ANC laboratory studies and exams summary measure according to parameters defined by the Ministry of Health in the Program for Prenatal and Birth Care Humanization. Results: Analyses revealed that LBW was associated with the number of ANC visits adjusted to gestational age (OR = 1.78, 95% CI 1.32-2.34) and the ANC laboratory studies and exams summary measure (OR = 4.13, 95% CI 1.36-12.51). According to the modified Kessner Index, 64.4% of antenatal visits in the LBW group were adequate, with no differences between groups. Conclusions: Our data corroborate the association between inadequate number of ANC visits, laboratory studies and exams, and increased risk of LBW newborns. No association was found between the modified Kessner Index as a measure of adequacy of ANC and LBW. This finding reveals the low indices of coverage for basic actions already well regulated in the Health System in Brazil. Despite the association found in the study, we cannot conclude that LBW would be prevented only by an adequate ANC, as LBW is associated with factors of complex and multifactorial etiology. The results could be used to plan monitoring measures and evaluate programs of health care assistance during pregnancy, at delivery and to newborns, focusing on reduced LBW rates.

Keywords: low birth weight, antenatal care, prenatal care, adequacy of health care, health evaluation, public health system

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Authors: Erin Lynne Plettenberg, Jeremy Vickery

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In an access-control situation, the role of a user determines whether a data request is appropriate. This paper combines vetted web mining and logic modeling to build a lightweight system for determining the role of a health care provider based only on their prior authorized requests. The model identifies provider roles with 100% recall from very little data. This shows the value of vetted web mining in AI systems, and suggests the impact of the ICD classification on medical practice.

Keywords: electronic medical records, information extraction, logic modeling, ontology, vetted web mining

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Authors: Farjina Malek, Julie King, Niki Edwards

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Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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