Search results for: neonatal intensive care
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 4687

Search results for: neonatal intensive care

3487 Early Initiation of Breastfeeding among Postpartum Mothers at Two Rwandan Hospitals

Authors: Joella Mukashyaka, Rose Mukarubayiza, Emmanuel Habumugisha, Francois-Xavier Sunday, Kellen Muganwa, Valens Mbarushimana, Pamela Meharry

Abstract:

Background: Breastfeeding in the first hour post-birth can decrease neonatal morbidity and mortality. Disease prevention and health outcomes differ immensely between newborns who receive human milk and those who do not. Rwanda has high breastfeeding rates, though factors associated with early initiation of breastfeeding (EIBF) are unknown. Objective: To assess factors associated with EIBF among mothers in immediate postpartum units at two hospitals. Methods: A cross-sectional study design and a convenience sample of 187 mothers were used. An interviewer-administered questionnaire was used for data collection. A Chi-square test showed the relationship between EIBF and sociodemographic factors. Results: The findings showed less than one quarter (20.5%) breastfed within the first hour after birth. The majority was < 25 years (52.4%), had some primary education (27.7%) employed (66.7%), urban dweller (58.1%), attendance of one ANC visit or more (81.3%), vaginal birth (58.8%), and did not receive EIBF health education (92.0%). The majority (78.5%) was too tired to initiate breastfeeding, and many supplemented (41.9%) due to perceived insufficient breastmilk. Conclusion: Most mothers did not initiate breastfeeding within the first hour after birth. Sociodemographic factors were associated with EIBF. A program to promote, protect, and support EIBF is urgently needed the community.

Keywords: breastfeeding, early initiation, neonates, morbidity, mortality, sub-Saharan Africa

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3486 DH-Students Promoting Underage Asylum Seekers' Oral Health in Finland

Authors: Eeva Wallenius-Nareneva, Tuula Toivanen-Labiad

Abstract:

Background: Oral health promotion event was organised for forty Afghanistan, Iraqi and Bangladeshi underage asylum seekers in Finland. The invitation to arrange this coaching occasion was accepted in the Degree Programme in Oral Hygiene in Metropolia. The personnel in the reception center found the need to improve oral health among the youngsters. The purpose was to strengthen the health literacy of the boys in their oral self-care and to reduce dental fears. The Finnish studies, especially the terminology of oral health was integrated to coaching with the help of interpreters. Cooperative learning was applied. Methods: Oral health was interactively discussed in four study group sessions: 1. The importance of healthy eating habits; - Good and bad diets, - Regular meals, - Acid attack o Xylitol. 2. Oral diseases − connection to general health; - Aetiology of gingivitis, periodontitis and caries, - Harmfulness of smoking 3. Tools and techniques for oral self-care; - Brushing and inter dental cleaning. 4. Sharing earlier dental care experiences; - Cultural differences, - Dental fear, - Regular check-ups. Results: During coaching deficiencies appeared in brushing and inter dental cleaning techniques. Some boys were used to wash their mouth with salt justifying it by salt’s antiseptic properties. Many brushed their teeth by vertical movements. The boys took feedback positively when a demonstration with model jaws revealed the inefficiency of the technique. The advantages of fluoride tooth paste were advised. Dental care procedures were new and frightening for many boys. Finnish dental care system was clarified. The safety and indolence of the treatments and informed consent were highlighted. Video presentations and the dialog lowered substantially the threshold to visit dental clinic. The occasion gave the students means for meeting patients from different cultural and language backgrounds. The information hidden behind the oral health problems of the asylum seekers was valuable. Conclusions: Learning dental care practices used in different cultures is essential for dental professionals. The project was a good start towards multicultural oral health care. More experiences are needed before graduation. Health education themes should be held simple regardless of the target group. The heterogeneity of the group does not pose a problem. Open discussion with questions leading to the theme works well in clarifying the target group’s knowledge level. Sharing own experiences strengthens the sense of equality among the participants and encourages them to express own opinions. Motivational interview method turned out to be successful. In the future coaching occasions must confirm active participation of everyone. This could be realized by dividing the participants to even smaller groups. The different languages impose challenges but they can be solved by using more interpreters. Their presence ensures that everyone understands the issues properly although the use of plain and sign languages are helpful. In further development, it would be crucial to arrange a rehearsal occasion to the same participants in two/three months’ time. This would strengthen the adaption of self-care practices and give the youngsters opportunity to pose more open questions. The students would gain valuable feedback regarding the effectiveness of their work.

Keywords: cooperative learning, interactive methods, motivational interviewing, oral health promotion, underage asylum seekers

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3485 'Get the DNR': Exploring the Impact of an Educational eModule on Internal Medicine Residents' Attitudes and Approaches to Goals of Care Conversations

Authors: Leora Branfield Day, Stephanie Saunders, Leah Steinberg, Shiphra Ginsburg, Christine Soong

Abstract:

Introduction: Discordance between patients expressed and documented preferences at the end of life is common. Although junior trainees frequently lead goals of care (GOC) conversations, lack of training can result in poor communication. Based on a needs assessment, we developed an interactive electronic learning module (eModule) for conducting patient-centred GOC discussions. The purpose of this study was to evaluate the impact of the eModule on residents’ attitudes towards GOC conversations. Methods: First-year internal medicine residents (n=11) from the University of Toronto selected using purposive sampling underwent semi-structured interviews before and after completing a GOC eModule. Interviews were anonymized, transcribed and open-coded using NVivo. Using a constructivist grounded theory approach, we developed a framework to understand the attitudes of residents to GOC conversations before and after viewing the module. Results: Before the module, participants described limited training and negative emotions towards GOC conversations. Many focused on code status and procedure choices (e.g., ventilation) instead of eliciting patient-centered values. Pressure to “get the DNR" led to conflicting feelings and distress. After the module, participants’ approached conversations with a greater focus on patient values and process. They felt more prepared and comfortable, recognizing the complexity of conversations and the importance of patient-centeredness. Conclusions: A novel GOC eModule allowed residents to develop a patient-centered and standardized approach to GOC conversations while improving confidence and preparedness. This resource could be an effective strategy toward attaining a critical communication competency among learners with the potential to enhance accurate GOC documentation.

Keywords: goals of care conversations, communication skills, emodule, medical education

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3484 Stress and Overload in Mothers and Fathers of Hospitalized Children: A Comparative Study

Authors: Alessandra Turini Bolsoni Silva, Nilson Rogério Da Silva

Abstract:

The hospitalization process for long periods and the experience of invasive and painful clinical procedures can trigger a set of stressors in children, family members and professionals, leading to stress. Mothers are, in general, the main caregivers and, therefore, have a high degree of sadness and stress with an impact on mental health. However, the father, in the face of the mother's absence, needs to assume other responsibilities such as domestic activities and healthy children in addition to work activities. In addition, he has to deal with changes in family and work relationships during the child's hospitalization, with disagreements and changes in the relationship with the partner, changes in the relationship with the children, and finding it difficult to reconcile the new tasks as a caregiver and work. A consequence of the hospitalization process is the interruption of the routine activities of both the child and the family members responsible for the care, who can go through stressful moments due to the consequences of family breakdown, attention focused only on the child and sleepless nights. In this sense, both the mother and the father can have their health affected by their child's hospitalization. The present study aims to compare the prevalence of stress and overload in mothers and fathers of hospitalized children, as well as possible associations with activities related to care. The participants were 10 fathers and 10 mothers of children hospitalized in a hospital located in a medium-sized city in the interior of São Paulo. Three instruments were used for data collection: 1) Script to characterize the participants; 2) The Lipp Stress Symptom Inventory (ISSL, 2000) 3) Zarit Burden Interview Protocol – ZBT. Contact was made with the management of the hospital in order to present the objectives of the project, then authorization was requested for the participation of the parents; after an agreement, the time and place were convenient for the participant to carry out the interview. Thus, they signed the Free and Informed Consent Term. Data were analyzed according to the instrument application manuals and organized in Figures and Tables. The results revealed that fathers and mothers have their family and professional routine affected by the hospitalization of their children, with the consequent presence of stress and overload indicators. However, the study points to a greater presence of stress and overload in mothers due to their role as the main caregiver, often interrupting their professional life to exercise care. In the case of the father, the routine is changed due to taking on household chores and taking care of the other children, with the professional life being less affected. It is hoped that the data can guide future interventions that promote and develop strategies that favor care and, at the same time, preserve the health of caregivers and that include mothers and fathers, considering that both are affected, albeit in a different way.

Keywords: stress, overload, caregivers, parents

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3483 Functional Performance Needs of Individuals with Intellectual and Developmental Disabilities

Authors: Noor Taleb Ismael, Areej Abd Al Kareem Al Titi, Ala'a Fayez Jaber

Abstract:

Objectives: To investigate self-perceived functional performance among adults with IDD who are Jordanian residential care and rehabilitation centers residents. Also, to investigate their functional abilities (i.e., motor, and cognitive). In addition, to determine the motor and cognitive predictors of their functional performance. Methods: The study utilized a cross-sectional descriptive design; the sample included 180 individuals with IDD (90 males and 90 females) aged 18 to 75 years. The inclusion criteria encompassed: 1) Adults with a confirmed IDD by their physician’s professional and 2) residents in Jordanian Residential Care and Rehabilitation Centers affiliated with the Jordanian Ministry of Social Development. The exclusion criteria were: 1) bedridden or totally dependent on their care providers; 2) who had an accident or acquired neurological conditions. Researchers conducted semi-structured interviews to complete the outcome measures that include the Canadian Occupational Performance Measure (COPM), the Functional Independence Measure (FIM), the Montreal Cognitive Assessment (MoCA), the Mini-Mental Status Examination (MMSE), and the sociodemographic questionnaire. Data analyses consisted of descriptive statistics, analysis of frequencies, correlation, and regression analyses. Result: Individuals with IDD showed low functional performance in all daily life areas, including self-care, productivity, and leisure; there was severe cognitive impairment and poor independence and functional performance. (COPM Performance M= 1.433, SD±.57021, COPM Satisfaction M= 1.31, SD±.54, FIM M= 3.673, SD± 1.7918). Two predictive models were validated for the COPM performance and FIM total scores. First, significant predictors of high self-perceived functional performance on COPM were high scores on FIM Motor sub scores, FIM cognitive sub scores, young age, and having a high school educational level (R2=0.603, p=0.012). Second, significant predictors of high functional capacity on FIM were a high score on the COPM performance subscale, a high MMSE score, and having a cerebral palsy (CP) diagnosis (R2=0.671, p<0.001). Conclusions: Evaluating functional performance and associated factors is important in rehabilitation to provide better services and improve health and QoL for individuals with IDD. This study suggested conducting future studies targeting integrated individuals with IDD who live with their families in the communities.

Keywords: functional performance, intellectual and developmental disabilty, cognitive abilities, motor abilities

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3482 Service Blueprinting: A New Application for Evaluating Service Provision in the Hospice Sector

Authors: L. Sudbury-Riley, P. Hunter-Jones, L. Menzies, M. Pyrah, H. Knight

Abstract:

Just as manufacturing firms aim for zero defects, service providers strive to avoid service failures where customer expectations are not met. However, because services comprise unique human interactions, service failures are almost inevitable. Consequently, firms focus on service recovery strategies to fix problems and retain their customers for the future. Because a hospice offers care to terminally ill patients, it may not get the opportunity to correct a service failure. This situation makes the identification of what hospice users really need and want, and to ascertain perceptions of the hospice’s service delivery from the user’s perspective, even more important than for other service providers. A well-documented and fundamental barrier to improving end-of-life care is a lack of service quality measurement tools that capture the experiences of user’s from their own perspective. In palliative care, many quantitative measures are used and these focus on issues such as how quickly patients are assessed, whether they receive information leaflets, whether a discussion about their emotional needs is documented, and so on. Consequently, quality of service from the user’s perspective is overlooked. The current study was designed to overcome these limitations by adapting service blueprinting - never before used in the hospice sector - in order to undertake a ‘deep-dive’ to examine the impact of hospice services upon different users. Service blueprinting is a customer-focused approach for service innovation and improvement, where the ‘onstage’ visible service user and provider interactions must be supported by the ‘backstage’ employee actions and support processes. The study was conducted in conjunction with East Cheshire Hospice in England. The Hospice provides specialist palliative care for patients with progressive life-limiting illnesses, offering services to patients, carers and families via inpatient and outpatient units. Using service blueprinting to identify every service touchpoint, in-depth qualitative interviews with 38 in-patients, outpatients, visitors and bereaved families enabled a ‘deep-dive’ to uncover perceptions of the whole service experience among these diverse users. Interviews were recorded and transcribed, and thematic analysis of over 104,000 words of data revealed many excellent aspects of Hospice service. Staff frequently exceed people’s expectations. Striking gratifying comparisons to hospitals emerged. The Hospice makes people feel safe. Nevertheless, the technique uncovered many areas for improvement, including serendipity of referrals processes, the need for better communications with external agencies, improvements amid the daunting arrival and admissions process, a desperate need for more depression counselling, clarity of communication pertaining to actual end of life, and shortcomings in systems dealing with bereaved families. The study reveals that the adapted service blueprinting tool has major advantages of alternative quantitative evaluation techniques, including uncovering the complex nature of service user’s experiences in health-care service systems, highlighting more fully the interconnected configurations within the system and making greater sense of the impact of the service upon different service users. Unlike other tools, this in-depth examination reveals areas for improvement, many of which have already been implemented by the Hospice. The technique has potential to improve experiences of palliative and end-of-life care among patients and their families.

Keywords: hospices, end-of-life-care, service blueprinting, service delivery

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3481 Tuberculosis Outpatient Treatment in the Context of Reformation of the Health Care System

Authors: Danylo Brindak, Viktor Liashko, Olexander Chepurniy

Abstract:

Despite considerable experience in implementation of the best international approaches and services within response to epidemy of multi-drug resistant tuberculosis, the results of situation analysis indicate the presence of faults in this area. In 2014, Ukraine (for the first time) was included in the world’s five countries with the highest level of drug-resistant tuberculosis. The effectiveness of its treatment constitutes only 35% in the country. In this context, the increase in allocation of funds to control the epidemic of multidrug-resistant tuberculosis does not produce perceptible positive results. During 2001-2016, only the Global Fund to fight AIDS, Tuberculosis, and Malaria allocated to Ukraine more than USD 521,3 million for programs of tuberculosis and HIV/AIDS control. However, current conditions in post-Semashko system create little motivation for rational use of resources or cost control at inpatient TB facilities. There is no motivation to reduce overdue hospitalization and to target resources to priority sectors of modern tuberculosis control, including a model of care focused on the patient. In the presence of a line-item budget at medical institutions, based on the input factors as the ratios of beds and staff, there is a passive disposal of budgetary funds by health care institutions and their employees who have no motivation to improve quality and efficiency of service provision. Outpatient treatment of tuberculosis is being implemented in Ukraine since 2011 and has many risks, namely creation of parallel systems, low consistency through dependence on funding for the project, reduced the role of the family doctor, the fragmentation of financing, etc. In terms of reforming approaches to health system financing, which began in Ukraine in late 2016, NGO Infection Control in Ukraine conducted piloting of a new, motivating method of remuneration of employees in primary health care. The innovative aspect of this funding mechanism is cost according to results of treatment. The existing method of payment on the basis of the standard per inhabitant (per capita ratio) was added with motivating costs according to results of work. The effectiveness of such treatment of TB patients at the outpatient stage is 90%, while in whole on the basis of a current system the effectiveness of treatment of newly diagnosed pulmonary TB with positive swab is around 60% in the country. Even though Ukraine has 5.24 TB beds per 10 000 citizens. Implemented pilot model of ambulatory treatment will be used for the creation of costs system according to results of activities, the integration of TB and primary health and social services and their focus on achieving results, the reduction of inpatient treatment of tuberculosis.

Keywords: health care reform, multi-drug resistant tuberculosis, outpatient treatment efficiency, tuberculosis

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3480 Unfair Labour Practice on Staff in Primary Health Care Facilities, Northwest Province, South Africa: A Qualitative Study

Authors: Maserapelo Gladys Serapelwane, Eva Mofatiki Manyedi

Abstract:

Background: Unfair labour practices on staff is a worldwide concern, which creates conflicts and disharmony among health workers. It is found that nursing staff members are unfairly treated without a valid reason in primary health care (PHC) facilities and predominantly in developing countries, and South Africa is not excluded. Objectives: The purpose of the study was to explore and describe the experiences of operational managers regarding unfair labour practices on staff by their local area managers and describe the perceptions of operational managers towards such treatment. Methods: A qualitative, descriptive, exploratory, and contextual research approach was considered appropriate for the study. In this study, the population comprised operational managers working in the PHC facilities of Northwest Province, South Africa. Purposive sampling was used to select participants for the study and focus group interviews were used to interview 23 operational managers. Ethical measures were applied throughout the study. Findings: The six phases of thematic analysis were used to analyze data collected for the study. Two themes that emerged are experiences of factors related to unfair labour practices in the PHC facilities and perceptions regarding how to improve their working conditions. The categories that were found in the first themes were favouritism and discrimination. In the second theme, in-service training and transparency regarding staff training and development emerged. Recommendations comprised, among others, training on the concepts of quality in the workplace and reinforcement of transparency regarding granting of study leave and attending workshops. Conclusion: Operational managers in the PHC facilities experienced unfair labour practices as evidenced by favouritism.

Keywords: unfair labour practices, primary health care facilities, operational managers, North West Province

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3479 Accessing Single Parenting and Disabled Children: A Case Study of Ghana

Authors: Edwina Owusu Panin

Abstract:

Families may face significant obstacles as a result of single parenting and disabilities. The amenities and support those single parents need to give their children with disabilities the care they need are frequently out of their reach. These can include financial hardship, limited access to health and education, and social isolation. In addition, cultural attitudes toward disability can worsen these challenges, making it difficult for families to get the support and resources they need. Despite these challenges, many single parents have shown resilience and strength to overcome these difficulties and defend the rights of their children; some, too, have failed in taking care of their disabled children in Ghana. The study traces the developmental process of how single parents cope with disabled children. There is a discouraging fact that single father’s face a much more dreadful task in taking care of their disabled children in Ghana, which is later highlighted in the article. Additional research and support are needed to address the unique needs of families facing these challenges. This case study explores the experiences of single parents raising children with disabilities in Ghana. Using a qualitative approach, the study examines the challenges facing lone parents in caring for children, including access to healthcare, education and social support. In addition, the study examines the impact of cultural disability attitudes on the experiences of single parents and their children and what causes it in Ghana. Findings indicate that single parents in Ghana face significant challenges in accessing resources and support for their children and that cultural attitudes toward disability may aggravate these challenges. However, the study recommends the tenacity and strengths of how to create awareness, protect the welfare and also by encouraging single parents to face these challenges and protect the rights of their children, swaying away influences of bad cultural attitudes.

Keywords: disability, single parenting, case study, assessing

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3478 Modelling Patient Condition-Based Demand for Managing Hospital Inventory

Authors: Esha Saha, Pradip Kumar Ray

Abstract:

A hospital inventory comprises of a large number and great variety of items for the proper treatment and care of patients, such as pharmaceuticals, medical equipment, surgical items, etc. Improper management of these items, i.e. stockouts, may lead to delay in treatment or other fatal consequences, even death of the patient. So, generally the hospitals tend to overstock items to avoid the risk of stockout which leads to unnecessary investment of money, difficulty in storing, more expiration and wastage, etc. Thus, in such challenging environment, it is necessary for hospitals to follow an inventory policy considering the stochasticity of demand in a hospital. Statistical analysis captures the correlation of patient condition based on bed occupancy with the patient demand which changes stochastically. Due to the dependency on bed occupancy, the markov model is developed that helps to map the changes in demand of hospital inventory based on the changes in the patient condition represented by the movements of bed occupancy states (acute care state, rehabilitative state and long-care state) during the length-of-stay of patient in a hospital. An inventory policy is developed for a hospital based on the fulfillment of patient demand with the objective of minimizing the frequency and quantity of placement of orders of inventoried items. The analytical structure of the model based on probability calculation is provided to show the optimal inventory-related decisions. A case-study is illustrated in this paper for the development of hospital inventory model based on patient demand for multiple inpatient pharmaceutical items. A sensitivity analysis is conducted to investigate the impact of inventory-related parameters on the developed optimal inventory policy. Therefore, the developed model and solution approach may help the hospital managers and pharmacists in managing the hospital inventory in case of stochastic demand of inpatient pharmaceutical items.

Keywords: bed occupancy, hospital inventory, markov model, patient condition, pharmaceutical items

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3477 Optical Fiber Data Throughput in a Quantum Communication System

Authors: Arash Kosari, Ali Araghi

Abstract:

A mathematical model for an optical-fiber communication channel is developed which results in an expression that calculates the throughput and loss of the corresponding link. The data are assumed to be transmitted by using of separate photons with different polarizations. The derived model also shows the dependency of data throughput with length of the channel and depolarization factor. It is observed that absorption of photons affects the throughput in a more intensive way in comparison with that of depolarization. Apart from that, the probability of depolarization and the absorption of radiated photons are obtained.

Keywords: absorption, data throughput, depolarization, optical fiber

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3476 Clinical Characteristics of Children Presenting with History of Child Sexual Abuse to a Tertiary Care Centre in India

Authors: T. S. Sowmya Bhaskaran, Shekhar Seshadri

Abstract:

This study aims to study the clinical features of with a history of Child Sexual Abuse (CSA). A chart review of 40 children (<16 years) with history of CSA evaluated at the Department of Child and Adolescent Psychiatry of NIMHANS during a two year period was performed. Results:The most common form of abuse was contact penetrative abuse (65%) followed by non-contact penetrative abuse (32.5%). 75% (N=30) had a psychiatric diagnosis at baseline. 50% of these children had one or more psychiatric comorbidities. Anxiety disorder was the most common diagnosis (27.5%) which included PTSD (11%) followed by Depressive disorder (25.2%). Children abused by multiple perpetrators were found to be more likely to have depression, to having a comorbid psychiatric disorder and more prone to exhibit sexualized behaviour. Children who also experienced physical violence at home were more likely to develop psychiatric illness following child sexual abuse. Psychiatric morbidity is high in clinic population of children with history of CSA. It is important to increase the awareness regarding the consequences of CSA in order to increase help seeking.

Keywords: child sexual abuse, India, tertiary care centre, clinical characteristics

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3475 Classification of Health Risk Factors to Predict the Risk of Falling in Older Adults

Authors: L. Lindsay, S. A. Coleman, D. Kerr, B. J. Taylor, A. Moorhead

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Cognitive decline and frailty is apparent in older adults leading to an increased likelihood of the risk of falling. Currently health care professionals have to make professional decisions regarding such risks, and hence make difficult decisions regarding the future welfare of the ageing population. This study uses health data from The Irish Longitudinal Study on Ageing (TILDA), focusing on adults over the age of 50 years, in order to analyse health risk factors and predict the likelihood of falls. This prediction is based on the use of machine learning algorithms whereby health risk factors are used as inputs to predict the likelihood of falling. Initial results show that health risk factors such as long-term health issues contribute to the number of falls. The identification of such health risk factors has the potential to inform health and social care professionals, older people and their family members in order to mitigate daily living risks.

Keywords: classification, falls, health risk factors, machine learning, older adults

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3474 Family Carers' Experiences in Striving for Medical Care and Finding Their Solutions for Family Members with Mental Illnesses

Authors: Yu-Yu Wang, Shih-Hua Hsieh, Ru-Shian Hsieh

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Wishes and choices being respected, and the right to be supported rather than coerced, have been internationally recognized as the human rights of persons with mental illness. In Taiwan, ‘coerced hospitalization’ has become difficult since the revision of the mental health legislation in 2007. Despite trend towards human rights, the real problem families face when their family members are in mental health crisis is the lack of alternative services. This study aims to explore: 1) When is hospitalization seen as the only solution by family members? 2) What are the barriers for arranging hospitalization, and how are they managed? 3) What have family carers learned, in their experiences of caring for their family members with mental illness? To answer these questions, qualitative approach was adopted, and focus group interviews were taken to collect data. This study includes 24 family carers. The main findings of this research include: First, hospital is the last resort for carers in helplessness. Family carers tend to do everything they could to provide care at home for their family members with mental illness. Carers seek hospitalization only when a patient’s behavior is too violent, weird, and/or abnormal, and beyond their ability to manage. Hospitalization, nevertheless, is never an easy choice. Obstacles emanate from the attitudes of the medical doctors, the restricted areas of ambulance service, and insufficient information from the carers’ part. On the other hand, with some professionals’ proactive assistance, access to medical care while in crisis becomes possible. Some family carers obtained help from the medical doctor, nurse, therapist and social workers. Some experienced good help from policemen, taxi drivers, and security guards at the hospital. The difficulty in accessing medical care prompts carers to work harder on assisting their family members with mental illness to stay in stable states. Carers found different ways of helping the ‘person’ to get along with the ‘illness’ and have better quality of life. Taking back ‘the right to control’ in utilizing medication, from passiveness to negotiating with medical doctors and seeking alternative therapies, are seen in many carers’ efforts. Besides, trying to maintain regular activities in daily life and play normal family roles are also experienced as important. Furthermore, talking with the patient as a person is also important. The authors conclude that in order to protect the human rights of persons with mental illness, it is crucial to make the medical care system more flexible and to make the services more humane: sufficient information should be provided and communicated, and efforts should be made to maintain the person’s social roles and to support the family.

Keywords: family carers, independent living, mental health crisis, persons with mental illness

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3473 Headache Masquerading as Common Psychiatric Disorders in Patients of Low Economic Class in a Tertiary Care Setting

Authors: Seema Singh Parmar, Shweta Chauhan

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Aims & Objectives: To evaluate the presence of various psychiatric disorders in patients reporting with a headache as the only symptom. Methodology: 200 patients with the chief complain of a headache who visited the psychiatric OPD of a tertiary care were investigated. Out of them 50 who had pure psychiatric illness without any other neurological disease were investigated, and their diagnosis was made. Independent sample t-tests were applied to generate results. Results: The most common psychiatric diagnosis seen in the sample was Depression (64%) out of which 47% showed features of Depression with anxious distress. Other psychiatric disorders seen were Generalized Anxiety Disorder, Panic Attacks, Somatic Symptom Disorder and Obsessive Compulsive Disorder. For pure psychiatry, headache related illnesses female to male ratio was 1.64. Conclusion: The increasing frequency of psychiatric disorders among patients who only visit the doctor seeking treat a headache shows the need for better identification of psychiatric disorders because proper diagnosis and target of psychiatric treatment shall give complete relief to the patient’s symptomatology.

Keywords: anxiety disorders, depression, headache, panic attacks

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3472 Using a Phenomenological Approach to Explore the Experiences of Nursing Students in Coping with Their Emotional Responses in Caring for End-Of-Life Patients

Authors: Yun Chan Lee

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Background: End-of-life care is a large area of all nursing practice and student nurses are likely to meet dying patients in many placement areas. It is therefore important to understand the emotional responses and coping strategies of student nurses in order for nursing education systems to have some appreciation of how nursing students might be supported in the future. Methodology: This research used a qualitative phenomenological approach. Six student nurses understanding a degree-level adult nursing course were interviewed. Their responses to questions were analyzed using interpretative phenomenological analysis. Finding: The findings identified 3 main themes. First, the common experience of ‘unpreparedness’. A very small number of participants felt that this was unavoidable and that ‘no preparation is possible’, the majority felt that they were unprepared because of ‘insufficient input’ from the university and as a result of wider ‘social taboos’ around death and dying. The second theme showed that emotions were affected by ‘the personal connection to the patient’ and the important sub-themes of ‘the evoking of memories’, ‘involvement in care’ and ‘sense of responsibility’. The third theme, the coping strategies used by students, seemed to fall into two broad areas those ‘internal’ with the student and those ‘external’. In terms of the internal coping strategies, ‘detachment’, ‘faith’, ‘rationalization’ and ‘reflective skills’ are the important components of this part. Regarding the external coping strategies, ‘clinical staff’ and ‘the importance of family and friends’ are the importance of accessing external forms of support. Implication: It is clear that student nurses are affected emotionally by caring for dying patients and many of them have apprehension even before they begin on their placements but very often this is unspoken. Those anxieties before the placement become more pronounced during and continue after the placements. This has implications for when support is offered and possibly its duration. Another significant point of the study is that participants often highlighted their wish to speak to qualified nurses after their experiences of being involved in end-of-life care and especially when they had been present at the time of death. Many of the students spoke that qualified nurses were not available to them. This seemed to be due to a number of reasons. Because the qualified nurses were not available, students had to make use of family members and friends to talk to. Consequently, the implication of this study is not only to educate student nurses but also to educate the qualified mentors on the importance of providing emotional support to students.

Keywords: nursing students, coping strategies, end-of-life care, emotional responses

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3471 Shifting to Electronic Operative Notes in Plastic surgery

Authors: Samar Mousa, Galini Mavromatidou, Rebecca Shirley

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Surgeons carry out numerous operations in the busy burns and plastic surgery department daily. Writing an accurate operation note with all the essential information is crucial for communication not only within the plastics team but also to the multi-disciplinary team looking after the patient, including other specialties, nurses and GPs. The Royal college of surgeons of England, in its guidelines of good surgical practice, mentioned that the surgeon should ensure that there are clear (preferably typed) operative notes for every procedure. The notes should accompany the patient into recovery and to the ward and should give sufficient detail to enable continuity of care by another doctor. The notes should include the Date and time, Elective/emergency procedure, Names of the operating surgeon and assistant, Name of the theatre anesthetist, Operative procedure carried out, Incision, Operative diagnosis, Operative findings, Any problems/complications, Any extra procedure performed and the reason why it was performed, Details of tissue removed, added or altered, Identification of any prosthesis used, including the serial numbers of prostheses and other implanted materials, Details of closure technique, Anticipated blood loss, Antibiotic prophylaxis (where applicable), DVT prophylaxis (where applicable), Detailed postoperative care instructions and Signature. Fourteen random days were chosen in December 2021 to assess the accuracy of operative notes and post-operative care. A total of 163 operative notes were examined. The average completion rates in all domains were 85.4%. An electronic operative note template was designed to cover all domains mentioned in the Royal College of surgeons' good surgical practice. It is kept in the hospital drive for all surgeons to use.

Keywords: operative notes, plastic surgery, documentation, electronic

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3470 The Impact of Neighbourhood Built-Environment on the Formulation and Facilitation of Bottom-up Mutual Help Networks for Senior Residents in Singapore

Authors: Wei Zhang, Chye Kiang Heng, John Chye Fung

Abstract:

Background: The world’s demographics is currently undergoing the largest wave of both rapid ageing and dramatic urbanisation in human history. As one of the most rapidly ageing countries, Singapore will see about one in four residents aged 65 years and above by 2030 in its high-rise and high-density urban environment. Research questions: To support urban seniors ageing in place and interdependence among senior residents and their informal caregivers, this study argues a community-based care model with bottom-up mutual help networks and asks how neighbourhood built-environment influences the formulation and facilitation of bottom-up mutual help networks in Singapore. Methods: Two public housing communities with different physical environment and rich age-friendly neighbourhood initiatives were chosen as the case studies. The categories, participants and places of bottom-up mutual help activities will be obtained via field observation, non-structural interviews of participants, service providers and managers of care facilities, and documents. Mapping and content analysis will be used to explore the influences of neighbourhood built-environment on the formulation and facilitation of bottom-up mutual help networks. Results and conclusions: The results showed that neighbourhood design, place programming, and place governance have a confluence on the bottom-up mutual help networks for senior residents. Significance: The outcomes of this study will provide fresh evidence for paradigm shifts of community-based care for the elderly and neighbourhood planning. In addition, the research findings will shed light on meaningful implications of urban planners and policy makers as they tackle with the issues arising from the ageing society.

Keywords: Built environment, Mutual help, Neighbourhood, Senior residents, Singapore

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3469 Integrating Renewable Energy Forecasting Systems with HEMS and Developing It with a Bottom-Up Approach

Authors: Punit Gandhi, J. C. Brezet, Tim Gorter, Uchechi Obinna

Abstract:

This paper introduces how weather forecasting could help in more efficient energy management for smart homes with the use of Home Energy Management Systems (HEMS). The paper also focuses on educating consumers and helping them make more informed decisions while using the HEMS. A combined approach of technical and user perspective has been selected to develop a novel HEMS-product-service combination in a more comprehensive manner. The current HEMS switches on/off the energy intensive appliances based on the fluctuating electricity tariffs, but with weather forecasting, it is possible to shift the time of use of energy intensive appliances to maximum electricity production from the renewable energy system installed in the house. Also, it is possible to estimate the heating/cooling load of the house for the day ahead demand. Hence, relevant insight is gained in the expected energy production and consumption load for the next day, facilitating better (more efficient, peak shaved, cheaper, etc.) energy management practices for smart homes. In literature, on the user perspective, it has been observed that consumers lose interest in using HEMS after three to four months. Therefore, to further help in better energy management practices, the new system had to be designed in a way that consumers would sustain their interaction with the system on a structural basis. It is hypothesized that, if consumers feel more comfortable with using such system, it would lead to a prolonged usage, including more energy savings and hence financial savings. To test the hypothesis, a survey for the HEMS is conducted, to which 59 valid responses were recorded. Analysis of the survey helped in designing a system which imparts better information about the energy production and consumption to the consumers. It is also found from the survey that, consumers like a variety of options and they do not like a constant reminder of what they should do. Hence, the final system is designed to encourage consumers to make an informed decision about their energy usage with a wide variety of behavioral options available. It is envisaged that the new system will be tested in several pioneering smart energy grid projects in both the Netherlands and India, with a continued ‘design thinking’ approach, combining the technical and user perspective, as the basis for further improvements.

Keywords: weather forecasting, smart grid, renewable energy forecasting, user defined HEMS

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3468 Rapid Nanoparticle Formulation Development and Screening Using NanoFabTxTM Platform

Authors: Zhen Ye, Maryam Zaroudi, Elizabeth Aisenbrey, Nicolynn E. Davis, Peng Gao

Abstract:

Nanoparticles have been used as drug delivery systems in the treatment of life-threatening diseases for decades, but traditional formulation development methods are time consuming and labor intensive. Millipore Sigma has developed a platform¬¬– NanoFabTxTM¬¬– for rapid and reproducible formulation development and screening to ensure consistentnanoparticle characteristics. Reproducible and precise control of the development process for a range of nanoparticle formulations accelerates the introduction of novel formulations to the clinic.

Keywords: Bio platform, Formulation development, NanoFabTxTM, Drug delivery

Procedia PDF Downloads 236
3467 A 0-1 Goal Programming Approach to Optimize the Layout of Hospital Units: A Case Study in an Emergency Department in Seoul

Authors: Farhood Rismanchian, Seong Hyeon Park, Young Hoon Lee

Abstract:

This paper proposes a method to optimize the layout of an emergency department (ED) based on real executions of care processes by considering several planning objectives simultaneously. Recently, demand for healthcare services has been dramatically increased. As the demand for healthcare services increases, so do the need for new healthcare buildings as well as the need for redesign and renovating existing ones. The importance of implementation of a standard set of engineering facilities planning and design techniques has been already proved in both manufacturing and service industry with many significant functional efficiencies. However, high complexity of care processes remains a major challenge to apply these methods in healthcare environments. Process mining techniques applied in this study to tackle the problem of complexity and to enhance care process analysis. Process related information such as clinical pathways extracted from the information system of an ED. A 0-1 goal programming approach is then proposed to find a single layout that simultaneously satisfies several goals. The proposed model solved by optimization software CPLEX 12. The solution reached using the proposed method has 42.2% improvement in terms of walking distance of normal patients and 47.6% improvement in walking distance of critical patients at minimum cost of relocation. It has been observed that lots of patients must unnecessarily walk long distances during their visit to the emergency department because of an inefficient design. A carefully designed layout can significantly decrease patient walking distance and related complications.

Keywords: healthcare operation management, goal programming, facility layout problem, process mining, clinical processes

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3466 Family Treatment Drug Court Cost Analysis: An In-depth Look At The Cost And Savings Of A Southeastern Family Treatment Drug Court

Authors: Ashley R. Logsdon, Becky F. Antle, Cynthia M. Kamer

Abstract:

This study examines the cost and benefits of a family treatment drug court in an urban county in a southeastern state. Additionally, this cost analysis will provide a detailed description of the type and cost of activities to produce the services provided to child welfare families. This study utilized return-on-investment analysis, which uses child welfare practices, disaggregates them into separate activities and estimates costs for these activities including child-level placement data for total cost of care for the child. Direct and indirect costs were considered as well as saving calculations what costs would be associated with child welfare outcomes both short and long term. The costs included were general program costs (salaries, drug screens, transportation, childcare, parent education, program evaluation, visitation, incentives) or personnel costs for other team members (judges, court administrators, child welfare workers, child welfare supervisors, and community mental health provider). The savings that were used in the study were length of time in out of home care, Medicaid costs, substance exposed births, emergency room utilization and jail/probation costs. This study documents an overall savings of between $168,993.30 and $837,993.30. The total savings per family divided by the 40 families who have participated in the program was between $4,224.83 to $20,949.83 per family. The results of this cost benefit analysis are consistent with prior research documenting savings associated with out of home care and jail/probation; however, there are also unique contributions of this study to the literature on cost effectiveness of family treatment drug courts. We will present recommendations for further utilization of family treatment drug courts and how to expand the current model.

Keywords: child welfare, cost analysis, family drug court, family treatment drug court

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3465 Thoughts Regarding Interprofessional Work between Nurses and Speech-Language-Hearing Therapists in Cancer Rehabilitation: An Approach for Dysphagia

Authors: Akemi Nasu, Keiko Matsumoto

Abstract:

Rehabilitation for cancer requires setting up individual goals for each patient and an approach that properly fits the stage of cancer when putting into practice. In order to cope with the daily changes in the patients' condition, the establishment of a good cooperative relationship between the nurses and the physiotherapists, occupational therapists, and speech-language-hearing therapists (therapists) becomes essential. This study will focus on the present situation of the cooperation between nurses and therapists, especially the speech-language-hearing therapists, and aim to elucidate what develops there. A semi-structured interview was conducted targeted at a physical therapist having practical experience in working in collaboration with nurses. The contents of the interview were transcribed and converted to data, and the data was encoded and categorized with sequentially increasing degrees of abstraction to conduct a qualitative explorative factor analysis of the data. When providing ethical explanations, particular care was taken to ensure that participants would not be subjected to any disadvantages as a result of participating in the study. In addition, they were also informed that their privacy would be ensured and that they have the right to decline to participate in the study. In addition, they were also informed that the results of the study would be announced publicly at an applicable nursing academic conference. This study has been approved following application to the ethical committee of the university with which the researchers are affiliated. The survey participant is a female speech-language-hearing therapist in her forties. As a result of the analysis, 6 categories were extracted consisting of 'measures to address appetite and aspiration pneumonia prevention', 'limitation of the care a therapist alone could provide', 'the all-inclusive patient- supportive care provided by nurses', 'expand the beneficial cooperation with nurses', 'providing education for nurses on the swallowing function utilizing videofluoroscopic examination of swallowing', 'enhancement of communication including conferences'. In order to improve the team performance, and for the teamwork competency necessary for the provision of safer care, mutual support is essential. As for the cooperation between nurses and therapists, this survey indicates that the maturing of the cooperation between professionals in order to improve nursing professionals' knowledge and enhance communication will lead to an improvement in the quality of the rehabilitation for cancer.

Keywords: cancer rehabilitation, nurses, speech-language-hearing therapists, interprofessional work

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3464 Mesenteric Ischemia Presenting as Acalculous Cholecystitis: A Case Review of a Rare Complication and Aberrant Anatomy

Authors: Joshua Russell, Omar Zubair, Reuben Ndegwa

Abstract:

Introduction: Mesenteric ischemia is an uncommon condition that can be challenging to diagnose in the acute setting, with the potential for significant morbidity and mortality. Very rarely has acute acalculous cholecystitis been described in the setting of mesenteric ischemia. Case: This was the case in a 78-year-old male, who initially presented with clinical and radiological evidence of small bowel obstruction, thought likely secondary to malignancy. The patient had a 6-week history of anorexia, worsening lower abdominal pain, and ~30kg of unintentional weight loss over a 12-month period and a CT- scan demonstrated a transition point in the distal ileum. The patient became increasingly hemodynamically unstable and peritonitic, and an emergency laparotomy was performed. Intra-operatively, however, no obvious transition point was identified, and instead, the gallbladder was markedly gangrenous and oedematous, consistent with acalculous cholecystitis. An open total cholecystectomy was subsequently performed. The patient was admitted to the Intensive Care Unit post-operatively and continued to deteriorate over the proceeding 48 hours, with two re-look laparotomies demonstrating progressively worsening bowel ischemia, initially in the distribution of the superior mesenteric artery and then the coeliac trunk. On review, the patient was found to have an aberrant right hepatic artery arising from the superior mesenteric artery. The extent of ischemia was considered non-survivable, and the patient was palliated. Discussion: Multiple theories currently exist for the underlying pathophysiology of acalculous cholecystitis, including biliary stasis, sepsis, and ischemia. This case lends further support to ischemia as the underlying etiology of acalculous cholecystitis. This is particularly the case when considered in the context of the patient’s aberrant right hepatic artery arising from the superior mesenteric artery, which occurs in 11-14% of patients. Conclusion: This case report adds further insight to the debate surrounding the pathophysiology of acalculous cholecystitis. It also presents acalculous cholecystitis as a complication of mesenteric ischemia that should always be considered, especially in the elderly patient and in the context of relatively common anatomical variations. Furthermore, the case brings to attention the importance of maintaining dynamic working diagnoses in the setting of evolving pathophysiology and clinical presentations.

Keywords: acalculous cholecystitis, anatomical variation, general surgery, mesenteric ischemia

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3463 Narrative Therapy as a Way of Terrorist Rehabilitation at Mohammad Bin Naif Counselling and Care Center: A Case Study

Authors: Yasser Almazrua

Abstract:

Terrorism is a multidimensional phenomenon that has increased recently. Many countries started combating terrorism through security forces; however, there has been relatively little attention given to rehabilitation programs for people involved in such terrorism acts. In Saudi Arabia, after facing so many terrorist attacks, they started understanding and countering terrorism differently by establishing Mohammad bin Naif Counselling and Care Center in 2006. The center now is considered one of the top experience centers in the world for terrorist rehabilitation and ideology correction. The center offers different programs such as training, educational, social, art and psychological programs. One of the approaches that have been used by psychological experts at the center is Narrative Therapy. It is a therapeutic approach that focuses on the ability of the client to identify their personal life story. The client during therapy works as a storyteller where he or she gets insight, meaning and better understanding of their own lives. Because each client at the center had a story, it can be better fit method for rehabilitation towards healing and personal development. The case describes a 34-years-old man who was involved in some terrorism activities locally by technically and financially supporting a terrorist group related to Al-Qaida. The beneficiary joined Mohammad bin Naif Counseling and Care Center after serving his sentence. Informed of consent has been given to the beneficiary before starting the therapeutic program. Both qualitative and quantitative data on the beneficiary are collected by self-reporting during the initial session, and by using a psychological measurement. The result found that the beneficiary was not insightful about himself, and he had a high level of repression which relatedly moved him to be targeted for recruitment in the terrorist group. With rehabilitation and by using the therapeutic approach, the beneficiary improved on the level of insight, specifically about himself and also about the experience. This case illustrates the importance of considering the effect of Narrative Therapy in terrorist rehabilitation programs.

Keywords: narrative therapy, rehabilitation, Saudi Arabia, terrorism

Procedia PDF Downloads 295
3462 Nutritional Profile and Food Intake Trends amongst Hospital Dieted Diabetic Eye Disease Patients of India

Authors: Parmeet Kaur, Nighat Yaseen Sofi, Shakti Kumar Gupta, Veena Pandey, Rajvaedhan Azad

Abstract:

Nutritional status and prevailing blood glucose level trends amongst hospitalized patients has been linked to clinical outcome. Therefore, the present study was undertaken to assess hospitalized Diabetic Eye Disease (DED) patients' anthropometric and dietary intake trends. DED patients with type 1 or 2 diabetes > 20 years were enrolled. Actual food intake was determined by weighed food record method. Mifflin St Joer predictive equation multiplied by a combined stress and activity factor of 1.3 was applied to estimate caloric needs. A questionnaire was further administered to obtain reasons of inadequate dietary intake. Results indicated validity of joint analyses of body mass index in combination with waist circumference for clinical risk prediction. Dietary data showed a significant difference (p < 0.0005) between average daily caloric and carbohydrate intake and actual daily caloric and carbohydrate needs. Mean fasting and post-prandial plasma glucose levels were 150.71 ± 72.200 mg/dL and 219.76 ± 97.365 mg/dL, respectively. Improvement in food delivery systems and nutrition educations were indicated for reducing plate waste and to enable better understanding of dietary aspects of diabetes management. A team approach of nurses, physicians and other health care providers is required besides the expertise of dietetics professional. To conclude, findings of the present study will be useful in planning nutritional care process (NCP) for optimizing glucose control as a component of quality medical nutrition therapy (MNT) in hospitalized DED patients.

Keywords: nutritional status, diabetic eye disease, nutrition care process, medical nutrition therapy

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3461 The Impact of an Educational Program on Knowledge, Attitude and Practices of Healthcare Professionals towards Family Presence during Resuscitation in an Emergency Department at a Tertiary Care Setting, in Karachi, Pakistan

Authors: Shaista Meghani, Rozina Karmaliani, Khairulnissa Ajani, Shireen Shahzad, Nadeem Ullah Khan

Abstract:

Background: The concept of Family Presence During Resuscitation (FPDR) is gradually gaining recognition in western countries, however, it is rarely considered in South Asian countries including Pakistan. Over time, patients’ and families’ rights have gained recognition and healthcare has progressed to become more patient-family centered. Objectives: The objective of this study was to evaluate the impact of an educational program on the Knowledge, Attitude, and Practices (KAP) of healthcare professionals (HCPs) towards FPDR in Emergency Department (ED), at a tertiary care setting, in Karachi, Pakistan. Methods: This was a Pre-test and Post-test study design. A convenient universal sampling was done, and all ED nurses and physicians with more than one year of experience were eligible. The intervention included one-hour training sessions for physicians (three sessions) and nurses (eight sessions), The KAP of nurses and physicians were assessed immediately after (post-test I), and two weeks(post-test II) after the intervention using a pretested questionnaire. Results: The findings of the study revealed that the mean scores of knowledge and attitude of HCPs at both time points were statistically significant (p-value=<0.001), however, an insignificant difference was found on practice of FPDR (p-value=>0.05). Conclusion: The study findings recommend that the educational program on FPDR for HCPs needs to be offered on an ongoing basis. Moreover, training modules need to be developed for the staff, and formal guidelines need to be proposed for FPDR, through a multidisciplinary team approach.

Keywords: family presence, cardiopulmonary resuscitation, attitude, education, practices, health care professionals

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3460 A Tool to Represent People Approach to the Use of Pharmaceuticals and Related Criticality and Needs: A Territory Experience

Authors: Barbara Pittau, Piergiorgio Palla, Antonio Mastino

Abstract:

Communication is fundamental to health education. The proper use of medicinal products is a crucial aspect of the health of citizens that affects both safety and health care spending. Therefore, encouraging/promoting communication, concerning the importance of proper use of pharmaceuticals, has substantial implications in terms of individual health, health care, and health care system sustainability. In view of these considerations, in the context of two projects, one of which is still in progress, a relational database-backed web application named COLLABORAFARMACISOLA has been designed and developed as a tool to analyze and visualize how people approach the use of medicinal products, with the aim of improving and enhancing communication efficacy. The software application is being used to collect information (anonymously and voluntarily) from the citizens of Sardinia, an Italian region, regarding their knowledge, experiences, and opinions towards pharmaceuticals. This study that was conducted to date on thousand of interviewed people, has focused on different aspects such as: the treatment interruption and the "self-prescription” without medical consultation, the attention paid to reading the leaflets, the awareness of the economic value of the pharmaceuticals, the importance of avoiding the waste of medicinal products and the attitudes towards the use of generics. To this purpose, our software application provides a set of ad hoc parsing routines, to store information into the structure of a relational database and to process and visualize it through a set of interactive tools aimed to emphasize the findings and the insights obtained. The results of our preliminary analysis show the efficacy of the awareness plan and, at the same time, the criticality and the needs of the territory under examination. The ultimate goal of our study is to provide a contribution to the community by improving communication that can result in a benefit for public health in a context strictly connected to the reality of the territory.

Keywords: communication, pharmaceuticals, public health, relational database, tool, web application

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3459 Causes of Death in Neuromuscular Disease Patients: 15-Year Experience in a Tertiary Care Hospital

Authors: Po-Ching Chou, Wen-Chen Liang, I. Chen Chen, Jong-Hau Hsu, Yuh-Jyh Jong

Abstract:

Background:Cardiopulmonary complications seem to cause high morbidity and mortality in patients with neuromuscular diseases (NMD) but so far there is no domestic data reported in Taiwan. We, therefore attempted to analyze the factors to cause the death in NMD patients from our cohort. Methods:From 1998 to 2013, we retrospectively collected the information of the NMD patients treated and followed up in Kaohsiung Medical University Hospital. Forty-two patients with NMD who expired during these fifteen years were enrolled. The medical records of these patients were reviewed and the causes of death and the associated affecting factors were analyzed. Results:Eighteen patients with NMD (mean age=13.3, SD=12.4) with complete medical record and detailed information were finally included in this study, including spinal muscular atrophy (SMA) (n=9, 7/9: type 1), Duchenne muscular dystrophy (n=6), congenital muscular dystrophy (n=1), carnitine acyl-carnitine translocase (CACT) deficiency (n=1) and spinal muscular atrophy with respiratory distress (SMARD)(n=1). The place of death was in ICU (n=11, 61%), emergency room (n=3, 16.6%) or home (n=4, 22.2%). For SMA type 1 patients, most of them (71.4%, 5/7) died in emergency room or home and the other two expired during an ICU admission. The causes of death included acute respiratory failure due to pneumonia (n=13, 72.2 %), ventilator failure or dislocation (n=2, 11.1%), suffocation/choking (n=2, 11.1%), and heart failure with hypertrophic cardiomyopathy (n=1, 5.55%). Among the 15 patients died of respiratory failure or choking, 73.3% of the patients (n=11) received no ventilator care at home. 80% of the patients (n=12) received no cough assist at home. The patient died of cardiomyopathy received no medications for heart failure until the last admission. Conclusion: Respiratory failure and choking are the leading causes of death in NMD patients. Appropriate respiratory support and airway clearance play the critical role to reduce the mortality.

Keywords: neuromuscular disease, cause of death, tertiary care hospital, medical sciences

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3458 Experiences and Perceptions of Parents Raising Children with Autism

Authors: Tamene Keneni, Tibebu Yohannes

Abstract:

The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on the rise globally, and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries, including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. To this end, we used a qualitative survey to collect data from a convenient sample of parents raising a child with autism. The data collected were subjected to qualitative analysis that yielded several themes and subthemes, including late diagnosis, parents’ reactions to diagnosis, sources of information during and after diagnosis, differing reactions to having a child with autism from siblings, extended family members, and the larger community, attribution of autism to several causes by the community, lack of recognition and open discussion of autism and lack of appropriated public educational and health care services for children with autism and their parents. The themes and subthemes identified were discussed in light of existing literature, and implications for practice were drawn.

Keywords: ASD, autism, children with autism, raising children with autism

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