Search results for: children with complex medical care needs

Authors: Ikuko Tomomatsu, Beverley Anne Yamamoto

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Background: There has been an increase in the number of Children with Complex Medical Care Needs (CCMCN) living outside hospital settings in Japan. Most CCMCNs require someone to provide or support them in the provision of care and to respond in the case of an emergency in their everyday lives, including in school settings. One or two yoga teachers qualified within the teacher-training system to work in the health rooms in schools, are assigned to schools in Japan based on enrollment numbers, and are responsible for all students' health. CCMCN requires individualized support, which the Yogo teachers cannot adequately provide. Clinically trained nurses have increasingly been allocated to mainstream schools to provide medical care support for the CCMCN as a new kind of school nurse, but the supply has fallen far short of demand. In 2021, the Act on Support for Children with Complex Medical Care Needs and their Families was passed, requiring local governments to assign school nurses to schools to support CCMCN. The study aimed to understand these nurses' experiences (job description, rewards, challenges) allocated to schools to provide medical care for CCMCN. The study also aimed to explore what professional development looks like for nurses working in schools. Methods: Using a semi-structured interview technique, we interviewed sixteen nurses currently providing care to CCMCN in mainstream schools. Using an interview guide, they were asked about their work, satisfaction, challenges and concerns, thoughts on professionalism, and the educational and training environment. The interviews were audio-recorded and transcribed. We conducted a thematic analysis of the data. Results: The main concerns and problems were not directly related to medical care delivery but to communication with the children, the teachers' understanding of educational policy, and the principal's philosophy. Unlike medical institutions, where treatment is the priority, most children do not need treatment in schools. Even those needing medical care do not need interventions for most of the day. In this environment, the nurses interviewed reported that it is important to understand the school situation and the teachers' philosophies when providing medical care. One of the main challenges is knowing what to do when not providing care, especially if requests from school staff have nothing to do with their professional skills. Conclusion: Through the analysis of concerns and challenges faced by the nurses, the process of providing medical care in a school setting as a health care provider was discussed as follows. Each nurse contemplates the methods and implications of safely implementing medical care in schools. This was considered a process of situating the implementation of medical care by the nurses in the context of education. This requires that the nurses develop new skills and knowledge, which some nurses find stimulating while others find challenging.

Keywords: school nurse, children with complex medical care needs, professionalization, mainstream school

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Authors: T. Turan, Ç. Erdoğan

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As far as is known, general nursing care practices do not include specific evidence-based practices related to oral care in children. This study aimed to evaluate the evidence based nursing practice for oral care in children. This article is planned as a review article by searching the literature in this field. According to all age groups and the oral care in various specific situations located evidence in the literature were examined. It has been determined that the methods and frequency used in oral care practices performed by nurses in clinics differ from one hospital to another. In addition, it is seen that different solutions are used in basic oral care, oral care practices to prevent ventilator-associated pneumonia and evidence-based practice in mucositis management in children. As a result, a standard should be established in oral care practices for children and education for children is recommended.

Keywords: evidence-based practice, oral care, nursing, children

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Authors: Hazel S. Cometa-Lamberte

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This paper presents the residential care workers reflections in working with children who were under protective custody and placed in a residential care facility for children. Key informant interviews and focus group discussion were employed in this study to analyze the views of residential care workers on the programs and services and case management system in residential care for children. Results suggest that working in a residential care facility for children needs the interplay of both the worker’s personal and professional values, knowledge and skills in working with children. Analyzing the residential care workers experiences in handling children in residential care facilities is vital for the improvement of the policies, programs and services, the repertoire of techniques and facilitate the creation of a new social work practice framework/model in child protection specifically in residential care facilities.

Keywords: child protection, residential care, residential care workers, social workers

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Authors: Florence A. Undiyaundeye, Aniashie Akpanke

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Early identification of developmental disorders in infants and toddlers is critical for the well being of children. It is also an integral function of the primary care medical provider and the early care given in the home or crèche. This paper is focused at providing information on special need infants and toddlers and strategies to support them in developmental concern to cope with the challenges in and out of the classroom and to interact with their peers without stigmatization and inferiority complex. The target children are from birth through three years of age. There is a strong recommendation for developmental surveillance to be incorporated at every well child preventive care program in training and practical stage of formal school settings. The paper posits that any concerns raised during surveillance should be promptly addressed with standardized developmental screening by appropriate health service providers. In addition screening tests should be administered regularly at age 9+, 19+ and 30 months of these infants. The paper also establishes that the early identification of these developmental challenges of the infants and toddlers should lead to further developmental and medical evaluation, diagnosis and treatment, including early developmental school intervention, control and teaching and learning integration and inclusion for proper career build up. Children diagnosed with developmental disorders should be identified as children with special needs so that management is initiated and its underlying etiology may also drive a range of treatment of the child, to parents. Conselling and school integration as applicable to the child’s specific need and care for sustenance in societal functioning.

Keywords: care, special need, support, infants and toddlers, management and developmental disorders

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Authors: Ming-Juei Chang, Hui-Ing Ma, Tsung-Hsueh Lu

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Introduction: Because of the advance of medical care (e.g., ventilation techniques and gastrostomy feeding), more and more children with CP can live to adulthood. However, little is known about the use of health care services from children to adults who have CP. The patterns of utilization of ambulatory care are heavily influenced by insurance coverage and primary care gatekeeper regulation. The purpose of this study was to examine patterns of ambulatory care utilization among individuals with CP in Taiwan, a country with universal coverage and no gatekeeper regulation. Methods: A representative sample of one million patients (about 1/23 of total population) covered by Taiwan’s National Health Insurance was used to analyze the ambulatory care utilization in individuals with CP. Data were analyzed by 3 different age groups (children, youth and adults) during 2000 to 2003. Participants were identified by the presence of CP diagnosis made by pediatricians or physicians of physical and rehabilitation medicine and stated at least three times in claims data. Results: Annual rates of outpatient physician visits were 31680 for children, 16492 for youth, and 28617 for adults with CP (per 1000 persons). Individuals with CP received over 50% of their outpatient care from hospital outpatient department. Higher use of specialist physician services was found in children (54.7%) than in the other two age groups (28.4% in youth and 18.8% in adults). Diseases of respiratory system were the most frequent diagnoses for visits in both children and youth with CP. Diseases of the circulatory system were the main reasons (24.3%) that adults with CP visited hospital outpatient care department or clinics. Conclusion: This study showed different patterns of ambulatory care utilization among different age groups. It appears that youth and adults with CP continue to have complex health issues and rely heavily on the health care system. Additional studies are needed to determine the factors which influence ambulatory care utilization among individuals with CP.

Keywords: cerebral palsy, health services, lifespan, universal coverage

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Authors: Mudafara Bengleil

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Estimation of the magnitude and causes of poisoning was the objective of the current study. A retrospective study of medical records of all poisoning children admitted to Benghazi Children Hospital in Libya from January 2008 up to December 2010. Number of children admitted was 244; the age ranged from less than one to 13 years old. Most of cases were admitted with mild symptom and the majority of them were boys. Only few cases admitted to intensive care unit and there was no mortality recorded through the period of study. Age group 1 to 3 years (50.8%) had the highest frequency of admission and the peak of admission was during summer. The most common cause of admission was due to ingestion of medication (53.69%), House hold product exposure (26.64%) was the second causes of admission while, 19.67% of admissions were due to Food poisoning. Almost all admitted cases were accidental and medicines were the most consumed substances in addition, improper storage of toxic agents were the first risk factor of poisoning. Present results indicated that, children poisoning seems to be a common pediatric care problem which need to control and prevent.

Keywords: poisoning, children, hospital, medical

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Authors: Ewelina Zdebska

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A social worker is an integral part of an interdisciplinary team working with the child and his family in a terminal state. Social support is an integral part of the medical procedure in the care of hospice. This is the basis and prerequisite of full treatment and good care of the child - patient, whose illness often finds at least the expected period of his life when his personal and legal issues are not regulated, and the family burdened with the problem requires care and support specialists - professionals. Hospice for Children in Krakow: a palliative care team operating in the province of Krakow and Malopolska, conducts specialized care for terminally ill children in place of their residence from the time when parents and doctors decided to end of treatment in hospital, allows parents to carry out medical care at home, provides parents social and legal assistance and provides care, psychological support and friendship to families throughout the life of the child's illness and after his death, as long as it is needed. The social worker in a hospice does not bear the burden of solving social problems, which is the responsibility of other authorities, but provides support possible and necessary at the moment. The most common form of assistance is to provide information on benefits, which for the child and his family may be subject to any treatment and fight for the life and health of a child. Employee assists in the preparation and completion of documents, requests to increase the degree of disability because of progressive disease or Allowance care because of the inability to live independently. It works in settling all the issues with the Department of Social Security, as well as with the Municipal and District Team Affairs of disability. Seeking help and support using multi-faceted childcare. With the Centres for Social Welfare contacts are also often on the organization of additional respite care for the sick at home (care), especially in the work of the other members of the family or if the family can not cope with the care and needs extra help. Hospice for Children in Cracow completing construction of Poland's first Respite Care Centre for chronically and terminally ill children, will be an open house where children suffering from chronic and incurable diseases and their families can get professional help, whenever - when they need it. The social worker has to pick up a very important role in caring for a terminally ill child. His presence gives a little patient and family the opportunity to be at this difficult time together while organizing assistance and support.

Keywords: social worker, care, terminal care, hospice

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Authors: Kumari Bandana Bhatt, Navin Bhatt

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Background: Orphans and vulnerable children (OVC) are high risk of physical, mental, sexual and emotional abuse and face social stigma and discrimination which significantly increase the risk of mental and behavioral disorders such as anxiety, depression or emotional problems even they stay in well run child care homes. The objective of this study was to estimate the prevalence of depression and determine the determinants among OVC in child care homes in Nepal. Methods: An institutional-based analytical cross-sectional study was conducted in twenty orphanages of five districts of Nepal. Six hundred two children were recruited into the study. After the informed consent form obtaining, the guardian and assent were interviewed by a semi-structured questionnaire and Beck Depression Inventory-II (BDI-II). Logistic regression was used for detecting the association between variables at the significant level of =0.05. Results: The study revealed that 33.20% of OVC had depression. Among them 66.80% of children experienced minimal depression, 17.40% had mild depression, 11.30% had moderate depression 4.50% had severe depression. Sex, alcohol drinking, congenital problem, social support and bully were the main variables associated with depression among OVC of the child care homes in Nepal. Conclusion: Prevalence of depression was high among the orphans and vulnerable children living in child care homes especially among the female children in Nepal. Therefore, early identification and instituting of preventive measures of depression are essential to reduce this problem in this special group of children living in child care homes.

Keywords: Mental health, Depression, Orphans and vulnerable children, child care homes

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Authors: Dina Maratovna Aikenova

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Child care policy must be a priority area of public authorities in any country. This study investigates child care policy in Kazakhstan in accordance with the current position of children and laws. The results show that Kazakhstan policy in this sphere needs more systematic model including state economic and social measures, parental involvement and role of non-government organizations.

Keywords: children, Kazakhstan, policy, vulnerability

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Authors: Soo-Bi Lee, Jun Young Jeong, Zehgn Lin, Chenminxi

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Background: In South Korea, a problematic phenomenon has recently arisen whereby adult children continue to receive parentalcaregivingin some cases. These phenomena has been shown to affect the mental health of mothers. Study Goals: The purposes of this study are to verify whether the mediating effects of stress on the relationship between a woman’s care burden for their adult children and depression are moderated by their satisfaction about their husbands’ sharing of the caregiving. Methodology: This study analyzed 3,053 married women with adult children using the most recent data from the “Korean Longitudinal Survey of Women & Families 7th(2018)" conducted at the national level. The analysis was conducted using the SPSS Process Macro Model 7 to verify the moderated mediating effects and subsequently confirm their significance based on the bootstrapping method. Results and Implications: (1) Stress was identified a mediating factor in the relationship between the care burden for adult children and depression; and (2) the mediating effects of stress on depression from the burden of caring for adult children are modulated by the woman's satisfaction with her husband’s sharing of the care burden. In other words, the higher the caring burden of adult children, the higher the mother's stress, which increases depression. At this time, the higher the their satisfaction with the husband's share of care in the path of mother's care burden and stress, the lower the mother's stress and, ultimately, the depression be alleviated. Conclusion: Programs that promote the mental health of married women heavily with the caring burden for their adult children, as well as those that improve social awareness regarding husbands' sharing of the care burden, should be implemented. Also, social welfare policy alternatives are needed at the national level to reduce the caring burden caused by adult children.

Keywords: married women, adult children care burden, stress, depression, satisfaction with husbands sharing of the care

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Authors: Maryum Nawaz

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Purpose: To determine the frequency of refractive errors in squinting eyes of children from 4 to 16 years presenting at tertiary care hospital. Study Design: A descriptive cross-sectional study was done. Place and Duration: The study was conducted in Pediatric Ophthalmology, Hayatabad Medical Complex, Peshawar. Materials and Methods: The sample size was 146 keeping 41.45%5 proportion of refractive errors in children with squinting eyes, 95% confidence interval and 8% margin of error under WHO sample size calculations. Non-probability consecutive sampling was done. Result: Mean age was 8.57±2.66 years. Male were 89 (61.0%) and female were 57 (39.0%). Refractive error was present in 56 (38.4%) and was not present in 90 (61.6%) of patients. There was no association of gender, age, parent refractive errors, or early usage of electric equipment with the refractive errors. Conclusion: There is a high prevalence of refractive errors in a patient with strabismus. There is no association of age, gender, parent refractive errors, or early usage of electric equipment in the occurrence of refractive errors. Further studies are recommended for confirmation of these.

Keywords: strabismus, refractive error, myopia, hypermetropia, astigmatism

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Authors: Minna K. Miller, Chantel. E. Canessa, Suzanna V. McRae, Susan Shumay, Alissa Collingridge

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Primary care provides the first point of contact and access to health care services. For the pediatric population, the goal is to help healthy children stay healthy and to help those that are sick get better. Primary care facilitates regular well baby/child visits; health promotion and disease prevention; investigation, diagnosis and management of acute and chronic illnesses; health education; both consultation and collaboration with, and referral to other health care professionals. There is a protective association between regular well-child visit care and preventable hospitalization. Further, low adherence to well-child care and poor continuity of care are independently associated with increased risk of hospitalization. With a declining number of family physicians caring for children, and only a portion of pediatricians providing primary care services, it is becoming increasingly difficult for children and their families to access primary care. Nurse practitioners are in a unique position to improve access to primary care and improve health outcomes for children. Limited literature is available on the nurse practitioner role in primary care pediatrics. The purpose of this paper is to describe the development, implementation and evaluation of a Nurse Practitioner-led pediatric primary care clinic in a tertiary care setting. Utilizing the participatory, evidence-based, patient-focused process for advanced practice nursing (PEPPA framework), this paper highlights the results of the initial needs assessment/gap analysis, the new service delivery model, populations served, and outcome measures.

Keywords: access, health outcomes, nurse practitioner, pediatric primary care, PEPPA framework

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Authors: Sandra Soca Lozano, Teresa Isabel Lozano Pérez, Germain Weber

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Cancer is a chronic disease of high prevalence in children and adolescents. Medical care in Cuba is carried out by a multidisciplinary team and family is the mediator between this team and the patient. Around this disease, there are interwoven many stereotypes and taboos by its relation to death. In this research report, we describe the work paradigm of psychological care to patients suffering from these diseases in the University Pediatric Hospital Juan Manuel Márquez of Havana, Cuba. We present the psychosocial factors that must be taken into account to provide comprehensive care and ensuring the quality of life of patients and their families. We also present the factors related to the health team and the management of information done with the patient. This is a descriptive proposal from the working experience accumulated in the named institution and in the review of the literature. As a result of this report we make a proposal of teamwork and the aspects in which psychological intervention should be continue performing in terms of increasing the quality of the care made by the health team. We conclude that it is necessary to continue improving the information management of children and adolescents with theses health problems and took into account their right to autonomy.

Keywords: comprehensive care, management of information, psychosocial factors, right to autonomy

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Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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Background: A mixed method systematic review was undertaken in order to explore issues related to the experiences of health care providers and parents in the care of children with palliative care needs. The aims of this systematic review were to identify existing evidence about the experiences of communication in the care of children with palliative care needs, to appraise the research conducted in this area and to identify gaps in the literature in order to recommend for future related studies. Method: A mixed method systematic review of research on the experience of communication in the care of children with palliative care needs, conducted with parents and health professionals was undertaken. The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period of 2000-2016. Inclusion was limited to studies of communication experience in the care of children with palliative care needs. Result: Thirty-eight studies were found. The studies were conducted in a variety of countries: Uganda, Jordan, USA, UK, Taiwan, Turkey, Ireland, Poland, Brazil, Australia, Switzerland, Sweden, Netherland, Lebanon, Spain, Greece, and China. The current review shows that parents tend to protect their children when they are discussing their illnesses with them, particularly where they have a life-threatening or life-limiting condition. The approach of parents towards the discussion of sensitive issues concerning death with their children is significantly affected by the cultural background of the families. Conservative cultures encourage collusion behaviours which tend to keep children unaware of the incurable nature of the disease. The major communication challenges reported by health professionals are facing difficulties in judging how much information should be given to parents, responding to difficult questions, conflicts with families and inadequate skills to support grieving families. Conclusion: It is probably significant for the future studies to consider the change of parent-child communication experience over time in order to understand how the parents could change their interaction styles with their children according to the different stages of their children’s disease. Moreover, further studies are required to investigate the experience of communication of parents of children with non-malignant life-threatening and life-limiting illnesses.

Keywords: children with life-threatening or life- limiting illnesses, end of life, experience of communication, healthcare care providers, paediatric palliative care

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Authors: Yuying Zhu

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Left-behind children in rural areas are vulnerable groups with the course of our country’s urbanization. Left-behind young children in rural area separate from their parents in their early childhood, vicegerent guardian’s care are less sensitive and careful than children’s parents; they give less concern to children’s verbal development, this makes the verbal problem of the left-behind children to be ubiquitous problem. This study chooses four kindergartens from the east the middle and the west of the Henan Province, explore the verbal development differences between the left-behind young children and the non-left-behind young rural children through the McCarthy Scales of Children's Abilities (MSCA) and self-made questionnaires. The study shows that there is no significant difference between the left-behind young children and the non-left-behind young rural children in the verbal development, though the marks in primary class and middle class the non-left-behind young rural children is higher, but, the top class in the kindergarten is not. What’s more, the emergent reading and the economy have significant influence on young children’s verbal ability.

Keywords: left-behind children, non-left-behind children, regional difference, verbal development

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

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

Keywords: cancer, children, unplanned application, unplanned hospitalization

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Authors: Reem Al-Garni

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Malnutrition is a global epidemic, but the under-weight or Failure-To-Thrive risk is increasing in rehabilitation setting and considered one of the contribution factor for developmental delay. Beside the consequences of malnutrition on children growth and development, there are other side-effects that might delay or hold the progress of rehabilitation. The awareness for malnutrition must be raised and discussed by the rehabilitation team, to promote the treatment and to optimize the client care. The solution can start from food supplements intake and / or Enteral Nutrition plan, depending on the malnutrition level and to reach the goal, the medical team should to work together in order to provide comprehensive treatment and to help the family to be able to manage their child condition. We have explore the outcomes of rehabilitation between the children with CP whose diagnosed with malnutrition and children with normal body Wight Over a period of 4 months who received 4-6 weeks of rehabilitation two hours daily by using WeeFIM score to measure rehabilitation outcomes. WeeFIM measures and covers various domains, such as: self-care, mobility, locomotion, communication and other psycho-social aspects. Our findings reported that children with normal body Wight has better outcomes and improvement comparing with children with malnutrition for the entire study sample.

Keywords: Cerebral Palsy (CP), pediatric Functional Independent Measure (WeeFIM), rehabilitation, malnutrition

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Authors: Abir Dey, Shams Noman

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Introduction: Offshore Island is the remote and isolated area from the terrestrial mainland. They are deprived of their needs. The children from an offshore island are usually underserved in the case of health care because it is a remote area where the health care systems are quite poor compared to mainland. So, the proper information is required for appropriate planning to reduce underlying causes behind visual deprivation among the surviving children of the Offshore Island. Purpose: The purpose of this study was to determine ocular morbidities, knowledge, and barriers of eye care services among children in an Offshore Island. Methods: The study team visited, and all data were collected from different rural communities at Sandwip Upazila, Chittagong district for screening the children aged 5-16 years old by doing spot examination. The whole study was conducted in both qualitative and quantitative methods. To determine ocular status of children, examinations were done under skilled Ophthalmologists and Optometrists. A focus group discussion was held. The sample size was 490. It was a community based descriptive study and the sampling method was purposive sampling. Results: In total 490 children, about 56.90% were female and 43.10% were male. Among them 456 were school-going children (93.1%) and 34 were non-school going children (6.9%). In this study the most common ocular morbidity was Allergic Conjunctivitis (35.2%). Other mentionable ocular morbidities were Refractive error (27.7%), Blepharitis (13.8%), Meibomian Gland Dysfunction (7.5%), Strabismus (6.3%) and Amblyopia (6.3%). Most of the non-school going children were involved in different types of domestic work like farming, fishing, etc. About 90.04% children who had different ocular abnormalities could not attend to the doctor due to various reasons. Conclusions: The ocular morbidity was high in rate on the offshore island. Eye health care facility was also not well established there. Awareness should be raised about necessity of maintaining hygiene and eye healthcare among the island people. Timely intervention through available eye care facilities and management can reduce the ocular morbidity rate in that area.

Keywords: morbidities, screening, barriers, offshore island, knowledge

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Authors: Edwina Owusu Panin, Derrick Antwi

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Autism and cerebral palsy are fraternal twins in the world of communication and social interaction challenges. Caring for autistic and cerebral palsied female teenagers in Ghana can be difficult and stressful for parents. We highlight the findings of dealing with stress, where female teenagers are more daunting than male teenagers, related to the demand for a lot of attention linked to the puberty transition. This brief examines the challenges that parents face in caring for teenagers with autism and cerebral palsy in Ghana and the stress that can develop from parental care. The article also highlights the importance of identifying and addressing mental health and self-care issues in parents of disabled female teenagers, as these issues can significantly affect the well-being of both parents and their children. Parents of teenagers with disabilities often face a variety of challenges, including managing their children's care and medical needs, navigating the educational system, and addressing social and emotional needs. These challenges can be even more disheartening in Ghana, where resources and support for families of children with disabilities are limited. In a nutshell, the challenges of caring for female teenagers with autism and cerebral palsy can be significant in Ghana. The article outlines methods that parents in Ghana can take to manage their stress and provide a brighter future for their female teenagers. Parents are better able to cope with the challenges of parenting and provide the best care possible for their female teenagers with disabilities.

Keywords: autism, cerebral palsy, female teenagers, parental care

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Authors: Cinzia Valente

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Over the last few years, national legislators have been forced to deal with social changes that have had important repercussions in family law and children’s law. This growing focus on minors has provoked important reforms, specifically on issues relating to the welfare and protection of children. My presentation focuses on the issue of migrant children in particular I refer to unaccompanied children, or ‘children on the move’, or separate children or any other term defining migrant minors who cross national borders seeking protection or better opportunities. They arrive often illegally, on the European territory without a responsible adult who take care of them. There is a common assumption that migrants are running away from conflicts, poverty and human rights abuse and they arrive in a foreign country hoping a better life; children without persons who takes care of them encounter some difficulties in their integration in the host country. The migration flows recorded in recent decades towards EU countries, and Italy in particular, have imposed an intense pressure to modernize institutions, services and specific legal frameworks, with the aim of responding adequately to the needs of foreign individuals, as well as ensuring a good level of living standards and facilitating integration, especially for migrant children. The object of my paper is the analysis of the Italian rules, practices and services existing in favor of unaccompanied children (foster care, reunification, acquisition of citizenship and other) in comparison with other European legal systems on the same thematic with a comparative method. Highlighting European standards to find common principles for the best solution to children's problems is the conclusive aim of my presentation.

Keywords: Children , Family Law, Migration , Uniform Law

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Authors: Daria Druzhinenko- Silhan, Patrick Schmoll

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Childhood obesity is one of the important problem in domain of health care. During two recent decades we are observing a real epidemic of this noninfectious illness. Its consequences are hard: cardio-vascular disease; diabetes; arthrosis etc. (OMS, 2012) Keep Healthy Kids  » study aims to create a new system of accompanying of childhood obesity based on new technologies as mobile applications or serious video-games. We realize a support-study which aims to understand motivations, psychological dynamite and family's impact on weight-loss process in childhood. Sample: 65 children from 7 to 10 years old accompanied by special Care Center in France. Methodology: we proceed by an innovative approach that bases on quantitative and qualitative methods of data collection. We focus our proposal on data collected from medical files. We are also realizing individual assessment (still ongoing) that aims to understand psychological profiles of obese children and their family dynamic. Results: Only 16,9% of children asked for medical accompanying of obesity. We noted that the most important reason to come to the care Center was the fact of mates' scoffs (46,2%°), the second one was the appearance or look (40 %). We found out that the self-image of these children in self-evaluation questionnaire was described mostly as rather good (46,2) or good (28,2%); the most part of children evaluated their well-being as rather good (29,7%) or good (51,4%). In interviews children had tendency to not recall why they came to the Care Center. Discussion : These results permit us to make a hypothesis that children suffering of overweight or obesity are not clearly aware why they must loose weight. It was rather the peer environment that pointed out the problem of overweight for them. So the motivation to loose weight is mostly supported by environment. We suppose that it is a « weak-point » of their motivation and it can be over-come using serious video-games supporting physical activity that can make deviate the motivation from « to loose weight for be looked better by the others » into « have fun and feeling me better ».

Keywords: childhood obesity, motivation, weight-loss, serious video-game

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Authors: Cassey Younghans

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Background: Current health care trends demonstrate that there is an increasing number of patients being hospitalized with complex comorbidities. These complex needs require advanced therapies, and treatment goals often focus on doing everything possible to prolong life rather than focusing on the individual patient’s quality of life which is the goal of palliative care efforts. Patients benefit from palliative care in the early stages of the illness rather than after the disease progressed or the state of acuity has advanced. The clinical problem identified was that palliative care was not being implemented early enough in the disease process with patients who had complex medical conditions and who would benefit from the philosophy and skills of palliative care professionals. Purpose: The purpose of this quality improvement study was to increase the number of palliative care screenings and consults completed on adults after being admitted to one Non-ICU and Non-COVID hospital unit. Methods: A retrospective chart review assessing for possible missed opportunities to introduce palliation was performed for patients with six primary diagnoses, including heart failure, liver failure, end stage renal disease, chronic obstructive pulmonary disease, cerebrovascular accident, and cancer in a population of adults over the ago of 19 on one medical-surgical unit over a three-month period prior to the intervention. An educational session with the nurses on the benefits of palliative care was conducted by the researcher, and a screening tool was implemented. The expected outcome was to have an increase in early palliative care consultation with patients with complex comorbid conditions and a decrease in missed opportunities for the implementation of palliative care. Another retrospective chart review was completed following completion of the three month piloting of the tool. Results: During the retrospective chart review, 46 patients were admitted to the medical-surgical floor with the primary diagnoses identified in the inclusion criteria. Six patients had palliative care consults completed during that time. Twenty-two palliative care screening tools were completed during the intervention period. Of those, 15 of the patients scored a 7 or higher, suggesting that a palliative care consultation was warranted. The final retrospective chart review identified that 4 palliative consults were implemented during that time of the 31 patients who were admitted over the three month time frame. Conclusion: Educating nurses and implementing a palliative care screening upon admission can be of great value in providing early identification of patients who might benefit from palliative care. Recommendations – It is recommended that this screening tool should be used to help identify the patents of whom would benefit from a palliative care consult, and nurses would be able to initiated a palliative care consultation themselves.

Keywords: palliative care, screening, early, palliative care consult

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Authors: Eunkyo Kang, Jihye Lee, Jiyeon Choo

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Background: Pediatric palliative care has been increasing, and the number of studies has focused on the age at which pediatric patient can be notified their terminal illness, pediatric advanced care planning (ACP) and palliative care. However, there is a lack of research on health professionals’ perception. Aim: We aimed to investigate the perceptions of healthcare professionals about appropriate age disclosing terminal illness, awareness of ACP, and the relationship between ACP knowledge and the preference for palliative care for children. Methods: We administered nationwide questionnaires to 928 physicians from the 12 hospitals and the Korean Medical Association and 1,241 individuals of the general Korean population. We asked about the age at which the pediatric patients could be notified of their terminal illness, by 4 groups; 4 years old or older, 12 years old or older, 15 years old or older, or not. In addition, we surveyed the questionnaires about the knowledge of ACP of the medical staff, the preference of the pediatric hospice palliative care, aggressive treatment, and life-sustaining treatment preference. Results: In the appropriate age disclosing terminal illness, there were more respondents in the physicians than in the general population who thought that it was possible even at a younger age. Palliative care preference in pediatric patients who were expected to expire within months was higher when health care professionals had knowledge of ACPs compared to those without knowledge. The same results were obtained when deaths were expected within weeks or days. The age of the terminal status notification, the health care professionals who thought to be available at a lower age have a higher preference for palliative care and has less preference for aggressive treatment and life-sustaining treatment. Conclusion: Despite the importance of pediatric palliative care, our study confirmed that there is a difference in the preference of the health care professionals for pediatric palliative care according to the ACP knowledge of the medical staff or the appropriate age disclosing terminal illness. Future research should focus on strategies for inducing changes in perceptions of health care professionals and identifying other obstacles for the pediatric palliative care.

Keywords: pediatric palliative care, disclosing terminal illness, palliative care, advanced care planning

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Authors: Tuleshova Gulnara, Abduldayeva Aigul

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The goal is based on the studying the prevalence of micronutrient deficiencies among children and women of reproductive age to develop evidence-based recommendations aimed at improving the effectiveness of programs to prevent micronutrient deficiency. Subject: In our study we used a representative, random sample, carried out with the cluster method in the precinct of the principle areas of medical care for children 5 years of old. If the site has at least 60 children under 5 years of old, each second child was sampled, and if more than 60 children - each third child (first child selected by random sampling). The total number of investigated persons was within 80-86 women of reproductive age and children - within 80-92 people. Results: The studies found that the average prevalence of anemia among children aged 6-59 months was 35.2%, with the most susceptible to iron deficiency anemia in infants aged 6-23 months (53.3%). The prevalence of anemia among non-pregnant women was 39.0% among pregnant women - 43.8%. In children, the prevalence of folate deficiency was the highest (27.6%). Among non-pregnant women, frequent prevalence of folic acid deficiency was 37.0%. The prevalence of vitamin A deficiency was higher among children living in Astana (37.4%) compared with the medium-republican level (23.2%).

Keywords: nutrition, pregnant women, micronutrients, macronutrients

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Authors: Siobhan Laird

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Under article 12 of the Convention on the Rights of the Child, which extends human rights in their application to those under the age of 18 years, children must be consulted ‘in all matters affecting the child’. The Office of the Children’s Commissioner for England is responsible for improving the welfare of children and young people by ensuring that their Convention rights are respected and realised and their views taken seriously. In 2014 the Children’s Commissioner engaged a team of researchers at the Centre for Social Work, University of Nottingham to develop and roll out an online survey to gather information from children and young people about their exercise of choice within the public care system. Approximately 3,000 children responded to this survey, which comprised both closed and open-ended questions. SPSS was used to analyse the numerical data and a thematic analysis of textual data was conducted on answers to open-ended questions. Findings revealed that children exercised considerable choice over personal space and their spare time, but had much less choice in relation to contact with their birth families, where they lived, or the timings of moves from one placement into another. The majority of children described how they were supported to express their opinions and believed that these were taken seriously. However, a significant number reported problems and explained how specific behaviours by professionals and carers made it difficult for them to express their opinion or to feel that they had influenced decisions which affected them. In open-ended questions eliciting information about their experiences, children and young people were asked to describe how they could be better supported to make choices and what changes would assist for these to be better acknowledged and acted upon by professionals and carers. This paper concludes by presenting the ideas and suggestions of children and young people for improving the public care system in Britain in relation to their exercise of choice.

Keywords: children, choice, participation, public care

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Authors: Sonia Mannan, M. Jobair Alam

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The concept of palliative care in Bangladesh largely remained limited to the sympathetic caring of patients with a life-limiting illness. Quality of Life (QoL) issues are rarely practiced in Bangladesh. Furthermore, palliative medicine, in the perspective of holistic palliative care service, does not have its proper recognition in Bangladesh. Apart from those socio-medical aspects, palliative care patients face legal issues that impact their quality of life, including access to health services and social benefits and dealing with other life-transactions of the patients and their families (such as disposing of property; planning for children). This paper is an attempt to articulate these legal dimensions of the right to palliative care in the context of Bangladesh. The major focus of this paper will be founded on the doctrinal analysis of the constitutional provisions and other relevant legislation on the right to health and their judicial interpretation, which is argued to offer a meaningful space for the right to palliative care. This paper will also investigate the gaps in the said legal framework to better secure such care. In conclusion, a few recommendations are made so that the palliative care practices in Bangladesh are better aligned with international standards, and it can respond more humanely to the patients who need palliative care.

Keywords: Bangladesh, constitution, legal regime, palliative care, quality of life

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Authors: Eduard Fosch-Villaronga

Abstract:

This paper pioneers Care Robot Impact Assessment (CRIA), a methodology used to identify, analyze, mitigate and eliminate the risks posed by the insertion of non-medical personal care robots (PCR) in medical care facilities. Its precedent instruments (Privacy and Surveillance Impact Assessment (PIA and SIA)) fall behind in coping with robots. Indeed, personal care robots change dramatically how care is delivered. The paper presents a specific risk-sector methodology, identifies which robots are under its scope and presents some of the challenges introduced by these robots.

Keywords: ethics, impact assessment, law, personal care robots

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Authors: Amichai Ben ari, Daniella Margalit

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Medical procedures, such as surgery, may have traumatic significance for some children. This study examines the relationship between maltreatment in children and the development Pediatric Medical Traumatic Stress (PMTS). To this end, differences in the level of distress of children after surgery were examined between two groups: children who were maltreated ("children at risk") and children from the control group ("children who are not at risk"). The study involved 230 parents of children who came to the hospital to undergo surgery. Parents filled out demographic questionnaires to measure socioeconomic variables and psychological questionnaires to measure the distress of the child and parent before surgery. After 6 months from the time of surgery, the parents again filled in the questionnaire measuring the child's distress. The results of the study showed that the level of distress experienced by children at risk after surgery was significantly higher relative to children who are not at risk. It was also found that the level of distress experienced by parents of children at risk in relation to their child’s surgery is significantly higher compared to parents of children who are not at risk. Finally, it was found that the variables: (1) pre-morbid psychological functioning of the child. (2) Parental and family functioning in daily life. (3) Exposure of the child to traumatic events. (4) Support factors for the family. Are variables that predict the development of PMTS in children after surgery, but only for children at risk and not for children who are not at risk. The significance of the findings in relation to the need to identify at-risk populations in the hospitals and the policies derived from them were discussed, and several directions were raised for further research.

Keywords: children at risk, pediatric medical traumatic stress (PMTS), PTSD, medical procedures

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Authors: Lotha Valan, Åsa Hörnsten, Ulf Isaksson

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Introduction: Sweden has a national child health care program (CHCP) where all parents are offered support to raise their children and support them for lifelong health. A systematic review concludes that there is a request for guidance in using the internet effectively for the health purposes of their children. However, a study about internet use among young mothers means that the internet is not always easy to navigate for parents, and they may need support. To fill this gap and develop a digital channel to complement the child health care (CHC) for the support of parents of children within CHC, there is a demand to investigate parents' needs in relation to this purpose. Methods: The study had a qualitative approach using focus group interviews with parents. The interview data were analyzed using qualitative content analysis. Results: The main theme highlights that parents expected that a digital support channel would be something that might strengthen them toward independence concerning the care of their children in a positive way. However, they also felt that they needed personal support and that relationships with other parents and the child health care nurse were significant and meaningful. Another parental desire that emerged was that a future digital channel would facilitate and simplify access to care, and they suggested having both planned and urgent times available for parents to book. The digital channel was expected to make this possible and be a good complement to the physical contacts the traditional child healthcare currently offers. Discussion/conclusions: The parents in this study believed that digital solutions could increase their parental power in relation to the care of their children. Examples were given as nurse-led parent groups where parents with similar problems and experiences around their children could support each other and were expected to strengthen them over time. The parents stressed that a planned digital support channel also needs satisfactory solutions for both contact and response. It was suggested that there should be bookable times for both planned and urgent needs and also the possibility of rescheduling visits.

Keywords: child healthcare, parents, digital support, nursing

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Authors: Abhishek Oswal

Abstract:

Background: Inconsistencies between the guidelines for childhood asthma can pose a diagnostic challenge to clinicians. NICE guidelines are the most commonly followed guidelines in primary care in the UK; they state that to be diagnosed with asthma, a child must be more than 5 years old and must have objective evidence of the disease. When diagnoses are coded in general practice (GP), these guidelines may be superseded by communications from secondary care. Hence it is imperative that diagnoses are correct, as per up to date guidelines and evidence, as this affects follow up and management both in primary and secondary care. Methods: A snapshot audit at a general practice surgery was undertaken of children (less than 16 years old) with a coded diagnosis of 'asthma', to review the age at diagnosis and whether any objective evidence of asthma was documented at diagnosis. 50 cases of asthma in children presenting to the emergency department (ED) were then audited to review the age at presentation, whether there was evidence of previous asthma diagnosis and whether the patient was discharged from ED. A repeat audit is planned in ED this winter. Results: In a GP surgery, there were 83 coded cases of asthma in children. 51 children (61%) were diagnosed under 5, with 9 children (11%) who had objective evidence of asthma documented at diagnosis. In ED, 50 cases were collected, of which 4 were excluded as they were referred to the other services, or for incorrect coding. Of the 46 remaining, 27 diagnoses confirmed to NICE guidelines (59%). 33 children (72%) were discharged from ED. Discussion: The most likely reason for the apparent low rate of a correct diagnosis is the significant challenge of obtaining objective evidence of asthma in children. There were a number of patients who were diagnosed from secondary care services and then coded as 'asthma' in GP, without having objective documented evidence. The electronic patient record (EPR) system used in our emergency department (ED) did not allow coding of 'suspected diagnosis' or of 'viral induced wheeze'. This may have led to incorrect diagnoses coded in primary care, of children who had no confirmed diagnosis of asthma. We look forward to the re-audit, as the EPR system has been updated to allow suspected diagnoses. In contrast to the NICE guidelines used here, British Thoracic Society (BTS) guidelines allow for a trial of treatment and subsequent confirmation of diagnosis without objective evidence. It is possible that some of the cases which have been classified as incorrect in this audit may still meet other guidelines. Conclusion: The diagnosis of asthma in children is challenging. Incorrect diagnoses may be related to clinical pressures and the provision of services to allow compliance with NICE guidelines. Consensus statements between the various groups would also aid the decision-making process and diagnostic dilemmas that clinicians face, to allow more consistent care of the patient.

Keywords: asthma, diagnosis, primary care, emergency department, guidelines, audit

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