Search results for: children with complex medical care needs

Authors: Hestiasari Rante, Leonardo De Araújo, Heidi Schelhowe

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Usability testing with children is similar in many aspects to usability testing with adults. However, there are a few differences that one needs to be aware of in order to get the most out of the sessions, and to ensure that children are comfortable and enjoying the process. This paper presents the need to acquire methodological knowledge for involving children as test users in usability testing, with consideration on Piaget’s theory of cognitive growth. As a case study, we use BatiKids, an application developed to evoke children’s enthusiasm to be involved in culture heritage preservation. The usability test was applied to 24 children from 9 to 10 years old. The children were divided into two groups; one interacted with the application through a graphic tablet with pen, and the other through touch screen. Both of the groups had to accomplish the same amount of tasks. In the end, children were asked to give feedback. The results suggested that children who interacted using the graphic tablet with pen had more difficulties rather than children who interacted through touch screen. However, the difficulty brought by the graphic tablet with pen is an important learning objective in order to understand the difficulties of using canting, which is an important part of batik.

Keywords: batikids, children, child-computer interaction, usability test

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Authors: Ohoud Abdullatif Alshaiji

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Child-rearing is considered as the most important family role and with the modern lifestyle and busy families social institutions has taken this role from the family to encourage the individuals active's role in the social life, this study aimed to acknowledge the contributions of the social institutions in child-rearing the Saudi children and to acknowledge The Role of the community's partnership in activating the social child-rearing for the Saudi children. The research main question was how much the community's partnership is actually participating in activating the process of the social development of the Saudi children. The importance of this study comes from the massive care that has been given from all over the world, children international organizations, and this research is focusing on the participating of five social organization in child-rearing the Saudi children. The study was limited on the mothers of the children who are enrolled in the government's kindergarten the tool that has been used was the Questionnaire, using the descriptive and analytical approach. The important role of the family in encouraging the social development for the Saudi child, and the results has shown the importance of the mosque in encouraging the good social behaviors. And the kindergarten role has shown after the mosque because of the changes that made most of the families relying on the educational institutions to help the child to adapt in a different cultures. To spread the community's partnership in all the social actions, to support and encourage the role of community's partnership in activating the process of the social development of the Saudi children, to minimize the difficulties and the provide the need to fully support the community's partnership.

Keywords: child-rearing, social development, acknowledge the contributions

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Authors: Md Shohidul Islam, Jongmyon Kim, Ui-pil Chong

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Medical image is an integral part of e-health care and e-diagnosis system. Medical image watermarking is widely used to protect patients’ information from malicious alteration and manipulation. The watermarked medical images are transmitted over the internet among patients, primary and referred physicians. The images are highly prone to corruption in the wireless transmission medium due to various noises, deflection, and refractions. Distortion in the received images leads to faulty watermark detection and inappropriate disease diagnosis. To address the issue, this paper utilizes error correction code (ECC) with (8, 4) Hamming code in an existing watermarking system. In addition, we implement the high complex ECC on a graphics processing units (GPU) to accelerate and support real-time requirement. Experimental results show that GPU achieves considerable speedup over the sequential CPU implementation, while maintaining 100% ECC efficiency.

Keywords: medical image watermarking, e-health system, error correction, Hamming code, GPU

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Authors: Sarah E. Casey

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Epilepsy is the most common neurological disorder in children and approximately one-third of children with epilepsy have seizures that are uncontrolled on anticonvulsants alone. Cannabidiol is shown to be an effective treatment at reducing the amount of breakthrough seizures experienced by children with drug resistant epilepsy. Improvements in quality of life and overall condition were noted during cannabidiol treatment. Adverse side effects were experienced and were generally mild to moderate in nature. Additional double-blind, controlled studies with a more diverse sample population and standardized dosing are needed to ensure the efficacy and safety of cannabidiol use in children with drug resistant epilepsy.

Keywords: cannabis, drug resistant epilepsy, children, epilepsy

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Authors: Sharmistha Mukherjee

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Health care is the basic requirement for all. The prime question is who gets what, where and how? The unequal distribution of basic facilities do have a adverse effect on the users. The paper tries to examine health care in terms of available facilities, the health care need and how people perceive to it in a small town of Jalpaiguri in the midst of tea gardens in North Bengal. The morbidity pattern is also minutely observed with a section describing the organizational structure of health care keeping in mind the utilization.

Keywords: availability, distribution, health care, utilization

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Authors: Chick Loveline Ayoh Epse Ndi

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Our cultural stance has deep implications for the psychological and physical well-being of the old. Cameroon is still rooted on the traditional belief that stipulates that; the aged are best catered for in the family setting where the children and grandchildren are supposed to give in return for services invested on them by the former. This is why up till date, there are no “Rest Homes” or “Convalescent hospitals” despite the rising challenges faced by the aged in this context. Beside the special measure set aside to cater for the aged, such as “Rest Homes” for the healthy, “Convalescent hospitals” are created set to cater for the health of the aged in the Western context with other facilities such as geriatric units. The health care practitioners are aware of aging diseases and have trained human resources like Gerontologists to cater for the aged and aging diseases. Meanwhile, in Africa and Cameroon in particular, such infrastructural and human resources are still to be considered in the health care system. It can be assumed that the aged and aging diseases are still to be considered in the health care system in this context. This is why we talk of therapeutic nihilism, where the aged are mixed up with other categories of patients with no special attention given to them. This qualitative study carried out in the Yaounde, the capital city of Cameroon, with their best referent hospitals, reveal that; the aged and aging diseases are still a myth in this context. Data collected in both private and public health institutions show that there is only one public institution in Cameroon that has a geriatric unit with no specialists. Patients who aretreated in this unit are considered as aged with terminal diseases that need palliative care and not intensive care. Cameroon is still lacking in terms of health care to the aged and ageing diseases. Like other patients, the aged are treated with a lot of laxity and no value. There is an emergency to create special health care units for geriatrics and and train gerontologist. Mentally or physically ill aged faced medical rational with psychodynamic treatment considered as waste of time. The aged are less likely to be regarded salvageable when they enter a hospital in serious conditions due to the lack of specialists and geriatric units for them. The implication of this study is to sensitization the stake holders for an urgent need to extend special care units for the aged and aging diseases in this context.

Keywords: challeng, therapy, agtng, diseases cameroon

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Authors: Iman I. Salama, Samia M. Sami, Somaia I. Salama, Zeinab N. Said, Thanaa M. Rabah, Aida M. Abdel-Mohsin

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This is a national community-based project to evaluate the effectiveness of HBV vaccination program in prevention of infection. HBV markers were tested in the sera of 3600 vaccinated children. Infected children were followed up for 1 year. Prevalence of HBV infection was 0.39 % (0.28% positive for anti-HBc, 0.03% positive for HBsAg and 0.08% positive for both). One year later, 50% of positive anti-HBc children turned negative with sustained positivity for positive HBsAg cases. HBV infection was significantly higher at age above 9 years (0.6%) compared to 0.2% at age 3-9 years and 0% at younger age (P < 0.05). Logistic analysis revealed that predictors for HBV infection were history of blood transfusion, regular medical injection, and family history of either HBV infection or drug abuse (adjusted odds ratios 6.2, 5.6, 7.6 & 19.1 respectively). HBV vaccination program produced adequate protection. Adherence to infection control measures and safe blood transfusion are recommended.

Keywords: HBV infection, HBV vaccine, children, Egypt

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Authors: C. Treadgold, S. Sivaraman

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The Starlight Children's Foundation (Starlight) is an Australian non-profit organisation that delivers programs, in partnership with health professionals, to support children, adolescents, and their families who are living with a serious illness. While supporting children and adolescents with life-limiting conditions has always been a feature of Starlight's work, providing a dedicated program, specifically targeting and meeting the needs of the paediatric palliative population, is a recent area of focus. Recognising the challenges in providing children’s palliative services, Starlight initiated a research and development project to better understand and meet the needs of this group. The aim was to create a program which enhances the wellbeing of children, adolescents, and their families receiving paediatric palliative care in their community through the provision of on-going, tailored, positive experiences or 'moments'. This paper will present the results of the formative evaluation of this unique program, highlighting the development processes and outcomes of the pilot. The pilot was designed using an innovation methodology, which included a number of research components. There was a strong belief that it needed to be delivered in partnership with a dedicated palliative care team, helping to ensure the best interests of the family were always represented. This resulted in Starlight collaborating with both the Victorian Paediatric Palliative Care Program (VPPCP) at the Royal Children's Hospital, Melbourne, and the Sydney Children's Hospital Network (SCHN) to pilot the 'Moments' program. As experts in 'positive disruption', with a long history of collaborating with health professionals, Starlight was well placed to deliver a program which helps children, adolescents, and their families to experience moments of joy, connection and achieve their own sense of accomplishment. Building on Starlight’s evidence-based approach and experience in creative service delivery, the program aims to use the power of 'positive disruption' to brighten the lives of this group and create important memories. The clinical and Starlight team members collaborate to ensure that the child and family are at the centre of the program. The design of each experience is specific to their needs and ensures the creation of positive memories and family connection. It aims for each moment to enhance quality of life. The partnership with the VPPCP and SCHN has allowed the program to reach families across metropolitan and regional locations. In late 2019 a formative evaluation of the pilot was conducted utilising both quantitative and qualitative methodologies to document both the delivery and outcomes of the program. Central to the evaluation was the interviews conducted with both clinical teams and families in order to gain a comprehensive understanding of the impact of and satisfaction with the program. The findings, which will be shared in this presentation, provide practical insight into the delivery of the program, the key elements for its success with families, and areas which could benefit from additional research and focus. It will use stories and case studies from the pilot to highlight the impact of the program and discuss what opportunities, challenges, and learnings emerged.

Keywords: children, families, memory making, pediatric palliative care, support

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Authors: Varsha Reddy Jayar

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Background: Our elderly family members deserve our best care. It's our responsibility to ensure they're healthy and safe. The population of India is increasing rapidly. People are literally being born in the streets, and there is a high growth on taxes and healthcare costs. Indian families are challenged with taking care of everyone. When you have elderly parents and a demanding job, it can be difficult to take care of them. You might not have enough time to care for them when you're already working or dealing with emotional difficulties. Living alone in old age can cause older individuals to face many health risks. Many seniors find living and caring for themselves challenging when they live by themselves. This study explored the factors that affect whether or not elderly people choose to live in old age homes. Methods: This study was carried out on 123 elderly people living in different old age homes in Karnataka, India. The reason for their residence at the home was explored using an interview. Results: It was found that the most common reason for living in an old age home is due to abuse from children and grandchildren; the majority reported were Daughter in law issues in the family specific to the adjustment and understanding amongst them. Conclusion: More and more elderly people in India are choosing to stay in old age homes as they get older. The government and voluntary agencies must have some sort of arrangements for institutional support.

Keywords: old age home, elderly, Aging, challenges of aging

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Authors: Alexandra Telitsyna, Galina Semya, Elvira Garifulina

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Introduction: Starting from 2012 Russia conducts deinstitutionalization policy and now the main indicator of success is the number of children living in institutions. Active family placement process has resulted in residents of the institution now mainly consists of adolescents with behavioral and emotional problems, children with disabilities and groups of siblings. Purpose of science research: The purpose of science research is to identify factors for child’s wellbeing while temporary stay in an orphanage and the subjective assessment of children's level of well-being (psychological well-being). Methods: The data used for this project was collected by the questionnaire of 72 indicators, a tool for monitoring the behavior of children and caregivers, an additional questionnaire for children; well-being assessment questionnaire containing 10 scales for three age groups from preschool to older adolescents. In 2016-2018, the research was conducted in 1873 institution in 85 regions of Russia. In each region a team of academics, specialists from Non-profits, independent experts was created. Training was conducted for team members through a series of webinars prior to undertaking the assessment. The results: To ensure the well-being of the children, the following conditions are necessary: 1- Life of children in institution is organised according to the principles of family care (including the creation of conditions for attachment to be formed); 2- Contribution to find family-based placement for children (including reintegration into the primary family); 3- Work with parents of children, who are placed in an organization at the request of parents; 4- Children attend schools according to their needs; 5- Training of staff and volunteers; 6- Special environment and services for children with special needs and children with disabilities; 7- Cooperation with NGOs; 8 - Openness and accessibility of the organization. Conclusion: A study of the psychological well-being of children showed that the most emotionally stressful for children were questions about the presence and frequency of contact with relatives, and the level of well-being is higher in the presence of a trusted adult and respect for rights. The greatest contribution to the trouble is made by the time the child is in the orphanage, the lack of contact with parents and relatives, the uncertainty of the future.

Keywords: identifying factors, orphans, Russia, wellbeing

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Authors: Asma Inge-Hanif, Ayyub Ansari Hanif

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The impact of conflicts, the subsequent refugee migration to America and their attempted use of societal resources implicate the lack of further humanitarian aid as a consequence of the abrupt decrease in services and policy changes stemming from new governmental mandates and Executive Orders. Statistical research data indicates a substantial decline in access to standardized health services by refugee women creating a significant alteration in the management of their maternal health care in America, previously shown to result in decreased mortality and morbidity. Studying nursing at Howard University in Washington, D.C., observed doctors were not always sensitive to the needs and modesty concerns of immigrant Muslim women - often unintentionally. Among health care professionals, the prevailing belief should be that every man, woman and child has the right to quality care in a dignified manner and the achievement of optimal health and well-being, regardless of race, creed, socio-economic level or status. In 1987 Muslimat Al Nisaa Health and Social Services Center was established to care for underserved and uninsured women and children. This Center, plus the subsequent shelter, provided direct access to those homeless, refugees, human trafficking and women victims of domestic violence was established and provides the data for this study. Understanding specific culture, social, economic and religious nuances respects their diversity and addressing their basic human needs that they achieve optimal success. The ultimate goal being to facilitate the rescue and housing of those whom escaped from a country/communities where girls are devalued, brought, sold and abused.

Keywords: women, refugee, domestic violence, health care

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Authors: Asma Khalid

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Children’s drawings are unique as children are. Children manifest their happiness, sadness, future dreams, likes, dislikes through drawings. Research with children aged 8-12 was conducted in 2017 in which it was asked to them ‘what they think about child-friendly cities?’ The focus was to get ideas from children about the cities in which they live and what they want in their cities. The research was conducted in different private schools. Children were accessed through teachers and principals of the schools (the gatekeepers). Consent forms were developed for children which contained information about the research project and their consent was taken on paper. It was ensured that children are not forced to take part in the research and they can leave the research whenever they want, without informing anyone. The qualitative participatory approach was taken where children were given papers and colors to draw their ideas. During the research, it was found that children are interested in showing their emotions and liking through drawing as this medium seems easy and comfortable to them as compared to have the individual face to face interviews or participate in surveys. However, the clarity of the ideas presented in the drawings was discussed at length with children in their school’s premises. Results of the research show that children like to live in clean, green places which are also safe for them. Furthermore, they want to live with their families and want to have recreational activities including parks in their nearby vicinity.

Keywords: qualitative participative research clean, children, drawing, clean, green and protected place, family

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Authors: Chen-Ya Juan

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In recent years, the increasing number of children with special needs has brought a lot of attention by many scholars and experts in education, which enforced the preschool teachers face the harsh challenge in the classroom. To protect the right of equal education for all children, enhance the quality of children learning, and take care of the needs of children with special needs, the special education paraprofessional becomes one of the future employment trends for students of the department of the early childhood care and education. Problem-based learning is a problem-oriented instruction, which is different from traditional instruction. The instructor first designed an ambiguous problem direction, following the basic knowledge of early intervention, students had to find clues to solve the problem defined by themselves. In the class, the total instruction included 20 hours, two hours per week. The primary purpose of this paper is to investigate the relationship of student academic scores, self-awareness, learning motivation, learning attitudes, and early intervention knowledge. A total of 105 college students participated in this study and 97 questionnaires were effective. The effective response rate was 90%. The student participants included 95 females and two males. The average age of the participants was 19 years old. The questionnaires included 125 questions divided into four major dimensions: (1) Self-awareness, (2) learning motivation, (3) learning attitudes, and (4) early intervention knowledge. The results indicated (1) the scores of self-awareness were 58%; the scores of the learning motivations was 64.9%; the scores of the learning attitudes was 55.3%. (2) After the instruction, the early intervention knowledge has been increased to 64.2% from 38.4%. (3) Student’s academic performance has positive relationship with self-awareness (p < 0.05; R = 0.506), learning motivation (p < 0.05; R = 0.487), learning attitudes (p < 0.05; R = 0.527). The results implied that although students had gained early intervention knowledge by using PBL instruction, students had medium scores on self-awareness and learning attitudes, medium high in learning motivations.

Keywords: college students, children with special needs, problem-based learning, learning motivation

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Authors: Asm Habibullah Choudhury

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Background: This study is an investigation into medical care, ethics, and human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) in the context of Bangladesh. The low prevalence of HIV and high prevalence of STDs in Bangladesh, in common with the global experience of HIV epidemics, has been characterized by tremendous stigmatization of those affected. Stigmatization has resulted in an extraordinary degree of unjust discrimination and in numerous human rights violations of PLWHA. Methodology: This will be a cross-sectional descriptive study and will be conducted at different points of Bangladesh. Result: PLWHA will be identified as many as possible and will be interviewed. Medical care providers will be interviewed to assess their attitude and will be observed for stigma while providing medical services. Some of the religious leaders, local influential people will be interviewed to assess their attitude towards PLWHA. Conclusion: If effective responses to HIV/AIDS-related stigma and discrimination are to be promoted in the region, work has to occur simultaneously on several fronts: Legal challenge, where necessary, to bring to account governments, employers, institutions and individuals. To create enabling environment in which PLWHA and their families, women, boys, and girls are able to access prevention and care services. Access to quality and comprehensive care. The fundamental objective, however, is to strive for action based on this understanding—action that will promote egalitarian and gender-progressive role models, and that will help guide the manner in which we interact with one another.

Keywords: HIV, AIDS, Bangladesh, human rights

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Authors: Fuming Yang, Telma Sousa Almeida, Xinyu Li, Yunxi Deng, Heying Zhang, Michael E. Lamb

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Twenty-seven children aged 6-15 years with autism spectrum disorder (ASD) and 32 typically developing children were questioned about their participation in a set of activities after a two-week delay and again after a two-month delay, using a best-practice interview protocol. This paper assessed the narrative coherence of children’s reports based on key story grammar elements and temporal features included in their accounts of the event. Results indicated that, over time, both children with ASD and typically developing (TD) children decreased their narrative coherence. Children with ASD were no different from TD peers with regards to story length and syntactic complexity. However, they showed significantly less coherence than TD children. They were less likely to use the gist of the story to organize their narrative coherence. Interviewer prompts influenced children’s narrative coherence. The findings indicated that children with ASD could provide meaningful and reliable testimony about an event they personally experienced, but the narrative coherence of their reports deteriorates over time and is affected by interviewer prompts.

Keywords: autism spectrum disorders, delay, eyewitness testimony, narrative coherence

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Authors: Chao Fang

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Due to the Confucian emphasis on filial piety and an undeveloped social welfare system in mainland China, adult children are both socially and legally obliged to care for their parents, including financial assistance and physical care as well as emotional and social support. Thus a family-centred care pattern for elderly people has been firmly established in China. However, because of the nationwide ‘One Child Policy’, over one million parents are excluded from such care because of the death of their only child and, therefore, their primary caregiver. Without their child’s support, these parents must manage the day to day challenges of growing old alone, with little support from society. By overturning established expectations of a ‘good’ elderly life, the loss of an only child may be accompanied by social and self-stigmatization, pushing these bereaved parents to the margin of society and threatening their economic, physical, emotional and social well-being. More importantly, since the One Child Policy was implemented from the late 1970s and early 1980s, the first generation of bereaved or ‘Shidu’ parents has reached an age at which those parents need elderly care. However, their predicament has been largely ignored. This paper reports on a qualitative interview study that found elderly care to be the main concern for Shidu parents’ everyday life. The paper identifies and discusses the concerns these bereaved parents raised about the prospect of having nowhere to turn at a time of increased need for financial, physical, social and emotional support in old age. The paper also identifies how Shidu parents have been coming together in grief and negotiate to make their predicament known to the government and wider society and to re-define their elderly life by rebuilding a sense of ‘family’.

Keywords: culture, bereavement, China, elderly care

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Authors: Stella Laletas, Andrea Reupert, Melinda Goodyear, Bradley Morgan

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Background: Many people with a mental illness have young children. Research has shown that early childhood is a particularly vulnerable time for children whose parents have a mental illness. Moreover, repeated research has demonstrated the effectiveness of a multiagency approach to family focused practice for improving parental functioning and preventing adverse outcomes in children whose parents have a mental illness, particularly in the early years of a child’s life. However, there is a paucity of professional development resources for professionals who work with families where a parent has a mental illness and has young children. Significance of the study: This study will make a contribution to addressing knowledge gaps around resource development and workforce needs for early childhood and mental health professionals working with young children where a parent has a mental illness. Objective: This presentation describes a newly developed resource, 'Pathways of Care', specifically designed for early childhood educators and mental health workers, alongside pilot evaluation data regarding its effectiveness. ‘Pathways of Care’ aims to promote collaborative practice and present early identification and referral processes for workers in this sector. The resource was developed by the Children of Parents with a Mental Illness (COPMI) National Initiative which is funded by the Australian Government. Method: Using a mixed method design, the effectiveness of the training resource is also presented. Fifteen workers completed the Family Focus Mental Health Practice Questionnaire pre and post using the resource, to measure confidence and practice change; semi-structured interviews were also conducted with eight of these same workers to further explore the utility of the resource. Findings: The findings indicated the resource was effective in increasing knowledge and confidence, particularly for new and/or inexperienced staff. Examples of how the resource was used in practice by various professions emerged from the interview data. Conclusions: Collaborative practice, early identification and intervention in early childhood can potentially play a key role in altering the life trajectory of children who are at risk. This information has important implications for workforce development and staff training in both the early childhood and mental health sectors. Implications for policy and future research are discussed.

Keywords: parents with mental ilnesses, early intervention, evaluation, preschool children

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Authors: Lisa Wilderink, Ingrid Bakker, Albertine J. Schuit, Jacob C. Seidell, Carry M. Renders

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To ensure that health behavior interventions for children living in low socioeconomic position (SEP) neighborhoods are in line with children’s wishes and needs, participation of the children in the development, implementation, and evaluation is crucial. In this paper, we show how children living in three low-SEP neighborhoods in the Netherlands can be involved in Participatory Action Research (PAR) and what influences this participation process. The Photovoice method was used and provided comprehensive information from the children’s perspectives. With the help of the community workers, the children identified feasible actions. This paper shows that it is possible to involve children from low SEP neighborhoods in a meaningful way. We found that it is important to constantly discuss the process with participants, start with a concrete question or problem and adapt the project to the local context and skills of participants

Keywords: children, healthy behavior, participatory action research, socioeconomic health inequalities

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Authors: Adi Sharabi, Dafna Marom-Golan

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Parents’ involvement in the care of their children with Autism Spectrum Disorder (ASD) and its beneficial effect on the children’s developmental and educational outcomes is well documented. At the same time, parents of children with ASD tend to experience greater psychological distress than parents of children with other developmental disabilities or with typical development. Positive social support is an important resource used by parents to reduce their psychological distress. The goal of the current research was to examine the contribution of formal and informal social support in explaining mothers’ and fathers’ involvement with their young children with ASD. The sample consisted of 107 parents who live in Israel (61 mothers and 46 fathers) of children aged between 2 and 7, all diagnosed with ASD and attending special kindergartens or special day care for children with ASD. Parental involvement and social support perception were assessed. Initial analysis focused on the relations between involvement, support, and demographic variables. In addition, analysis of variance (ANOVA) was conducted to test differences between mothers and fathers. Two hierarchical multiple regression analyses were performed to examine the predicted factors in the involvement model while controlling for group (mothers/fathers). Results indicate that mothers reported significantly higher levels of parenting involvement than fathers. Mothers reported higher levels of general involvement and all sub-types of involvement. For example, mothers reported that they were more interested in and have higher levels of attendance in their child’s educational program. They were also more collaborative in their child’s educational therapeutic program, and socialized with other parents of children from their child’s kindergarten than fathers. Mothers’ involvement was found to be related to their informal support (non-formal relatives). Findings also reveal significant differences between mothers and fathers on the formal support subscale measure of specializes services. Fathers, more than mothers, reported more specializes services support such as social workers or professional therapists. Separate hierarchical multiple regression analyses revealed a unique gender difference in the factors that explained parental involvement. Specifically, informal support only had a unique positive contribution in explaining mothers’, but not fathers’ involvement. This study highlights the central role of mothers in maintaining constant contact with the educational system and the professionals who help care for their child with ASD. At the same time, this research emphasizes the crucial role of both mothers and fathers in their child's development and well-being at every development stage, particularly in early development. Further, different kinds of social support seem to relate to the different kinds of parental involvement. It is in the best interest of educators and family therapists who work with families with children with ASD to support the cohesiveness of the family and the collaboration of the parents by understanding and respecting the way each member addresses the responsibilities of parenting a child with ASD, and her or his need for different types of social support.

Keywords: parental differences, parental involvement, social support, specialized support services

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Authors: Chan Hui-Ya, Ding Shin-Tan

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Background and Aim: The discharge planning is considered helpful to reduce the hospital length of stay and readmission rate, and then increased satisfaction with healthcare for patients and professionals. In order to decrease the waiting time of long-term care and boost the care quality of patients after discharge from the hospital, the Ministry of Health and Welfare department in Taiwan initiates a program “discharge planning connects with long-term care 2.0 services” in 2017. The purpose of this study is to investigate the outcome of the pilot of this program in a medical center. Methods: By purpose sampling, the study chose five wards in a medical center as pilot units. The researchers compared the beds of service, the numbers of cases which were transferred to the long-term care center and transferred rates per month between the pilot units and the other units, and analyze the basic data, the long-term care service needs and the approval service items of cases transfer to the long-term care center in pilot units. Results: From June to September 2017, a total of 92 referrals were made, and 51 patients were enrolled into the pilot program. There is a significant difference of transferring rate between the pilot units and the other units (χ = 702.6683, p < 0.001). Only 20 cases (39.2% success rate) were approved to accept the parts of service items of long-term care in the pilot units. The most approval item was respite care service (n = 13; 65%), while it was third at needs ranking of service lists during linking services process. Among the reasons of patients who cancelled the request, 38.71% reasons were related to the services which could not match the patients’ needs and expectation. Conclusion: The results indicate there is a requirement to modify the long-term care services to fit the needs of cases. The researchers suggest estimating the potential cases by screening data from hospital informatics systems and to hire more case manager according the service time of potential cases. Meanwhile, the strategies shortened the assessment scale and authorized hospital case managers to approve some items of long-term care should be considered.

Keywords: discharge planning, long-term care, case manager, patient care

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Authors: J. Van der Walt, N. A. Plastow, M. Unger

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Gross and fine motor skill difficulties among children affect their ability to learn and progress in school. Research indicates that children in low socio-economic areas are at a higher risk of motor skill difficulties, while therapy resources are limited. The Hopscotch motor skill programme is a well-researched accessible in-school intervention developed by occupational and physiotherapists through complex intervention development. The development stage of the complex intervention development model firstly included a prevalence study in a low-resourced area in the West Coast of South Africa, indicating a high prevalence with significant motor skill difficulties among pre-school children at 14.5% with fine motor skill difficulties at 24.6%. A scoping review identifies motor skill interventions for pre-school children and a proposed a framework of fundamental concepts to consider when developing a motor skill intervention. a Delphi-study considered the framework and encouraged collaboration between therapists and educators to make the programme accessible, resource and cost effective, specifically geared towards a rural, low resourced area. The results from the Delphi study, together with the proposed framework from the scoping review was used to develop the Hopscotch programme, adopting a task-shifting approach. The eight-week small-group programme is facilitated by teachers with the support of therapists. The programme aims to improve the motor skills of pre-school aged children with motor skill difficulties to promote academic readiness through obstacle courses, ball skill games and fine motor games and crafts. A randomised controlled trial is planned as a next stage to determine the preliminary effect of the programme on the motor and early academic skills of pre-school children.

Keywords: accesible learning, motor skill intervention, school readiness, task shifting

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Authors: Shyamani Hettiarachchi

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The experiences of children with disabilities and their siblings are seldom documented in Sri Lanka. The aim of this study was to uncover the narratives of young children with disabilities and their siblings in Sri Lanka. Fifteen children with disabilities and fifteen siblings were included in this study. Opportunities were offered to the participants to engage in artwork and story making activities. Narratives on the artwork and stories were gathered and the data analyzed using the key principles of Framework Analysis to determine the key themes. The key themes to emerge were of love, protectiveness, insecurity and visibility. The results highlight the need to take account of the experiences of children with disabilities and their siblings to understand how they understand and cope with disability.

Keywords: art, children with disabilities, narratives, siblings, storymaking

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Authors: Mansoureh Karimollahi, Mehriar Adrmohammadi, Mohsen Mohammadi

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Introduction: Patient satisfaction with nursing care is considered as an important indicator of the quality and effectiveness of the health care system, and improving the quality of care is not possible without paying attention to the opinions and expectations of patients. Considering that the scales for assessing satisfaction with nursing care in our country are not comprehensive and measure very few areas, therefore, in this study, psychometrically, the Persian version of the Newcastle Nursing Care Satisfaction Scale was used in patients hospitalized in the wards. Internal medicine and general surgery were discussed. Methods: This cross-sectional study was conducted on 200 patients admitted to the surgery and internal departments of hospitals affiliated to Ardabil University of Medical Sciences. The Newcastle nursing care satisfaction scale was used for the first time in Iran in comparison with the good nursing care scale from the patients' point of view to evaluate the criterion validity. The Newcastle nursing care satisfaction scale was used after translation, validity, and reliability. Results: The level of satisfaction of patients and the experience of patients with nursing care was at a favorable level, respectively, with an average of 111.8 ± 14.2 and 69.07 ± 14.8. Total CVI was estimated at 0.96 for the experience section, 0.95 for the satisfaction section, and 0.96 for the whole scale. The index (CVR) was also 0.95 for the experience section, 0.95 for the satisfaction section, and 0.95 for the whole scale. Criterion validity was also estimated using 0.725 correlation. The validity of the construct was also confirmed using the goodness of fit index (X2=1932/05, p=0.013, KMO=0.913). Convergent validity was estimated at 0.99 in the experience subscale and 0.98 in the satisfaction subscale. . The overall reliability in the experience subscale and satisfaction subscale was 94%, 92%, and 98%, respectively, which indicated the acceptable reliability of the questionnaire. Conclusion: The Persian version of the Newcastle nursing care satisfaction scale as a comprehensive tool that can be easily completed by patients and is easy to interpret, has good validity and reliability and can be used in patient care centers, in departments Surgery, and internal medicine are recommended.

Keywords: psychometrics, Newcastle nursing care satisfaction scale, nursing care satisfaction, general surgery department

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Authors: Tsugunosuke Sakai, Haruya Tamaki, Ryuichi Yoshida, Ryohei Egusa, Etsuji Yamaguchi, Shigenori Inagaki, Fusako Kusunoki, Miki Namatame, Masanori Sugimoto, Hiroshi Mizoguchi

Abstract:

We aim to develop a full-body interaction game that could let children cooperate and interact with other children in small groups. As the first step for our aim, the objective of the full-body interaction game developed in this study is to make interaction between children. The game requires two children to jump together with the same timing. We let children experience the game and answer the questionnaires. The children using several strategies to coordinate the timing of their jumps were observed. These included shouting time, watching each other, and jumping in a constant rhythm as if they were skipping rope. In this manner, we observed the children playing the game while cooperating with each other. The results of a questionnaire to evaluate the proposed interactive game indicate that the jumping game was a very enjoyable experience in which the participants could immerse themselves. Therefore, the game enabled children to experience cooperation with others by using body movements.

Keywords: children, cooperation, full-body interaction game, kinect sensor

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Authors: Julius Lenaerts, Ahmed Elsaadawy, Mohammed Bashir

Abstract:

Background Sedated and paralyzed patients have an impaired blink reflex leading to ophthalmic complications such as conjunctivitis, epithelial defects, bacterial keratitis, and more. These are entirely preventable complications through regular eye care. Methods Patients at level 3 or above (intubated/paralyzed) care in the Intensive Care Unit (ICU) were reviewed between February and April. Data was pulled from Metavision and adherence was compared to Royal College of Ophthalmology (RCOphth) recommendations[4]. Using a multi-pronged approach through posters, individual teaching sessions and faculty teaching, we aimed to educate staff about eye care in the ICU. Patients were reaudited in the period July to August. Results Out of 40 patients, only 23% were assessed for eye care needs on admission compared to 77% after teaching; eye care was only delivered 59% of the time it was due, compared to 61%; 2.5% of patients had eyedrops prescribed compared to 41%. This shows an overall increase in meeting RCOphth standards. Key messages Eye care is an overlooked aspect of patient care in the ICU, associated with avoidable ocular complications. Healthcare staff need further rigorous education on the provision and importance of eye care to reduce avoidable complications.

Keywords: ICU, eye care, risk, QIP

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Authors: Annika Barzen

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In this article, the collection and analysis of drawings are implemented and discussed as a methodological approach to reconstruct children's perspective on horse-assisted interventions. For this purpose, drawings of three children (8-10 years old) were included in the research process in order to clarify the question of what insights can be derived from the drawings about the child's perspective on the intervention. The children were asked to draw a picture of themselves at the horse stable. Practical implementation considerations are disclosed. The developed analysis steps consider the work of two art historians (Erwin Panofsky and Max Imdahl) to capture the visual sense and to interpret the children's drawings. Relevant topics about the children's perspective can be inferred from the drawings. In the drawings, the following topics are important for the children: Overcoming challenges and fears in handling the horse, support from an adult in handling the horse and feeling self-confident and competent to act after completing tasks with the horse. The drawings show the main topics which are relevant for the children and can be used as a basis for conversation. All in all, the child's drawing offers a useful addition to other survey methods in order to gain further insights into the experiences of children in a horse-assisted setting.

Keywords: children's perspective, interpret children's drawings, equine-assisted-intervention, methodical analysis

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Authors: Laura Lamas Abraira

Abstract:

Large-scale Chinese immigration in Spain emerged in the 80's. Engaged in their own businesses or working for other Chinese migrants with long schedules, young couples had to choose between contracting or transnationalising the care labour as they were unable to combine productive and reproductive tasks. In most cases, they decided to transnationalize the care labour embodied on grandparents or children migratory paths. Either the grandparents go to Spain to take care of their grandchildren or the kids were left behind or sent to China after being born in Spain in order to be raised with their extended family members. Very little is known about how the people who have been raised in a transnational context relates their own experience and agency as care managers within the family care cycle. In order to fill this gap, this paper aims to inquire into these transnationally-reared Chinese young adults’ narratives about their own experience and expectations (past, present and future) by adopting care circulation and care cycle approach within life course framework. Drawing upon a qualitative study resulting from a multi-sited ethnography (Spain-China), we argue that young adults raised in transnational context build their narratives as a result of an otherness process related to their parents and an essentialization of their Chinese roots to use selectively among different contexts. In doing so, these family narratives constitute a part of their social identity that interact with other dimensions such as the ethnic one. We suggest when building their parent's otherness they also build their sameness among pairs, as members of the same club, marked by transnational care on a double time basis: the practices of their parents as wrong past, and their own as an amendable future.

Keywords: Chinese families, narratives, transnational care, young adults

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Authors: Poonam Goswami

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Background: The diagnosis of a serious illness like cancer can have an impact on a patient’s emotional well-being and may result in psychological symptoms, anxiety, depression, and loss of control. Advance care planning discussions ensure patients’ values and goals of care, including patients’ freedom to choose their place of death, are respected. Unfortunately, these discussions are often delayed and are not initiated early in patients’ cancer trajectory. As a result, patients’ wishes often remains unknown until the last phase of their life. Evidence suggests that many patients inappropriately receive aggressive treatment near the end of life, which does lead to higher resource utilization, decreased quality of life, and increased cost. Additionally, the novel coronavirus disease 2019 (COVID-19) pandemic challenged the health care systems worldwide and raised important ethical issues, especially regarding the potential need for rationing health care in the context of scarce resources and crisis capacity. The importance of goal concordant care is now even substantially important and is heightened in the context of this pandemic. Problem: Although there is growing evidence on the effects of the ACP on the completion of advanced directives, improved patient and family concordance for preferences for medical care, and receipt of care, there is still a lack of standardized ACP conversation strategies for patients with cancer. Methods: The Key concepts of ACP include (1) assessing patient and family readiness, (2) identifying a surrogate decision maker ( medical power of attorney), (3) exploring patient and family understanding of the disease and treatment options,(4) discussing the values and goals of care, and options for end-of-life care, (5) documenting patient preferences in the medical record, and (6) revisiting the discussions at every change in the treatment plan and /or change in clinical status, including at every hospitalization. Conclusion/Implication for practice: Advance Care Planning (ACP) and end-of-life (EOL) discussions are important for patients, families, and health care providers. Adopting the verbal and nonverbal communication strategies can help overcome the barriers to effective communication on these difficult discussions. ACP with goals of care discussions should not be delayed until the patient is hospitalized.

Keywords: advance care planning, end of life, cancer, global, pandemic

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Authors: Lukasz Grzegorz Broda, Taiwo Oseni, Andrew Stranieri, Rodrigo Marino, Ronelle Welton, Mark Yates

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The oral health of residents in aged care centres in Australia is poor, contributing to infections, hospital admissions, and increased suffering. Although the use of electric toothbrushes has been deployed in many centres, smartbrushes that record and transmit information about brushing patterns and duration are not routinely deployed. Yet, the use of smartbrushes for aged care residents promises better oral care. Thus, a study aimed at investigating the appropriateness and suitability of a smartbrush for aged care residents is currently underway. Due to the peculiarity of the aged care setting, the incorporation of smartbrushes into residents’ care does require careful planning and design considerations. This paper describes an initial design process undertaken through the use of an actor to understand the important elements to be incorporated whilst installing a smartbrush for use in aged care settings. The design covers the configuration settings of the brush and app, including ergonomic factors related to brush and smartphone placement. A design science approach led to an installation re-design and a revised protocol for the planned study, the ultimate aim being to design installations to enhance perceived usefulness, ease of use, and attitudes towards the incorporation of smartbrushes for improving oral health care for aged care residents.

Keywords: smartbrush, applied computing, life and medical sciences, health informatics

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Authors: Steven G. Sclan

Abstract:

Background: Since December 2019, the world has been afflicted by the spread of the Severe Acute Respiratory Syndrome-Corona Virus-2 (SARS-CoV-2), which is responsible for the condition referred to as Covid-19. The illness has had a cataclysmic impact on the political, social, economic, and overall well-being of the population of the entire globe. While Covid-19 has had a substantial universal fatality impact, it may have an even greater effect on the socioeconomic, medical well-being, and healthcare planning for remaining societies. Significance: As these numbers illustrate, many more persons survive the infection than die from it, and many of those patients have noted ongoing, persistent symptoms after successfully enduring the acute phase of the illness. Recognition and understanding of these symptoms are crucial for developing and arranging efficacious models of care for all patients (whether or not having been hospitalized) surviving acute covid illness and plagued by post-acute symptoms. Furthermore, regarding Covid infection in children (< 18 y/o), although it may be that Covid “+” children are not major vectors of infective transmission, it now appears that many more children than initially thought are carrying the virus without accompanying obvious symptomatic expression. It seems reasonable to wonder whether viral effects occur in children – those children who are Covid “+” and now asymptomatic – and if, over time, they might also experience similar symptoms. An even more significant question is whether Covid “+” asymptomatic children might manifest increased multiple health problems as they grow – i.e., developmental complications (e.g., physical/medical, metabolic, neurobehavioral, etc.) – in comparison to children who had been consistently Covid “ - ” during the pandemic. Topics Addressed and Theoretical Importance: This review is important because of the description of both quantitative and qualitative methods for clinical and biomedical research. Topics reviewed will consider the importance of well-designed, comprehensive (i.e., quantitative and qualitative methods) longitudinal studies of Post Covid-19 symptoms in both adults and children. Also reviewed will be general characteristics of longitudinal studies and a presentation of a model for a proposed study. Also discussed will be the benefit of longitudinal studies for the development of efficacious interventions and for the establishment of cogent, practical, and efficacious community healthcare service planning for post-acute covid patients. Conclusion: Results of multi-dimensional, longitudinal studies will have important theoretical implications. These studies will help to improve our understanding of the pathophysiology of long COVID and will aid in the identification of potential targets for treatment. Such studies can also provide valuable insights into the long-term impact of COVID-19 on public health and socioeconomics.

Keywords: COVID-19, post-COVID-19, long COVID, longitudinal research, quantitative research, qualitative research

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