Search results for: families with disabilities

Authors: Ibrahim A. Alkali

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There is no reservation on the outstanding contribution of patient families in restoration of hospitalised patients, hence their consideration as essential component of hospital ward regimen. The psychological and emotional support a patient requires has been found to be solely provided by the patient’s family. However, consideration of their presence as one of the major functional requirements of an inpatient setting design have always been a source of disquiet, especially in developing countries where policies, norms and protocols of healthcare administration have no consideration for the patients’ family. This have been a major challenge to the hospital ward facilities, a concern for the hospital administration and patient management. The study therefore is aimed at obtaining a consensus opinion on the best approach for family integration in the design of an inpatient setting.  A one day visioning charrette involving Architects, Nurses, Medical Doctors, Healthcare assistants and representatives from the Patient families was conducted with the aim of arriving at a consensus opinion on practical design approach for sustainable family integration. Patient’s family are found to be decisive character of hospital ward regimen that cannot be undermined. However, several challenges that impede family integration were identified and subsequently a recommendation for an ideal approach. This will serve as a guide to both architects and hospital management in implementing much desired Patient and Family Centred Care.

Keywords: patient's family, inpatient setting, care giving, integration

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Authors: Khaleel Saleh Al-Rababah

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Amyloid fibril forming regions, which are known as protein aggregates, in sequences of some protein families are associated with a number of diseases known as amyloidosis. Mutations play a role in forming fibrils by accelerating the fibril formation process. In this paper we want to extract diseases that caused by those mutations as a result of the impact of the mutations on structural and functional properties of the aggregated protein. We propose a text mining system, to automatically extract mutations, diseases and relations between mutations and diseases. We presented an algorithm based on finite state to cluster mutations found in the same sentence as a sentence could contain different mutation cause different diseases. Also, we presented a co reference algorithm that enables cross-link sentences.

Keywords: amyloid, amyloidosis, co reference, protein, text mining

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Authors: Susan Lanz, Gary T. Burke, Omid Omidvar

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The intention to transfer ownership control across family generations is acknowledged to be central to developing a theoretical understanding of how family businesses differ and are distinct as a business group. However, in practice, most business-owning families face challenges to transfer their business ownership from one family generation to the next. To date, researchers have paid little attention to how and when ownership is passed across family generations and what the dynamics of such transitions are. This is primarily due to the prevailing assumption that ownership transfer is an unimportant and legalistic issue that occurs within a wider family management succession process. Yet, the limited evidence available suggests that family ownership transfer occurs inside and outside of the management succession process and is a difficult process for business-owning families to navigate. As a result, many otherwise viable family businesses are closing, leading to unnecessary loss of jobs and knowledge. This qualitative paper examines how family members understand and navigate the ownership transfer process. This study uses an inductive qualitative research design, conducted through in-depth interviews within eight business-owning families. It draws on family development theory and shows how a wide range of family-related events and dynamics outside of family business involvement underlie and shape the ownership transfer process. The findings extend the theory on how these events trigger ownership transfer and how they shape the ownership meanings held within business-owning families. This study found that ownership transfer meanings extend beyond that of transferring the legal control and financial appropriation rights of shareholders. The study concludes there are three different stages in the process of ownership transfer -symbolic, re-balancing, and protectionist. Each stage creates distinct family social constructions of the rights of family members to hold business ownership, and each stage occurs within a specific family development phase.

Keywords: business-owning family, family development theory, ownership transfer, process

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Authors: Klaudia Muca

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Disability studies as an international movement are still developing, especially in the Central and East European young democratic countries. It is crucial to recognize in what manner this development might lead to create a sustainable social environment. Thanks to disability studies the process of introducing disability studies and its main ideas might become as effective as in the 90s in the USA or other Western countries. In the Central and East Europe lack of activism in favor of the disabled in the early stages of democratic transition (i.e. the 80s and 90s) caused misrepresentation of the disabled and their experience in present political and social sphere of life. People with disabilities were made to hold a minor position in society due to political changes that introduced in fact non-equal democracy. The results of this study indicate that activism in favor of people with disabilities and works of art created by the disabled are tools that influence present disability politics. That suggests that young European democracies need to modify their current political path in order to establish more equal social policies.

Keywords: democratic transformation, disability as minority, misrepresentation of experience, non-equal democracy, sustainability

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Authors: Sushil Kumar Solanki, Rachna Khare

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Universal Design is a concept of built environment creation, where all people are facilitated to the maximum extent possible without using any type of specialized design. However, accessible design is a design process in which the needs of people with disabilities are specifically considered. Building standards on accessibility contains scoping and technical requirements for accessibility to sites, facilities, building and elements by individual with disability. India is also following its prescriptive types of various building standards for the creation of physical environment for people with disabilities. These building standards are based on western models instead of research based standards to serve Indian needs. These standards lack contextual connect when reflects in its application in the urban and rural environment. This study focuses on critical and comparative study of various international building standards and codes, with existing Indian accessibility standards to understand problems and prospects of concept of Universal Design building standards for India. The result of this study is an analysis of existing state of Indian building standard pertaining to accessibility and future need of performance based Universal Design concept.

Keywords: accessibility, building standard, built-environment, universal design

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Authors: Costrie Ganes Widayanti

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Learning Disabilities (LDs) are less understood by the Indonesia’s educational practitioners. As a result, students with LDs are at risk of being outcast from the learning process that requires participation, which potentially disconnects them academically and socially. Its objective is to raise the voice of students with LDs regarding their engagement in the classroom. This research is conducted in two urban regular public primary schools in Indonesia. The study uses an ethnographic case study research design, which explores the views and experiences of four (4) students with LDs. The data were collected using participant observations and interviews. The preliminary findings highlighted two areas: 1) the stigmatization about LDs; and 2) perceived membership. Having LDs was a barrier to fully engage in the academic and social life. Interestingly, they were more likely dependent on each other for support as limited assistance was offered by teachers and peers. Their peers did not take a keen interest in helping them when they found difficulties with the assignments. Furthermore, due to their low academic performance, they were not in favor of being nominated as a group member. In a situation that required them to do a group assignment, they were not expected to give a contribution, positioning themselves as incompatible. These findings indicated that such practices legitimate the hegemony of the superior over those who are powerless and left behind.

Keywords: engagement, experiences, learning disability, qualitative design

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Authors: Susan D. Toliver

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Within the professional research literature on parenting in the United States, there is a paucity of research on parenting within the African American or Black community. Research on parenting focused on African Americans within the upper middle class, who constitute a critical and growing sector within the African American population, is all but non-existent. Research to address this void is needed. Despite the progress that has been made toward eliminating the long-standing racial divides in U.S. society, these divides persist and continue to affect different experiences and opportunity structures for White Americans versus Black Americans, including those in the upper middle class. Achievement of middle and upper middle class status of adult heads of families has generally been seen as the route to greater success and well-being for their children. While higher family class status is positively correlated with these factors, the strength of the relationship between higher social class and success and well-being is weaker for Black American families as compared to White American families. In light of the realities of racial inequality, African American parents, including those who have achieved higher status, have unique concerns for their children. African American parents, on the basis of their own experiences and their sense of the world as being highly racialized, anticipate the kinds of experiences that their children are likely to encounter as they grow and mature from childhood to adulthood and beyond. Racial discrimination and macro and micro racial aggressions are continued sources of concern for these parents. On the basis of in-depth personal interviews with upper middle class African American parents, findings suggest that the parenting goals and strategies of African American parents are influenced by the continuing significance of race as a social divide, including in higher socio-economic strata, in the United States. Black American families' parenting practices differ from those of White American families and are inclusive of the unique factors that threaten the well-being of African American children. Specifically, parenting practices are shaped by parents' fears about the racial experiences that they anticipate that their children will encounter. Parents' perceptions of parental effectiveness are linked to their ability to prepare their children for success in confronting, understanding, and contextualizing racial inequalities and aggressions. Theories of Parental Projective Care are useful in understanding the special considerations and unique parenting goals and behaviors of higher status African Americans.

Keywords: African American parenting, parental projective care, parenting effectiveness, racial socialization, upper middle class parenting

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Authors: Zolzaya Badmaavanchig, Shoko Miyamoto

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In recent years, universal design for learning (hereinafter referred to as "UDL"), which aims to establish an inclusive education system and to make all children, regardless of their disabilities, experts in learning, has been attracting attention, and there have been some attempts to incorporate it into regular classrooms where children with developmental disabilities and those who show such tendencies are enrolled. The purpose of this study was to examine the effectiveness and challenges of implementing UDL in Japanese elementary schools based on the previous literature. As a method, we first searched for articles on UDL for learning and UDL in the classroom from 2010 to 2022. In addition, we selected practice studies that targeted children with special educational support needs and the classroom as a whole. In response to the extracted literature, this bridge examined the following five perspectives: (1) subjects and grades in which UDL was practiced, (2) methods to grasp the actual conditions of the children, (3) consideration for children with special needs during class, (4) form of class, and (5) effects of the practice. Based on the results, we would like to present issues related to future UDL efforts in Japanese elementary schools.

Keywords: universal design for learning, regular elementary school class, children with special education needs, special educational support

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Authors: M. D. Antoine

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When a child is diagnosed with an illness, condition, or developmental disorder, the process involved in understanding and accepting this diagnosis can be a very stressful and isolating experience for parents and families. The healthcare providers’ ability to effectively communicate in such situations represents a vital lifeline for parents. In this context, communication becomes a crucial element not only for getting through the period of grief but also for the future. We mobilized the five stages of grief model to summarize existing literature regarding the ways in which the experience ofan autism spectrum disorder diagnosis disclosurealigns with the experience of grief to explore how this can inform best practices for effective communication with parents through the diagnosis disclosure. Fifteen publications met inclusion criteria. Findings from the scoping review of empirical studies show that parents/families experience grief-like emotions during the diagnosis disclosure. However, grief is not an outcome of the encounter itself. In fact, the experience of the encounter can help mitigate the grief experience. The way parents/families receive and react to the ‘news’ depends on their preparedness, knowledge, and the support received through the experience. Individual communication skills, as well as policies and regulations, should be examined to alleviate adverse reactions in this context. These findings highlight the importance of further research into effective parent-provider communication strategies and their place in supporting quality autism care.

Keywords: autism spectrum disorder, autism spectrum disorder diagnosis, diagnosis disclosure, parent-provider communication, parental grief

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

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Introduction and Aim: One of the most challenging aspects of being parents of a child diagnosed with cancer is to balance their normal family life with the child's health needs and treatment requirements. Cancer covers an important part of family life and gets ahead of other matters. Families mostly feel that everything has changed in their lives with the cancer diagnosis and are obliged to make a number of adjustments in their lives. Their normal family life suddenly begins to include treatments, hospital appointments and hospitalizations. This study is a descriptive research conducted to determine the changes in the lives of families who had a child with cancer. Methods: This study was carried out with 65 families having children diagnosed with cancer in 0-17 age group at outpatient pediatric oncology clinic and polyclinic of a university hospital in Trabzon. Data were collected through survey method from August to November, 2015. In the analysis of the data, numbers, percentage and chi-square test were used. Findings: It was found out that the average age of mothers was 35.33 years, most of them were primary school graduates (44.6%) and housewives (89.2%) and the average age of fathers was 39.30 years, most of them were high school graduates (29.2%) and self-employed (43.8% ). The majority of their children were boys and their average age was 7.74 years and 77% had Acute lymphocytic leukemia (ALL) diagnosis. 87.5% of the mothers who had a child with cancer had increased fears in their lives, 84.4% had increased workload at home, 82.8% had more stressful life and 82.8% felt themselves physically tired. The mothers indicated that their healthy children could not do the social activities they had used to do before (56.5%), they no longer fed their healthy children with the food they loved eating so that the sick child did not aspire (52.3%) and their healthy children were more furious than before (53.2%). As for the fathers, the fundamental change they had was increased workload at home (82.3%), had more stressful life (80.6%) and could no longer allocate time to the activities they had been interested in and done before (77.8%). There was not a significant difference between the sick children gender and the changes in their parents lives. The communication between the mothers and their healthy children were determined to be positively affected in the families in which the sick child's disease duration was under 12 months (X2 = 6.452, p = 0.011). Conclusion: This study showed that parents having a child with cancer had more workload at home, had more stressful lives, could not allocate time to social activities, had increased fears, felt themselves tired and their healthy children became more furious and their social activities reduced.

Keywords: child, cancer, changes in lives, family

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Authors: A. Gagat-Matuła

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The article is concerned in the issue of social support and quality of life of youth suffering from cerebral palsy, who are temporarily orphaned due to the emigration of a parent. Migration causes multi-aspect consequences in various spheres of life. They are particularly severe for the functioning of families. Temporal parting of parents and children, especially the disabled, is a difficult situation. In this case, the family structure is changed, as well as the quality of life of its members. Children can handle migration parting in a better or worse way; these can be divided into properly functioning and manifesting behaviour disorders. In conditions of the progressing phenomenon of labour migration of Poles and a wide spectrum of consequences for the whole social life, it is essential to undertake actions aimed at support of migrants and their families. This article focuses mainly on social support and quality of families members, of which, are the labour migrants perceived by youth suffering from cerebral palsy. The quantitative method was used in this study. In the study, the Satisfaction with Life Scale (SWLS) by Diener, was used. The analysed group consisted of 50 persons (37 girls and 13 boys), aged 16 years to 18 years, whose parents are labour migrants. The results indicate that the quality of life and social support for youth suffering from cerebral palsy who are temporarily orphaned is at a low and average level.

Keywords: social support, quality of life, migration, cerebral palsy

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Authors: Julius A. Ademokoya, Grace C. Ilori

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Extreme public transport difficulty for persons with disabilities (PWDs) has always been one of the challenges which these individuals experience on a daily basis in Nigeria. Private and public transport vehicles are not disability- friendly. Operators of public transport are often very intolerant of PWDs' conditions. Indeed, many Nigerians believe it is luxury for PWDs to engage in public transport. They are rarely expected to be seen in public much less going to places via public transport means. Initiatives by a few Nigerian states to develop and implement public transport policies for PWDs, therefore, were a huge relief for them and some concerned Nigerians. A few years ago, three southwest Nigerian states (Lagos, Ondo, and Ekiti) came up with some legislative welfare provisions (including transport programmes) for PWDs. This study, therefore, sought to ascertain levels of awareness and implementation of public policies among the PWDs and those expected to implement the policies. The study adopted a mixed method research. Findings across the three states showed that: (1) awareness of public policies among PWDs is low and (2) a considerable scope of the policies is not yet implemented. Recommendations are, therefore, made on how to improve on awareness and implementation of transport policies for PWDs in three south-west Nigerian states.

Keywords: awareness, disability rights, implementation persons with disability, transport policies

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Authors: Anamika Devi

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Based on Vygotsky’s cultural, historical theory and Hedegaard’s concept of transition, this study aims to investigate to propose strategies to maintain digital wellbeing of children and parents during and post COVID pandemic. Due COVID 19 pandemic, children and families have been facing new challenges and sudden changes in their everyday life. While children are juggling to adjust themselves in new circumstance of onsite and online learning settings, parents are juggling with their work-life balance. A number of papers have identified that the COVID-19 pandemic has affected the lives of many families around the world in many ways, for example, the stress level of many parents increased, families faced financial difficulties, uncertainty impacted on long term effects on their emotional and social wellbeing. After searching and doing an intensive literature review from 2020 and 2021, this study has found some scholarly articles provided solution or strategies of reducing stress levels of parents and children in this unprecedented time. However, most of them are not underpinned by proper theoretical lens to ensure they validity and success. Therefore, this study has proposed strategies that are underpinned by theoretical lens to ensure their impact on children’s and parents' emotional wellbeing during and post COVID-19 era. The strategies will highlight on activities for positive coping strategies to the best use of family values and digital technologies.

Keywords: onsite and online learning, strategies, emotional wellbeing, tips, and strategies, COVID19

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Authors: Naseer Ahmad Bhat

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Jammu and Kashmir Public Safety Act, 1978 provides for administrative detention in Jammu and Kashmir, a disputed region between India & Pakistan, since 1947. This paper shall critically analyse the working of PSA (Public Safety Act) in this J&K since 1978, since its inception. Detentions under this Act traverse between the security of the State and Liberty of citizens but over decades, has this Act served its purpose in Kashmir or not shall be analysed in this paper. J&K PSA is used to detain political workers, Over-Ground Workers and Stone Pelters who pose a direct threat to the ‘security of the State.’ Detentions under J&K PSA are a good measure in the hands of Security agencies to bring calm during periods of turmoil, but it has socio-economic consequences for detainees as well as families. This paper shall highlight the Socio-Economic impact of detentions under J&K PSA on individuals and families.

Keywords: detentions, Kashmir, public safety act, liberty, security

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Authors: Ibrahim Abubakar Alkali, Abubakar Sarkile Kawuwa, Ibrahim Sani Khalil

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The concept of space and function forms the bedrock for spatial configuration in architectural design. Thus, the effectiveness and functionality of an architectural product depends their cordial relationship. This applies to all buildings especially to a hospital ward setting designed to accommodate various complex and diverse functions. Health care facilities design, especially an inpatient setting, is governed by many regulations and technical requirements. It is also affected by many less defined needs, particularly, response to culture and the need to provide for patient families’ presence and participation. The spatial configuration of the hospital ward setting in developing countries has no consideration for the patient’s families despite the significant role they play in promoting recovery. Attempts to integrate facilities for patients’ families have always been challenging, especially in developing countries like Nigeria, where accommodation for inpatients is predominantly in an open ward system. In addition, the situation is compounded by culture, which significantly dictates healthcare practices in Africa. Therefore, achieving such a hospital ward setting that is patient and family-centered requires careful assessment of family care actions and transaction spaces so as to arrive at an evidence based solution. Therefore, the aim of this study is to identify how hospital ward spaces can be reconfigured to provide for sustainable family integration. In achieving this aim, a qualitative approach using the principles of behavioral mapping was employed in male and female medical wards of the Federal Teaching Hospital (FTH) Gombe, Nigeria. The data obtained was analysed using classical and comparative content analysis. Patients’ families have been found to be a critical component of hospital ward design that cannot be undermined. Accordingly, bedsides, open yards, corridors and foyers have been identified as patient families’ transaction spaces that require design attention. Arriving at sustainable family integration can be achieved by revisiting the design requirements of the family transaction spaces based on the findings in order to avoid the rowdiness of the wards and uncoordinated sprawl.

Keywords: caregiving, design basics, family integration, hospital ward, sustainability

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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: Wafa Al Jabri

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Sickle cell disease (SCD) is a genetic blood disorder that is characterized by a severe painful crisis. SCD among children requires long term dependencies and high caregiving demands that increase the overall family burdens. It is, therefore, essential to examine, support, and promote the well-being of families of children with SCD. Although there has been considerable progress in the international research on family quality of life (FQOL) in recent years; however, research in this field is relatively recent and diverse. Oman is a country in which family quality of life has definitely been under-researched. Therefore, the purpose of the study is to describe the FQOL in families of children with SCD in Oman. The study will also examine the relationships between child, mother, and family-related factors that may influence the overall FQOL. Theoretical Framework: The study is guided by the unified theory of family quality of life to help in understanding the concept of FQOL and the factors that shape it. Method:A convenience sample of 98 mothers of children with SCD will be recruited from the pediatric hematology clinic at Sultan Qaboos University Hospital in Oman to participate in this descriptive, cross sectional, correlational study. Data will be obtained using a self-administered questionnaire that includes child and mother socio-demographic data, questions about the number of visits and admissions to health care facilities for vaso- occlusive crises (VOCs), the Perceived Stress Scale-10, and the Beachcenter-FQOL scale. Anticipated Results: It is expected to find an association among frequency of VOCs, mother’s perceived stress level, and FQOL in families of children with SCD in Oman. Family type, socio-economic status, and number of SCD children in the family are also expected to influence the overall FQOL. Conclusion: The findings of the study might be pivotal in designing and implementing tailored family-based interventions to improve families’ wellbeing.

Keywords: family quality of life, sickle cell disaes, children, family well-being

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Authors: Aree Thongpukdee, Chockpisit Thepsithar, Chuthalak Thammaso

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Use of plants grown in local area for edible has a long tradition in different culture. The indigenous knowledge such as usage of plants as vegetables by local people is risk to disappear when no records are done. In order to conserve and transfer this valuable heritage to the new generation, ethnobotanical study should be investigated and documented. The survey of vegetable plants traditionally used was carried out in the year 2012. Information was accumulated via questionnaires and oral interviewing from 100 people living in 36 villages of 9 districts in Amphoe Huai Mek, Kalasin, Thailand. Local plant names, utilized parts and preparation methods of the plants were recorded. Each mentioned plant species were collected and voucher specimens were prepared. A total of 55 vegetable plant species belonging to 34 families and 54 genera were identified. The plant habits were tree, shrub, herb, climber, and shrubby fern at 21.82%, 18.18%, 38.18%, 20.00% and 1.82% respectively. The most encountered vegetable plant families were Leguminosae (20%), Cucurbitaceae (7.27%), Apiaceae (5.45%), whereas families with 3.64% uses were Araceae, Bignoniaceae, Lamiaceae, Passifloraceae, Piperaceae and Solanaceae. The most common consumptions were fresh or brief boiled young shoot or young leaf as side dishes of ‘jaeo, laab, namprik, pon’ or curries. Most locally known vegetables included 45% of the studied plants which grow along road side, backyard garden, hedgerow, open forest and rice field.

Keywords: vegetable plants, ethnobotanical survey, Kalasin, Thailand

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Authors: Li Wang, Dan Shu, Shiguang Pang, Lixiu Wang, Bing Xiang Yang, Qian Liu

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Background: Cancer is one of the most severe diseases in childhood; long-term treatment and its side effects significantly impact the patient's physical, psychological, social functioning and quality of life while also placing substantial physical and psychological burdens on caregivers and families. Family resilience is crucial for children with cancer, helping them cope better with the disease and supporting the family in facing challenges together. As a family-level variable, family resilience requires information from multiple family members. However, to our best knowledge, there is currently no research investigating family resilience from both the perspectives of pediatric cancer patients and their caregivers. Therefore, this study aims to investigate the family resilience and quality of life of pediatric cancer patients from a patient–caregiver dyadic perspective. Methods: A total of 149 dyads of patients diagnosed with pediatric cancer patients and their principal caregivers were recruited from oncology departments of 4 tertiary hospitals in Wuhan and Taiyuan, China. All participants completed questionnaires that identified their demographic and clinical characteristics as well as assessed their family resilience and quality of life for both the patients and their caregivers. K-means cluster analysis was used to identify different clusters of family resilience based on the reports from patients and caregivers. Multivariate logistic regression and linear regression are used to analyze the factors influencing family resilience and quality of life, as well as the relationship between the two. Results: Three clusters of family resilience were identified: a cluster of high family resilience (HR), a cluster of low family resilience (LR), and a cluster of discrepant family resilience (DR). Most (67.1%) families fell into the cluster with low resilience. Characteristics such as the types of caregivers perceived social support of the patient were different among the three clusters. Compared to the LR group, families where the mother is the caregiver and where the patient has high social support are more likely to be assigned to the HR. The quality of life for caregivers was consistently highest in the HR cluster and lowest in the LR cluster. The patient's quality of life is not related to family resilience. In the linear regression analysis of the patient's quality of life, patients who are the first-born have higher quality of life, while those living with their parents have lower quality of life. The participants' characteristics were not associated with the quality of life for caregivers. Conclusions: In most families, family resilience was low. Families with maternal caregivers and patients receiving high levels of social support are more inclined to be higher levels of family resilience. Family resilience was linked to the quality of life of caregivers of pediatric cancer patients. The clinical implications of this findings suggest that healthcare and social support organizations should prioritize and support the participation of mothers in caregiving responsibilities. Furthermore, they should assist families in accessing social support to enhance family resilience. This study also emphasizes the importance of promoting family resilience for enhancing family health and happiness, as well as improving the quality of life for caregivers.

Keywords: pediatric cancer, cluster analysis, family resilience, quality of life

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Authors: P. Pérez-Martín, G. Pedrós, P. Martínez-Jiménez, M. Varo-Martínez

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In recent decades, family habits related to children’s displacements to school have changed, increasing motorized travels against active modes. This entails a major negative impact on the urban environment, road safety in cities and the physical and psychological development of children. One of the more common actions used to reverse this trend is Walking School Bus (WSB), which consists of a predefined adult-scorted pedestrian route to school with several stops along the path where schoolchildren are collected. At Tirso de Molina School in Cordoba (Spain), a new ICT-based methodology to deploy WSB has been tested. A mobile app that allows the geoposition of the group, the notification of the arrival and real-time communication between the WSB participants have been presented to the families in order to organize and register the daily participation. After an initial survey to know the travel mode and the spatial distribution of the interested families, three WSB routes have been established and the families have been trained in the app usage. During nine weeks, 33 children have joined the WSB and their parents have accompanied the groups in turns. A high recurrence in the attendance has been registered. Through a final survey, participants have valued highly the tool and the methodology designed, emphasizing as most useful features of the mobile app: notifications system, chat and real-time monitoring. It has also been found that the tool has had a major impact on the degree of confidence of parents regarding the autonomous on foot displacement of their children to school. Moreover, 37,9% of the participant families have reported a total or partial modal shift from car to walking, and the benefits more reported are an increment of the parents available time and less problems in the travel to school daily organization. As a consequence, It has been proved the effectiveness of this user-centric innovative ICT-based methodology to reduce the levels of private car drop offs, minimize barriers of time constraints, volunteer recruitment, and parents’ safety concerns, while, at the same time, increase convenience and time savings for families. This pilot study can offer guidance for community coordinated actions and local authority interventions to support sustainable school travel outcomes.

Keywords: active travel, mobile app, sustainable mobility, urban transportation planning, walking school bus

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Authors: Jennifer Isabelle Rios Rendón, Ursula Sanchez, Dana Lee Baker

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Disability Policy in México has witnessed numerous changed throughout the years. Physical disabilities are more often recognized in Mexican culture. However, with an emerging focus on neurological disabilities or differences in individuals’ new policies are needed to serve better and understand the needs of these populations. The need to understand and communicate with local leaders is imperative, as the lens used to analyze autism has historically been from a Western school of thought. We are looking to comprehend the disability policy subsystem in México - specifically how autism is perceived, the language used to describe it, and how it ties to the cultural stigma of disabilities that exist in México. Therefore, to understand this, we seek to interview multiple policy leaders on their experience in autism and disability policy. The goal is to conduct qualitative research through interviews with local autism and disability leaders in México. This methodology aims to answer the questions of what language commonly and culturally is utilized in disability policy, the context of how autism is perceived in México, and in general, the lived experience of the disability policy leaders that take part in this effort in México. Local activists and policy leaders were initially found through an online search then collected using snowball sampling. The interviews were conducted through a series of pre-formulated questions that the policy leader answered via email or a phone conversation with the researchers. Acknowledging the importance of language and accessibility, the need for the content to be in both English and Spanish as well as auditory and visual is essential to take steps in the inclusion of a Neurodiverse group of leaders. This work is a demonstration of the framework of the investigation which hopes to create a more complete understanding of the policy and political culture around autism in México. Results of the project include new insight into the developing relationship between the President Andrés Manuel López Obrador’s administration, disability activists, and neurodiverse communities. The project contributes to denormalizing the legacy of white supremacy in autism related, historically rooted in the assumption that autism occurs predominantly in white communities.

Keywords: autism, disability leaders, disability policy, México, Neurodiversity

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Authors: Diana Cunha, Catarina Coelho, Ana Paula Relvas, Elisabeth Kastenholz

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Context: Tourist experiences have a recognized impact on the well-being of individuals. However, studies on the specific benefits of tourist experiences for families are scattered across different disciplines. This study aims to systematically review the literature to synthesize the evidence on the benefits of tourist experiences for families. Research Aim: The main objective is to systematize the evidence in the literature regarding the benefits of tourist experiences for families. Methodology: A systematic literature review was conducted using Nvivo, analyzing 33 scientific studies obtained from various databases. The search terms used were "family"/ "couple" and "tourist experience". The studies included quantitative, qualitative, mixed methods, and literature reviews. All works prior to the year 2000 were excluded, and the search was restricted to full text. A language filter was also used, considering articles in Portuguese, English, and Spanish. For NVivo analysis, information was coded based on both deductive and inductive perspectives. To minimize the subjectivity of the selection and coding process, two of the authors discussed the process and agreed on criteria that would make the coding more objective. Once the coding process in NVivo was completed, the data relating to the identification/characterization of the works were exported to the Statistical Package for the Social Sciences (SPPS), to characterize the sample. Findings: The results highlight that tourist experiences have several benefits for family systems, including the strengthening of family and marital bonds, the creation of family memories, and overall well-being and life satisfaction. These benefits contribute to both immediate relationship quality improvement and long-term family identity construction and transgenerational transmission. Theoretical Importance: This study emphasizes the systemic nature of the effects and relationships within family systems. It also shows that no harm was reported within these experiences, with only some challenges related to positive outcomes. Data Collection and Analysis Procedures: The study collected data from 33 scientific studies published predominantly after 2013. The data were analyzed using Nvivo, employing a systematic review approach. Question Addressed: The study addresses the question of the benefits of tourist experiences for families and how these experiences contribute to family functioning and individual well-being. Conclusion: Tourist experiences provide opportunities for families to enhance their interpersonal relationships and create lasting memories. The findings suggest that formal interventions based on evidence could further enhance the potential benefits of these experiences and be a valuable preventive tool in therapeutic interventions.

Keywords: family systems, individual and family well-being, marital satisfaction, tourist experiences

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Authors: Manuel A. Alonso-Tarajano, Roberto Mosca, Patrick Aloy

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Protein kinases participate in a myriad of cellular processes of major biomedical interest. The in vivo substrate specificity of these enzymes is a process determined by several factors, and despite several years of research on the topic, is still far from being totally understood. In the present work, we have quantified the contributions to the kinase substrate specificity of i) the phosphorylation sites and their surrounding residues in the sequence and of ii) the association of kinases to adaptor or scaffold proteins. We have used position-specific scoring matrices (PSSMs), to represent the stretches of sequences phosphorylated by 93 families of kinases. We have found negative correlations between the number of sequences from which a PSSM is generated and the statistical significance and the performance of that PSSM. Using a subset of 22 statistically significant PSSMs, we have identified specificity determinant residues (SDRs) for 86% of the corresponding kinase families. Our results suggest that different SDRs can function as positive or negative elements of substrate recognition by the different families of kinases. Additionally, we have found that human proteins with known function as adaptors or scaffolds (kAS) tend to interact with a significantly large fraction of the substrates of the kinases to which they associate. Based on this characteristic we have identified a set of 279 potential adaptors/scaffolds (pAS) for human kinases, which is enriched in Pfam domains and functional terms tightly related to the proposed function. Moreover, our results show that for 74.6% of the kinase– pAS association found, the pAS colocalize with the substrates of the kinases they are associated to. Finally, we have found evidence suggesting that the association of kinases to adaptors and scaffolds, may contribute significantly to diminish the in vivo substrate crossed- specificity of protein kinases. In general, our results indicate the relevance of several SDRs for both the positive and negative selection of phosphorylation sites by kinase families and also suggest that the association of kinases to pAS proteins may be an important factor for the localization of the enzymes with their set of substrates.

Keywords: kinase, phosphorylation, substrate specificity, adaptors, scaffolds, cellular colocalization

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Authors: Kacharava Tamar, Korakhashvili Avtandil, Epitashvili Tinatin

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The article deals with the database, which was created by the authors, related to biodiversity of some families of useful plants (medicinal, aromatic, spices, dye and poisonous) existing in Georgia considering important taxonomy. Our country is also rich with endemic genera. The results of monitoring of the phytogenetic resources to reveal perspective species and situation of endemic species and resources are also discussed in this paper. To get some new medicinal and preventive treatments using plant raw material in the phytomedicine, phytocosmetics and phytoculinary, the unique phytogenetic resources should be protected because the application of useful plants is becoming irreversible. This can be observed along with intensification and sustainable use of ethnobotanical traditions and promotion of phytoproduction based on the international requirements on biodiversity (Convention on Biological Diversity - CBD). Though Georgian phytopharmacy has the centuries-old traditions, today it is becoming the main concern.

Keywords: aromatic, medicinal, poisonous, spicy, dye plants, endemic biodiversity, endemic, ELISA, GIS

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Authors: Santiago Quesada-García, María Lozano-Gómez, Pablo Valero-Flores

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The recent digital revolution, together with modern technologies, is changing the environment and the way people interact with inhabited space. However, in society, the elderly are a very broad and varied group that presents serious difficulties in understanding these modern technologies. Outpatients with cognitive disabilities, such as those suffering from Alzheimer's disease (AD), are distinguished within this cluster. This population group is in constant growth, and they have specific requirements for their inhabited space. According to architecture, which is one of the health humanities, environments are designed to promote well-being and improve the quality of life for all. Buildings, as well as the tools and technologies integrated into them, must be accessible, inclusive, and foster health. In this new digital paradigm, artificial intelligence (AI) appears as an innovative resource to help this population group improve their autonomy and quality of life. Some experiences and solutions, such as those that interact with users through chatbots and voicebots, show the potential of AI in its practical application. In the design of healthy spaces, the integration of AI in architecture will allow the living environment to become a kind of 'exo-brain' that can make up for certain cognitive deficiencies in this population. The objective of this paper is to address, from the discipline of neuroarchitecture, how modern technologies can be integrated into everyday environments and be an accessible resource for people with cognitive disabilities. For this, the methodology has a mixed structure. On the one hand, from an empirical point of view, the research carries out a review of the existing literature about the applications of AI to build space, following the critical review foundations. As a unconventional architectural research, an experimental analysis is proposed based on people with AD as a resource of data to study how the environment in which they live influences their regular activities. The results presented in this communication are part of the progress achieved in the competitive R&D&I project ALZARQ (PID2020-115790RB-I00). These outcomes are aimed at the specific needs of people with cognitive disabilities, especially those with AD, since, due to the comfort and wellness that the solutions entail, they can also be extrapolated to the whole society. As a provisional conclusion, it can be stated that, in the immediate future, AI will be an essential element in the design and construction of healthy new environments. The discipline of architecture has the compositional resources to, through this emerging technology, build an 'exo-brain' capable of becoming a personal assistant for the inhabitants, with whom to interact proactively and contribute to their general well-being. The main objective of this work is to show how this is possible.

Keywords: Alzheimer’s disease, artificial intelligence, healthy architecture, neuroarchitecture, architectural design

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Authors: Shan-Ken Chien

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This research aims to share the application of the Music and Narrative Curriculum developed through a college community service-learning course to a special education classroom in a local secondary school. The development of the Music and Narrative Curriculum stems from the music appreciation courses that the author has taught at the university. The curriculum structure consists of three instructional phases, each with three core literacy. This study will show the implementation of an eighteen-week general music education course, including classroom training on the university campus and four intervention music lessons in a special education classroom. Students who participated in the Music and Narrative Curriculum came from two different parts. One is twenty-five college students enrolling in Music Literacy and Community Service-Learning, and the other one is nine junior high school students with intellectual disabilities (ID) in a special education classroom. This study measures two parts. One is the effectiveness of the Music and Narrative Curriculum in applying four interventions in music lessons in a special education classroom, and the other is measuring college students' service-learning experiences and growth outcomes.

Keywords: college service-learning, general music education, music literacy, narrative skills, students with special needs

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Authors: Febrian Tegar Wicaksana, Niqmatul Kurniati, Surya Nandika

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Indonesia is one of the countries that have great number of disaster occurrence and threat because it is located in not only between three tectonic plates such as Eurasia plates, Indo-Australia plates and Pacific plates, but also in the Ring of Fire path, like earthquake, Tsunami, volcanic eruption and many more. Recently, research shows that there are potential areas that will be devastated by Tsunami in southern coast of Java. Tsunami is a series of waves in a body of water caused by the displacement of a large volume of water, generally in an ocean. When the waves enter shallow water, they may rise to several feet or, in rare cases, tens of feet, striking the coast with devastating force. The parameter for reference such as magnitude, the depth of epicentre, distance between epicentres with land, the depth of every points, when reached the shore and the growth of waves. Interaction between parameters will bring the big variance of Tsunami wave. Based on that, we can formulate preparation that needed for disaster mitigation strategies. The mitigation strategies will take the important role in an effort to reduce the number of victims and damage in the area. It will reduce the number of victim and casualties. Reducing is directed to the most difficult mobilization casualties in the tsunami disaster area like old people, sick people and disabilities people. Until now, the method that used for rescuing people from Tsunami is basic horizontal evacuation. This evacuation system is not optimal because it needs so long time and it cannot be used by people with disabilities. The writers propose to create a vertical evacuation model with an escape bunker system. This bunker system is chosen because the downward vertical evacuation is considered more efficient and faster. Especially in coastal areas without any highlands surround it. The downward evacuation system is better than upward evacuation because it can avoid the risk of erosion at the ground around the structure which can affect the building. The structure of the bunker and the evacuation process while, and even after, disaster are the main priority to be considered. The power of bunker has quake’s resistance, the durability from water stream, variety of interaction to the ground, and waterproof design. When the situation is back to normal, victim and casualties can go into the safer place. The bunker will be located near the hospital and public places, and will have wide entrance supported by large slide in it so it will ease the disabilities people. The technology of the escape bunker system is expected to reduce the number of victims who have low mobility in the Tsunami.

Keywords: escape bunker, tsunami, vertical evacuation, mitigation, disaster management

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Authors: Nyla Anjum, Humaira Bano

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Disability, regardless of its type and nature limits one or two significant life activities. These limitations constitute risk factors for suicide. Rate and intensity of problem upsurges in critical age of adolescence. Researches in the field of mental health over look problem of suicide among persons with disability. Aim of the study was to investigate prevalence and risk factors for suicide among adolescents with disability. The study constitutes purposive sample of 106 elements of both gender with four major categories of disability: hearing impairment, physical impairment, visual impairment and intellectual disabilities. Face to face interview technique was opted for data collection. Other variable are: socio-economic status, social and family support, provision of services for persons with disability, education and employment opportunities. For data analysis independent sample t-test was applied to find out significant differences in gender and One Way Analysis of variance was run to find out differences among four types of disability. Major predictors of suicide were identified with multiple regression analysis. It is concluded that ideation, plans and attempts of suicide among adolescents with disability is a multifaceted and imperative concern in the area of mental health. Urgent research recommendations contains valid measurement of suicide rate and identification of more risk factors for suicide among persons with disability. Study will also guide towards prevention of this pressing problem and will bring message of happy and healthy life not only for persons with disability but also for their families. It will also help to reduce suicide rate in society.

Keywords: suicide, risk factors, adolescent, disability, mental health

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Authors: Nino KItoshvili

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The family is an integral part of society, which plays a major role in the socialization and the formation of a person as a full member of society. The marital conflict even harms family members and finds a different effect on each member of the family, especially on children. There is a significant difference in the behavior of adolescents in conflict and non-conflict families. In times of marital conflict, adolescent psycho-social well-being is significantly dependent on socio-cultural mediating variables such as; Family income; Parenting style; The functioning of the family, and the existence of psycho-social support. In a family with low economic performance, low psychosocial harassment, family dysfunction, and bad parenting style, marital conflict significantly increases the risk of deteriorating adolescent psycho-social well-being. At this time, to support the well-being of the child, a special role is played by improving the marital relationship, which must be supported by state and community services. There are very few family studies in this field in Georgia, the therapeutic direction of the family is at an early stage, and there are no family-supporting psycho-social programs. This increases the chances of adolescent psycho-social well-being deteriorating amd socialization problems. The study will examine the mediating variables of marital conflict and adolescent psycho-social well-being and will attempt to determine their mediating and moderating role. Research suggests that an increase in the rate of marital conflict is associated with a decrease in child well-being. The well-being of children in conflict families is lower than that of children in non-conflict families and depends on the variables of mediating variables. Quantitative research will be conducted to study this phenomenon through a questionnaire developed and standardized in the research process. The study will be attended by families living in Georgia - spouses (married) and their adolescent children. By analyzing the data obtained from the research, we will be able to determine in which cases the intensity of the relationship between the marital conflict and the well-being of the adolescent increases or decreases; To conclude the mediating and moderating role of mediating variables and also to make relevant recommendations to reduce the negative impact on the psycho-social well-being of a child of marital conflict.

Keywords: adolescent, mediation, moderation, conflict, couple, well-being

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Authors: Binoun Chaki Hagar

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Studies have investigated grandparents' perceptions relating to their grandchildren with disabilities. Literature on grandparenthood focuses on the Western grandparents. Autism within the Arab populations has also being investigated. Moreover, the Bedouin population can also be seen in various studies related to different experiences and different perceptions about disabilities in general and among children in particular. However, as far as we know, no studies were found on grand parenting a child with autism in Bedouin society. This study combines three areas of knowledge, to create another knowledge domain. The aim of this study was to learn about the experience of grand parenting an autistic child in the Bedouin Arab society, to examine how it affects the grandparents' relationships, feelings, and functioning within the family, and as individuals, as well as to examine their coping mechanisms and their social support networks. This study is significant and as it examines autism and grandparents among the Bedouin Arab population in Israel, a population that has unique socio-demographic, cultural and traditional characteristics. The study revealed three themes concerning the meaning of grandparenthood to be associated with family continuity, how autism is perceived, and the importance of religion. It also suggests another category – the status of the elderly in the Arab-Bedouin family. It is recognized that the role of the elderly is held in high esteem, and can be affected by the grandchild’s’ autism.

Keywords: Arab–Bedouin family, autism, grandparents, family relationships

Procedia PDF Downloads 288