scholarly journals Youth perspectives on genetic inheritance, carrier status and disclosure

2016 ◽  
Vol 3 (2) ◽  
pp. 21-28
Author(s):  
Alpha-Umaru Barrie
Keyword(s):  
Genetic Testing ◽  
Young People ◽  
Best Practice ◽  
Basic Knowledge ◽  
Carrier Status ◽  
Current Guideline ◽  
Bleeding Disorders ◽  
Genetic Inheritance ◽  
Children And Young People ◽  
Medical Benefits

Abstract Knowledge about genetic inheritance as a concept in children and young people with bleeding disorders is synonymous, in many ways, with other inherited genetic conditions. Children and young people have a more physiological understanding of inheritance, but may hold mistaken and inaccurate beliefs in understanding basic genetics. There are complex ethical and social problems in the genetic testing of youngsters with bleeding disorders to establish carrier status. Current guideline recommendations indicate circumstances where clear psychosocial and medical benefits can be demonstrated. However, children and young people have a reduced capacity to understand the tests and their implications, and in many cases family communication may impact the extent of disclosure of genetic risk factors. This paper explores the genetics of inherited bleeding disorders, including basic knowledge of the concept of inheritance and reproductive risks. Carrier status in children and young people will be considered, drawing on legal rulings that may shed light on best practice in establishing carrier status based on genetic testing. Communication patterns within families around inherited bleeding disorders and the complicated process of disclosure will also be discussed.

The importance of parents in the lives of children in the care system

2003 ◽  
Vol 28 (2) ◽  
pp. 25-31 ◽  
Author(s):  
Jane Thomson ◽  
Ros Thorpe
Keyword(s):  
Young People ◽  
Home Care ◽  
Best Practice ◽  
Research Priorities ◽  
Future Research ◽  
Research Focus ◽  
Children And Young People ◽  
Natural Family ◽  
Out Of Home Care ◽  
Outcomes For Children

Research to date has found that natural parents may be an important source of identity and support for children in and young people leaving out-of-home care. There has, however, been limited research on natural parents themselves, both internationally and in Australia.This paper provides a justification for a research focus on parents, documents what is known from research to date, highlights current issues for parents and their children in out-of-home care, and concludes by identifying future research priorities in the area. The paper calls for recognition of the need to maintain positive links between natural family members in order to ensure best practice outcomes for children and young people in care.

Hospital-based education support for students with chronic health conditions

2016 ◽  
Vol 40 (2) ◽  
pp. 213 ◽  
Author(s):  
Liza J. Hopkins
Keyword(s):  
Young People ◽  
Support Services ◽  
Best Practice ◽  
Good Practice ◽  
Theory And Practice ◽  
Health Conditions ◽  
Educational Support ◽  
Children And Young People ◽  
Published Evidence ◽  
Education Support

Objective To examine the evidence for best practice in educational support to hospitalised students and describe the existing supports available across each Australian state and territory. Methods A descriptive approach to the diversity of current practice and a review of the published evidence for best practice. Results We have constructed a model of best-practice in education support to hospitalised students. We found that education support services in each state met some of the criteria for best practice, but no one state service met all of the criteria. Conclusions All Australian states and territories make provision for hospitalised students to continue with their education, however the services in some states are closer to the best-practice model than others. What is known about the topic? It is well known that children and young people living with health conditions are at higher risk of educational underachievement and premature disengagement from school than their healthy peers. Although each state and territory across Australia offers some form of educational support to students during periods of hospitalisation, this support differs widely in each jurisdiction in fundamentals such as which students are eligible for support, where the support is delivered, how it is delivered and who coordinates the support. Published evidence in the literature suggests that the elements of good practice in education support have been well identified but, in practice, lack of policy direction can hinder the implementation of coordinated support. What does this paper add? This paper draws together the different models in place to support students in hospital in each state and territory and identifies the common issues that are faced by hospital education support services, as well as identifying areas where practice differs across settings. It also identifies the elements of good practice from the literature and links the elements of theory and practice to present a model of education support that addresses the needs of students with health conditions in an integrated and child-centred way. What are the implications for practitioners? Education support has developed over many decades in a variety of different forms across the states and territories of Australia. This paper brings together for the first time the published evidence for good practice in this area with existing models of practice to identify ways in which both healthcare professionals and education professionals can work together to improve the health, well being and education of children and young people living with health conditions.

scholarly journals The Relative Merits of an Individualized Versus a Generic Approach to Rating Functional Performance in Childhood Dystonia

Children ◽  
2020 ◽  
Vol 8 (1) ◽  
pp. 7
Author(s):  
Hortensia Gimeno ◽  
Jessica Farber ◽  
Jessica Thornton ◽  
Helene Polatajko
Keyword(s):  
Young People ◽  
Movement Disorders ◽  
Best Practice ◽  
Rating Scale ◽  
Childhood Onset ◽  
Post Intervention ◽  
Children And Young People ◽  
Change Scores ◽  
Significant Difference ◽  
And Performance

Aims. The Performance Quality Rating Scale (PQRS) is an observational measure that captures performance at the level of activity and participation. Developed for use with the Cognitive Orientation to daily Occupational Performance (CO-OP), it is a highly individualized approach to measurement. CO-OP is currently being studied in childhood-onset hyperkinetic movement disorders (HMD) and deep brain stimulation. The purpose of this study was to compare two different approaches to rating performance, generic (PQRS-G) and individualized (PQRS-I), for children with childhood-onset hyperkinetic movement disorders (HMD) including dystonia. Method. Videotaped activity performances, pre and post intervention were independently scored by two blind raters using PQRS-G PQRS-I. Results were examined to determine if the measures identified differences in e performance on goals chosen by the participants and on change scores after intervention. Dependent t-tests were used to compare performance and change scores. Results. The two approaches to rating both have moderate correlations (all data: 0.764; baseline: 0.677; post-intervention: 0.725) and yielded some different results in capturing performance. There was a significant difference in scores at pre-intervention between the two approaches to rating, even though post-intervention score mean difference was not significantly different. The PQRS-I had a wider score range, capturing wider performance differences, and greater change between baseline and post-intervention performances for children and young people with dystonic movement. Conclusions. Best practice in rehabilitation requires the use of outcome measures that optimally captures performance and performance change for children and young people with dystonic movement. When working with clients with severe motor-performance deficits, PQRS-I appears to be the better approach to capturing performance and performance changes.

scholarly journals Policy addressing suicidality in children and young people: a scoping review protocol

BMJ Open ◽  
2018 ◽  
Vol 8 (9) ◽  
pp. e023153 ◽  
Author(s):  
Lynne Gilmour ◽  
Edward Duncan ◽  
Margaret Maxwell
Keyword(s):  
Public Health ◽  
Young People ◽  
Scoping Review ◽  
Best Practice ◽  
Data Extraction ◽  
Health Issue ◽  
Public Health Issue ◽  
Policy Documents ◽  
Children And Young People ◽  
Mesh Terms

IntroductionSuicide is one of the leading causes of death among children and young people globally and a major public health issue. Government policies determine how much recognised health issues are prioritised and set the context for investment, development and delivery of services. A review of policies concerning children and young people who are suicidal could shed light on the extent that this public health issue is prioritised and highlight examples of best practice in this area. There has never been a review to explore how policy worldwide addresses the specific needs of this vulnerable population. This review will map the key policy documents and identify their relevance to the review question: how does policy address the treatment and care of children and young people who experience suicidality? (international, national (UK) and local (Scotland)).MethodologyEmploying scoping review methodological guidance a systematic and transparent approach will be taken. Preliminary searches will facilitate the identification of MeSh terms, subject headings, individual database and platform nuances. A full search strategy will be created to search five databases: CINAHL, PsychInfo, Medline, Web of Science and Cochrane. Government and other key agency websites (eg, WHO, Unicef) will be searched to identify policy documents. The reference lists of identified documents will be checked. A second reviewer will independently screen and cross validate eligible studies for final inclusion. A data extraction template will then be used to extract key information. We will report our findings using narrative synthesis and tabulate findings, by agreed key components.Ethics and disseminationEthical approval is not required to conduct a scoping review. We will disseminate the findings through a peer-reviewed publication and conference presentation.

scholarly journals THE USE OF HORTICULTURAL THERAPY IN WORK WITH CHILDREN AND YOUTH WITH SPECIAL EDUCATIONAL NEEDS

2021 ◽  
pp. 36-45
Author(s):  
Iryna Reznichenko
Keyword(s):  
Social Support ◽  
Young People ◽  
Motor Skills ◽  
Educational Needs ◽  
Children And Youth ◽  
Basic Knowledge ◽  
Psychological State ◽  
Special Educational Needs ◽  
Horticultural Therapy ◽  
Children And Young People

The article reveals the problem of social support for children and young people with special educational needs. The necessity of application of horticultural therapy as a special direction of psychosocial, labor and pedagogical rehabilitation of children and young people with special educational needs by involving them in work with plants is substantiated. It is proved that the use of horticultural therapy makes it possible to effectively implement the process of rehabilitation and adaptation of children and teenagers with special educational needs, to provide social assistance to the family raising such children, to reveal additional possibilities of the child’s personality through his interaction with the plant world, to enrich child’s social and adaptive experience, to develop the emotional and volitional sphere. The technology is based on the child's interaction with nature as a process of constant empathy and complicity.Working with plants, a child feels this tiny part of the beautiful nature. By taking care of flowers, children overcome their isolation, insecurity and simply enjoy life. This very moment is very important in rehabilitation.The foreign experience of using horticultural therapy is analyzed. On the basis of the theoretical analysis of foreign and domestic works horticultural therapy is justified as an effective technology in working with children and young people with special educational needs.The main indicators of the effectiveness of the technology are: improvement of somatic and psychoneurological health; increasing level of cognitive activity, formation and development of communication skills; improvement of motor skills; formation of basic knowledge and skills of caring for indoor and garden plants in children; increasing level of parental competence in building effective interaction with the child.Using horticultural therapy technology in the process of working with children and youth with special educational needs provides correction and development of fine motor skills, cognitive, emotional-volitional and personal spheres; promotes the social status of children with special educational needs by including them in socially useful activities; promotes the all-round harmonious development of children and youth, stabilizes their psychological state, further helps them to realize themselves in society. Keywords: horticultural therapy, children and youth, special educational needs, social support, rehabilitation, technology, socialization, adaptation.

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