Family-Centered Telehealth Supporting Motor Skills and Activity in Individuals With Rett Syndrome

2022 ◽  
pp. 147-171
Author(s):  
Meir Lotan ◽  
Michelle Stahlhut ◽  
Alberto Romano ◽  
Jenny Downs ◽  
Cochavit Elefant
Keyword(s):  
Physical Function ◽  
Rett Syndrome ◽  
Motor Skills ◽  
Severe Disability ◽  
Rehabilitation Services ◽  
Local Resources ◽  
Poor Access ◽  
Management Plans ◽  
Cost Efficient ◽  
Family Centered

Rett syndrome is a rare genetically caused condition associated with severe disability and impaired motor functions. Local therapists typically see small numbers of affected individuals, and this limits their capacity to gain experience. Telehealth is being used increasingly to counter poor access to rehabilitation services. Moreover, there is a need to develop management plans that support individuals with Rett syndrome over their lifespan. Three projects in which telehealth support was provided by therapists experienced in Rett syndrome and supported by available local resources are presented in this chapter. The three projects responded to locally identified needs in a cost-efficient way and empowered those working with people with Rett syndrome to maintain and improve their clients' physical function and activity. This chapter will discuss the conceptual underpinnings of delivering a service using a telehealth approach and describe the results and the strategies implemented in the projects mentioned above.

scholarly journals Fostering sustainable tribal economies in a time of climate change

2020 ◽  
Author(s):  
Ema Maria Bargh ◽  
SL Douglas ◽  
Annie Te One
Keyword(s):  
Climate Change ◽  
Environmental Management ◽  
New Zealand ◽  
Indigenous Peoples ◽  
Geographical Society ◽  
Local Resources ◽  
Energy Needs ◽  
Management Plans

In this article, we explore how Maori tribal organisations are responding to calls by other Indigenous peoples to become more sustainable in a time of climate change. From a close examination of tribal Environmental Management Plans, we move to a specific case study in the Bay of Plenty area, Ngati Kea/Ngati Tuara. Ultimately, we suggest that many tribal organisations are seeking to respond to climate change and transition to becoming producers of their own food and energy needs, and are often articulating these responses in relation to specific local resources and contexts. © 2014 New Zealand Geographical Society.

The Clinical Recognition and Differential Diagnosis of Rett Syndrome

1988 ◽  
Vol 3 (1_suppl) ◽  
pp. S6-S16 ◽  
Author(s):  
Edwin Trevathan ◽  
Sakkubai Naidu
Keyword(s):  
Early Childhood ◽  
Rett Syndrome ◽  
Motor Skills ◽  
English Literature ◽  
Hand Movement ◽  
Signs And Symptoms ◽  
Infantile Autism ◽  
Gross Motor Skills ◽  
Clinical Criteria ◽  
Incorrect Diagnosis

Rett syndrome (RS) is characterized by progressive loss of intellectual functioning and fine and gross motor skills as well as development of stereotypic hand movement abnormalities, occurring after 6 to 18 months of normal development. Rett syndrome has been previously reported only in girls, but the possibility of the syndrome existing in male children cannot be currently excluded. Although the syndrome is thought to be relatively common, it was only described in the English literature 5 years ago. There is currently no marker for the syndrome; diagnosis is based on clinical criteria. The newly developed diagnostic criteria for RS are reviewed, with special attention given to the historical aspects of the diagnosis in the prenatal, perinatal, neonatal, and early childhood periods. Rett syndrome is characterized by a predictable, orderly progression of signs and symptoms. Four stages of RS have been described; each stage has special characteristics and offers different diagnostic challenges for the neurologist. Infantile autism is the most common incorrect diagnosis made for children with RS. The simultaneous regression of both motor and language skills, as well as the stereotypic hand movements, hyperventilation, bruxism, and seizures in early childhood are all typical in RS and help distinguish RS from infantile autism. (J Child Neurol 1988;3(Suppl):S6-S16).

scholarly journals Fostering sustainable tribal economies in a time of climate change

2020 ◽  
Author(s):  
Ema Maria Bargh ◽  
SL Douglas ◽  
Annie Te One
Keyword(s):  
Climate Change ◽  
Environmental Management ◽  
New Zealand ◽  
Indigenous Peoples ◽  
Geographical Society ◽  
Local Resources ◽  
Energy Needs ◽  
Management Plans

In this article, we explore how Maori tribal organisations are responding to calls by other Indigenous peoples to become more sustainable in a time of climate change. From a close examination of tribal Environmental Management Plans, we move to a specific case study in the Bay of Plenty area, Ngati Kea/Ngati Tuara. Ultimately, we suggest that many tribal organisations are seeking to respond to climate change and transition to becoming producers of their own food and energy needs, and are often articulating these responses in relation to specific local resources and contexts. © 2014 New Zealand Geographical Society.

scholarly journals Disparities in Physical and Psychological Symptoms in Hospitalized African American and White Persons with Dementia

2020 ◽  
pp. 089826432098321
Author(s):  
Marie Boltz ◽  
Rhonda BeLue ◽  
Barbara Resnick ◽  
Ashley Kuzmik ◽  
Elizabeth Galik ◽  
...  
Keyword(s):  
African American ◽  
Depressive Symptoms ◽  
Physical Function ◽  
Racial Differences ◽  
Psychological Symptoms ◽  
Secondary Data ◽  
Analysis Of Covariance ◽  
Future Research ◽  
Trial Testing ◽  
Family Centered

Objectives: This study examined differences in physical function, delirium, depressive symptoms, and behavioral and psychological symptoms of dementia (BPSD) in hospitalized African American and white older adults with dementia. Methods: This secondary data analysis using baseline data from an ongoing trial testing family-centered function-focused care included African American ( n = 159) and white persons ( n =135) with dementia. Results: A multivariate analysis of covariance showed that controlling for relevant demographic and health characteristics, African Americans with dementia had lower physical function, more delirium, and more depressive symptoms upon admission than white participants. There were no significant differences in BPSD between African American and white persons. Discussion: To our knowledge, this is the first study to examine racial differences in admission symptoms of hospitalized persons with dementia. While the findings are preliminary, they can be used to inform the design of future research, including identifying the causes of disparities.

scholarly journals SALENG ABENTHO: A STRATEGY TO REDUCE COSTS OF LOCAL RESOURCES-BASED MADURESE CORN FARMING

2021 ◽  
Vol 10 (3) ◽  
pp. 487
Author(s):  
Hisnuddin Lubis ◽  
Nely Rohmatillah
Keyword(s):  
Social Resources ◽  
Positive Trend ◽  
Local Resources ◽  
Strategic Model ◽  
Qualitative Descriptive ◽  
Descriptive Approach ◽  
Farmer Groups ◽  
Cost Efficient ◽  
Food Needs ◽  
Depth Interviews

Madurese corn is one of the leading agricultural commodities of Madura. Its opportunity is quite prospective, given that the national corn-based industry shows a positive trend from year to year. The problem is that the corn cultivation by the Madurese people is merely oriented to serving the purpose of meeting food needs rather than a profit-oriented one. This is because the planting costs are relatively expensive with a thin profit margin. Therefore, a cost-efficient strategy for local resources-based Madurese Corn Farming is required. The present study is expected to produce a strategic model for using local resources to reduce the costs of Madurese corn farming. This study was carried out in Gapurana Village, Kalianget Sub-district of Sumenep Regency Madura, using the qualitative descriptive approach. Data were collected by observation and in-depth interviews and analyzed using the Mils and Huberman model. The results showed that local resources, especially social resources in the form of solidarity ‘saleng abentho’, effectively reduced the costs of Madurese corn farming. This resource could be managed and institutionalized by involving farmer groups and policies to realize an industrial-scale Madurese Corn Farming.

scholarly journals Crisis Brings Innovative Strategies: Collaborative Empathic Teleintervention for Children with Disabilities during the COVID-19 Lockdown

2021 ◽  
Vol 18 (4) ◽  
pp. 1749
Author(s):  
Verónica Schiariti ◽  
Robin A. McWilliam
Keyword(s):  
Children With Disabilities ◽  
Early Years ◽  
Rehabilitation Services ◽  
The Novel ◽  
Educational Tool ◽  
Innovative Strategies ◽  
Daily Routines ◽  
The Social ◽  
Public Health Strategies ◽  
Family Centered

Background: While coronavirus disease 2019 (COVID-19) continues to spread across the globe, public health strategies—including the social distancing measures that many countries have implemented— have caused disruptions to daily routines. For children with disabilities and their families, such measures mean a lack of access to the resources they usually have through schools and habilitation or rehabilitation services. Health emergencies, like the current COVID-19 pandemic, require innovative strategies to ensure continuity of care. The objective of this perspective paper is to propose the adoption of two innovative strategies for teleintervention. Methods: The novel strategies include: (1) to apply the principles of the Routines-Based Model beyond the early years of development, and (2) to adopt My Abilities First—which is a novel educational tool promoting an abilities-oriented approach in healthcare encounters. Results: In the context of COVID-19, and using accessible language, the content of the paper highlights what is important for families and individuals with disabilities, and how the proposed novel strategies could be useful delivering remote support. Conclusions: The principles of the Routines-Based Model and My Abilities First are universal and facilitate collaborative, empathic, family-centered teleintervention for children and youth with disabilities during and post the COVID-19 lockdown.

A semi-standardized music therapy intervention for girls with Rett syndrome: A descriptive essay

2022 ◽  
pp. 1-12
Author(s):  
Marina Luisa Rodocanachi Roidi ◽  
Kumiko Toshimori ◽  
Angelo Colletti ◽  
Enrico Ripamonti ◽  
Ivana Olivieri
Keyword(s):  
Music Therapy ◽  
Rett Syndrome ◽  
Subjective Experience ◽  
Neurodevelopmental Disorder ◽  
Rehabilitation Medicine ◽  
Severe Disabilities ◽  
Functional Impairments ◽  
Wide Range ◽  
Affect Attunement ◽  
Family Centered

Rett syndrome (RTT) is a severe neurodevelopmental disorder resulting in a wide range of functional impairments and therefore greatly impacts the lives of both patients and their families. While genetic and medical aspects have been studied for several decades, rehabilitation intervention research is still in its infancy. In this study, the investigating researchers have presented a rehabilitative framework by using music therapy for girls with RTT. This model is founded upon the use of music therapy in light of Stern’s proposal of subjective experience and affect attunement; it also refers to Rosenbaum’s family-centered rehabilitation medicine perspective. This study both describes the theory behind this intervention and presents a newly developed outcome measure. This novel tool may have future clinical and research applications. Music therapy for patients with RTT has not been well researched yet, and as a result, is not universally recommended. However this study’s findings suggest that music therapy is an important component of multidisciplinary therapy. Further collaborative research should be encouraged in order to study and implement the use of music therapy in the treatment of severe disabilities. Projects such as the Enablin+program with the support from the European Commission constitute fundamental tools in promoting integrative medical research and international networks.

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