Assistive Technology to Promote Adaptive Skills in Children and Adolescents With Rett Syndrome

2022 ◽  
pp. 131-146
Author(s):  
Donatella Ciarmoli
Keyword(s):  
Quality Of Life ◽  
Rett Syndrome ◽  
Assistive Technologies ◽  
Genetic Syndromes ◽  
Motor Impairments ◽  
Use Of Technology ◽  
Adaptive Responding ◽  
Clinical Conditions ◽  
The Impact

Rett syndrome is classified within the rare genetic syndromes, characterised by intellectual delays, extensive motor impairments, lack of speech and communication difficulties, sensorial deficits, and problems in adaptive responding. That clinical conditions may be deleterious on their social image, status, and quality of life. A practice for addressing this problem is technology-based interventions. The use of assistive technologies, in particular microswitches, with children with RTT has been shown to effectively change the impact on their quality of life, facilitating access to recreational activities and improving their performance. Through the use of technology-aided programs, a child with RTT and multiple disabilities will be ensured with an independent access to positive stimulation. In this chapter, a selective literature review was carried out considering Rett Syndrome, assistive technologies, quality of life, and rare genetic syndromes. Empirical data demonstrated the effectiveness and suitability of interventions with AT, allowing participants to increase their level of independence.

Assistive Technology to Promote Adaptive Responding and Reduce Challenging Behaviors in Children and Young Adults With Rare Genetic Syndrome

2021 ◽  
pp. 253-271
Author(s):  
Fabrizio Stasolla ◽  
Donatella Ciarmoli
Keyword(s):  
Young Adults ◽  
Assistive Technology ◽  
Challenging Behaviors ◽  
Genetic Syndromes ◽  
Motor Impairments ◽  
Genetic Syndrome ◽  
Communication Difficulties ◽  
Children And Young Adults ◽  
Adaptive Responding ◽  
Clinical Conditions

Children, adolescents, and young adults with rare genetic syndromes, neurodevelopmental disorders, and multiple disabilities may experience significant problems while dealing with everyday life environmental requests. Besides extensive motor impairments, intellectual disabilities, and communication difficulties, they may exhibit challenging behaviors. Clinical conditions may be deleterious on their social image, status, and quality of life. A practical way to tackle this issue is represented by assistive technology-based interventions. A narrative review on the newest empirical contributions available in the literature over last five years (i.e., 2015-2020) was presented. Nineteen studies were reviewed. Five main categories of studies were identified, namely (1) adaptive responding, (2) executive functions, (3) communication, (4) gait and locomotion, and (5) challenging behaviors. Results were satisfactory although occasional failures were evidenced. Some helpful insights were emphasized, and future directions for both research and practice were critically discussed.

scholarly journals The quality of life in girls with Rett syndrome

2016 ◽  
Vol 8 (1) ◽  
Author(s):  
Lucia Parisi ◽  
Teresa Di Filippo ◽  
Michele Roccella
Keyword(s):  
Quality Of Life ◽  
Rett Syndrome ◽  
Research Quality ◽  
Entire Family ◽  
Severe Intellectual Disability ◽  
Common Causes ◽  
The Central Nervous System ◽  
Considerable Impact ◽  
The Impact

Nowadays, quality of life is receiving an increasing attention in all scientific areas. Rett syndrome (RTT) is a rare neurological development, affecting mainly females. The congenital disease affects the central nervous system, and is one of the most common causes of severe intellectual disability. The aim of our study is to evaluate the effect of RTT on the quality of life of people who are affected. Both parents of 18 subjects, all female, diagnosed with RTT, took part in the research. Quality of life was assessed using the Italian version of the Impact of Childhood Illness Scale. This scale consists of 30 questions that investigate the effect of illness on children, parents and families. For each question, the parent was asked to rate two variables: frequency and importance. Another questionnaire was administered to obtain medical history, diagnostic and therapeutic data of the persons with RTT. Our data show that RTT has a considerable impact on both the child’s development and the entire family. Parents’ answers demonstrated that their child’s illness had consequences for the child and how the family coped with it. For this reason, attention should be directed at psychological and social aspects, as well as attitudes, manners, reactions and effects such disturbances can have on the entire family.

The Impact of Assistive Technologies on Quality of Life and Psychosocial Well-Being

2020 ◽  
pp. 161-176
Author(s):  
Michael R. Schwartz ◽  
Paul Oppold
Keyword(s):  
Quality Of Life ◽  
Gold Standard ◽  
Well Being ◽  
Assistive Technologies ◽  
Health And Illness ◽  
Related Quality ◽  
Health Related ◽  
No Gold Standard ◽  
The Impact

Health-related quality of life is a comprehensive term to describe a person's experiences of health and illness. Quality of life (QOL) is a dynamic psychological construct encompassing interacting subjective and objective dimensions; thus, it is not directly observable. There is no gold standard for measuring quality of life due to the differing interests of doctors, caregivers, patients, and researchers. This chapter examines the research needs in the area of improving QoL through the proper implementation of AT. The authors also make recommendations for incorporating the needs of users and caregivers in the design, deployment, and use of AT to reduce device abandonment.

The Impact of Assistive Technologies on Quality of Life and Psychosocial Well-Being

2022 ◽  
pp. 713-725
Author(s):  
Michael R. Schwartz ◽  
Paul Oppold
Keyword(s):  
Quality Of Life ◽  
Gold Standard ◽  
Well Being ◽  
Assistive Technologies ◽  
Health And Illness ◽  
Related Quality ◽  
Health Related ◽  
No Gold Standard ◽  
The Impact

Health-related quality of life is a comprehensive term to describe a person's experiences of health and illness. Quality of life (QOL) is a dynamic psychological construct encompassing interacting subjective and objective dimensions; thus, it is not directly observable. There is no gold standard for measuring quality of life due to the differing interests of doctors, caregivers, patients, and researchers. This chapter examines the research needs in the area of improving QoL through the proper implementation of AT. The authors also make recommendations for incorporating the needs of users and caregivers in the design, deployment, and use of AT to reduce device abandonment.

scholarly journals Psychosocial Impact of Assistive Technologies for Mobility and Their Implications for Active Ageing

2016 ◽  
Author(s):  
Anabela Martins ◽  
João Pinheiro ◽  
Beatriz Farias ◽  
Jeffrey Jutai
Keyword(s):  
Quality Of Life ◽  
Positive Impact ◽  
Psychosocial Impact ◽  
Assistive Technologies ◽  
Community Dwelling ◽  
World Health ◽  
Active Ageing ◽  
Health Organization ◽  
The Impact

Active ageing is defined as the process of optimizing opportunities for physical, social and mental health to enable older people to take an active part in society without discrimination and to enjoy an independent and good quality of life. The World Health Organization assumed this as a process for increasing and maintaining an individual’s participation in activities to enhance his/her quality of life. In this survey, the authors addressed the following question: “Is assistive technology (AT) for mobility contributing to enhancement of lifelong capacity and performance?”. From June 2015 until February 2016, 96 community dwelling adults, AT users for mobility (powered wheelchairs, manual wheelchairs, lower limb prostheses, walkers, crutches and canes), aged 45-97, mean 67.02 +/- 14.24 years old, 56.3% female, were interviewed using the Psychosocial Impact of Assistive Devices Scale (P-PIADS), the Activities and Participation Profile related to Mobility (APPM) and demographics, clinical and questions about AT use and training. The participants’ profiles revealed moderate limitation and restrictions in participation, measured by the APPM (2.03). Most participants showed positive impact of AT; average scores obtained from the P-PIADS subscales were: Self-esteem 0.62, Competency 1.11 and Adaptability 1.10. P-PIADS total was 0.96, with the powered wheelchair users scoring the highest (1.53) and the walker users scoring the lowest (0.73). All subscales and P-PIADS total were positively correlated with the activities and participation profile. There was no relation between age and the psychosocial impact of AT or activities and participation profile. These results encourage the authors to follow these participants up for a lifelong intervention. To accomplish that aim, currently, the protocol is implemented at the AT prescribing centers in Coimbra, Portugal in order to assess the impact of AT on participation in society, one of the domains of the Active Ageing Index, a new analytical tool to help policy makers in developing policies for active and healthy ageing. 

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

Health and Quality of Life in PTSD: What is the Impact of Co-Occurring Depression?

2008 ◽  
Author(s):  
Jennifer S. Fabritius ◽  
Lisa S. Doane ◽  
Aileen M. Echiverri ◽  
Shoshana Y. Kahana ◽  
Joshua D. McDavid ◽  
...  
Keyword(s):  
Quality Of Life ◽  
The Impact
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