Development of the Quality of Life in Youth Services Scale (QOLYSS): Content-Related Validity Evidence Based on Adolescents’ and Expert Reviewers’ Perspectives

Author(s):  
Chris Swerts ◽  
Laura E. Gómez ◽  
Jessica De Maeyer ◽  
Goedele De Nil ◽  
Wouter Vanderplasschen
2020 ◽  
Vol 29 (4) ◽  
pp. 685-690
Author(s):  
C. S. Vanaja ◽  
Miriam Soni Abigail

Purpose Misophonia is a sound tolerance disorder condition in certain sounds that trigger intense emotional or physiological responses. While some persons may experience misophonia, a few patients suffer from misophonia. However, there is a dearth of literature on audiological assessment and management of persons with misophonia. The purpose of this report is to discuss the assessment of misophonia and highlight the management option that helped a patient with misophonia. Method A case study of a 26-year-old woman with the complaint of decreased tolerance to specific sounds affecting quality of life is reported. Audiological assessment differentiated misophonia from hyperacusis. Management included retraining counseling as well as desensitization and habituation therapy based on the principles described by P. J. Jastreboff and Jastreboff (2014). A misophonia questionnaire was administered at regular intervals to monitor the effectiveness of therapy. Results A detailed case history and audiological evaluations including pure-tone audiogram and Johnson Hyperacusis Index revealed the presence of misophonia. The patient benefitted from intervention, and the scores of the misophonia questionnaire indicated a decrease in the severity of the problem. Conclusions It is important to differentially diagnose misophonia and hyperacusis in persons with sound tolerance disorders. Retraining counseling as well as desensitization and habituation therapy can help patients who suffer from misophonia.


Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.


2016 ◽  
Vol 31 (2) ◽  
pp. 285-319 ◽  
Author(s):  
Kathleen A. Fox ◽  
John A. Shjarback

While some attention has been paid to “what works” to reduce crime, little is known about the effectiveness of programs designed to reduce victimization. This study systematically reviews 83 program evaluations to identify what works to (a) reduce victimization, (b) enhance beliefs/attitudes about victims, and (c) improve knowledge/awareness of victimization issues. Evidence-based findings are organized around 4 major forms of victimization, including bullying, intimate partner violence, sexual abuse, and other general forms of victimization. Determining whether certain types of programs can reduce the risk of victimization has important implications for improving people’s quality of life. Based on our findings, we offer several promising directions for the next generation of research on evaluating victimization programs. The goal of this study is to improve the strength of future program evaluations, replications, and other systematic reviews as researchers and practitioners continue to learn what works to reduce victimization.


2010 ◽  
Vol 06 (02) ◽  
pp. 14
Author(s):  
Julie L Ryan ◽  

For over 30 years, chemotherapy-induced nausea and vomiting have been the most severe and troublesome symptoms for cancer patients receiving chemotherapy. Unresolved chemotherapy-induced nausea and vomiting can lead to metabolic disorders, dehydration, nutritional depletion and oesophageal tears, and can reduce the daily functioning and quality of life of and interfere with treatment schedules. Despite the widespread use of antiemetics, chemotherapy-induced nausea continues to be problematic. Unlike vomiting, nausea is a subjective and unobservable phenomenon, making it extremely difficult to accurately assess and treat. Current research suggests that management of chemotherapy-induced nausea should focus on treating the symptoms before they occur rather than after they develop. This article highlights evidence-based interventions for the treatment of chemotherapy-related nausea.


Author(s):  
Brenda Smith Myles ◽  
Jan Rogers ◽  
Amy Bixler Coffin ◽  
Wendy Szakacs ◽  
Theresa Earles-Vollrath

Social competence includes a complex set of skills that impacts quality of life across all environments: home, school, employment, and the community. Elements that impact social competence, such as theory of mind, weak central coherence, regulation and relationship building, must be taught to individuals with disabilities, including those with autism spectrum disorder. Evidence-based interventions that incorporate low, medium and high technology have the potential to support skill development in social competence in a meaningful manner. This chapter reviews the concept known as social competence and offers a variety of practices to support its development.


2005 ◽  
Vol 14 (4) ◽  
pp. 294-303 ◽  
Author(s):  
Sandra B. Dunbar

Use of implantable cardioverter defibrillators has become standard therapy for patients at high risk for life-threatening ventricular arrhythmias. Although acceptance of the device is generally high among patients and their families, quality of life and psychosocial issues associated with use of the defibrillators deserve greater attention to improve outcomes. Psychosocial issues, their ramifications, and theory-and evidence-based approaches to improving outcomes are described.


2003 ◽  
Vol 3 ◽  
pp. 1117-1127 ◽  
Author(s):  
Soren Ventegodt ◽  
Niels JØrgen Andersen ◽  
Joav Merrick

In this paper we present a new research paradigm for alternative, complementary, and holistic medicine — a low-cost, effective, and scientifically valid design for evidence-based medicine. Our aim is to find the simplest, cheapest, and most practical way to collect data of sufficient quality and validity to determine: (1) which kinds of treatment give a clinically relevant improvement to quality of life, health, and/or functionality; (2) which groups of patients can be aided by alternative, complementary, or holistic medicine; and (3) which therapists have the competence to achieve the clinically relevant improvements. Our solution to the problem is that a positive change in quality of life must be immediate to be taken as caused by an intervention. We define “immediate” as within 1 month of the intervention. If we can demonstrate a positive result with a group of chronic patients (20 or more patients who have had their disease or state of suffering for 1 year or more), who can be significantly helped within 1 month, and the situation is still improved 1 year after, we find it scientifically evidenced that this cure or intervention has helped the patients. We call this characteristic curve a “square curve”. If a global, generic, quality-of-life questionnaire like QOL5 or, even better, a QOL-Health-Ability questionnaire (a quality-of-life questionnaire combined with a self-evaluated health and ability to function questionnaire) is administered to the patients before and after the intervention, it is possible to document the effect of an intervention to a cost of only a few thousand Euros/USD. A general acceptance of this new research design will solve the problem that there is not enough money in alternative, complementary, and holistic medicine to pay the normal cost of a biomedical Cochrane study. As financial problems must not hinder the vital research in nonbiomedical medicine, we ask the scientific community to accept this new research standard.


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