Review: ADHD impairs quality of life, but children and young people with ADHD perceive less impairment than parents

2010 ◽  
Vol 13 (3) ◽  
pp. 76-76 ◽  
Author(s):  
S. Cortese
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Children And Young People

Co-Design and Open Trial of Starship Rescue, a Cognitive Behavior Therapy, Biofeedback, and Game-Based eHealth Intervention to Treat Anxiety in Children and Young People with Long-Term Physical Conditions (Preprint)

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Young People ◽  
Preliminary Evidence ◽  
Children And Young People ◽  
Physical Conditions ◽  
System Usability Scale ◽  
Ehealth Intervention

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

scholarly journals The development of a new measure of quality of life for children with congenital cardiac disease

2006 ◽  
Vol 16 (2) ◽  
pp. 165-172 ◽  
Author(s):  
Susan Macran ◽  
Yvonne Birks ◽  
Jonathan Parsons ◽  
Patricia Sloper ◽  
Geoff Hardman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Cardiac Disease ◽  
Clinical Context ◽  
Children And Young People ◽  
The United Kingdom ◽  
Congenital Cardiac Disease ◽  
Reliable Instrument ◽  
Health Related

The purpose of the study was to develop a questionnaire measuring health-related R1 quality of life for children and adolescents with congenital heart disease, the ConQol, that would have both clinical and research applications. We describe here the process of construction of a questionnaire, the piloting and the development of a weighted scoring system, and data on the psychometric performance of the measure in a sample of 640 children and young people recruited via 6 regional centres for paediatric cardiology from across the United Kingdom. The ConQol has two versions, one designed for children aged from 8 to 11 years, and the other for young people aged from 12 to 16 years. Initial findings suggest that it is a valid and reliable instrument, is acceptable to respondents, and is simple to administer in both a research and clinical context.

scholarly journals HEALTH-RELATED FAMILY QUALITY OF LIFE WHEN A CHILD OR YOUNG PERSON HAS A DISABILITY

2018 ◽  
Vol 9 (4) ◽  
pp. 49-74 ◽  
Author(s):  
Margaret R. Kyrkou
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Emotional Health ◽  
Family Members ◽  
Young Person ◽  
Family Quality Of Life ◽  
Children And Young People ◽  
People With Disability ◽  
Health Related

Parents of a child or young person with disability face not only the same challenges as parents of typically developing children and young people, but also the extra challenges of supporting the child or young person with disability in such a way as to maximise both their own quality of life (QOL) and family quality of life (FQOL) for all family members. Health-related quality of life (HRQOL) encompasses not only physical health but also mental and emotional health, equally important for FQOL. This article builds on information from previous publications, and illustrates relevant issues and the innovative methods parents, caregivers, and professionals have devised to enhance the HRQOL for children and young people with disability, and to improve FQOL. The author draws upon her personal lived experiences of having two daughters, the eldest an adult with disability, as well as being the medical consultant and manager of a newly created health unit tasked with supporting students with disability, who often have high health needs, in educational settings. The health conditions selected are those that have a major impact, not only on the young person with disability but also on family members. Vignettes, all deidentified true stories, will be included to illustrate the multiple issues faced by children and young people with disability, their families and extended families, and treating clinicians. These stories will hopefully resonate with families in particular.

scholarly journals Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

2020 ◽  
Vol 34 (6) ◽  
pp. 731-775 ◽  
Author(s):  
Johanna Taylor ◽  
Alison Booth ◽  
Bryony Beresford ◽  
Bob Phillips ◽  
Kath Wright ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
Young People ◽  
Current Evidence ◽  
Children And Young People ◽  
Factors Affecting ◽  
Paediatric Palliative Care ◽  
The Impact

Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

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