Kids’ Life and Times: using an Internet survey to measure children’s health-related quality of life

Objective
To examine the psychometric properties of an internet version of a children and young person's quality of life measure originally designed as a paper questionnaire.

Methods
Participants were 3,440 10 and 11 year old children in Northern Ireland who completed the KIDSCREEN-27 online as part of a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and the questions appeared on screen and were read aloud by actors.

Results
Exploratory principal component analysis of the online version of the questionnaire supported the existence of five components in line with the paper version. The items loaded on the components that would be expected based on previous findings with five domains - physical well-being,psychological well-being, autonomy and parents, social support and peers and school environment.Internal consistency reliability of the five domains was measured using Cronbach's alpha and the results suggested that the scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version.

Conclusions
These results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within an online survey are comparable to those reported in the literature for the paper version.

Internet use and psychological wellbeing among 10 and 11 year old children

This paper uses data from the 2009 Kids’ Life and Times Survey, involving 3657 children aged 10 or 11 years old in Northern Ireland. The survey indicated high levels of use of Internet applications, including social-networking sites and online games. Using the KIDSCREEN-27 instrument, the data indicate that the use of social-networking sites and online games is related to poorer psychological well-being among girls, but not boys. Boys and girls who experience “cyberbullying” have poorer psychological well-being. This association between psychological well-being and some Internet applications merits more attention in future research and policy development.

Internet Use and Psychological Well-being among 10-year-old and 11-year-old Children

This paper uses data from the 2009 Kids’ Life and Times Survey, involving 3657 children aged 10 or 11 years old in Northern Ireland. The survey indicated high levels of use of Internet applications, including social-networking sites and online games. Using the KIDSCREEN-27 instrument, the data indicate that the use of social-networking sites and online games is related to poorer psychological well-being among girls, but not boys. Boys and girls who experience “cyberbullying” have poorer psychological well-being. This association between psychological well-being and some Internet applications merits more attention in future research and policy development.

Happiness and Well-Being of Young Carers: Extent, Nature and Correlates of Caring Among 10 and 11 Year Old School Children

Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. For many of these children and young people, caring has been shown to have a detrimental effect on their lives. For example, caring at a young age appears to be associated with poor health and well-being, bullying and poorer educational outcomes. However, previous research has tended to be retrospective, carried out using small surveys of secondary school-aged children or to use qualitative methods with young people associated with caring projects. In contrast, little is known about the extent and nature of caring undertaken by younger children. This paper reports findings from a random sample survey of 10 and 11 year old children in the final year of their primary school education. 4,192 children completed the Kids’ Life and Times (KLT) online survey in 2011. Twelve percent of respondents to KLT said they helped look after someone in their household who was sick, elderly or disabled. Supporting previous qualitative research, this survey showed that children who were carers had poorer health and well-being, reported less happiness with their lives, were more likely to be bullied at school and had poorer educational aspirations and outcomes than their peers who were not carers. These findings suggest that teachers need to discuss the issue of caring with children in the classroom in a general and supportive way so that young carers feel able to confide in them and seek support if they need it.

Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: Benchmarking Autism Services Efficacy: BASE Project (Volume 3) Secondary Data analysis

1) Executive Summary
Legislation (Autism Act NI, 2011), a cross-departmental strategy (Autism Strategy 2013-2020) and a first action plan (2013-2016) have been developed in Northern Ireland in order to support individuals and families affected by Autism Spectrum Disorder (ASD) without a prior thorough baseline assessment of need. At the same time, there are large existing data sets about the population in NI that had never been subjected to a secondary data analysis with regards to data on ASD. This report covers the first comprehensive secondary data analysis and thereby aims to inform future policy and practice.
Following a search of all existing, large-scale, regional or national data sets that were relevant to the lives of individuals and families affected by Autism Spectrum Disorder (ASD) in Northern Ireland, extensive secondary data analyses were carried out. The focus of these secondary data analyses was to distill any ASD related data from larger generic data sets. The findings are reported for each data set and follow a lifespan perspective, i.e., data related to children is reported first before data related to adults.
Key findings:
Autism Prevalence:
Of children born in 2000 in the UK,
• 0.9% (1:109) were reported to have ASD, when they were 5-year old in 2005;
• 1.8% (1:55) were reported to have ASD, when they were 7-years old in 2007;
• 3.5% (1:29) were reported to have ASD, when they were 11-year old in 2011.
In mainstream schools in Northern Ireland
• 1.2% of the children were reported to have ASD in 2006/07;
• 1.8% of the children were reported to have ASD in 2012/13.

Economic Deprivation:
• Families of children with autism (CWA) were 9%-18% worse off per week than families of children not on the autism spectrum (COA).
• Between 2006-2013 deprivation of CWA compared to COA nearly doubled as measured by eligibility for free school meals (from near 20 % to 37%)
• In 2006, CWA and COA experienced similar levels of deprivation (approx. 20%), by 2013, a considerable deprivation gap had developed, with CWA experienced 6% more deprivation than COA.
• Nearly 1/3 of primary school CWA lived in the most deprived areas in Northern Ireland.
• Nearly ½ of children with Asperger’s Syndrome who attended special school lived in the most deprived areas.

Unemployment:
• Mothers of CWA were 6% less likely to be employed than mothers of COA.
• Mothers of CWA earned 35%-56% less than mothers of COA.
• CWA were 9% less likely to live in two income families than COA.

Health:
• Pre-diagnosis, CWA were more likely than COA to have physical health problems, including walking on level ground, speech and language, hearing, eyesight, and asthma.
• Aged 3 years of age CWA experienced poorer emotional and social health than COA, this difference increased significantly by the time they were 7 years of age.
• Mothers of young CWA had lower levels of life satisfaction and poorer mental health than mothers of young COA.
Education:
• In mainstream education, children with ASD aged 11-16 years reported less satisfaction with their social relationships than COA.
• Younger children with ASD (aged 5 and 7 years) were less likely to enjoy school, were bullied more, and were more reluctant to attend school than COA.
• CWA attended school 2-3 weeks less than COA .
• Children with Asperger’s Syndrome in special schools missed the equivalent of 8-13 school days more than children with Asperger’s Syndrome in mainstream schools.
• Children with ASD attending mainstream schooling were less likely to gain 5+ GCSEs A*-C or subsequently attend university.



Further and Higher Education:
• Enrolment rates for students with ASD have risen in Further Education (FE), from 0% to 0.7%.
• Enrolment rates for students with ASD have risen in Higher Education (HE), from 0.28% to 0.45%.
• Students with ASD chose to study different subjects than students without ASD, although other factors, e.g., gender, age etc. may have played a part in subject selection.
• Students with ASD from NI were more likely than students without ASD to choose Northern Irish HE Institutions rather than study outside NI.

Participation in adult life and employment:
• A small number of adults with ASD (n=99) have benefitted from DES employment provision over the past 12 years.
• It is unknown how many adults with ASD have received employment support elsewhere (e.g. Steps to Work).
•
Awareness and Attitudes in the General Population:
• In both the 2003 and 2012 NI Life and Times Survey (NILTS), NI public reported positive attitudes towards the inclusion of children with ASD in mainstream education (see also BASE Project Vol. 2).

Gap Analysis Recommendations:
This was the first comprehensive secondary analysis with regards to ASD of existing large-scale data sets in Northern Ireland. Data gaps were identified and further replications would benefit from the following data inclusion:
• ASD should be recorded routinely in the following datasets:
o Census;
o Northern Ireland Survey of Activity Limitation (NISALD);
o Training for Success/Steps to work; Steps to Success;
o Travel survey;
o Hate crime; and
o Labour Force Survey.
• Data should be collected on the destinations/qualifications of special school leavers.
• NILT Survey autism module should be repeated in 5 years time (2017) (see full report of 1st NILT Survey autism module 2012 in BASE Project Report Volume 2).
• General public attitudes and awareness should be assessed for children and young people, using the Young Life and Times Survey (YLT) and the Kids Life and Times Survey (KLT); (this work is underway, Dillenburger, McKerr, Schubolz, & Lloyd, 2014-2015).
 

The inclusion of open-ended questions on quantitative surveys of children: Dealing with unanticipated responses relating to child abuse and neglect

Web surveys have been shown to be a viable, and relatively inexpensive, method of data collection with children. For this reason, the Kids’ Life and Times (KLT) was developed as an annual online survey of 10 and 11 year old children. Each year, approximately 4,000 children participate in the survey. Throughout the six years that KLT has been running, a range of questions has been asked that are both policy-relevant and important to the lives of children. Given the method employed by the survey, no extremely sensitive questions that might cause the children distress are included. The majority of questions on KLT are closed yielding quantitative data that are analysed statistically; however, one regular open-ended question is included at the end of KLT each year so that the children can suggest questions that they think should be asked on the survey the following year. While most of the responses are innocuous, each year a small minority of children suggest questions on child abuse and neglect. This paper reports the responses to this question and reflects on how researchers can, and should, deal with this issue from both a methodological and an ethical perspective.

The Early Effects of Rapid Androgen Deprivation on Human Prostate Cancer

The androgen receptor (AR) is the dominant growth factor in prostate cancer (PCa). Therefore, understanding how ARs regulate the human transcriptome is of paramount importance. The early effects of castration on human PCa have not previously been studied 27 patients medically castrated with degarelix 7 d before radical prostatectomy. We used mass spectrometry, immunohistochemistry, and gene expression array (validated by reverse transcription-polymerase chain reaction) to compare resected tumour with matched, controlled, untreated PCa tissue. All patients had levels of serum androgen, with reduced levels of intraprostatic androgen at prostatectomy. We observed differential expression of known androgen-regulated genes (TMPRSS2, KLK3, CAMKK2, FKBP5). We identified 749 genes downregulated and 908 genes upregulated following castration. AR regulation of α-methylacyl-CoA racemase expression and three other genes (FAM129A, RAB27A, and KIAA0101) was confirmed. Upregulation of oestrogen receptor 1 (ESR1) expression was observed in malignant epithelia and was associated with differential expression of ESR1-regulated genes and correlated with proliferation (Ki-67 expression).

PATIENT SUMMARY: This first-in-man study defines the rapid gene expression changes taking place in prostate cancer (PCa) following castration. Expression levels of the genes that the androgen receptor regulates are predictive of treatment outcome. Upregulation of oestrogen receptor 1 is a mechanism by which PCa cells may survive despite castration.

(Re)examining the relationship between children's subjective wellbeing and their perceptions of participation rights

In recent years wellbeing has been linked increasingly with children’s rights, often characterised as central to their realisation. Indeed it has been suggested that the two concepts are so intertwined that their pairing has become something of a mantra in the literature on childhood. This paper seeks to explore the nature of the relationship between wellbeing and participation rights, using a recently developed ‘rights-based’ measure of children’s participation in school and community, the Children’s Participation Rights Questionnaire (CPRQ), and an established measure of subjective wellbeing – KIDSCREEN-10. The data for the study came from the Kids’ Life and Times (KLT) which is an annual online survey of Primary 7 children carried out in Northern Ireland. In 2013 approximately 3,800 children (51% girls; 49% boys) from 212 schools participated in KLT. The findings showed a statistically significant positive correlation between children’s overall scores on the KIDSCREEN-10 subjective wellbeing measure and their perceptions that their participation rights are respected in school and community settings. Further, the results indicated that it is the social relations/autonomy questions on KIDSCREEN-10 which are most strongly related to children’s perceptions that their participation rights are respected. Exploration of the findings by gender showed that there were no significant differences in overall wellbeing; however girls had higher scores than boys on the social relations/autonomy domain of KIDSCREEN-10. Girls were also more positive than boys about their participation in school and community. In light of the findings from this study, it is suggested that what lies at the heart of the relationship between child wellbeing and children’s participation rights is the social/relational aspects of both participation and wellbeing.