Surveying Children and Young People 2 |
|
| Chair | Ms Kate Smith (Centre for Longitudinal Studies ) |
| Coordinator 1 | Dr Lisa Calderwood (Centre for Longitudinal Studies) |
Measuring patient experience has become increasingly central to assessing and improving the performance of healthcare systems and has been identified as a priority by the Department of Health in the UK. Due to this, patient reported experience measures (PREMs) are increasingly being used to collect information about experiences of all aspects of health care. Whilst the focus of PREMs has primarily been on adult patients, in a number of recently published reports the inclusion of young people under 16 years of age has been advocated. However, many of the patient surveys that currently exist for children have been developed by adults with little or no input from children and young people. Moreover, those that do exist for children have been primarily developed to run as annual surveys, rather than real time surveys, with an emphasis on secondary rather than tertiary care and acute rather than chronic health conditions.
Great Ormond Street Hospital (GOSH) is a specialist hospital for children in the UK. GOSH and Ipsos MORI worked collaboratively to develop patient reported experience measures which were suitable for use Trust-wide for both inpatients and outpatients (known as the CYP PREM). Crucially, however, to ensure the CYP PREM reflected those elements of care that mattered to children and young people, the views, experiences and needs of GOSH patients directly informed all facets of its development. Given this aim, extensive patient engagement was carried out with patients aged 8-16. This included:
• focus groups to determine the aspects of care which are the key drivers of patient experience;
• extensive cognitive testing to ensure that questions are understood as intended, that the language is appropriate and that the response options are comprehensive; and,
• further focus groups to ascertain the most appropriate mode through which to administer the CYP PREM and to gain an understanding of patients’ design preferences.
The differing needs, views and experiences across age groups were considered at all stages. This led to the development of three age-appropriate versions of the questionnaire and two distinct designs.
This paper reports on the different strands of patient engagement work which were conducted and details how evidence from this work informed the development of the CYP PREM, and its ongoing implementation within GOSH. The findings and implications are highly relevant to other work with children and young people and provide insight into how this age group can be actively involved in the development of questionnaires.
In survey research vignettes are short stories about hypothetical characters. The stories place the behaviour of the characters in real-life contexts which allows the researcher to explore participants’ views on the issues arising from the situation. This method has been shown to be useful with adults and children; however, much of the literature in relation to studies with the latter focuses on the use of vignettes in qualitative research. Little is known about whether, and how, vignettes might be used in survey research with children, particularly in online surveys with little adult guidance on the interpretation of the stories. This paper explores the inclusion of vignettes to explore children’s attitudes towards the age of criminal responsibility in a large online survey of schoolchildren in Northern Ireland. The Kids’ Life and Times (KLT) is carried out with Primary 7 pupils who are all 10 or 11 years of age and the vignettes were included in the 2016 survey. The topic is particularly relevant to this age group as the age of criminal responsibility in Northern Ireland is 10 years old. The paper discusses the issues involved in the development of vignettes on this topic and, in particular, their inclusion in a survey taking place in a segregated society like Northern Ireland where nuances such as the names of characters may influence children’s perceptions of their ‘guilt’ or ‘innocence’. In addition, the paper will discuss the order of questions and present some of the findings from the survey to demonstrate the impact the vignettes may have had on the children’s decisions on the age of criminal responsibility in Northern Ireland. Suggestions for the future use of vignettes in online surveys of young children will be considered.
Online data collection methodologies are increasingly being used to survey children and young people. The advantages include relatively low costs of data collection, the avoidance of interviewer effects and the possible reduction in social desirability bias as compared to face-to-face methodologies. There are, however, significant obstacles around obtaining informed consent from young people and their parents, achieving good response rates and engaging young people in research. The widespread use of mobile devices to complete online surveys among young people also presents challenges to researchers.
Using two studies of children and young people in England, we consider the benefits and the challenges of online data collection for this age group. We evaluate the success of these two studies and suggest key learnings for future studies.
The second Longitudinal Study of Young People in England (LSYPE2) is a large scale mixed-mode longitudinal survey, following thousands of young people each year. Interviews started when participants were in Year 9 (aged 13-14) and further waves will be conducted for 7 consecutive years. For the fourth wave in 2015, 6,256 randomly selected participants were invited to take part online and a 45% online response rate was achieved among this group. LSYPE2 builds on the success of the first Longitudinal Study of Young People in England (LSYPE1) which was conducted between 2004 and 2010 involving a cohort of young people of the same age and introduced mixed-mode interviewing at wave 5.
The Wellcome Science Education Tracker (SET) is a cross-sectional online survey of more than 4,000 14-18 year olds in England, conducted in summer 2016. A 50% response rate was achieved, following a responsive design in which resources were focused on encouraging participation of young people in groups less likely to respond, such as those living in more deprived areas and those with lower educational performance.
Drawing on our experience of these two studies, we illustrate how online surveys of children and young people can be successfully implemented in both longitudinal and cross-sectional studies. We consider the challenges in designing effective online surveys for children and young people. We assess the impact of an online data collection methodology on the sample profile and on data quality, including the use of mobile devices by respondents. Finally, we propose some key principles to take into account when surveying children and young people.