Participatory survey design and survey data co-production |
|
| Chair | Dr Dirk Schubotz (ARK, Queen's University Belfast ) |
| Coordinator 1 | Dr Katrina Lloyd (ARK, Queen's University Belfast) |
Many general health surveys inquire after perceived well-being, health and behaviours. People with ID may be members of this general population, but data collection in this subgroup is complicated. Survey data collection amongst people with Intellectual Disabilities (ID) presents the researcher with a number choices such as the option to ask a proxy instead of the individual with ID. Asking a proxy to fill in the answers for the person with ID draws on the assumption that the proxy and person with ID are close, but it is this closeness that may increase the likelihood of biased answers. Additionally, relying on a proxy may make the person with ID sort of invisible and denies him or her participation. The alternative, asking people with ID to fill in questionnaires themselves better suits the inclusive paradigm, but also poses a series of general problems.
In the context of a survey on self-perceived health and health behaviours amongst people with ID some of these problems were studied and handled. The survey called for reliable and validated instruments to measure self-reported health and health behaviour for people with intellectual disabilities (ID), but they appeared lacking. Then, we decided to take an inclusive approach and adapted three frequently used original scales with the help of co-researchers with ID and other persons with an ID to make them suitable for self-report by people with ID.
In the presentation, the procedure followed to design the questionnaire will be described and the different phases including those relying on co-researchers with ID, will be critically discussed. Both the original Short Questionnaire to Assess Health-enhancing physical activity (SQUASH), the Sedentary Behaviour Questionnaire (SBQ), and a frequently used single-item scale on perceived health and the adapted scales will be presented and adaptations made will be explained.
Finally, the collection of data under people with ID and the performance of the adapted versions of the scales (SQUASH-ID, SBQ-ID) and the self-perceived health scale was tested. The presentation will conclude with general lessons drawn from this project.
A recent article in the Journal of Cancer Education, ‘Cancer Prevention and Control: Where are the Kids?’ argued that school-age children should be a major target for cancer prevention programmes since it is at this stage that many begin to make lifestyle choices that could have implications for their future health and wellbeing. Before developing such intervention programmes, it is important to find out what children already know and understand about cancer prevention. Therefore, the overall aim of this study was to work with a group of children as a Research Advisory Group (CRAG) to help develop age-appropriate and relevant questions relating to knowledge and understanding of lifestyle choices and cancer prevention, to pilot these questions in schools (using online Questback survey tool) and to seek the children’s help in analysing the results. The CRAG will also be asked to provide initial advice on how best to develop cancer-prevention intervention programmes suitable for their peers. This paper discusses the issues involved in designing capacity building activities to assist the CRAG in understanding this sensitive topic and the development of questionnaire items to measure it. It also explores the processes through which the children were recruited and engaged in developing the questions, including ethical issues in involving children aged 10 years old in such a sensitive topic. It concludes by suggesting a model approach through which children can be systematically engaged in the development of questions on cancer knowledge and awareness for their peers.
The common core questionnaire of household surveys (« Tronc Commun des enquêtes Ménages » in french) has been implemented in 2004 by the National Institute of Statistics and Economic Studies (Insee, French NSI), to insure a coherence within its face-to-face household surveys. It is a questionnaire asked at the beginning of household surveys. It allows to describe the housing's inhabitants before beginning the heart of survey. So, the interrogation approach is the same between the different surveys taking TCM.
In this questionnaire, a rich information is collected about housing's inhabitants, their family relationships, multi-residence, etc. So, unusual family situations such as single-parent family, joint custody, multi-resident are identifiable thanks to TCM.
In order to study these family situations, researchers of National Institute of Demographic Studies (Ined) are interested in TCM data. However, these situations are too many unusual if we limit ourselves to only one survey. Therefore it was decided to compile the data collected in different household surveys using the TCM to realise reliable estimations on these unusual family situations : the stacked TCM database. For that, the TCM data collected in twenty-four Insee's surveys between 2006 and 2013 (SILC 2006 to 2013, HBS 2011, AES 2012, etc.) have been stacked and there are three levels of database : housing, household and individual.
The stacking of TCM tables asks methodological questions, especially in terms of weighting. Indeed, not only we have to take into account the stacking of different samples with different weight kits, but also the multi-residence for individual weighting because a multi-resident is likely to be interviewed in several of his housing.
These two angles involve two different applications of the generalized weight share method : general setting of indirect survey for multi-residence and particular case of multiple survey frames for stacking.
The paper presents the different weighting methods that have been chosen at three levels, housing, household and individual, to elaborate the stacked TCM database.