Programme : Presentation on 26
September 2003Collection of information about people with disabilities
Text version of a Powerpoint Presentation
Presented by Joanne Hillermann, ABS, on 26 September 2003, 9:00am
Slide 1
Collection of information about people with disabilities
Survey development,
collection, processing, analysis and dissemination issues
Joanne Hillermann
Australian Bureau of Statistics
2
Overview of survey stages and costs
(Survey of Disability, Ageing and Carers, 1998 - Table)
3
Overview of survey development
- Key steps:
- Identify user needs
- Prioritise competing needs
- Decide survey output
- Consider scope and coverage issues
- Identify the population or sub-population of interest
- Individual question design including response categories
- Sequencing and flow of the questionnaire
- Testing and validation
4
User needs
- It is important to develop surveys in conjunction with key users of the statistics and
people with disabilities
- ABS does this by convening Advisory Groups, to advise the ABS on information need
- Identify and document broad issues, as well as fine level details
- Identify and document the key policy issues that will be informed by the survey data
- Where there are competing needs for information, sometimes need to compromise to ensure
achievement of the highest priority information needs
- Need to invite broad representation of key clients including:
- Govt (all levels)
- Peak bodies and advocacy groups
- People with disabilities
- Academics and researchers
5
Define survey objectives and output
- Issues to consider:
- What is the population of interest?
- Why is the information needed?
- Who is going to use the information?
- What will it be used for?
- What are the key policy questions the information is required to inform?
- What is the desired accuracy? Of what data items?
- How often is the information needed?
- Is the need for a once off, or regular collection?
6
Scope and coverage
- Who is to be included?
- children?
- adults?
- older people?
- carers?
- What information about disability?
- selected disabilities, or all disabilities?
- severity of disability?
- Type of accommodation to include?
- private dwellings
- special dwellings, such as hostels, group homes, institutions
- Geographic areas
7
Operationalising the concept of disability and determining the domains to cover
- Consistency with the ICF important
- Data items and questions can attempt to cover a broad range of domains, or just specific
ones
- Activities of Daily Living (ADL) can broadly be seen as the activities:
- Communication
- Self-care
- Mobility
- Instrumental Activities of Daily Living (IADL) can broadly be seen as the more complex
activities:
- domestic activities
- home maintenance and gardening
8
Context and mode effects
- Disability prevalence rates vary according to type and mode of collection used to
collect information
- Disability rates were higher in ABS collections when disability questions were asked
after detailed health questions (such as the SF36).
- Disability rates generally lower in self-completion forms compared to personal
interviews
- General disability rates also lower where proxy interviewing allowed
9
Other issues to consider:
- Proxy vs non-proxy interviews
- Personal versus telephone interviews
- Special questions versus questionnaires for sub-populations
- Use of methods to improve collection of information from people with disabilities
- interviewer training
- letters to respondents
- survey brochures (outline the need for the information and encourage cooperation
- support from advocacy groups
10
Sample design
- Sample survey or census
- Stand alone survey or survey linked to Population census
- Area or list based sample
11
Testing and validation (continued)
- Pre-testing or skirmishes
- obtain respondent feedback on open questions
- Cognitive testing/focus groups
- small number of people with specific characteristics interviewed
- explore understanding of question wording in relation to the concepts being examined,
and appropriateness of response categories
- Observational studies
- Observe respondents completing questionnaire, and ask them to explain their
understanding of the questions
12
Testing and validation (continued)
- Pilot testing
- Small random sample to test
- identification of populations
- understanding of questions (broad)
- question sequencing and overall survey flow
- interviewer instructions
- respondent reaction to questions
- editing procedures
- Dress rehearsal
- Final test covering:
- interview times
- training of interviewers
- field procedures
- Debriefing
- Subjective, anecdotal, interviewer feedback
13
Interviewer training
- ABS disability survey training sessions were three days for all interviewers
- Interviewers already well trained in general interviewing procedures, including computer
assisted interviewing
- Training covered:
- major users and uses
- structure of the questionnaire
- main survey populations
- questions and sequencing
- coding of conditions
- practice interviewing
- issues relating to interviewing people with disabilities
14
Interviewing people with disabilities
- Understand that there are myths and stereotypes about people with disabilities, but many
of them are not true!!
- Always interview in a professional and sensitive manner
- Language is important
- Needs to be acceptable to people with disabilities, for example, neutral and avoiding
terms like disability, handicap, impairment etc.
- Needs to be accurate and respectful of individuals with disabilities
- Examples
15
Interviewing people with disabilities
- Cultural issues
- This is a very difficult area
- Being considered by the WCG on disability statistics
- Sometimes there is no overall word for "disability"
- Reluctance in some cultures to identify people in their household with a disability
- Ask all questions
- Do not assume or anticipate answers
- Be patient and let the respondent finish
16
Evaluation
- Post survey review
- Review all aspects of the survey
- Use interviewer feedback on issues relating to the questions, response categories,
procedures etc.
- Survey processing staff feedback on issues of processing data items, validation etc.
- Key user feedback on whether survey data met their information needs. Identify:
- Gaps
- Deficiencies in collected items
- Data quality analyses
17
Data processing and checking
- Different for the different collection methods such as CAI or paper questionnaires
- Create output or derived items
- Editing
- input (done as part of CAI instrument, or when punched or captured electronically)
- Validation
- of all output items
- compared with other data sources, previous data etc
18
Tabulation
- Determining the table content should be specified early in the development or collection
phases of the survey
- Publish output
- based on key user needs
- showing the most important information
- demonstrating the range of data available
19
Consider range of important tabulations. Issues include:
- Frequency and distribution of disability in the population
- Prevalence of different types of disability, such as, learning, communicating etc,
- Underlying cause of the disabilities in the population
- Severity and estimated duration of the disability
- Needs of people with disabilities in terms of
- aids and equipment, assistance, services
- met and unmet needs
- Quality of life issues/comparisons such as, living conditions health, social and
economic conditions
- Barriers to full and equal participation in society in areas such as education, work,
housing, transport etc.
20
Dissemination methods
- Methods include:
- Paper publication
- Published on Website
- Electronic tables/spreadsheets
- Microdata
- Promote survey data releases through:
- Media releases
- Seminars
- Analytical articles etc.
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