Form Approved
OMB No. 0920-0222
Exp. Date: 01/31/2026
Notice - CDC estimates the average public reporting burden for this collection of information as 75 minutes per response, including the time for reviewing instructions, searching existing data/information sources, gathering and maintaining the data/information needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Information Collection Review Office, 1600 Clifton Road NE, MS H21-8, Atlanta, Georgia 30333; ATTN: PRA (0920-0222).
Assurance of Confidentiality We take your privacy very seriously. All information that relates to or describes identifiable characteristics of individuals, a practice, or an establishment will be used only for statistical purposes. NCHS staff, contractors, and agents will not disclose or release responses in identifiable form without the consent of the individual or establishment in accordance with section 308(d) of the Public Health Service Act (42 U.S.C. 242m(d)) and the Confidential Information Protection and Statistical Efficiency Act or CIPSEA (44 U.S.C. 3561-3583). In accordance with CIPSEA, every NCHS employee, contractor, and agent has taken an oath and is subject to a jail term of up to five years, a fine of up to $250,000, or both if he or she willfully discloses ANY identifiable information about you. In addition to the above cited laws, NCHS complies with the Federal Cybersecurity Enhancement Act of 2015 (6 U.S.C. §§ 151 and 151 note) which protects Federal information systems from cybersecurity risks by screening their networks.
Development of Questions to include adults with Intellectual and Developmental Disabilities (ID/DD) in Point of Care Settings
For Interviewer Use Only
Qualitative exploratory research: Interviewer’s guide.
(Person with ID/DD)
Research Aim To identify any additional functional difficulties or barriers to participation in day-to-day activities associated with ID/DD but not captured by domains of standard disability question sets, such as the Washington Group-Short Set and the American Community Survey questions on disability. Research objectives
Exploring:
|
The information from this study will be used to help develop a functional disability demographic checklist that can be used within a point of care setting to identify adults as having a disability, to be inclusive of adults with an intellectual and developmental disability (ID/DD). Ultimately, the checklist of items developed by this study will help to improve the capture of those with ID/DD in administrative data systems used for public health surveillance and allocation of resources.
Interviewers should focus on information needed to develop a functional difficulty checklist and obtain ‘biographical fragments’ where possible. Biographical fragments are small, focused sections of a person’s life history – experiences learning in school or starting their first job, for instance, which will help interviewers to understand people’s lives, and barriers and successes experienced.
Introduction and consent
Check if respondent can see and hear interviewer clearly
Introduce self and NCHS
Explain/Reiterate:
Purpose of research
Nature and length of discussion
Voluntary and confidential nature of research
Confirm privacy
Transcription
Video and audio recording
Start recording
Verbal consent to take part and record
Opening discussion
Describe what’s fun/enjoy/easy/hobby/likes/feel good
Current/past member of club, organization, group
If needed, description of a typical day
Difficulties / challenges in life
Challenges/ problems/ dislikes /feel bad
Current /past difficulties or challenges in day-to-day activities (e.g., Mobility, cognition, self-care, communication, other).
Level of difficulty/changes over time
Barriers to overcoming difficulty/problem
Impact on life/daily living
Comparison with others
Outlook on life
Determine positive / negative outlook on life
Disability / impairment
Knowledge / perception of disability / how describe
Type of disability, if known
How other people describe/ view /see disability
Age of onset/ongoing difficulty
Household composition
Living arrangements
Specific domains
Independent living
Level of independence
Help and support with day-to-day activities (aide or caretaker / special equipment)
Ability to do errands alone
What aspects does person need help with? (Physical/mental/emotional)
Enough help? More help? Less help?
Use of aids and equipment
Barriers to independent living
Access to transportation (Mobility)
Ability to drive
Barriers to transportation use
Ability to use public transportation
Cost barriers/anxiety barriers/other barriers
Learning
Academic vs. non-academic learning
Type of school attended incl. special education classes / Qualifications obtained
Barriers to learning / Literacy levels
Feelings about school/difficulties at school
Learning as an adult
Adapting to change
Form of thought
Following a process / doing things in the right order
Focused attention
Easily distracted / difficulty concentrating
Interaction with others
Barriers to interacting with other people
Social isolation / not understanding social norms
Attitudes
Nervous of strangers / untrusting of strangers / fearful of other people
Self-expression
Ability to express feelings/needs to others
Receptiveness of others to feelings/needs of person with disability
Economic life
Basic transactions – paying for things in grocery store, conceptualizing amounts
Complex transactions – managing bank account, managing finances/paying bills
Employment opportunities
Employment current/past
Barriers to employment
Feelings about jobs
Employment support (e.g. job coach/training)
Communication
Communication style preference
Internet access/use
Ideas and suggestions
From person being interviewed
Closing
Signpost: discussion will be ending in 5 minutes
End on a positive
Invite participant to raise any other issues/share anything else/ ask any questions
End interview discussion
Development of Questions to include adults with Intellectual and Developmental Disabilities (ID/DD) in Point of Care Settings
For Interviewer Use Only
Qualitative exploratory research: Interviewer’s guide.
(Close personal contact for person with ID/DD)
Research Aim To identify any additional functional difficulties or barriers to participation in day-to-day activities associated with ID/DD but not captured by domains of standard disability questions sets such as the Washington Group-Short Set and the American Community Survey questions on disability. Research objectives
Exploring:
|
The information from this study will be used to help develop a functional disability demographic checklist that can be used within a point of care setting to identify adults as having a disability, to be inclusive of adults with an intellectual and developmental disability (ID/DD). Ultimately, the checklist of items developed by this study will help to improve the capture of those with ID/DD in administrative data systems used for public health surveillance and allocation of resources.
Interviewers should focus on information needed to come up with functional difficulty questions and obtain ‘biographical fragments’ where possible. Close contacts have another, outside perspective on the person with ID/DD’s difficulties. Also, the close contact themselves may have had challenges of their own. However, the interview should focus on the person with ID/DD, and how their close contact understands challenges and barriers in their day-to-day lives.
Introduction and consent
Check person can see and hear interviewer clearly
Introduce self and NCHS
Explain/Reiterate:
Purpose of research
Nature and length of discussion
Voluntary and confidential nature of research
Confirm privacy
Transciption
Video and audio recording
Start recording
Verbal consent to take part
Opening discussion
Describe what’s fun/easy/hobby/likes/feel good
Current/past member of club, organization, group
If needed, description of a typical day
Difficulties / challenges in life
Challenges/ problems/ dislikes /feel bad
Current /past difficulties or challenges in day-to-day activities? (e.g., Mobility, cognition, self-care, communication, other)
Level of difficulty/changes over time?
Barriers to overcoming difficulty/problem
Impact on life/daily living
Comparison with others
Outlook on life
Determine positive / negative outlook on life
Disability / impairment
Knowledge / perception of disability / how describe
Type of disability, if known
How other people describe/ view /see disability
Age of onset/ongoing difficulty
Household composition
Living arrangements
Specific domains
Independent living
Level of independence
Help and support with day-to-day activities (aide or caretaker / special equipment)
Ability to do errands alone
What aspects does person need help with? (Physical/mental/emotional)
Enough help? More help? Less help?
Use of aids and equipment
Barriers to independent living
Access to transportation (Mobility)
Ability to drive
Barriers to transportation use
Ability to use public transportation
Cost barriers/anxiety barriers/other barriers
Learning
Academic vs. non-academic learning
Type of school attended incl. special education classes
Qualifications obtained
Barriers to learning
Literacy levels
Feelings about school/difficulties at school
Learning as an adult
Adapting to change
Form of thought
Following a process / doing things in the right order
Focused attention
Easily distracted / difficulty concentrating
Interaction with others
Barriers to interacting with other people
Social isolation / not understanding social norms
Attitudes
Nervous of strangers / untrusting of strangers / fearful of other people
Self-expression
Ability to express feelings/needs to others
Receptiveness of others to feelings/needs of person with disability
Economic life
Basic transactions – paying for things in grocery store, conceptualizing amounts
Complex transactions – managing bank account, managing finances/paying bills
Employment opportunities
Employment current/past
Barriers to employment
Feelings about jobs
Employment support (e.g. job coach/training)
Communication
Communication style preference
Internet access/use
Changes over time
Difficulties progressing/decreasing
Future outlook and goals
Ideas and suggestions
From person being interviewed
Closing
Signpost: discussion will be ending in 5 minutes
End on a positive
Invite participant to raise any other issues/share anything else/ ask any questions
End interview discussion
| File Type | application/vnd.openxmlformats-officedocument.wordprocessingml.document |
| Author | Wilmot, Amanda (CDC/DDPHSS/NCHS/DRM) |
| File Modified | 0000-00-00 |
| File Created | 2025-05-19 |