Data collection and publication - disability: guidance
Guidance for public bodies on the collection of data on disability.
Additional guidance for interviewers
Instructions and 'prefer not to say'
Instructions should be given at the beginning of the interview/survey saying why all of the questions are being asked, that they are all voluntary and, if a respondent does not wish to answer any of the questions, they do not have to. This ensures all questions are treated the same.
Testing by the ONS has shown that provision of a 'prefer not to say' option results in an increase in non-responses in telephone/face-to-face interviews. As such the recommendation is that this should only be included in online and paper surveys where refusal is not otherwise possible with the caveat that this may increase the rate of non-response to this question.
If a 'prefer not to say' option is added to this question then it should be added to all questions. In interviewer-led surveys clear instruction at the beginning should advise people that they do not have to answer any question that they do not wish to.
Interviewers should provide guidance about the coverage of conditions and illnesses if asked for clarification. For example, a respondent may state their mobility is impaired but is unsure whether this classifies as a long lasting condition or illness.
As a guide, this question includes physical or mental health conditions:
- lasting or expected to last for 12 months or more
- that a person is likely to have for the rest of their life
- that are likely to need some level of supervision and treatment over a long period of time
- that are not curable, even if medication or treatment can control symptoms
- which flare up intermittently, but the exacerbation has a shorter duration than 12 months (e.g. hay fever)
- which may not be perceived as serious and do not affect day-to-day activities but are nevertheless long lasting
- which are managed by treatment and lifestyle adjustments and do not affect day-to-day activities, but are nevertheless long lasting
The question is designed to include:
- sensory deficits
- non-temporary mobility problems including dyspraxia and cerebral palsy
- developmental conditions such as Autism Spectrum Disorder (ASD), which includes Asperger's syndrome, and Attention Deficit Hyperactivity Disorder (ADHD)
- conditions associated with learning impairments such as Down's syndrome or dyslexia
- common conditions and illnesses such as: asthma, diabetes, heart and other circulatory conditions, respiratory conditions, digestive conditions, anxiety and depression – if they have lasted or are expected to last 12 months or more
- seasonal conditions such as hay fever which recur and have lasted or are expected to recur in the future
This question is not designed to measure impact on an individual's daily activities. Nor is a person considered disabled under the 2010 Act solely by answering 'Yes' to this question as additional information about substantial impact will be required.
Question 1b (optional)
This question was developed to gather information about how the health condition or illness affects functioning. It will provide an estimate of the prevalence of category specific impairments in adults with a long lasting physical or mental health condition.
Historically, surveys have asked for information on the actual condition. However, extensive research and consultation by the ONS has shown that classification of functional impairment is both more straightforward and also more appropriate.
As an introduction to this question, interviewers should state:
"The purpose of this question is to establish the type of impairment(s) you experience currently as a result of your health condition or illness. In answering this question, you should consider whether you are affected in any way by your health condition or illness in any of these areas whilst receiving any treatment or medication or using devices to help you such as a hearing aid, for example".
Respondents may select as many responses as apply to them. Interviewers should steer respondents to using the pre-defined categories wherever possible, and avoid collecting precise conditions such as obstructive pulmonary disease, which would code to the category stamina or breathing or fatigue.
The interviewer should hand the show card to the respondent and ask them to state the categories that apply, coding up to ten.
As an introduction to this question, interviewers may state:
"This question asks about whether your health condition or illness currently affects your ability to carry out normal day-to-day activities, either a lot or a little or not at all. In answering this question, you should consider whether you are affected in any way by your health condition or illness while receiving any treatment or medication for your condition or illness and/or using any devices such as a hearing aid, for example."
The respondent should answer based on their current activity restriction.
If asked to clarify whether the second question refers to the ability to carry out day-to-day activities with or without medication, the respondent should be prompted to think about what is most usual for them; if they usually take medication then they should think about whether their ability to carry out day-to-day activities is reduced in any way, when they are on medication.
If interviewers are asked for clarification on the meaning of day-to-day activities the following may provide a guide.
Normal day to day activities can include:
- washing and dressing
- household cleaning
- shopping for essentials
- using public or private transport
- walking a defined distance
- climbing stairs
- remembering to pay bills
- lifting objects from the ground or a work surface in the kitchen
- moderate manual tasks such as gardening
- gripping objects such as cutlery
- hearing and speaking in a noisy room
Interpretation of limiting 'a little' or 'a lot' is in the context of how much assistance a person needs to carry-out daily activities, and whether they are house bound. 'A lot', for example, means usually needing the assistance of family, friends or personal social services for a number of or all normal daily activities. The respondents should answer based on their current extent of activity restriction after any treatment, medication or other devices (such as a hearing aid) they may receive or use has been taken into account.
An additional optional question regarding the length of time activity restriction is expected to occur, or has already occurred for, is provided by ONS, though this question is less widely used than those already detailed. This question can be asked to all respondents aged 16 and over who responded "yes" to question 1a and responded "yes, a lot" or "yes, a little" to question 2.
Question: For how long has your ability to carry out day-to-day activities been reduced? 
- 1. Less than six months
- 2. Between six and twelve months
- 3. Twelve months or more
Further information regarding this question can be found on the ONS' activity restriction harmonisation standard webpage.
If the respondent is under 16 years of age the questions must only be asked by proxy. The questions can also be asked by proxy if the respondent is aged 16 or over and unable to respond in person. If responding in a language other than English is preferred, professional interpreters, including BSL interpreters, should be used to assist with data collection.
There has been no specific testing for displaying the questions online, either aesthetically (formatting of tick boxes and page design) or in terms of the content (question wording, spontaneous response options etc.). The ONS questions recommended here adopted the online Census 2021 question wording for England and Wales, so the questions have been tested and used in an online format, which can be seen in section 6 of the question development page.
No specific testing has been done for an online 'prefer not to say' (PNTS) option, however ONS have tested and implemented a 'show on skip' version of the PNTS option for the online Labour Market Survey. Where a respondent skips the question, they will see the full list of response options repeated on the subsequent screen, with the inclusion of a option PNTS as well as a statement above the question emphasising the importance of providing a response for data collection purposes.
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