Lucian Agafitei ESTAT Unit F-4 Development of new modules in EHIS Disability (barriers to participation) Agenda point 3.2 Lucian Agafitei ESTAT Unit F-4 6-7 July 2017 3rd TF EHIS meeting

Outline Results from the pretesting conducted by the EHIS contractor EHIS grants 2017 - pre-testing disability variables for future EHIS Proposals for the pretesting to be conducted via the EHIS grants

Results from the pretesting conducted by the EHIS contractor (i) Methodology F2F cognitive interviews with 25 respondents: 24 Greek and 1 English 20 with various types of longstanding health problems and 5 without LHP 20 direct interviews and 5 proxy interviews Use of the 4 stage model of survey response process: Comprehension Retrieval from memory of relevant information Decision processes Response processes

Results from the pretesting conducted by the EHIS contractor (ii) Questions: Q1: Question about usually having difficulty in 10 life areas Q2: Open-ended question about reasons for having difficulty with each activity declared in Q1 Q3/4: Questions about lacking special aids or equipment/ personal help or assistance Additional questions asked: MEHM, LHCD, LDBA

Results for – Q1 (i) Easiness answering the question Difficulty to clearly define the level of difficulty (mainly people with lower educational level and/or over 50 years old). A yes/no format would be easier to reply Difficulty answering consistently for all activities, i.e. clearly defining the level of difficulty in doing an activity Relevance of the proposed everyday life activities Going out on a private motorised vehicle… not relevant for those with serious LHP (lifetime or for more than 10 years) => answered "no need to do the activity" Studying for a qualification or gaining new skills not relevant for people 40+ Doing the kind of paid work that you want to do not relevant for people 65+ Using the internet not relevant for people 60+ No of proposed activities: fair Understanding of the proposed activities: correct

Results for Q1 (ii) CONCLUSIONS Additional life areas that could be considered Desire to create and retain relathionships (friendly or romantic affairs) with other people Making transactions with banks and other public sector entities Considering help/assistance when answering: not considered CONCLUSIONS Question generally easy to understand Potential overlap between Attending social/family activities to be further examined Some activities considered as irrelevant by some groups of people Recommendation to use the format "yes/no" for the level of difficulty

Results for Q2 Most declared reasons: longstanding health problem, financial reasons and pshychological reasons Only the most important reason usually declared by a respondent Recommended reasons: Longstanding health problem Psychological reasons Financial reasons Self confidence Attitudes of other people Age Lack of skills/qualification Buildings' infrastructure and accessibility (elevators, parking, WC for disabled etc.)

Results for Q3 No further adaptation is recommended for the current question Need to design a complete aide memoire, in particular for the special aid/equipment addressing all the activities Respondents are more likely to need personal help than special aid in order to overcome the difficulties

EHIS grants 2017 - pre-testing disability variables for future EHIS What does IESS ask to collect as detailed topic: Barriers to participation in specific life domains => need to look at all kind of barriers and not only the health-related ones Technical specifications – EHIS grants: Disability (barriers to participation): max. 10 life areas with questions about the difficulty for participating in each life area, reasons for having difficulties and the lack of support max. 30 variables (Q&A concerning Eurostat grants 2017) 5 applications received

Options for this "module" (i) Link the difficulty doing a specific activity to a health problem directly in Q1 (+) reduced number of questions (-) only the prevalence of disability would be possible to compute and no additional info on any environmental or personal barriers Q1 about the level of difficulty doing specific activities and Q2 about various reasons that contribute to the difficulty experienced with activities (+) info on different types of barriers available (-) (i) some reasons are not appropriate for some activities and (ii) not possible to link the reasons selected to a specific activity

Options for this "module" (ii) Q1a about the level of difficulty in mobility and accessibility of buildings + Q2a list of related reasons + Q1b about the level of difficulty in other activities + Q2b list of related reasons => still not possible to link the reasons selected to each activity but more information provided, specifically to find out the barriers to mobility/accessibility of buildings

Proposal 1 (21 variables) Introduction Next questions are about the opportunities that people could have in participating in everyday life activities as much as they want to. Q1. Here is a list of different everyday life activities. For each of them, can you tell me whether you usually have difficulty doing it? Would you say having…? A. Leaving your home B. Going out on a private motorised vehicle (car, motorcycle, scooter, etc.) whenever you want or need to C. Using public transport modes (bus, train, coach, taxi) whenever you want or need to D. Accessing the buildings you want to use, including moving about once inside E. Studying for a qualification or gaining new skills F. Doing the kind of paid work that you want to do G. Using the internet H. Pursuing hobbies or interests I. Attending social activities with friends such as getting together, going to dinner, going to cultural events (for instance, movie or a sport event) J. Attending family activities such as holiday celebrations, birthdays, weddings or funerals 1. No difficulty/2. Some difficulty/3. A lot of difficulty/4. Cannot do at all / Unable to do/5.Not interested in doing the activity

Proposal 1 Filter If for at least one activity the reply in Q1 is 'Some difficulty' or 'A lot of difficulty' or 'Cannot do at all / Unable to do' ask: Q2. Which of the following reasons contribute to the difficulty experienced? Please use this card as a guide and choose all that apply. A longstanding health condition/disease A difficulty in functioning in basic actions (such as seeing, hearing, concentrating, walking, climbing stairs, etc.) Too busy (with work, family, caring or other responsibilities) Financial reasons (lack of money, can't afford it) Lack of self-confidence or attitudes of other people Lack of knowledge or information Environmental barriers/no friendly environment (for instance, difficulties with access and use of public transportation, accessing or using buildings, shops, easy movement along streets, parking, etc.) Lack of opportunities (for instance, no jobs available, no learning facilities, etc.) Other reasons. Please specify _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Proposal 1 Filter If Q2 = 1 or 2 ask Q3 and Q4: Q3. Does the lack of special aids or equipment contribute to the difficulty experienced? Yes No Q4. Does the lack of personal help or assistance contribute to the difficulty experienced?

Proposal 2 Introduction Next questions are about the opportunities that people could have in participating in everyday life activities as much as they want to. Q1a. Here is a list of different everyday life activities related to mobility. For each of them, can you tell me whether you usually have difficulty doing it? Would you say having…? A. Leaving your home B. Going out on a private motorised vehicle (car, motorcycle, scooter, etc.) whenever you want or need to C. Using public transport modes (bus, train, coach, taxi) whenever you want or need to D. Accessing the buildings you want to use, including moving about once inside 1. No difficulty/2. Some difficulty/3. A lot of difficulty/4. Cannot do at all / Unable to do/5.Not interested in doing the activity

Proposal 2 (29 variables) Filter If for at least one activity the reply in Q1a is 'Some difficulty' or 'A lot of difficulty' or 'Cannot do at all / Unable to do' ask: Q2a. Which of the following reasons contribute to the difficulty experienced? Please use this card as a guide and choose all that apply. A longstanding health condition/disease A difficulty in functioning in basic actions (such as seeing, hearing, concentrating, walking, climbing stairs, etc.) Financial reasons (lack of money, can't afford it) Lack of self-confidence or attitudes of other people Lack of convenient or available transport Difficulties travelling on transport (such as getting on or off transport, no seats available, too uncomfortable) Difficulties parking (such as not enough spaces, cost) Buildings' infrastructure and accessibility (lack of elevators, ramps, signs, doors too narrow, toilets not adapted, etc.) Other reasons. Please specify _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Proposal 2 Q1b. Here is a list of different major life activities. For each of them, can you tell me whether you usually have difficulty doing it? Would you say having…? A. Studying for a qualification or gaining new skills F. Doing the kind of paid work that you want to do G. Using the internet H. Pursuing hobbies or interests I. Attending social activities with family or friends such as getting together, going to dinner, going to cultural events (for instance, movie or a sport event) 1. No difficulty/2. Some difficulty/3. A lot of difficulty/4. Cannot do at all / Unable to do/5.Not interested in doing the activity

Proposal 2 Filter If for at least one activity the reply in Q1b is 'Some difficulty' or 'A lot of difficulty' or 'Cannot do at all / Unable to do' ask: Q2b. Which of the following reasons contribute to the difficulty experienced? Please use this card as a guide and choose all that apply. A longstanding health condition/disease A difficulty in functioning in basic actions (such as seeing, hearing, concentrating, walking, climbing stairs, etc.) Too busy (with work, family, caring or other responsibilities) Financial reasons (lack of money, can't afford it) Lack of self-confidence or attitudes of other people Lack of knowledge or information Environmental barriers/no friendly environment (for instance, difficulties with access and use of public transportation, accessing or using buildings, shops, easy movement along streets, parking, etc.) Lack of opportunities (for instance, no jobs available, no learning facilities, etc.) Other reasons. Please specify _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Proposal 2 Filter If any of the Q2 questions = 1 or 2 ask Q3 and Q4: Q3. Does the lack of special aids or equipment contribute to the difficulty experienced? Yes No Q4. Does the lack of personal help or assistance contribute to the difficulty experienced?

TF members are kindly invited to: Comment on: Proposals Selection of life areas (see graph next slide) Use of an age limit for some life areas? List of reasons Using a Yes/No format for the difficulty level Recommmend what is to be tested via the EHIS grants

Disabled people by life area where a barrier is reported and age groups (source EHSIS)