COUNTRY: KENYA NAME OF PRESENTER: FRANCIS M. MUNENE TITLE: CHIEF ECONOMIST, MINISTRY OF JUSTICE AND CONSTITUIONAL AFFAIRS. QUESTION: SELF CARE QUESTIONS DOMAIN

2. METHODOLOGY 2.1 The sampling design: The sampling design for the pre-test was purposive implying that the selection of respondents was not based on any authoritative method. Interviewers had full freedom to select their respondents from households, disability institutions, through friends and even relatives. Consequently, no inferences can be made from the results. Data collection, processing and submittal of the results strictly followed the general guidelines issued by the Secretariat. Kish Grid method was used to select the proxy respondents

Recruitment criteria of the Interviewers: Selection of interviewers was strictly based on: Ones educational qualification (at least with a minimum of graduate level university education), professional inclination and working experience in research related assignments; Fluency (oral and written) in both English and their respective local language; Availability though out the entire period of the survey;

Ethnic representation; Good understanding of general principles of data collection; Ability to translate the pretest from English (source language) to their local ethnic language); Ability to take interview notes (These two criteria were considered crucial in view of maintaining the original meaning of the English translation and debriefing session that was to follow after the interviews); and Quick grasp of the instruments (this was key for two reasons: the limited time given for the exercise and two, respondents had to occasionally explain to respondents some of the hard- to-comprehend questions.

All interviewers had: Extensive training and experience in statistical surveys and research work. Good understanding of general principles of data collections, processing and analysis. Participated in diverse research assignments, mainly in CBS; Acquired a minimum of graduate level education, with diverse educational specialization ranging from Economics, law, sociology to Applied Statistics.

2.3Translation and duration of the Interviews: Forward and reverse translation was performed from English (source language) to the four main languages that are mainly spoken. These are Kiswahili, Kikuyu, Kamba and Luhya). No major problems identified with language translation except that most of our local languages are not so rich in words that occasionally failed to get their equivalence of English words.

On average, the interviews lasted between one and a half to 2 hours. This was by all standards a long duration and occasionally, interviewers had difficult time maintaining the respondents patience. This however depended on the respondents level of education, their relationship and the amount of interruptions during the interviews. Six interviewers, 2 Editors/ data processing and 1supervisor were recruited for the exercise. They were drawn from the National Statistics Office, some of the reputable research institutions and the local universities.

RESULTS: 2.1 Definition of Self Care Disability: Been defined by the Facilitator 2.2 Key Disability and Functioning Self Care Questions: Given by the facilitator 2.3Explanation of the Patterns: been discussed by the facilitator 2.4Results of the Response Patterns for Kenya

TABLE 2: COMBINED RESPONSE PATTERNS FOR SELF AND PROXY BY BROAD CATEGORIES RESULTS BY RESPONSE PATTERNS: The results are tabulated in three categories. The first set of results give 5 specific response categories (A,B,C, F, G) for both self and proxy as tabulated from the data, the second set shows the 3 broader pattern categories of disability (non problematic – constituted by A and E, borderline – by B,C, F, and G; and Problematic - formed by D and H); while the third set presents cross tabulations of the broader response patterns by key demographic variables

PATTERN RESPONSE PATTERN No. of Cases (%) SELFPROXY A No disability reported, no functioning problem(1,2,3)Perfect agreement or close to perfect). 87%(47 cases) E Disability reported, 3 functioning problem reported, 1 and 2 functioning problems reported. 0%(0 cases) B No disability reported;1 functioning problem reported, at least 2-3 problems not reported 5.6% (2 cases) C No disability reported,2 functioning problem reported,1 and 3 functioning problems not reported 1.9%(1 case) F Disability reported, 2 functioning problems reported and 1 and 3 functioning problems not reported. 5.6%(3 cases) G Disability reported,1 functioning problem reported,2 and 3 functioning problems not reported total disagreement) 0%(0 case)

CONT… D 3 functioning problems reported, no disability reported and 2 functioning problems not reported. 0%(0 case) H Disability reported,1 to 3 functioning problems not reported 1.9%(1 case)0%(0 case) MISS0%(0 case)

CHART 2 RESPONSE PATTERNSRESPONSESELF REPORTING Non problematic response patterns Total agreement between core and extended set of questions 47 cases)87% Borderline response patterns Partial, marginal agreement (6 cases)13.1% Problematic response patterns (1 case)1.9%

2.4.2 Non-Problematic Pattern - Category A and E: Pattern A and B are clearly non-problematic. A reports no disability and negative responses to all the follow-up functioning questions, which is perfectly consistent. E reports difficulty with self care and then at least three positive responses to the follow-up functioning questions. Again, perfectly consistent.

Borderline Category – Pattern F and G; and B and C: F and G are labeled as non-problematic but report at least one functioning problem (one functioning problem for G and two functioning problem under F). At first, it was a bit difficult to decide where to place it. If both of the categories had reported one functioning problem, then, it would have been easier to place them in the non-problematic domain. But F has two functioning problems which was somewhat mild and therefore placing it in the borderline seemed to me perfectly okay.

Categories B and C reported no self care disability but at least one functioning problem, quite similar to categories F and G. The two classes of patterns show perfect agreement up that level. The only difference between the two is that category B and C did not report disability whereas F and G did. Category C had nil responses, while the other three categories had each registered only one response.

2.4.4 OTHER SUPPORTING FINDINGS: Majority (85%) of responses give perfect agreement i.e. fall within the non-problematic category, 15% are in the borderline and about less than 1 percent in the problematic category. That response patterns A, G and G for self and C, D, and H for proxy had nil responses. There were no missing cases in both classes of categories. Categories F and G had one case each under proxy. Such a skewed distribution limits ability to explain some of the hard-to-explain patterns as in the case of B and C category and F and G categories.

Tabulations were run by key demographic variables (namely; age, education, work status, marital status) for each response category. This was in an effort to get some more insights on their effects with a view to explaining some of the hard-to-explain patterns. The results of the tabulations are shown in the following slides.

2.5 Other Findings from further Tabulations by Key Demographic Variables and by Category Category A: No difficult was reported for self across all ages but the proxy data revealed that about 98 % had some difficulties using hands and fingers while about 3% of the respondents felt too tired to dress. For the education variable, about 3% of the proxy university level respondents reported feeling too tired to dress. Analysis by work status and marital status did not show any significant differences in percentage terms for category A. Category B: A large proportion of proxy respondents (25% to 50%) reported difficulties ranging from using fingers to button shirts to tying of shoe laces.

Category E: There were no respondents for self care on this category, but about 7 for proxy. The 7 proxy respondents revealed difficulties ranging from mild to severe in virtually all the 8 parts of question 5, with severity difficulties levelling around 50%(71% difficult putting on socks, 86% combing hair and needing someone to help on daily activities). Category F: 16% of the self care respondents aged 50 years and above had difficult using hands, while 33% of the university level graduates had difficult putting on shoes against 33% for post secondary. For the proxy, 100% reported some difficulty reaching over their heads, and same % too tired to bathe-no direct relationship seen.

Category G: This category registered nil case for self and only 1 case for proxy. The proxy respondent was aged years, had university education, worked for pay, was not married but needed someone to help in daily activities.

3. Explanations for some of the Observed Response Patterns Based on field Experiences and further Tabulations: 3.1 Interpretation of WG Question and Extended Set: The core and extended set of questions were interpreted most consistently among most respondents, whether through proxy or self. This point is collaborated by the overwhelming and perfect agreement of response patterns observed. From the interview observations and follow-up debriefing, It was quite evident that the extended WG and the extended set were well understood by the respondents. Almost all of the self-reporting respondents and at least 11 out of a sample of 12 proxy respondents sampled from the data: Did not require any part of the question repeated;

Never sought for clarification nor demonstrated any difficulties in using the response options. However, on enquiring further why they answered that way, it emerged that majority of the respondents did not take this question kindly. Majority took offence. The impression created was that they were being doubted on. The following examples demonstrate this point: She does not have to ask for help to dress; She knows her well; and

If she has a problem, she would know. Part of these impressive results are attributed to elaborate training, close supervision during field work and engagement experience and qualified staff. Two, compared to other domains, the self care questions were relatively straight forward and easy to understand.

3.2 Question-response problems: There was some evidence of question-response problems but these were quite minimal and mainly conditioned on the physical aspects such as shaking ones hands, putting on socks/stockings etc. and to a large extend, the question was interpreted as asking about relatively serious limitations. They could have contributed to the larger cases falling under borderline. Many of the problems were centred on the respondents ability to conceptualize the level of limitation and to decide whether or not to respond in the affirmative. Such difficulties apparently were more common among respondents who had secondary and lower level of education, reported inferior work status and the aged.

There were relatively more question-response problems with the proxy than self reporting. 3.3 Inclusion of Any Difficulty: The inclusion of the word any difficulty raised some interpretation problems about the scope of difficulties. Respondents with mild self care difficulties tended to ignore the question and only those respondents who considered their impairment to be serious responded affirmatively to the question. Further, respondents tended to concentrate only on the long term conditions that are serious but omitted the short term mild conditions.

5. CONCLUSION: In conclusion, many of the difficulties were largely due to design limitations of the instrument but not content-based. Compared to other domains, the self care questions were relatively easy, straight forwarded, well understood and correctly interpreted by majority of respondents except those with low education, had inferior occupations, and aged (above 50 years of age). We see direct relationship between age and difficult in reporting but no direct relationship with the level of education. That the various response patterns are consist across key demographic variables except for age and to some extent work status. Overall, we saw significant difference in error reporting between self and proxy responses. THANK YOU