12 Notes
1. some patients may only make decisions as part of larger family unit
2. may not be familiar with concepts such as randomization; may be unable to evaluate amount of risk involved in trial
3. some are non- or low- level English speakers; some may also have low literacy level in L1
4. believe new drugs less likely to benefi t ethnic minorities
5. in many cultures traditional to tell family diagnosis/ prognosis, but not patient; patient may not know they have specifi c condition
6. unclear about benefi ts of trial to them/their peers; unaware of broader implications of trial outcomes
12.4 Extending skills
Underlying issue
c. family-centred culture
e. poor
understanding of research methodology
Ethical principles
autonomy
than individually. In addition, because in many non-Western cultures it is traditional for the family to be told the prognosis rather than the individual, the latter may not be aware that they have a disease and that they could benefi t from participating in a trial.
Closure
autonomy, justice,
nonmalefi cence
Ask students to fi nish the model reports from Lessons 12.3 and 12.4:
• the Discussion and Conclusion sections of Report A (the questionnaire survey of ethnic-minority and non-ethnic-minority patients)
b. poor literacy autonomy
• the Introduction section of Report B (the literature search notes on perceptions of patients from ethnic minorities on participation in clinical trials)
12.3_Intro
f. inequality of outcome
a. disclosure
justice, benefi cence
autonomy, justice
After completing the work, students can compare their reports with the models in the PDF given in the introduction to Lesson 12.3. If you wish, students could also use the following search terms, or alternatives, to search PubMed Central and Google Scholar themselves:
• ethnic minority • participate • clinical trial
Ask students to work out the original questions used in Report A in pairs. First, suggest some question types for questionnaires. Elicit the following:
• yes/no • multiple-choice • open-ended
d. lack of perceived relevance
benefi cence
Tell students to concentrate on the yes/no or multiple- choice types (open-ended questions will elicit qualitative information which is often hard to analyze) and to look at the data in Figures 1 and 2 and the sample Findings paragraph. T ey should try to formulate the actual questions used in the patient survey questionnaire.
3. Set question 3 for individual work and pairwork checking. Encourage students to share their work with a small group or with the class. Feed back as appropriate, and visually share the example below.
Model answer
It is clear is that there are a number of ethical principles which need to be considered in relation to these issues. Perhaps the most important of these is autonomy. Many of these patients are unable to speak English very well and are not literate, even in their own language. Culturally, many people are accustomed to making decisions as a family rather
260 12.4_Closure
Feed back visually with the class, sharing examples of good questions and the model questionnaire in the PDF.
Set a research report based on a questionnaire survey for homework. Students can use the ideas they have already discussed in this unit. T ey should carry out some secondary research on Google Scholar/PubMed Central to ensure that they have covered all the main issues. T ey should then write questionnaires to address these issues and write up a report outlining any diffi culties they encountered.
Page 1 |
Page 2 |
Page 3 |
Page 4 |
Page 5 |
Page 6 |
Page 7 |
Page 8 |
Page 9 |
Page 10 |
Page 11 |
Page 12 |
Page 13 |
Page 14 |
Page 15 |
Page 16 |
Page 17 |
Page 18 |
Page 19 |
Page 20 |
Page 21 |
Page 22 |
Page 23 |
Page 24 |
Page 25 |
Page 26 |
Page 27 |
Page 28 |
Page 29 |
Page 30 |
Page 31 |
Page 32 |
Page 33 |
Page 34 |
Page 35 |
Page 36 |
Page 37 |
Page 38 |
Page 39 |
Page 40 |
Page 41 |
Page 42 |
Page 43 |
Page 44 |
Page 45 |
Page 46 |
Page 47 |
Page 48 |
Page 49 |
Page 50 |
Page 51 |
Page 52 |
Page 53 |
Page 54 |
Page 55 |
Page 56 |
Page 57 |
Page 58 |
Page 59 |
Page 60 |
Page 61 |
Page 62 |
Page 63 |
Page 64 |
Page 65 |
Page 66 |
Page 67 |
Page 68 |
Page 69 |
Page 70 |
Page 71 |
Page 72 |
Page 73 |
Page 74 |
Page 75 |
Page 76 |
Page 77 |
Page 78 |
Page 79 |
Page 80 |
Page 81 |
Page 82 |
Page 83 |
Page 84 |
Page 85 |
Page 86 |
Page 87 |
Page 88 |
Page 89 |
Page 90 |
Page 91 |
Page 92 |
Page 93 |
Page 94 |
Page 95 |
Page 96 |
Page 97 |
Page 98 |
Page 99 |
Page 100 |
Page 101 |
Page 102 |
Page 103 |
Page 104 |
Page 105 |
Page 106 |
Page 107 |
Page 108 |
Page 109 |
Page 110 |
Page 111 |
Page 112 |
Page 113 |
Page 114 |
Page 115 |
Page 116 |
Page 117 |
Page 118 |
Page 119 |
Page 120 |
Page 121 |
Page 122 |
Page 123 |
Page 124 |
Page 125 |
Page 126 |
Page 127 |
Page 128 |
Page 129 |
Page 130 |
Page 131 |
Page 132 |
Page 133 |
Page 134 |
Page 135 |
Page 136 |
Page 137 |
Page 138 |
Page 139 |
Page 140 |
Page 141 |
Page 142 |
Page 143 |
Page 144 |
Page 145 |
Page 146 |
Page 147 |
Page 148 |
Page 149 |
Page 150 |
Page 151 |
Page 152 |
Page 153 |
Page 154 |
Page 155 |
Page 156 |
Page 157 |
Page 158 |
Page 159 |
Page 160 |
Page 161 |
Page 162 |
Page 163 |
Page 164 |
Page 165 |
Page 166 |
Page 167 |
Page 168 |
Page 169 |
Page 170 |
Page 171 |
Page 172 |
Page 173 |
Page 174 |
Page 175 |
Page 176 |
Page 177 |
Page 178 |
Page 179 |
Page 180 |
Page 181 |
Page 182 |
Page 183 |
Page 184 |
Page 185 |
Page 186 |
Page 187 |
Page 188 |
Page 189 |
Page 190 |
Page 191 |
Page 192 |
Page 193 |
Page 194 |
Page 195 |
Page 196 |
Page 197 |
Page 198 |
Page 199 |
Page 200 |
Page 201 |
Page 202 |
Page 203 |
Page 204 |
Page 205 |
Page 206 |
Page 207 |
Page 208 |
Page 209 |
Page 210 |
Page 211 |
Page 212 |
Page 213 |
Page 214 |
Page 215 |
Page 216 |
Page 217 |
Page 218 |
Page 219 |
Page 220 |
Page 221 |
Page 222 |
Page 223 |
Page 224 |
Page 225 |
Page 226 |
Page 227 |
Page 228 |
Page 229 |
Page 230 |
Page 231 |
Page 232 |
Page 233 |
Page 234 |
Page 235 |
Page 236 |
Page 237 |
Page 238 |
Page 239 |
Page 240 |
Page 241 |
Page 242 |
Page 243 |
Page 244 |
Page 245 |
Page 246 |
Page 247 |
Page 248 |
Page 249 |
Page 250 |
Page 251 |
Page 252 |
Page 253 |
Page 254 |
Page 255 |
Page 256 |
Page 257 |
Page 258 |
Page 259 |
Page 260 |
Page 261 |
Page 262 |
Page 263 |
Page 264
