Optimising health information to reduce inequalities

Transcription

1 Optimising health information to reduce inequalities Samuel Smith PhD CPsychol Cancer Research UK Postdoctoral Fellow

2 Overview Introduction to think aloud methods Provide a working example in cancer screening Practical working example Interviewing Coding Analysing

3 Think-Aloud: A brief introduction

4 Think-aloud When? To understand reactions to new information To identify problems with existing information To identify decision-making processes Examples Town planning ( I didn t see a sign for the car park ) Child s play ( I want to buy houses, but what if I land on Mayfair? ) Written information ( This font is tiny, how am I meant to read it?! )

5 Think-aloud How? 1. Transfer all the disks from one pole to another pole. 2. You may move only ONE disk at a time. 3. A large disk may not rest on top of a smaller one A B C

6 Think-aloud How? 1:1 structured interview Participant reads out loud At specific points, they are prompted to vocalises thoughts

7 Think-aloud How? Interviews transcribed Content analysis Counting mistakes Counting frequency of similar thoughts Thematic analysis Coding utterances into framework

8 Think-Aloud: A worked example in the context of the NHS Bowel Cancer Screening Programme

9 NHS Bowel Cancer Screening Programme Fully rolled out 2008 Aged Biennial Faecal Occult Blood Testing - Small sample of faeces onto test card - 3 times over two weeks - 16% RRR (population level)

10 NHS BCSP and health information Complex programme No HCP involvement at invitation stage Reliance on health information: Invitation & reminder letters Bowel Cancer Screening: The Facts Instruction leaflet Results Follow-up instructions

11 FOBT kit return by IMD score 54% uptake overall 61% in least deprived 35% in most deprived von Wagner et al., 2012

12 Aim: To investigate how people process the NHS BCSP information booklet Smith et al., HEX

13 Sample 18 participants Deprived sites in London and Midlands Mean age = 55 years [range 48-60]

14 Content analysis - mistakes 776 coded utterances Mean = 43 per person [range 8-95] 270 reading mistakes Mean = 15 per person [range 0-59] Substantial variation in type of utterance

15 Utterance framework

16 % of total utterances Content analysis utterance type Comprehension Emotional Information preferences Motivation

17 Thematic analysis Background to NHS BCSP Introduction to bowel cancer The FOBt and possible outcomes After the FOBt

18 Numerical information: That s about, yea, that s one in 4 of the population isn t it? (IT, 51 years, Male, higher education).

19 Background to NHS BCSP Introduction to bowel cancer The FOBt and possible outcomes After the FOBt

20 Scientific terminology: Ok, I m sure that s correct but doesn t strike me as particularly meaningful or enlightening in this context. I would prefer a more high level definition of what the bowel is actually. This just seems to provide too much detail (SM, 51 years, Male, higher education).

21 Background to NHS BCSP Introduction to bowel cancer The FOBt and possible outcomes After the FOBt

22 Miscomprehension: Does that equate with the 98 out of 100 in the previous paragraph? Something, somewhere doesn t seem quite. 4 people out of 100 and then we had 98 out of 100, anyway, not quite sure about that (WW, 56 years, Female, higher education).

23 Background to NHS BCSP Introduction to bowel cancer The FOBt and possible outcomes After the FOBt

24 Emotional reactions: Oh, oh that is shocking what on earth would they have had to do for that to happen whether a heart attack or you perforate the liver or something (CW, 56 years, Female, higher education).

25 Conclusion Think aloud identified: Difficulties processing complex information Sections miscomprehended (e.g. results) Difficulties extracting underlying meaning i.e. gist Time consuming Validity of data (asking qs invites answers) Validity of data (are utterances really inner thoughts?)

26 Think-Aloud: A practical example

27 Utterance framework

28 Think-aloud - practical Deep processing Surface processing Miscomprehension Emotionally negative Emotionally positive Unanswered questions Layout Unnecessary information Decrease motivation Increase motivation Person 1 Person 2 Person 3

29 Participant 1 Bowel cancer screening aims to detect bowel cancer at an early stage in people with no symptoms, when treatment is more likely to be effective. P1: Well that s understandable, and sounds a good idea to me. Good font size. Bowel cancer screening can also detect polyps. They are not cancers, but may develop into cancers over time. They can easily be removed, reducing the risk of bowel cancer developing. P1: Fantastic. I ve not heard of polyps. I wonder how they grow. Bowel Cancer is the third most common cancer in the UK, and the second leading cause of cancer deaths, with over 16,000 people dying from it each year P1: My god, i never thought that many! That s terrifying! Do I need to know that?

30 Participant 2 Bowel cancer is also known as collateral cancer? Is it? Collateral? P2: Sorry, I can t read all that. Whatever! Why are they talking about this other cancer now? People who take little exercise, people who are overweight, and people who have a diet, a diet high in red meat and low in vegetables, fruits and fibre are all thought to have an increased risk of developing bowel cancer. P2: Well I eat white meat, chicken, fruit and veg so I should be ok You carry out the screening test in the privacy of your own home. The screening kit provides a simple way for you to collect small samples of your bowel motions P2: Eugh, disgusting. I certainly won t be doing that! Also, what is the simple way??

31 Participant 3 About five in 10 people who have a colonoscomy will have a normal result P3: Hmm, ok. About four in 10 will be found to have polyp, which if removed may prevent cancer developing. P3: That s brilliant so simple About one in 10 people will be found to have cancer when they have P3: oh dear, just that thought makes me shiver. A colonoscopy is the most effective way to diagnose bowel cancer. For most people, having a colonoscopy is a straightforward procedure. The colonoscope can cause a hole in the wall of the bowel (about a one in 1,500 chance) P3: What?! How on earth does it do that? What would happen? That puts me off!

32 Think-aloud - practical Person 1 Person 2 Deep processing I Surface processing I I Miscomprehension I Emotionally negative I I I Emotionally positive II I Unanswered questions I I I Layout I Unnecessary information I Decrease motivation I I Increase motivation

33 Content analysis utterance type n of total utterances

34 Thank you for listening Samuel Smith PhD CPsychol Cancer Research UK Fellow