‘Silent voices’ in research with visually impaired children: ethnicity &
socio-economic variation in participation in studies of quality of life
Tadić V1, Hamblion EL1,2, Keeley S3, Lewando Hundt G3, Moore AT2, Rahi JS1,2
1Centre
for Paediatric Epidemiology, UCL Institute of Child Health, London, United Kingdom
of Ophthalmology, UCL, London, United Kingdom
3School of Health and Social Studies, University of Warwick, Coventry, United Kingdom
2Institute
v.tadic@ich.ucl.ac.uk, j.rahi@ich.ucl.ac.uk
PURPOSE
RESULTS - Level of participation
RESULTS – Participation barriers
To investigate factors influencing the level of participation of visually impaired (VI)
In both studies, overall participation was less than 50%, and appears to be broadly consistent with
The participants from ethnic majority (white) backgrounds and from more
children and their families in health services research.
the literature in which levels of participation are generally not reported. Identification of a large
affluent socio-economic backgrounds were significantly over-represented. The
Engaging health service users in research is an important aspect of service
proportion of participants with whom direct contact cannot be established using the contact details
level of participation did not vary by ‘clinical’ characteristics - age, gender,
planning and provision. However, achieving high levels of participation is an
held as ‘current’ within the health care system (Study 1) highlights an important barrier to engaging
visual acuity and the time of VI onset in either study (p values > .05).
ongoing challenge and the participant’s socio-cultural and socio-economic
users in health services research.
circumstances remain important barriers (Rahi et al., 2003).
Socio-economic background
Figure 1:
Participation
in Study 1
METHODS
Participated
N = 32 (39%)
Direct contact
established
N = 81 (76%)
quality of life (QoL) in VI children and young people.
Figure 5: Socio-economic variation in Invited vs. Achieved sample in Study 1
Participated
N = 44 (29%)
Declined
N = 25 (31%)
1 - Least deprived
2
3
4
5 - Most deprived
Did not respond
N = 24 (30%)
We examined the levels of participation overall and by clinical and sociodemographic characteristics of patients who took part in two distinct studies of
Figure 2: Participation
in Study 2
Invited to take
part in survey
N = 151
Invalid phone details
N = 16 (61.5 %)
17%
Declined
N = 8 (5%)
23%
Did not respond
N = 99 (66%)
1st quintile: diff. between two proportions (CI 95%) = 0.191 (0.007 – 0.374), p = .025
Figure 6: Socio-economic variation in Invited vs. Achieved sample in Study 2
Moved abroad
N = 1 (4 %)
1 - Least deprived
2
3
4
5 - Most deprived
young people about their VR QoL. Eligibility criteria: All children and young
people, age 10-15 with VI (visual acuity in the better eye < 6/18, LogMar ≥ .51)
Recruitment: By single mailing, followed up by a phone 2 weeks later.
Ethnicity
White:
Diff. between
proportions (CI
95%) = 0.159
(0.014-0.331);
p ≤ 0.09
Figure 3: Ethnic variation in Invited vs. Achieved sample in Study 1
2% 1%
Study 2
6%
6%
9%
16%
Aim: To measure the health-related (HR) QoL of children and young people with
63%
19%
hereditary retinal disorders. Method: A cross-sectional postal survey of HR QoL
White
Chinese
Asian
Mixed
Black
Other
Asian
Other
12%
24%
1st quintile: diff. between proportions (CI 95%) = 0.147 (0.004 – 0.298), p = .030
reporting of selection bias in health services research on childhood disability, as failure to elicit
7% 2%
‘silent voices’ is likely to have important implications for equitable and appropriate service
11%
Statistical analyses
planning and provision.
28%
64%
For each study separately, the proportions of participants in the Invited sample
80%
were compared to those in Achieved sample in terms of their age, gender,
White
Mixed
Such patterns of participation seem to be consistent across studies that differ in design,
recruitment procedure and demands placed upon participants. We urge assessment and
1%1%
6%
Index of Multiple Deprivation-IMD, based on the English postal code).
17%
30%
visual disability for individuals from socio-economically deprived or ethnic minority groups.
White
Figure 4: Ethnic variation in Invited vs. Achieved sample in Study 2
2nd mailing 2-4 weeks later but no phone contact.
National Statistics classification-ONS) and socio-economic background (using the
18%
17%
17%
There are ongoing barriers to participation in child and family centred research on childhood
are enlisted on the existing cohort of patients with hereditary retinal disorders at
severity of vision loss, the time of VI onset, ethnicity (using the UK Office for
21%
CONCLUSIONS
instrument PedsQL (self-completed, with an exception of 2-4 year old children, N
Moorfields Eye Hopital, London, UK. Recruitment: Invitation letter, followed up by
29%
1 - Least deprived
2
3
4
5 - Most deprived
15%
78%
of children and young people with hereditary retinal disorders using a generic QoL
= 13%). Eligibility criteria: All children and young people, age 2-18 years, who
6%
15%
25%
No answer to phone calls
& no response from GP
N = 3 (11.5 %)
children and young people . Method: Individual interviews with VI children and
due to any disorder, but in absence of other significant impairments.
16%
16%
No answer to phone calls
N = 6 (23 %)
Direct contact
not established
N = 26 (24%)
Aim: To develop a novel vision-related (VR) QoL instrument for self reporting VI
18%
37%
Invited to take
part in
interviews
N = 107
Study 1
27%
1 - Least deprived
2
3
4
5 - Most deprived
Asian
Other
Black
White
Asian
Black
Other
White:
Diff. between proportions (CI 95%) =
0.163 (0.020-0.306); p = 0.043
Asian:
Diff. between proportions (CI 95%)
= 0.171 (0.052-0.290), p = 0.021
This research was funded by the Guide Dogs
Association for the Blind