GRADIENTES Y TIPO DE FONDO
6.5.5. ISLA SANTA MARÍA (FLOREANA)
Of the 40 survey respondents, 35 had participated in the CHART study and therefore completed section B of the questionnaire (Appendix 7). Comments made by the respondents are in Appendix 8.
Seven respondents reported that their involvement in the CHART study had formally changed their clinic policy in terms of how uninfected children were followed up. In two
hospitals, children had previously been discharged around 18 months of age, but with the introduction of the study, follow-up was extended beyond this age. In three hospitals, involvement in the study helped formalise annual follow-up. Twelve respondents considered that their involvement in the CHART study had informally changed clinic practice. Ways in which this occurred were: more time spent with parents to discuss the study and to complete the forms, more discussion with parents about exposure to ART, changes to the times of clinics, additional clinics arranged, and the offer of clinic appointments to children who would previously not have been seen after 18 months of age.
About a third (10/34, 29%) of respondents involved health professionals outside their clinic to assist with contacting parents and carers and enrolling children in the CHART study. Mostly these were GU physicians or nurses, though GPs, community
paediatricians and nurses were also involved.
The approximate amount of time additional to routine clinical care that the respondent estimated that they and other colleagues had devoted to contacting parents and carers and enrolling children varied (Table 7.7). As expected, respondents in hospitals with more children who fitted the inclusion criteria for the CHART study tended to devote more time to it. One respondent commented that the forms were easy to complete within normal consultation time, but another felt “uneasy” asking families back to clinic for a “few simple questions” so they also did an examination on the child (Appendix 8).
Table 7.7 Estimated time spent contacting parents/carers and enrolling children into the CHART study
Time Respondents
(n) Less than 1 hour per month 9
1-2 hours per month 16
1 hour per week 5
More than 1 hour per week 2
Not provided 3
Total 35
Contacting parents and carers about the CHART study
Three quarters of respondents usually approached parents and carers about the CHART study in the paediatric clinic, either when the child was brought to clinic for their confirmatory antibody test or at another time (Figure 7.3).
Figure 7.3 How health professionals usually approached parents/carers about the CHART study (n=35)
6% 23% 53% 0 At child's confirmatory test a Opportunistically in paediatric clinic ■ Over the telephone
□ In the parent/carer’s home
□ By letter
□ Missing
Respondents were asked about situations which made contacting parents and carers about the CHART study difficult (Table 7.8). Clinic non-attendance and loss of contact were considered especially problematic, particularly as some families moved or were moved away or changed their telephone number (see Appendix 8). Some families were reluctant to be contacted by the clinic staff, particularly once the child was discharged. Specific reasons given for this included the father or partner not being aware of the mother’s HIV status, and families not wanting to be reminded about HIV once their child was known to be uninfected. In addition, a number of respondents sometimes felt
awkward when they tried to contact families who had already been discharged from the clinic. Other issues highlighted were lack of resources and large clinic caseload
(Appendix 8).
Table 7.8 Frequency with which respondents thought certain situations made
contacting parents/carers about the CHART study difficult (n=35) Situation Frequently n (%) Sometimes n (%) Hardly ever n (%) Never n (%) Missing n (%)
Regularly does not attend scheduled appointments
12 (34%) 13 (37%) 2 (6%) 4(11%) 4(11%)
Lost contact with
family 12 (34%) 16 (46%) 3 (9%) 2 (6%) 2 (6%)
Family known to have
left the UK 2 (6%) 13 (37%) 6(17%) 7 (20%) 7 (20%) Difficult family
circumstances 3 (9%) 17 (49%) 2 (6%) 4(11%) 9 (26%) Child discharged from
clinic 9 (26%) 11 (31%) 7 (20%) 3 (9%) 5 (14%)
Lack of clinic staff
Enrolment in the CHART study
Respondents were asked about why they thought parents and carers agreed to take part in the CHART study (Table 7.9). Over half of respondents indicated that wanting to keep in contact with health services was either frequently or sometimes important, slightly more so than concern over the safety of ART.
Table 7.9 Issues involved in parents/carers agreeing to take part in the
CHART study: respondents’ views (n=35) Issue Frequently n (%) Sometimes n (%) Hardly ever n (%) Never n (%) Missing n (%)
Concern over the safety of the
antiretroviral therapy
9 (26%) 9 (26%) 5 (14%) 4(11%) 8 (23%)
Wanting to keep in contact with health services 3 (9%) 16 (46%) 6 (17%) 3 (9%) 7 (20%) Feeling uncomfortable about refusing 1 (3%) 8 (23%) 9 (26%) 6(17%) 11 (31%)
Respondents were then asked how often they thought several different issues were involved in parents and carers declining to take part in the CHART study (Table 7.10). Nearly half of respondents thought concern about data confidentiality was frequently or sometimes involved. Other issues mentioned were: the parent not wanting to be
reminded of their illness, and families not wanting to come to clinic appointments in nursery or school time.
Table 7.10 Issues involved in parents/carers declining to take part in the CHART study: respondents’ views (n=35)
Issue Frequently n (%) Sometimes n (%) Hardly ever n (%) Never n (%) Missing n (%)
Not feeling that it is
important 2 (6%) 9 (26%) 4(11%) 10 (29%) 10 (29%) Not wanting to keep
in contact with health services
4(11%) 10 (29%) 6 (17%) 9 (26%) 6(17%)
Difficult family
circumstances 1 (3%) 12 (34%) 7 (20%) 6 (17%) 9 (26%) Concern about data
confidentiality 6(17%) 10 (29%) 3 (9%) 8 (23%) 8 (23%)
7.6 Key points
• just over 2100 uninfected children reported to the NSHPC from nearly 170 hospitals in the UK were eligible for enrolment in the CHART study
• at the end of the study period, a third of eligible children had been enrolled,
parents/carers of 5% had declined enrolment, a quarter were lost to follow-up or had left the UK, and a third were not enrolled because the health professional was unwilling to contact the family
• of the enrolled children 7% were subsequently reported as lost to follow-up, and the parents/carers of 2% declined further follow-up
• confidentiality was the most frequently given reason for the parent/carer declining enrolment
• the family having moved or changed contact details was the most frequently given reason for loss to follow-up
• the majority of eligible children were bom to women from sub-Saharan Africa, and only 3% of children were bom to women who had acquired HIV infection through injecting drug use
• 95% of eligible children had been exposed to antenatal ART, mostly combination therapy
• enrolled and non-enrolled children were similar in terms of demographic characteristics, but enrolled children were more likely to have been exposed to antenatal ART
• most health professional survey respondents were paediatricians or paediatric nurses • the majority of respondents offered clinic appointments for uninfected children at 6-8
weeks, 3 and/or 4 months and 12-18 months of age; a fifth of respondents then offered appointments annually until 5 years of age
• a fifth of respondents reported that their involvement in the CHART study had
formally changed clinic policy in terms of how uninfected children were followed up, and a third reported that it had informally changed clinic practice
• a third of respondents had involved health professionals outside their clinic to assist with study enrolment
• three quarters of respondents usually approached parents/carers about the study in the paediatric clinic
• clinic non-attendance and loss of contact were considered situations that often made contacting parents/carers about the study difficult
• over half of respondents thought keeping in contact with health services was either frequently or sometimes involved in parents/carers agreeing to take part in the study • nearly half of respondents thought concern about data confidentiality was either