Ninety-nine eligible prisoners were identified. Fifty-five declined to participate. Forty-four initially agreed to participate but of these 10 declined to participate on the day, three were transferred to another institution prior to interview and one was held in a segregation unit during the available interview period. 30 prisoners took part in the study; 25 male and five female. Table demonstrates that 19 participants had already taken up opportunities for HCV testing, most whilst in the prison system.
Uptake of testing opportunities by study participants
Interviews identified personal and institutional barriers to the uptake of testing for HCV. Personal barriers related predominantly to lack of knowledge and fear of disease, a lack of awareness about the testing procedure, disease prognosis, treatment and outcome, and concern about confidentiality and stigma. Motivation was a personal factor that could facilitate uptake of testing. Institutional barriers related to the application to request a test, inadequate pre- and post- test discussion, and lack of continuity of care in the event of discharge or transfer from prison.
'Cause they're maybes scared, scared of knowing'
Ignorance and fear of disease was common amongst participants. Many were not aware of disease prognosis, treatment options and outcomes. Some assumed that a positive diagnosis was a 'death sentence' (See Geoff, Table ).
HCV was often conflated or formed a constellation with other blood borne viruses such as HIV. There was confusion about mode of transmission and likely prognosis (See Andy, Table ).
Perception of risk was mixed. Some prisoners attached great significance to sexual promiscuity whilst others, although recognising the dangers of sharing needles and syringes, did not always appreciate the risks involved in sharing other paraphernalia (See Danny, Table ).
'You bear a responsibility not to pass it on'
The main motivations for testing were discussed in terms of social or personal responsibility. Some of those who had had the test were unaware of potential treatments but had undertaken the test to determine whether they needed to take action to avoid infecting others (See Emma(a), Table ).
'They couldn't get any blood out of me'
Some prisoners complained that health care personnel lacked the skills required to take venous blood; although some acknowledged that the poor state of their veins contributed to poor venous access. Several prisoners had had to take their own blood because nursing or medical staff were unable to do so. (See Chrissie, Table )
Prisoners were not usually aware of how the test would be carried out, but this did not appear to be a barrier in itself. Most of those who were aware that testing would involve venepuncture felt that prisoners were not likely to be frightened of needles. Prisoners were not aware of the availability of a buccal swab or finger-prick blood-test.
'You don't want the whole wing to know'
There were concerns that confidentiality would not be maintained after accessing healthcare. These concerns were related to a fear of stigmatisation. Prisoners were concerned about the level of detail that they had to provide to apply for a test and about who might have access to these details (see Tony, Table ).
The problem of stigmatisation was related to IDU and HCV infection (see Emma(b), Table ). Prisoners were concerned that they may be stigmatised if there was a large bruise resulting from failed attempts at venepuncture, which would then be apparent to other prisoners and prison officers. Prisoners were more likely to attribute HCV infection to sexual promiscuity rather than to IDU (see Gary, Table ).
'You have to put an app in. An app!!'
Prisoners were required to complete an application form ('app') for access to health care, including HCV testing. Many prisoners regarded the 'app' as unnecessarily bureaucratic and a barrier to testing in terms of a requirement to disclose IDU and the long waiting time (see Alison, Table ). One prisoner had made three applications for a test and had not been tested.
'I think someone should be there to talk to you about it... he didn't tell us nowt [nothing]"
Although some prisoners reported that they had had the opportunity for pre- and post-test discussion with a healthcare professional, this was not always the case (see Emma, Table ). In some cases test results were 'posted' to prisoners under their cell door without post-test information and discussion. Several prisoners, like Emma, compared the availability of 'counselling' with that provided before and after HIV testing and thought that the procedure was more robust for HIV than for HCV.
'I was just trying to get through my rattle [detox]. That's all I were thinking about'
The offer of testing opportunities may not arise at an appropriate time. Prisoners with short sentences or who are on remand (ie. awaiting trial) might not be able to keep their appointments for testing because of court appearances or early discharge. Some prisoners could not recall whether they had been offered a test because they had other priorities at first reception to prison or because they were suffering the effects of drug/alcohol withdrawal at the time (see Chrissie, Table ).
'I got shipped out, so it never really happened'
Prisoners felt that there was not always adequate communication and transfer of information between prisons or between prisons and healthcare in the community. A prisoner, waiting for the test in one prison prior to transfer, would have to re-apply at the new prison. Two prisoners changed their minds about testing and had not reapplied after transfer as they would have to wait. Other prisoners were concerned that treatments or interventions initiated in the community would not be followed up in prison (see Jimmy, Table ).
'in here you wait like you wouldn't in the community'
Some prisoners felt that they might not have the same access to healthcare for Hepatitis C whilst in prison as they would do in the community (see Colin, Table ). Others believed that poor access to healthcare was encountered in prison and in the community because of stigma relating to IDU (see Danny, Table ).