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Disclosing Hepatitis

C Infection Within
Everyday Contexts Journal of Health Psychology
Copyright © 2010 SAGE Publications
Los Angeles, London, New Delhi,
Implications for Accessing Singapore and Washington DC
www.sagepublications.com
Support and Healthcare Vol 15(6) 811–818
DOI: 10.1177/1359105310370499

MA X H O P W O O D Abstract
University of New South Wales, Australia
In this paper the authors quantify
TAM O N A K A M U R A
hepatitis C disclosure outcomes across
University of Newcastle, Australia
social contexts and identify the factors
CAR LA T R E L O A R
University of New South Wales, Australia associated with widespread disclosure
of infection. In a cross-sectional
survey of people with hepatitis C
(N = 504) more than half reported
receiving a bad reaction from
someone following disclosure.
Unauthorized disclosure occurred, and
many participants had been pressured
into disclosing their infection. The
factors associated with widespread
disclosure were: education level;
knowing other people with hepatitis
C; feeling fatigued; receiving
disclosure advice; and experiencing
unauthorized disclosure. Bad reactions
following disclosure are common and
may impede health-seeking behaviour
including uptake of hepatitis C
treatment.

A C K N O W L E D G E M E N T S . The authors are grateful to all the participants


who took part in the study. The authors would also like to thank Dr Erica
Southgate, Dr June Crawford, Dr Limin Mao, Dr Clive Aspin, the Hepatitis
C Council of New South Wales, the Resource and Education Program for
Injecting Drug Users (REPIDU) and HepLink, the Australian national body
of professional hepatitis C workers.

COMPETING INTERESTS: None declared.


Keywords
ADDRESS. Correspondence should be directed to:
D R M A X H O P W O O D , National Centre in HIV Social Research, Level 2
■ disclosure
Webster Building, The University of New South Wales, Sydney 2052, ■ discrimination
Australia. [Tel. +612 9385 6436; Fax +612 9385 6455; email: ■ healthcare
m.hopwood@unsw.edu.au] ■ hepatitis C

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JOURNAL OF HEALTH PSYCHOLOGY 15(6)

PAST research has demonstrated the beneficial disclosure are described in a seminal qualitative
psychological health effects of disclosure in relation study of hepatitis C-related discrimination by Crofts
to living with chronic illness (e.g. Pennebaker, et al. (1997). They found that people who disclosed
1995). Disclosing illness assists affected people to their hepatitis C infection often experienced ‘hys-
accept a new diagnosis and to cope emotionally terical responses’ (p. 90) and suffered negative con-
with a changing set of personal health circum- sequences across a range of settings. Some
stances. Disclosure also facilitates the acquisition of healthcare professionals implemented overly rigor-
support from family and friendship networks and ous infection control procedures or neglected their
health-related services. Conversely, disclosing a patients with hepatitis C. Within domestic settings,
stigmatized illness or condition potentially adds to people who had disclosed their infection experi-
the burden of disease. For example, research enced offensive phone calls, graffiti and verbal
describes how disclosure of HIV infection can be an harassment from friends, neighbours or flatmates.
acute and recurrent stressor for affected people Within occupational settings, some employees who
(Ariss, 1997; Holt et al., 1998; Malcolm et al., disclosed their hepatitis C infection experienced
1998). Similarly, disclosure of hepatitis C infection isolation at work or had their employment termi-
has provoked discriminatory responses which gen- nated. An association between disclosure and
erate a variety of undesirable effects (Crofts, Louie, discriminatory outcomes has been supported by
& Loff, 1997). Discriminatory outcomes from subsequent research (e.g. Owens, 2008; Platt &
hepatitis C disclosure can increase affected individ- Gifford, 2003; Treloar & Hopwood, 2004).
uals’ ‘sense of despair and absolute contamination’ Few studies have specifically investigated the
at being hepatitis C positive (Fraser & Treloar, dynamics of hepatitis C disclosure. However, some
2006, p. 100). Affected people may become more report that affected people will usually disclose
reckless and increase their risk-taking behaviour hepatitis C infection to their physician (Schafer,
(Hepworth & Krug, 1999). Additionally, fear of Scheurlen, Felten, & Kraus, 2005), and often to their
future disclosure can compromise health and qual- peers (Gyarmathy, Neaigus, Ujhelyi, Szabo, & Racz,
ity of life by inhibiting people’s access to support, 2006). Gender differences have been identified, with
their utilization of health services and their uptake women more likely than men to disclose their infec-
of hepatitis C treatments (Hopwood & Treloar, tion to partners, children and other family members
2008; Hopwood, Treloar, & Redsull, 2006). Past (Dunne & Quayle, 2002). Most partners of women
research highlights that disclosure of a stigmatized who disclose are reportedly supportive, regardless of
illness or condition is a salient issue for health psy- whether the partner has hepatitis C or not (Gifford,
chology. In this article, the authors draw on a study O’Brien, Bammer, Bamwell, & Stoove, 2003). In a
of living with hepatitis C to highlight some dynam- study of hepatitis C treatment experiences, some
ics of disclosure and its health impacts. participants had endured treatment in silence, with-
Hepatitis C is a highly stigmatized infection and out disclosing to their partner, family or friends
there is a strong association between disclosure of (Hopwood et al., 2006). Others had devised disclo-
hepatitis C and discrimination (Anti-discrimination sure strategies—such as deploying euphemisms—in
Board of New South Wales [ADBNSW], 2001; order to circumvent negative reactions and to
National Centre in HIV Social Research, 2001). account for visible treatment-related side effects.
Over recent years, a growing scholarly literature Nonetheless, fear of the outcomes from disclosing
has acknowledged the detrimental impact of hepati- discouraged some people from commencing treat-
tis C-related stigma and discrimination on preven- ment for hepatitis C infection. This is a significant
tion of transmission, treatment uptake and quality concern, given that treatment is effective for a
of life for affected people (e.g. Golden, Conroy, majority of people with hepatitis C. Renewed efforts
O’Dwyer, Golden, & Hardouine, 2006; Hopwood, to encourage people to commence treatment in
Treloar, & Bryant, 2006; Paterson, Backmund, Australia has seen only a modest increase in the
Hirsch, & Yim, 2007). Hepatitis C-related stigmati- number of people accessing treatment (National
zation and discrimination arises from the widespread Centre in HIV Epidemiology and Clinical Research
confounding of injecting drug use with hepatitis C, [NCHECR], 2008). Given the association between
and poor levels of knowledge about the viral disclosure and discrimination, a desire to avoid dis-
infection within the health sector and the broader closure of hepatitis C infection may be a barrier to
community (ADBNSW, 2001). Some outcomes of hepatitis C treatment uptake.
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HOPWOOD ET AL.: DISCLOSING HEPATITIS C INFECTION WITHIN EVERYDAY CONTEXTS

Despite a burgeoning interest in the dynamics of categories for this item were partner, family, children,
hepatitis C disclosure, estimates of the proportion doctor, other healthcare workers, casual sexual part-
of people who experience negative outcomes from ners, flatmates, friends, boss and workmates. A dis-
disclosing do not appear in the literature. Similarly, closure scale was constructed from participants’
little attention has been paid to exploring who prac- responses to this item. The scale ranged from 0 to 8
tises widespread disclosure of hepatitis C infection where 0 indicated that participants disclosed to no
and what happens with this information. The one and 8 represented that participants disclosed to
authors investigate these issues in this article by eight different categories of people. The median of
presenting data from a study of people with hepati- the scale in the sample was 4.0. Less than a half of
tis C that asked: (1) what proportion of people expe- the sample (44.0%, n = 222) had values less than the
rience discrimination as an outcome of disclosing median and 23.0% (n = 116) had a value equal to the
their hepatitis C; (2) who reacts negatively to median. A reliability analysis revealed that the dis-
hepatitis C disclosure; and (3) what factors predict closure scale has a Cronbach alpha of .65.
whether or not an individual engages in widespread Although this scale does not indicate the absolute
disclosure of hepatitis C? number of people to whom each participant has dis-
closed, it does capture the breadth of disclosure.
Throughout this article, the phrase ‘disclosing more
Method widely’ and ‘wider disclosure’ is used to refer to
those people who scored higher on this scale com-
Participants and procedure pared to those who scored lower. A series of uni-
To participate in the study, people had to have variate analyses of variance (ANOVA) examined
hepatitis C infection and be living in New South associations between the disclosure scale and other
Wales, Australia. Using a convenience sampling variables thought to influence disclosure behaviour.
frame, participants were recruited via an advertise- Where there were differences among three or more
ment in the March and June 2001 editions of The means, orthogonal post-hoc contrast testing was
Hep C Review, a quarterly magazine published by performed. A multiple linear regression analysis
the Hepatitis C Council of New South Wales, and was conducted to determine variables predicting
from eligible callers to the Council’s telephone wider disclosure, taking other variables into
information and helpline. A reply-paid question- account. A reduced model was derived using back-
naire was inserted in these two editions of the mag- ward elimination to identify variables indepen-
azine, as well as being sent to interested callers. dently associated with wider disclosure. A type 1
From this recruitment strategy, 450 people with error rate of .05 was used to determine statistical
self-reported hepatitis C infection responded during significance.
2001 and 2002. To increase the number of current
injecting drug users in the sample, 54 additional
participants were recruited by approaching clients
Results
at a needle and syringe programme (NSP) in central
Sydney. No financial incentives to participate were Participant characteristics
extended. All participants completed an anony- In all, 504 participants were recruited to the study
mous, short questionnaire containing items that (Table 1). The age of participants ranged from 18 to
focused on their experience of hepatitis C diagno- 77 years, with a mean age of 42 years. There were
sis, disclosure and discrimination. The question- approximately equal numbers of men and women.
naire took approximately 15 minutes to complete. Most participants (57.5%) cited injecting drug use
The study had the approval of the University of as the source of their hepatitis C infection and over
New South Wales’ Human Research Ethics a quarter (27.4%) had injected drugs in the month
Committee and the Ethics Review Committee of the prior to completing the questionnaire. Participants
Central Sydney Area Health Service. in this study were mainly older, former injecting
drug users. They were not highly educated and
Analysis existed on low incomes, and most had been living
One item in the questionnaire was used as a scale to with hepatitis C for many years.
measure participants’ level of disclosure: ‘Who have A comparison of sample characteristics of the
you told that you have hep C?’ The response groups obtained via the two recruitment strategies
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JOURNAL OF HEALTH PSYCHOLOGY 15(6)

Table 1. Characteristics of sample (N = 504)a report feeling tired from their infection (36.0 vs
60.0%, χ2 = 7.3, df = 1, p < .01). On all other dimen-
Characteristic n %
sions these two groups did not differ.
Gender (n = 499)
Male 254 50.4 Patterns of hepatitis C disclosure
Female 244 48.4 Approximately three-quarters of participants had
Transgender 1 0.2 disclosed to a regular partner and to their family
Age (n = 472) (Table 2). Similarly, most participants had disclosed
18–30 years 65 12.9 their infection to their doctor (76.0%) or another
31–50 years 334 66.3 healthcare worker (65.7%) and friends (69.0%). In
51–77 years 73 14.5 contrast, few people had disclosed to their boss
Education (n = 495) (16.5%) or workmates (17.3%). Participants were
Up to and including Year 12 269 53.4
asked who had ‘reacted badly’ to their disclosure of
Diploma/degree 183 36.2
Postgraduate 43 8.5
hepatitis C (Table 2). In all, 52.0% of participants
Income per year (n = 448) (n = 262) reported that someone had reacted badly.
< $10,000 184 36.5 Bad reactions were reported from a range of people
$10,001–$20,000 92 18.3 including family (22.6%, n = 81), friends (19.5%,
$20,001–$30,000 58 11.5 n = 68), partners (17.1%, n = 63), healthcare workers
$30,001–$40,000 29 5.8 (16.3%, n = 54) and doctors (11.5%, n = 44). One in
$40,001–$50,000 33 6.5 six women (16.6%, n = 31) reported that their part-
$50,001–$60,000 30 6.0 ner had reacted badly following disclosure. In addi-
Over $60,000 22 4.4 tion, 37.5% of participants (n = 189) said that they
Self-reported source of infection (n = 494)
regretted telling someone about their infection.
Injecting drug use 290 57.5
Medical blood products 74 14.7
Over a third of participants (36.7%, n = 185)
Tattooing 20 4.0 reported that information about their hepatitis C
Sex 15 3.0 infection had been told to someone else without
Body piercing 5 1.0 their permission. The source of these unauthorized
Other 44 8.7 disclosures included friends (15.9%, n = 80) and
Multiple responses 46 9.1 doctor or other healthcare worker (13.5%, n = 68).
Self-reported time since infection (n = 490) Finally, 11.9% of all participants reported that they
Within the last year 12 2.4 had been pressured into disclosing their infection
Between 1and 5 years ago 67 13.3 and of these 60 people, 51.7% (n = 31) reported that
Between 6 and 10 years ago 82 16.3
a healthcare worker had pressured them into dis-
Between 11 and 20 years ago 199 39.5
Over 20 years ago 130 25.8
closing and 28.3% (n = 17) reported that a govern-
Injected in the last month (n = 496) ment department had pressured them into disclosing
Yes 138 27.4 their hepatitis C infection.
No 358 71.0 Of the participants, 55.2% (n = 278) reported that
they had disclosed their infection to at least four cat-
a
Proportions do not add to 100% due to missing data egories of people and 32.1% (n = 162) had disclosed
to at least five categories of people. Participants with
a higher level of education (i.e. post-school diploma
revealed no significant differences. Similarly, a or university degree) disclosed to a wider range of
comparison of current injecting drug users recruited people than those with less education (i.e. high
via the two strategies revealed minor differences: school matriculation level/Year 12 or less) (t228.9 =
compared with current injecting drug users –3.0, p < .05). Participants who reported that they
recruited via the Hepatitis C Council of New South had been refused medical treatment because they
Wales, current injecting drug users who attended had hepatitis C and those who were not sure whether
the NSP were more likely to have injected the they had been refused medical treatment, had dis-
methamphetamine ‘ecstasy’ (63.3 vs 0.0%, χ2 = closed more widely than those who reported they
68.6, df = 1, p < .001), were less likely to have ever had not been refused medical treatment (t491 = –2.0,
received treatment for hepatitis C (5.9 vs 22.1%, p < .05). Participants who knew six or more people
χ2 = 6.2, df = 1, p < .05) and were less likely to with hepatitis C disclosed their own infection more

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HOPWOOD ET AL.: DISCLOSING HEPATITIS C INFECTION WITHIN EVERYDAY CONTEXTS

Table 2. Disclosure of hepatitis C infection and subsequent ‘bad’ reactions (N = 504)

Disclosure ‘Reacted badly’


a
Disclosed to: n % n %b

Casual sex partner 96 19.0 26 27.1


Family (i.e. parents/siblings) 359 71.2 81 22.6
Friend 348 69.0 68 19.5
Flatmate 90 17.9 17 18.9
Partner 369 73.2 63 17.1
Boss 83 16.5 14 16.9
Other healthcare worker(s) 331 65.7 54 16.3
Workmate 87 17.3 12 13.8
Doctor 383 76.0 44 11.5
Children 143 28.4 14 9.8
a
Percentage of total sample.
b
Of those who had disclosed, the percentage of people who had experienced a bad reaction.

widely than those who knew less than six people Table 3. Reduced model for disclosure of hepatitis C
with hepatitis C (t234.4 = –4.9, p < .01). Participants infection
who reported that in the last month having hepatitis
Variable Unstandardized β SE Sig.
C had affected them, made them want to get healthy,
stopped them from doing the things they like, or Level of education 0.38 0.12 < .01
made them feel very tired, had disclosed more Number of hep C 0.40 0.07 < .01
widely than those who did not report these effects. positive people
Participants who reported that they regretted dis- participant knows
closing their hepatitis C infection to someone, or Feeling tired due 0.36 0.16 < .05
to hep C over the
that their hepatitis C infection had been told to
past month
someone else without their permission, or that they
Advised to tell no –0.92 0.24 < .01
had been pressured into disclosing their hepatitis C one or only close
infection, had disclosed more widely than those who family of hep C
did not report these effects and events. Finally, par- Hep C infection 0.39 0.17 < .05
ticipants who were advised at the time of diagnosis disclosed without
to tell no one or only their close family about their permission
infection disclosed less widely than those who did
not report receiving this advice.
Those participants who at the time of their diagno-
Predicting disclosure of hepatitis C sis were advised to tell no one or only their close
Variables assessed in the disclosure scale were sub- family, would disclose their hepatitis C infection
sequently tested in a multiple linear regression to less widely than those who did not receive this
determine the unique association of these variables advice. Finally, participants who reported that their
with disclosure. Variables in the reduced model infection was disclosed by others without their per-
appear in Table 3. The final reduced regression mission reported disclosing more widely.
model contained five variables that predicted wider
disclosure when other variables were also taken into
account. Higher-educated participants reported Discussion
wider disclosure. The more people with hepatitis C
that participants knew, the more widely they dis- The above findings are based on an analysis of self-
closed. Participants who reported feeling very tired report data obtained from a cross-sectional study
over the last month as a result of having hepatitis C which used a convenience sampling frame. As such,
(i.e. being symptomatic) reported wider disclosure. there are limits to the representativeness of the sample

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JOURNAL OF HEALTH PSYCHOLOGY 15(6)

and the generalizability of the findings. It is evident had disclosed more widely. Families, loved ones,
from a comparison with known attributes of casual partners, doctors and other healthcare work-
Australians diagnosed with hepatitis C that the ers were the major sources of bad reactions to
study sample was not representative (Australian hepatitis C disclosure. In the context of close per-
National Council on AIDS, Hepatitis C and Related sonal relationships, which are usually one’s pri-
Diseases, 2002). Around 58% of the study sample mary source of support, receiving any bad reaction
had acquired their infection from injecting com- adds to the burden of illness. On a positive note,
pared with 83% nationally, and males comprised our results are similar to Gifford et al.’s (2003)
about half of the study’s sample, whereas approxi- finding that a majority of partners of women with
mately 65% of all hepatitis C diagnoses in Australia hepatitis C were reported to be supportive follow-
are among males. Issues pertaining to disclosure are ing disclosure.
also likely to vary according to one’s ethnic and cul- A substantial minority of participants reported
tural background. The findings of this study do not that their doctor or other healthcare worker had
reflect the specificity of disclosure dynamics within reacted badly following disclosure of hepatitis C.
differing ethnic or cultural contexts. Finally, while This is a concern as, throughout the developed
the data was collected during 2001 and 2002, there world, prevention of infection and the promotion of
is no evidence of significant change within the interferon-based treatments are central to efforts
intervening years which would affect these results. aimed at curbing future morbidity, mortality and
Although the above limitations of this study are healthcare costs associated with hepatitis C-related
acknowledged, the sample was similar on the liver disease. Hepatitis C-related stigma in the
dimensions of age, education and income to the healthcare sector decreases the likelihood that
Australian national profile of people diagnosed with affected people will access healthcare to address
hepatitis C. The decision to use a convenience sam- hepatitis C symptoms or to commence interferon-
pling frame to collect self-report data enabled the based treatments to eradicate infection (Hopwood et
researchers to identify salient issues for this group al., 2006). One approach to ameliorate health-
of affected people, some of which are likely to be related stigma and discrimination is to improve
generalizable. healthcare workers’ education and understanding of
The main finding of this study is that most people hepatitis C infection.
disclose hepatitis C infection at some point following Over one-third of participants regretted telling
their diagnosis, and it is not uncommon to receive a someone about their infection, in this study.
bad reaction. We did not define ‘bad reaction’ for Healthcare workers were reported to have spread
participants; instead we assumed a lay understanding personal health information without participants’
of the phrase. The implications of this finding are permission and to have pressured participants into
worrying, given that over 200,000 Australians (or disclosing their hepatitis C infection. Unauthorized
more than 1% of the population) have chronic hepati- and coerced disclosures are unethical and increase
tis C infection and approximately 10,000 new infec- the likelihood that patients will lose trust in health-
tions occur each year (NCHECR, 2008). In other care providers. In previous studies (e.g. Serovich,
contexts, people who are diagnosed with chronic ill- 2001), breaches of confidentiality have influenced
nesses rarely endure negative outcomes from dis- participants’ disclosure patterns. In the present
closing their condition, especially from health study, participants who had their status disclosed
professionals. Instead, following disclosure of illness without their permission disclosed more widely,
there is an expectation of empathy and perhaps sup- perhaps in response to requests to confirm leaked
port. However, following disclosure of hepatitis C information. Government departments also report-
infection many people can expect to encounter dis- edly pressured some participants to disclose their
approval. This study’s findings regarding bad reac- infection. Such findings highlight a need for people
tions to hepatitis C disclosure corroborate findings of to be better informed of their rights regarding dis-
the qualitative work by Crofts et al. (1997) and the closure of personal health information to health pro-
findings of the Anti-Discrimination Board of New fessionals and bureaucracies.
South Wales’ (2001) enquiry. The factors associated with widespread disclo-
In this present study about a half of participants sure of hepatitis C were level of education, the
indicated that they had disclosed their infection to presence of fatigue (a common symptom of hepatitis
at least four categories of people, and about a third C), advice regarding disclosure, unauthorized
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HOPWOOD ET AL.: DISCLOSING HEPATITIS C INFECTION WITHIN EVERYDAY CONTEXTS

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Author biographies

MAX HOPWOOD, PhD, is a social psychologist and Tamo is working in the field of cognitive
Research Fellow at the NCHSR. His research neuroscience.
interests include the socio-cultural dynamics of
CARLA TRELOAR, PhD, is an Associate Professor
injecting and other illicit drug use, bloodborne
virus transmission and quality of life for people and Head of the NCHSR Hepatitis C
living with hepatitis C. Programme. She is a social and health
psychologist with a long-standing interest in
TAMO NAKAMURA, PhD, is a psychologist with bloodborne virus infections, injecting and other
experience in HIV/AIDS research. Currently illicit drug use.

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