National Hepatitis C Needs Assessment

Kerry Paterson

Australian Hepatitis Council

Why, How, Who, Where

• To inform the development of the AHC Health Promotion Strategy 2003-2005

• To add currency to work of Burrows & Bassett 1996

• Interviews, focus groups with– People with hep C– Service providers

• Conducted in WA; SA; Qld• 74 people participated

Interview / focus group questionnaire

• Diagnosis• Disclosure• Maintaining health & wellbeing• Seeking support• Antiviral treatment• Interactions with doctors• Keeping informed about hepatitis C• Community Awareness• Preventing transmission of hepatitis C

Diagnosis

• The diagnosis experience is pivotal in how people with hepatitis C go on to manage the virus and its impacts in their lives.

• Participants reported poor practices, including lack of knowledge, lack of communication skills and judgemental attitudes amongst general practitioners in providing an antibody positive diagnosis. GPs are often ill equipped to offer appropriate information, support or referrals to people with hepatitis C.

• “I nearly died of shock…I cracked…it felt like a death sentence”

• “before I was diagnosed I knew nothing about hep C…I did not give consent for the test and was told nothing about it…just rung to say they had the results of the blood test…you’ve got hep C…and didn’t tell me much more…but he did refer me to a hep C worker”

• Services are available for those who have the necessary resources to access them.

• Many reported a period of denial and self blame following diagnosis:

‘I spent a lot of time in denial…I just wanted to be normal and didn’t want to think about it…if there was nothing to help me, I didn’t want to dwell on it’

‘it was frightening at first…who is going to look after my kids…I felt sorry for myself…then the self blame…it’s all my fault’

• This period of denial may be particularly unsafe for young people who appear to be at increased risk of self harm following diagnosis:

‘after diagnosis my life went stupid for a year…I went crazy, suicidal…lost all compassion…felt nothing…it was like passive suicide’

‘I was still using when I was diagnosed and hit it hard…I lost it for awhile’

• Amongst prisoners and current IDU, there is often raised awareness of hepatitis C, but little understanding of the virus and its implications.

Disclosure

• Factors that influenced participants’ disclosure– Level of trust in relationship & whether

they thought person would tell others– Reason for disclosure – does the person

need to know?– Person’s level of hepatitis C knowledge– Person’s knowledge of their drug use– Perceptions about whether person would

be judgemental

• Disclosure is a staged thing for most people – as they feel better informed & have greater acceptance of the infection, they are better able to deal with other people’s questions following disclosure

• Participants experienced a range of difficulties disclosing their positive status to partners, family, friends

• “I told my partner straight away…she was more upset than I was, so you have to handle other people’s upset as well…it is still difficult and emotionally traumatic”( five months later)

• I haven’t told my mother…I am being protective of her and also I don’t want her to know about my life…it makes me feel vulnerable”

• Many people with hepatitis C are unaware of their rights in relation to anti-discrimination and privacy laws.

• Many reported judgemental attitudes and breaches of confidentiality when hepatitis C status disclosed in health settings and the workplace.

Disclosure in health settings

• “there’s a lot of focus on how you got it at hospitals”

• I had a big run in with the dentist…he told me to make appointments in the future at the end of the day as it took longer to clean up after me…I haven’t had my 6 monthly call back and I won’t go back there anyway”

Disclosure in the workplace

• “I have not told my employer as I don’t want to risk losing my job”

• I haven’t had too much control over who has been told in the workplace…people have been told without my consent”

• I had to invent an alternative story…not lying, but omitting some things…just saying I’ve got a liver condition”

Maintaining health & wellbeing

• Physical symptoms reported – tiredness, nausea, abdominal discomfort, joint pain, liver pain

• Psychological symptoms – depression, mood swings, panic attacks, ’foggy mind’, irritability & impatience, feeling “down” when unwell

• Most reported modifying diet and alcohol intake to maintain their health

• Many reported practising a range of health maintenance measures – resting more, eating well, exercise and relaxation techniques, complementary therapies to assist in managing symptoms

• While many reported regular monitoring of physical health with GPs, few seek assistance from health professionals to manage psychological health issues, instead trying to manage these themselves.

– “ I try to block out hep C on my bad days…I have been crying a lot lately and feeling depressed. I am trying to manage this myself, by keeping to myself when I feel down”

– “sometimes I don’t feel good…I get a bit depressed and lay around the house all day…but overall I try to keep active and get out of the house”

• People from hepatitis C priority population groups face many barriers to health maintenance– Lack of understanding about benefits of

health maintenance– Lack of resources to maintain health– Low priority of hepatitis C compared to

other issues– Confusion about symptoms related to

hepatitis C

Antiviral treatment

• Despite wider availability and improvements in efficacy of antiviral treatment with pegylated interferon and ribavirin combination therapy (overall sustained response rate 55%) – only an estimated 7% of people with hepatitis C have undergone treatment

• The Road Not Taken: The 2002 Review of the National Hepatitis C Strategy 1999-2000 to 2003-2004

For people who had accessed treatment:

– Motivation was not only about preventing future health problems but also to alleviate emotional impact of living with stigmatised condition

– “I wqnted to get rid of the disease, and not feel like a ‘pox box’ anymore…I did feel alienated from others, but I’m more confident now that I have cleared it”

Being on treatment

Personal & medical support to manage the side effects over a long period of time was most important issue in successfully completing treatment

“the worst feeling was the general feeling of helplessness, depression and anxiety and feeling like it was never going to end”

“ my advice… get everything in your personal life sorted out to the max – have free time and good friends around you and don’t be afraid to pick up the phone and talk to someone”

Treatment barriers

• Some of the barriers to uptake include:– Lack of knowledge about antiviral treatment

amongst GPs & people with hep C– Concerns around the side effects, particularly

depression– Lack of personal resources to support a

significant period of ill health– Disclosure issues when side effects are visible

or people need to negotiate consideration in their workplace

• Additional barriers for priority population groups include:– Lack of treatment services in rural & remote

areas– Lack of culturally appropriate support for

aboriginal people and people from CALD– For people who currently inject, there were

concerns about biopsy & access to pain relief, concerns about injections, & lack of understanding about eligibility criteria

– Lack of resources & structural barriers to support treatment for prisoners

Interactions with doctors

• Many people reported negative interactions with doctors

‘I get a lot of “you’re still using” stuff from doctors and need to keep justifying that I’m no longer into drugs’• ‘doctor shopping’ to find knowledgeable and

non-judgemental doctors was common ‘I had to seek out a doctor who had good

information through the Council…you can’t just approach any GP for the information’

‘I’m still looking for a doctor who isn’t going to judge me on my past history’

• Participants wanted their doctors to:• Have good knowledge of hepatitis C• Be sensitive to the associated stigma• Be non-judgemental about injecting drug use • Provide referral options• Communicate in accessible language• Have respect for their knowledge of their

condition• Allow enough time to answer their concerns

Keeping informed about hepatitis C

• Most reported taking an active interest in learning about hepatitis C.

• While some trusted doctors & CNCs to keep informed, others relied on Hepatitis Councils. For many, learning about hepatitis C takes place in relative isolation.

• Learning about hepatitis C & managing its impacts is a staged process. Services often do not take this into account.

• Most described their preferred learning process as a combination of reading pamphlets and being able to discuss issues with healthcare workers

• Written resources raise awareness of hepatitis C, but are of limited value, particularly for people from the priority population groups

‘literacy is a huge issue in prisons…it really limits your ability to access information if you have difficulties reading. They have posters up everywhere…so you get awareness it is an issue, but you don’t get much other education’

‘words, words, words, words…pamphlets are boring’

‘a large part of the drug using culture is oral…information is passed on by word of mouth’

Community Awareness

• Participants felt the lack of community awareness about hepatitis C contributes to the fear and stigma

• Onus is on people with hepatitis C to educate others about the virus in the disclosure process

• Belief that it has also meant hepatitis C is not taken seriously by healthcare workers

• Barriers to raising awareness– Lack of political commitment to fund mass

media campaign, due to fear of political backlash

– Denial of injecting drug use in the community

• Many thought government considered people with hepatitis C unworthy of resources being spent on them‘looking after the community does not include injecting drug users’

In Conclusion

• Despite progress in:– Developing knowledge about the virus and it’s

impacts on people’s lives– Treatment efficacy and availability– Increased information resources– Increased workforce training

• For many people, little has changed to improve their quality of life

• Little has been achieved in reducing stigma and discrimination

• Hepatitis C remains largely hidden in the community, which impacts on people’s ability to accept the virus & manage it in their lives.

• Significant proportion of people with hepatitis C are from marginilised groups, who have:– experienced some form of social dislocation– have few personal resources– low self esteem – low expectations of being able to effect positive

changes in their lives– a lack of trust in health services