National Hepatitis C Needs Assessment

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National Hepatitis C Needs Assessment

• Kerry Paterson
• Australian Hepatitis Council

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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

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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

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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.

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• I nearly died of shockI crackedit felt like a
  death sentence
• before I was diagnosed I knew nothing about hep
  CI did not give consent for the test and was
  told nothing about itjust rung to say they had
  the results of the blood testyouve got hep
  Cand didnt tell me much morebut he did refer
  me to a hep C worker

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• 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 denialI just
  wanted to be normal and didnt want to think
  about itif there was nothing to help me, I
  didnt want to dwell on it
• it was frightening at firstwho is going to
  look after my kidsI felt sorry for myselfthen
  the self blameits all my fault

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• 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
  yearI went crazy, suicidallost all
  compassionfelt nothingit was like passive
  suicide
• I was still using when I was diagnosed and
  hit it hardI 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.

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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?
• Persons level of hepatitis C knowledge
• Persons knowledge of their drug use
• Perceptions about whether person would be
  judgemental

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

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• I told my partner straight awayshe was more
  upset than I was, so you have to handle other
  peoples upset as wellit is still difficult and
  emotionally traumatic( five months later)
• I havent told my motherI am being protective of
  her and also I dont want her to know about my
  lifeit makes me feel vulnerable

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• 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.

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Disclosure in health settings

• theres a lot of focus on how you got it at
  hospitals
• I had a big run in with the dentisthe told me to
  make appointments in the future at the end of the
  day as it took longer to clean up after meI
  havent had my 6 monthly call back and I wont go
  back there anyway

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Disclosure in the workplace

• I have not told my employer as I dont want to
  risk losing my job
• I havent had too much control over who has been
  told in the workplacepeople have been told
  without my consent
• I had to invent an alternative storynot lying,
  but omitting some thingsjust saying Ive got a
  liver condition

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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

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• 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.

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• I try to block out hep C on my bad daysI 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 dont feel goodI get a bit
  depressed and lay around the house all daybut
  overall I try to keep active and get out of the
  house

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• 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

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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

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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 anymoreI did feel alienated
  from others, but Im more confident now that I
  have cleared it

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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 dont be afraid to pick up
  the phone and talk to someone

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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

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• 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

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Interactions with doctors

• Many people reported negative interactions with
  doctors
• I get a lot of youre still using stuff
  from doctors and need to keep justifying
  that Im 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 Councilyou cant just
  approach any GP for the information
• Im still looking for a doctor who isnt
  going to judge me on my past history

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• 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

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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.

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• 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

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• literacy is a huge issue in prisonsit really
  limits your ability to access information if you
  have difficulties reading. They have posters up
  everywhereso you get awareness it is an issue,
  but you dont get much other education
• words, words, words, wordspamphlets are
  boring
• a large part of the drug using culture is
  oralinformation is passed on by word of mouth

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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

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• 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

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In Conclusion

• Despite progress in
• Developing knowledge about the virus and its
  impacts on peoples 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

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• Hepatitis C remains largely hidden in the
  community, which impacts on peoples 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

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