Barriers and motives of active drug users to undergo treatment for chronic HepatitisC: a qualitative

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Barriers and motives of active drug users to
undergo treatment for chronic Hepatitis-C a
qualitative research

• M.S. Vonk MSc
• Public Health Services, Amsterdam
• 16 November 2009, Manchester
• C.E.A. Lindenburg, M. Prins U. Davidovich

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Background

• High prevalence-rates of Hepatitis-C (HCV) in
  active drug users (DU) 49-79
• Estimated number of infected DU in The
  Netherlands 12,000-37,000
• Treatment is long and can cause severe
  side-effects
• DU are a difficult group for this long, intense
  treatment
• However, a lot of DU tested positive for HCV but
  refuse treatment

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Background

• Public Health Service of Amsterdam started the
  Amsterdam Cohort Studies (ACS) in 1985
• Cohort of 500 DU are in active follow-up
• DU visit every 6 months for bloodscreening and
  fill in questionnaires
• The Public Health Service of Amsterdam provided
  HCV- screening for this group of DU
• After, additional screening and treatment
  opportunities were provided (Dutch-C project)

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Methods - Recruitment
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Aims

• Reasons to perform this research were
• No scientific data about barriers and motives for
  treatment, directly obtained from DU
• Feedback for improving the current program
• Enhance motivational communication in recruitment
  campaigns
• A basis for developing programs elsewhere
• Aims of this research were, to explore
• The barriers that served as a basis for refusal
  of treatment among DU
• The motives for treatment acceptance among DU
• The motives for treatment adherence and
  completion among DU

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Methods

• Qualitative design gain an in-depth
  understanding of human behaviour
• Data-collection by in-depth semi-structured
  interviews (30-45 minutes)
• Sample size based on saturation of data
• Inclusion was based on accessibility and
  availability of the participants
• Interviews recorded and transcribed
• Participants received 12 euro for participation

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Interviews analysis

• Steps of analysis (based on Grounded Theory
  method)
• Open coding (no pre-assigned codes)
• Grouping open codes into groups with similar
  traits (categories)
• Grouping categories in major themes
• MaxQda was used for analyzing data
• Health Belief model (Rosenstock, 1988) was used
  for interpretation of the results
• Increased perceived susceptibility for, and
  severity of the disease will lead to positive
  treatment decision
• Expectations about outcome of the disease
  (perceived costs, self-efficacy and perceived
  benefits) have an influence on treatment decision

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Results

• 22 participants were recruited for this study
• 4 DU who refused treatment
• 18 DU who accepted treatment
• Barriers for treatment
• Former barriers of DU who accepted treatment
• Present barriers of DU who refused treatment
• Motives for treatment
• Reasons to continue treatment

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Barriers for treatment

• Fear of treatment side-effects
• Wrong assumptions about the consequences of HCV
• Lack of knowledge of HCV
• Doubt about efficiency of therapy
• Rejection by caregivers
• Frustration concerning discrepancy in messages
  from different caregivers

Yes, I was a junky. Thats how they call me,
straight to my face. I was a druguser and a junky
and I didnt have any perseverance
Because I didnt notice anything about myself.
So they could have maybe found it or something,
but I didnt feel bad at all. And at this moment
I still dont feel bad
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Motives for treatment

• Avoidance of negative consequences related to HCV
• Trust in organization or caregiver
• Seeing treatment as opportunity to change ones
  life
• Persuasive influence of other people who
  receive(d) treatment
• Chance to feel better
• Good cure prognosis
• Care for the personal environment of the DU

If I dont follow treatment there will be a
reasonable possibility that I will be dead in few
years. And that idea strengthened my motivation
to follow therapy
This women was concerned about her pet It was
either the treatment or the dog and I wouldnt
want to go for that. The dog would be superior in
this case. Eventually help came, my friend said
Go, Ill take care of the dog.
And try to repair what can be repaired. For years
Ive only just ruined my body, so now I have to
try to repair what can be repaired
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Reasons to continue treatment

• Total committment to medical recommendation
• Support
• Good news about results of treatment
• To do well in ones life

I liked coming here, to have a little
conversation. Make a joke with S. That had an
influence to continue treatment. I Find that an
advantage
My desire to do something good in my life. After
50 years I can finnally accomplish something
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Conclusions

• Reasons (barriers) differ strongly between
  individuals
• To improve treatment enrolment
• Increasing perceived susceptibility for, and
  severity of HCV among DU
• Provide tailored information that targets each
  individual barrier
• Generating and communicating positive peer
  opinion regarding participation in treatment.
• The perceived high costs of treatment can be
  absorbed through offering extensive and ongoing
  personal support before and during treatment by
  caregivers

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Acknowledgements

• Dr. Udi Davidovich Public Health Services
  Amsterdam
• Dr. Maria Prins Public Health Services Amsterdam
• Dr. Claudia Gamel Utrecht University,
  department of Nursing Science
• Dr. Christine Weegink Academic Medical Center,
  Amsterdam
• Dr. Henk Reesink Academic Medical Center,
  Amsterdam
• Drs. Karen Lindenburg Public Health Services
  Amsterdam

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Qualitative Research

• Qualitative research is characterized by
• Demonstration of relevant concepts and themes
  related to
• subject of research
• Use of qualitative design
• Undiscovered scientific area
• Understand which concepts/ variables are
  experienced by the population under study
• Insight in experiences of treatment or attitude
• You dont want to demonstrate effect, but gain
  in-depth insight in human influence. Therefore
  you dont need to have a big sample.

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Health Belief Model
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Example of Analysis (coding)

• Quote
• I thought, well, if I will not do the therapy it
  will be a reasonable possibility that I will
• be dead in a few years. And that idea
  strenghtened my motive to go for the therapy
• Code knowledge of consequences HCV
• Category Avoidance negative symptoms related to
  HCV
• Concept Motive for treatment