In response to concerns around the high prevalence of depression and anxiety experienced by people with HIV, Positive Life NSW facilitated a community consultation with the aims of uncovering the mental health needs of people with HIV, their resilience or otherwise in meeting challenges & the barriers to achieving good mental health. Kathy Triffitt (Manager, Health Promotion, Positive Life NSW) outlines the consultation process and outcomes from the service provider forum which considered the implications for community & clinical interventions, care & support, advocacy & health promotion. This presentation was given at the AFAO Positive Services Forum 2012.

3. Background
Investigate –
 mental health needs of people with HIV
 barriers to achieving good mental health
 resilience or otherwise in meeting mental health
challenges
 assessment and management of mental health to
identify gaps in services.

4. Background
 Focus on depression and anxiety
 Consistent with a preventative approach
- early detection and intervention
- risk management approach
 Feed into the advocacy and health promotion work
of Positive Life NSW
 Provide feedback on mental health needs to service
provides.

5. Literature review
 People with HIV are more vulnerable to affective
disorders, including depression
 Newman, C et al, (2009) found that gay men are at high
risk of major depression, but that HIV status is not
independently associated with major depression.
- higher rates of depression associated with factors
such as socio-economic hardship, isolation and
withdrawal.

6. Literature Review
Futures 6* reported that in the six months prior to completing
the survey:
 27.0% of respondents said they had taken prescribed
medication for depression
This is considerably higher than the 5.9% of the Australian population
who reported taking antidepressants in the (previous two weeks) in the
national Health Survey [Australian Bureau of Statistics, 2009].
 28.6%) of respondents reported taking medicine prescribed
for anxiety
*Grierson, J, Poer, J, Pitts, M, Croy, S, Clement, T, Thorpe, R, and McDonald, K (2009) HIV Futures 6: Making
Positive Lives Count, monograph series number 74, The Australian Research Centre in Sex, Health and Society,
Latrobe University, Melbourne, Australia.

7. Futures data
% PLWHA taking Rx in last 6 months for
depression and anxiety
35
30
25
20
Depression
15
Anxiety
10
5
0
F1. F2. F3. F4. F5. F6.
1998 2000 2002 2004 2006 2009

8. Literature Review
 Cooke et al, [2004]; Whettan et al, (2008) found HIV-
positive women were twice as likely as men to be
depressed (this is also observed in women who do not
have HIV)
 McDonald et al, (2005) Futures 4 reported:
- 29.9% of women were diagnosed with depression
- more than three quarters of these women reported HIV-
related health conditions and 38.4% had been diagnosed
with a major health condition other than HIV (the most
common Hep C).

9. Other Factors
Psychosocial impact of living long-term with HIV:
- loss of social networks (loss of relationships,
friendships and social connectedness; inability
to make new relationships)
- “lost expectations and opportunities” (e.g.
career,earning capacity, or sense of future or
longevity, quality of life)

10. Other Factors
 Mid 1996 with the introduction of HAART options changed
dramatically (“adjust to a new way of living with HIV”;
dramatic shift from planning short term to planning for a
future with little information on how to do this).
We were given our lives back but no one told us how to
plan long-term. Many struggled to rebuild their lives. Terry
(GETTING ON WITH IT AGAIN - Living longer with HIV, Positive Life NSW, 2008)
We have missed the crux of rebuilding people’s lives.
That’s what got lost and a lot of people are stuck in limbo.
They’re stuck because they’ve got financial constraints.
They’re stuck because their financial constraints bring a
smaller world to them […]. Michael
(GETTING ON WITH IT AGAIN - Living longer with HIV, Positive Life NSW, 2008)

11. Other Factors
 Daily living for many people with HIV (in Australia)
includes interactions between growing older (premature
ageing) and living with other health conditions (e.g.
cancer, diabetes, heart disease).

12. Community Consultation
 Twenty people with HIV:
- 13 gay men (recruited via community media)
- 7 women (recruited through NAPWA
Women’s Network, Positive Life and ACON
Women & Families Project)
 Semi-structured interviews
 Discussion group?

13. Demographic Profile
 Respondent Age:

14. Demographic Profile
 Where respondents live:
- Men (inner city, Sydney; inner west and
western suburbs)
- Women (inner city Sydney, western suburbs,
Central coast NSW)
 When respondents were diagnosed:
- 2 women and 4 men diagnosed over the last
12 months – 3 years; with other participants
diagnosed between 5-10 years and over 10
years.

15. Demographic Profile
 Employment:
NB There is no significant difference between the profiles of people working,
studying and those on the DSP in relations to the issues identified in the
recommendations.

16.  Interplay between Mental Health and HIV
Is HIV the cause or are there other factors (e.g. prior
condition)?
- 80% reported a pre-history of mental health
(namely depression and anxiety)
- 45% identified a family history of depression
It was not clearly identified in this consultation what is HIV-related, pre-
dates HIV or is exacerbated by an HIV diagnosis.

17. Recommendations
 Intervention, care and support (both in
community (workforce) and clinical settings)
 Advocacy
 Health promotion
 Research

18. Recommendations
 Intervention, care and support (both in community
(workforce) and clinical settings)
(e) Community
Increase the capacity of peer support/ community development
workers and others working directly with HIV-positive people to:
- recognise the signs and symptoms of depression and
anxiety
- develop ‘first aid strategies’ for dealing with mental
health crisis
- know where to get help and refer people

19. Recommendations
Key considerations:
 give priority to early intervention and preventive
measures (develop a risk management approach)
 recognise the mental health impact of:
- specific HIV-related events (including the experience
of diagnosis, disease progression, starting treatments)
- life changing events
 acknowledge the stigma of mental health, which may
prevent people from speaking about mental health
concerns and seeking treatment.

20. Recommendations
Services and programs need to:
 support a strengths-based approach to service provision:
focus on individual strengths and resources to achieve
goals rather than programs planned around ‘welfare
dependency’
 ensure they are providing a responsive peer support
program for all people with HIV which not only addresses
social isolation, but also other opportunities to build
resilience
 support an integrated wellbeing framework (e.g. Healthy
Life Plus or Poz Quest)

21. Recommendations
Services and programs need to:
 inform people on strategies to get the best outcomes
from the therapeutic relationship:
- finding the right therapeutic match
- therapeutic goals
 provide information on where to get help/ financial
support
 build individual capacities to talk about depression and
anxiety
 address notable gaps in peer support (e.g. women and
newly diagnosed)

22. Recommendations
Services and programs need to:
 support the sharing of personal strategies and
perspectives on mental health
 ensure mental health and problematic drug (crystal)/
alcohol use) are positioned within an AOD framework
 provide more opportunities for people with HIV to
participate in volunteering both within and outside of HIV.

23. Recommendations
(b) Clinical
 Assess the capacity of GPs in high caseload clinics to
provide ideal levels of mental health assessment and
support (Newman et al, 2009)
 Tailor mental health interventions to meet individual needs
 Provide mental health screening at particular points in a
person’s life, such as starting treatment, significant personal
or family event, diagnosis of other health conditions.
- A risk management approach may prevent anxiety
and depression from escalating into something, which
requires an intensive intervention.

24. Recommendations
(b) Clinical
 Assess people diagnosed with heart disease or diabetes
for depression and anxiety. While other illnesses are
treated depression may not be accounted for or even
diagnosed. Also unexplained depression may be
accounted for if tested for diabetes or heart disease.
- Weiser et al, (2004) found only 1 in 4 people have
depression alone; a person diagnosed with
depression has other chronic conditions.
- Nearly 50% of people with asthma may also
experience depression; and depression is twice as
prevalent among people with diabetes as it is in the
general population (Anderson et al, [2001])

25. Recommendations
Treatment for depression/ anxiety:
 70% reported low treatment adherence (psychological
interventions)
Reasons included:
- inappropriate referrals, finding the right support
- poor understanding of the therapeutic relationship
(goals etc)
- confidentiality issues
- ability to attend appointments (study, childcare,
work commitments)
- cultural appropriateness (lack of empathy)
- financial constraints
- finding a psychologist/psychiatrist who will bulk bill
- loss of confidence in services

26. Recommendations
Low treatment uptake for depression/anxiety:
 70% reported low treatment uptake (e.g. antidepressants)
Reasons included:
- libido
- body shape change
- pre-history of treatments (side effects)

27. Recommendations
(c) Advocacy
 Advocate for Medicare funded Chronic Disease
Management, GP Management Plans and Team Care
arrangements to:
- incorporate flexibility
- provide mental health support, particularly
access to affordable mental health providers,
access to therapists and counsellors for less
intensive or preventive/ maintenance of
mental health conditions such as anxiety and
other social disorders.

28. Recommendations
(c) Advocacy
 Advocate for more flexible hours in clinical and
community mental health settings
 Work with mental health professionals and governing
bodies (Mental Health Association of NSW) to improve
knowledge of and access to bulk billing services.

29. Recommendations
(d) Health Promotion
 Raise awareness of the importance of early intervention
and treatment
 Promote positive representations to reduce stigma and
‘normalise’ the experiences of mental health
 Produce resources on strategies to get the best
outcomes from the therapeutic relationship:
- finding the right therapeutic match
- goals of psychological interventions (e.g. the
differences between cognitive behavioural therapy,
counselling and psychiatry)
- identifying triggers for depression and anxiety
- where to find support.

30. Recommendations
(e) Research
 Advocate for social research on mental health (wellbeing
and resilience,adapting and coping) and also the
sociological and emotional impacts of HIV on women
 Surveys such as Futures tend to select out people with
cognitive disability/mental health issues/psychiatric
disability/ABI. We lack evidence re service gaps for
people with mental health issues (and other cognitive
impairments).
 There are few studies in Australia on positive mental
health and its effects, including coping, competence,
support seeking and adjustment.

32. Forum Recommendations
Community Workforce
Over the next two years what can be done to build the capacity of the
workforce?
 Main emphasis of discussion: build professional
relationships between mental health and HIV services
that are not only driven by acute care service needs but
focus also on the emerging demand for prevention
interventions and early response systems.

33. Forum Recommendations
Community Workforce
 Improve the capacity of the HIV worker to respond to
mental health needs
 Improve the capacity of the mental health worker to
respond to HIV needs
 Ensure service providers in both sectors have sufficient
mental health and HIV expertise to assess and refer
effectively.

34. Forum Recommendations
Advocacy
What are the key advocacy priorities?
How do we achieve these over the next two years?
 Need to revisit the subject with a focus on systemic
advocacy and policy as opposed to individual
advocacy
 Medicare Funded chronic disease management:
highly relevant for people ageing with HIV.
 Need for GP clinic practice nurses to be trained re the
issues, including sensitivity training for dealing with
older HIV positive people with mental health/cognitive
problems.

35. Forum Recommendations
Advocacy
 Mental health plans need to be coordinated with
chronic disease management – all should be
seamless and mainstreamed.
 Community organisations – AIDS Councils and
PLHIV orgs - need to engage with Medicare Locals
and Local Hospital Networks re service delivery issues
for PLHIV.
 Confusion re mental illness/ABI/intellectual disability
is rife in community orgs. Serious impacts re referrals
and engaging with clients. Need for training/
professional development.

36. Forum Recommendations
Advocacy
 In terms of management plans, probable that GPs and
practice nurses coordinating care are unaware of range
of services available – survey of practitioner/providers
would be good.
 Consider relationships with mainstream services (e.g.
CALD, Pozhets, rural, priority populations). How?

37. Forum Recommendations
Clinical
What can be done to improve levels of mental health assessment, care
and treatment to prevent depression and anxiety from escalating?
 All clinicians need to increase knowledge of mental
health assessment
 GP referral database to mental health workers (including
counsellors, clinical psychologists, mental health nurses
and social workers) with experience working with PLWH/
A w/anxiety and/or depression. Database would also
provide information re: Medicare mental health benefits/
Allied Health; Registration body (i.e. APS, ACA, PACFA,
etc) and status (active, inactive, etc).

38. Forum Recommendations
Clinical
 Time requirement for assessment (needs at least 1.5
hours), not a few questions at the end of a GP
consultation
 Modify A1use of MSE section guidelines
 Flu MH r/v’s – clinicians; use of standardised
assessment and psychometric testing (e.g. DASS, K10)

39. Forum Recommendations
Clinical
 Online assessment/ treatment – CBT (e.g. Mood-gym
(ANU); CRUFAD (SVH))
 Work closely with the individual’s needs (ask what they
want or what they think helps them?)
 Gap in services – requiring support not necessarily
appropriate for MH services, particularly for socially
isolated individuals
 Recovery model for HIV/mental health care
 Flexibility re contact with services (e.g. email; mobile)

40. We would like to thank all the people who have been
willing to take part in this consultation. It is an act of
generosity on their part to share their experiences with
us.
For more information
kathyt@positivelife.org.au