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.

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.

Background

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.

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.

Literature Review

Futures data% PLWHA taking Rx in last 6 months for

depression and anxiety

0

5

10

15

20

25

30

35

F1.1998

F2.2000

F3.2002

F4.2004

F5.2006

F6.2009

Depression

Anxiety

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).

Literature Review

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)

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)

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).

Other Factors

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?

Demographic Profile

Respondent Age:

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.

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.

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.

Intervention, care and support (both in community (workforce) and clinical settings) Advocacy

Health promotion

Research

Recommendations

Intervention, care and support (both in community (workforce) and clinical settings)

(a) CommunityIncrease 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

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.

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)

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)

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.

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.

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])

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

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)

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.

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.

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.

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.

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.

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.

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.

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.

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?

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).

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)

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)

Forum Recommendations

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