Spirituality

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Spirituality Stigmatization A Pastoral
Response to people living with HIVHIV Pastoral
Care Seminar, 24th May 2007
Jim McManus, CPsychol,MFPH,MEPS,DipPsych Assistant
Director, Health Improvement
jim.mcmanus_at_bdpct.nhs.uk
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Methodology

• See the situation
• Judge salient issues
• Act principles for pastoral response
• Theological reflection using case study and
  Lectio if time

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The Reality of HIV in London

• HIV infection has increased by 100 in the last
  five years
• Complex, chronic infection
• Significant complications from infection
• Unpredictability of course of infection
• Significant health challenges from medication
  especially antivirals
• Significant stigma experienced by communities
• Recent criminalisation of reckless or
  deliberate transmission including in married
  couples (and several convictions)

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25 Years of HIV
London is historically the epicentre of the UK
Epidemic
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Policy Context

• In England, The National Strategy for Sexual
  Health and HIV, published in 2001, opened the
  discussion to further improve sexual health
  services and prevention.
• The English Public Health White Paper Choosing
  Health (December 2004) highlighted sexual health
  as one of the six key areas for health service
  development.
• Previous policy initiatives 1990, 1994, 1998

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Some Key Issues

• The unique clinical features as well as the
  stigma and discrimination that surrounded the
  early HIV epidemic led to the establishment of
  stand alone services where patients were managed
  by specialists.
• However, the escalation in the number of
  individuals seen for HIV care, together with
  increases in complex patient management, has put
  pressure on existing HIV services. These
  pressures have been felt not
• Between 2004 and 2005,the increase in individuals
  seen for care outside London was almost double
  that of the capital (17 versus 9).

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HIV and AIDS diagnoses and deaths, UK
Large population of people living with HIV
Numbers will rise, for recent years, as further
reports are received. Clinician reports of new
HIV/AIDS diagnosis
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HIV diagnoses by exposure category, UK
Numbers will rise, for recent years, as further
reports are received. Clinician reports of new
HIV/AIDS diagnosis
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Late diagnosis of HIV infection
n2356 n156
n2571 n1478
n7450
Reports of HIV/AIDS diagnosis and CD4
Surveillance
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Number of individuals accessing HIV care, UK
Census of individuals accessing HIV-related
care
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Rates of adults accessing HIV care by residence
1996
2005
Census of individuals accessing HIV-related
care
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Greatest Infection Rates

• In 2005 there were 2356 new diagnoses in MSM and
  19 863 accessing HIV related care the greatest
  numbers recorded since the start of the
  epidemic.
• MSM remain the behavioural group at greatest risk
  of acquiring HIV within the UK. Among those
  attending sentinel GUM clinics in 2005, the
  annual HIV incidence was estimated to be 3.1 and
  the prevalence of previously undiagnosed HIV
  infections in those aged under 25, an indicator
  of relatively recent transmission, was 1.5 for
  London and 1.3 outside London.

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HIV diagnoses and individuals accessing HIV care
1Numbers will rise for recent years, as further
reports are received. Reports of new HIV/AIDS
diagnoses and census of individuals accessing
HIV-related care
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HIV-infected individuals resident outside the SHA
which provides their HIV care
Census of individuals accessing HIV-related
care
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Ethnic group of individuals accessing HIV care by
SHA 2005
Census of individuals accessing HIV-related
care
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Exposure category of individuals accessing HIV
care by SHA 2005
Census of individuals accessing HIV-related
care
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Prevalence of previously undiagnosed HIV
infection inside/outside London
Unlinked anonymous testing of GUM clinic
attendees
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Overview
Tuberculosis HIV-TB interaction and co-infection

• Most common cause of death in people with HIV
  worldwide
• HIV infection increases the likelihood that new
  infection with M. tuberculosis (due to immune
  suppression) will progress rapidly to TB disease
• HIV is the most potent factor known to increase
  risk of progression from M. tuberculosis
  infection to disease
• Co-infection is a major issue in London
• Treatment measured in months

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Special Issues

• Women and Children
• African Communities
• Drug Using Populations
• Gay and Bisexual Men / MSM
• Co-infections
• Psychological and Neurological Morbidity
• Organic Damage and dementia
• Toxoplasma and other Opportunistic Infections
• Silence syndrome
• Psychological impact
• Disability Discrimination Act

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Stigma

• Sigma Research into stigma of living with HIV
• Psychological consequences of stigma
• Increases speed of progression of illness
• Isolation
• Self-Worth
• Spiral of Difficulties

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Stigma
Strong link between stigma and progression of
illness in many diseases, especially HIV. This
has a pedigree of evidence for a biopsychosocial
pathway

• Sigma Research into stigma of living with HIV
• Psychological consequences of stigma
• Increases speed of progression of illness
• Isolation
• Self-Worth
• Spiral of Difficulties

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Visibility of Stigma

• HART means people live longer on the whole and KS
  lesions may be slightly less common
• But disfigurement still comes with HIV (eg
  lypodystrophy, wastingsarcomas)
• Still major challenges and very debilitating
• Psychological reactions
• Succumbers give up
• Survivors manage
• Thrivers - live to the full John 10.10 with
  an eye on the last things

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Stigma

• Has different forms in different parts of London
• Will require differing responses
• CASE STUDY
• Recently diagnosed person

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A simplified psychosocial model for
stigmaProtective and vulnerability factors
Services
Loved ones
Friends
Workplace
Church
Stress assessment
Positive Stress Eustress Distress
Self Value and Identity
Challenges from illness
Challenges from perception of illness, death,
life as compromised
Guilt
Challenges from Society
Challenges from Faith
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Acting on These

• Protective Factors
• Key things which will help people develop and
  retain positive sense of self
• Help people make positive assessment of stressors
• Key examples managing a working life while on
  HART (managing the stressors well can improve
  life quality and health)

• Vulnerability Factors
• Factors which predispose us to be vulnerable to
  stigma or illness
• Act on these to reduce or neutralise them
• Help person see and work through them
• Key examples disfigurement or smoking behaviour
  and progression of HIV infection

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HIV-positive London residents seeking treatment
and care in 2005, by Sector and Primary Care
Trust of residence per 10,000 adult population
(Source Survey of Prevalent HIV Infection
Diagnosed)
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HIV new diagnoses by hospital of diagnosis by
Sector, Primary Care Trust and diagnosing
hospital 2000 to 2005Source HIV new diagnoses
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A Theological Analysis to Stigma - Summary

• The ministry of Christ to reach out and include
• The role of the Church sacramental community
• Societal Level
• Parish Level
• Individual Level
• Teaching of Benedict XVI

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Motifs in Pastoral Care responding to Stigma

• Unite to the Cross a good pedigree but this
  might reinforce the worries and fears during
  disease progression so need a context in which it
  is appropriate
• Call to Life and wholeness
• Jesus in the Synoptic Gospels
• Individual pastoral care without any social
  action is not authentically Catholic
• Reformed Theology in recent years
• UNAIDS Theological Commission
• Piece of Lectio

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Two key questions

• Is HIV theologically special in and of itself, or
  is it what we make of it that makes it so?
• Stigma
• Structural and social sin inequalities
• Not listening to the Gospel or Tradition
• Given our Catholic heritage of teaching, why are
  we listening to Reformed theology when we havent
  yet bottomed out what our own tradition may have
  to say?

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A Catholic Theology of HIV 1

• The person in the perspective of an economy of
  grace
• HIV and AIDs as illnesses in the perspective of
  the
• From Scripture through Tradition
• Take the person with HIV seriously moral and
  doctrinal theology
• Taking the person with HIV seriously means we
  have some tasks in Catechesis, Sanctification and
  Pastoral Care
• Taking the person seriously means taking the
  person in their economy of Life
• Taking the person seriously means engaging with
  Social Theology and with society and its
  institutions

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A Catholic Theology of HIV 2

• The nature and dignity of the human person
• The redeeming work of Christ
• The healing ministry of the Church
• Illness as Challenge and as opportunity
• Human life as lived in eschatological perspective
• Joy and Justice
• The Sacraments
• The Church as Sacrament - Schmaus
• The Doctrine of Human Ecology John Paul II
• Touch, Incorporate, Uphold Benedict XVI
• Jesus in the Synoptic Gospels uses then goes
  beyond the traditional socially sanctioned models
  of prophetic and healing ministry

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Some Theological Conclusions

• A Christology of HIV
• Unite to the Cross is a sign of Hope, not just a
  sign of passive suffering
• The ministry of Jesus dealing with the
  individual and the social context
• A Pneumatology of HIV
• A truly Catholic response to HIV builds upon a
  sacramental economy of grace to create a pastoral
  response which helps people LIVE with HIV, even
  in the face of death
• This provides a place for a theology of the Cross
  which Reformed Theology around HIV does not seem
  to do

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Pastoral Response
Secular and Christian Agenda

• What Sanctification
• How Build resilience and discipleship
• Psychological dimension of sanctification - can
  be seen as a means of building protective factors
  and reducing vulnerability factors
• Example of Jesus in the Gospels
• Sacraments
• Five Functions of Pastoral Care
• Creating an understanding of acceptance
• Creating a welcoming parish community
• Knowing the limits of your own competence
• Picking the main issues you can impact on
• Use of the Optio Fundamentalis
• Self awareness and self care on the part of the
  Pastor

Biological
Social
Spiritual
Psychological
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Some Starting Points for Parish and Area Level

• with respect to the fundamental rights of the
  person, every type of discrimination, whether
  social or cultural, whether based on sex, race,
  colour, social condition, language or religion,
  is to be overcome and eradicated as contrary to
  Gods intent
• Gaudium et Spes
• It is essential for every human being to have a
  sense of participating, of being a part of the
  decisions and endeavours that shape the destiny
  of the world.
• World Day of Peace Message 1985
• It is a strict duty of justice and truth not to
  allow fundamental human needs to remain
  unsatisfied, and not allow those burdened by such
  needs to perish. It is also necessary to help
  these people to acquire expertise, to enter the
  circle of exchange, and to develop their skills
  in order to make the best use of their capacities
  and resources
• Centesimus Annus

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