HIV and AIDS Counseling, Bereavement and the Emotional Impact on those living with and affected by HIV and AIDS
Overview Part I Counseling and Disease Continuum Part IISome Insights on Bereavement Assistance for people living with HIV/AIDS and Part III Emotional Impact on the Infected and the Affected; Caring for the Dying/Grieving Part IV Theology: HIV and AIDS 3
World Health Organization Module 4 Sub Module 1 – PPT25 Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Session Objectives Identify common psychosocial issues of clients living with HIV Identify the link between VCT and treatment and care Describe the continuum of care Identify the interrelationship between disclosure, stigma and discrimination Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Psychosocial Issues Consideration of psychosocial issues is fundamental to HIV/AIDS counselling & care Counsellors need to view the client in a holistic manner within the context of their social environment A range of issues can be experienced by clients Different clients experience different issues – no two people are the same Issues can change across time & with disease progression Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Common Key Issues Confidentiality Difficulty accepting diagnosis Disclosure Discrimination and stigma Emotional reactions – shock, denial, depression, anger, fear, guilt, depression, anxiety, suicidal thoughts Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Common Key Issues Disease progression Changes in physical appearance Illness/deterioration in health Loss of control Death and dying Loss and grief Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Common Key Issues Relationships – partner, family, friends, child(ren) Financial difficulties Welfare – income/employment/housing Sexual difficulties Employment difficulties/loss of job Treatment issues – access, adherence, side- effects Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Interventions for Psychosocial Issues Psychosocial care encompasses a range of interventions that address the social & psychological issues & needs of PLWHA & their significant others Interventions can assist clients to: - Develop a support network - Experience autonomy - Gain a sense of control Counsellors play an integral role in facilitating interventions & care across the HIV disease continuum Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Possible Interventions Counselling – individual, couple, family, pastoral, group, community Support groups & peer support networks Emotional & spiritual support Economic support/welfare interventions Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Possible Interventions Medical interventions/symptom management Pharmaceutical management Regular health checks Nutritional care Palliative care Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Possible Interventions Home-based care STI care Family planning services Community activities Assistance to orphans & other vulnerable children Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 VCT is an entry point for HIV prevention, treatment & care Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 The HIV/AIDS Continuum of Care VCT is the entry point Proposes a range of interventions Incorporates a range of different people, resources and services Includes hospital care, community and home care over the course of the illness Provides comprehensive and holistic care for PLWHA and their significant others Counselling Issues Across the HIV Disease Continuum
World Health Organization Module 4 Sub Module 1 – PPT25 Prevention Care Continuum Service Continuum Counselling Issues Across the HIV Disease Continuum Voluntary Counselling Testing The entry point NGOs Churches Youth Groups Volunteers PLWHA District Hospitals HIV Clinics Social/legal Support Hospice Specialists and Specialised Care facilities Palliative emotional and spiritual support self care Primary Health Care Secondary Health Care Community Care Tertiary Health Care Home care Peer support Health posts Dispensaries Traditional Orphan care
The objective state of having lost someone or something precious; the objective situation of individuals who have experienced a loss. Refers to the particular grief that accompanies and is evoked by the death of a loved one. Bereavement
Grief 31 Refers to the psychological process of adjustment to any substantive loss or change Refers to the psychological process of adjustment to any substantive loss or change Grieving is about the natural response of people to all types of life crises—death, divorce, unemployment or retrenchment, loss of health, limbs or physical disappearance, loss of purpose and self-esteem; loss of anyone or anything we value. Grieving is about the natural response of people to all types of life crises—death, divorce, unemployment or retrenchment, loss of health, limbs or physical disappearance, loss of purpose and self-esteem; loss of anyone or anything we value.
Represents the culturally defined acts that are usually performed after a death Represents the culturally defined acts that are usually performed after a death Sorrow or regret expressed through customs and conventions Sorrow or regret expressed through customs and conventions Mourning
34 HIV-AIDS Bereavement in contrast to Cancer Bereavement Bereavement Assistance Levels of Grief Traumatic stress Grief-related depression symptoms Anxiety, depression, somatic symptoms Social Dysfunction Lower level of social support More likely to hide the cause of death Greater level of rejection Refuge from “support groups” than family
Purpose of Bereavement Assistance Infected Infected Acceptance of one’s situation / Integrate in the daily undertakings Management of Infection Eliminate adverse psychological burdens Make plans on how to live with the virus Enhancing Quality of life 35
Purpose of Bereavement Assistance Affected Affected Recognition and acceptance of the reality of loss Management of painful memories Eliminate adverse psychological burdens Coping with situational lifestyle changes resulting from loss Adapting to the loss, and reconfiguring their own life 36
A Gene Sense of Loss A General Sense of Loss physical ability cognitive ability (thinking) home, work social status and support sense of the future faith, hope, and a sense of God’s care Caitlin Ryan, Recommendations for a Support and Management Plan for People with AIDS and HIV Infection in the Republic of Korea (February 1990) 38
Reactions to HIV/AIDS Initial Response Shock Range of Emotions: confusion, despondency Difficulty in comprehending diagnosis Beginning to mobilize resources 39 Caitlin Ryan, Recommendations for a Support and Management Plan for People with AIDS and HIV Infection in the Republic of Korea (February 1990)
Reactions to HIV/AIDS Adaptation Stage Range of emotions: fear, sadness, guilt, anger, depression, etc. Possible displacement of anger by acting out (placing others at risk for infection) Beginning to cope with health status Dealing with stigma and need to manage information about HIV status Increased dependency Caitlin Ryan, Recommendations for a Support and Management Plan for People with AIDS and HIV Infection in the Republic of Korea (February 1990) 40
Reactions to HIV/AIDS Integration Stage Learning to live with chronic illness Feeling a broad range of emotions which may not be understood by family and friends Grieving cumulative losses Coping with increasing health crises Continuing risk reduction and management of stress Exploring spiritual concerns Re-negotiating relationships Caitlin Ryan, Recommendations for a Support and Management Plan for People with AIDS and HIV Infection in the Republic of Korea (February 1990) 41
Reactions to HIV/AIDS Stage of Advanced HIV-disease Need to cope with continued and worsening health crises Loss of body control, disfigurement, possible dementia Facing death and dying Caitlin Ryan, Recommendations for a Support and Management Plan for People with AIDS and HIV Infection in the Republic of Korea (February 1990) 42
Bereavement Stages Acclimation and Adjustment STAGE 1: Acclimation and Adjustment Adjusting to changes brought by the loss Functioning appropriately in daily life Keeping emotions and behaviours check Accepting support Phil Rich Ed. D., MSW, The Healing Journey Through Grief (January 1999) 44
Emotional Immersion and Deconstruction STAGE 2: Emotional Immersion and Deconstruction Contending with reality Development of insight Reconstructing personal values and beliefs Acceptance and letting go Phil Rich Ed. D., MSW, The Healing Journey Through Grief (January 1999) 45 Stages of Bereavement
Reclamation and Reconciliation STAGE 3: Reclamation and Reconciliation Development of social relations Decisions about changes in lifestyle Renewal of self-awareness Acceptance of responsibility 46 Phil Rich Ed. D., MSW, The Healing Journey Through Grief (January 1999) Stages of Bereavement
HIV/AIDS and Suicide Persons living with HIV/AIDS may experience thoughts about suicide, especially when they are first informed about HIV infection or when first admitted to hospital for AIDS-defining illness. Possible signs of that suicide is being considered: Previous attempts, Verbal or written threats Gathering of potentially dangerous items, Giving away valuables Extreme sadness, Withdrawal from family & friends, sudden mood elevation Source: Communities of Care Team Manual (Third Edition), AIDS Pastoral Care Network, Chicago, Illinois 47
HIV/AIDS and Suicide Ways to offer help … Take talk of suicide very seriously - get help fast! Listen … Loved ones may be afraid to talk with person about these things. Don’t be afraid to ask questions - keep talking until person calms down - that gives you time to get help Encourage the person to get professional help. Source: Communities of Care Team Manual (Third Edition), AIDS Pastoral Care Network, Chicago, Illinois 48
What are your reactions to the following statements: agree or disagree? 50
Examine your own Attitude / Paradigms People with AIDS are to be blamed for bringing this disease on themselves. 51
Examine your own Attitude / Paradigms The AIDS epidemic could be stopped if laws against prostitution and homosexual behavior were made stronger and if “foreigners” were sent home. 52
People with HIV and AIDS should have the same rights as other persons. 53 Examine your own Attitude / Paradigms
Men who have sex with men indulge in abnormal sexual behavior.
Examine your own Attitude / Paradigms All health care workers should be tested for HIV antibodies and removed from practice if found to be positive.
Identifying the Needs of the Dying and Caring for the Dying 56
57 Dying is a psycho-social, biological and spiritual process. The person going through this process is also considering in some way or another, the meaning of one’s having been in the world, being in the world, and now leaving the world. In this process the person goes through a series of intense feelings and reactions, and as caregivers we should be capable of observing and dealing with them comfortably. “a companion unto death”
Companion Expression of Feelings A companion sits and LISTENS, and encourages expression of these feelings, accepting them as they are. We may have to work as mediators for the family in guiding them as well. 58
Companion Overcoming Loneliness SITTING with them, and encouraging family members to sit with the dying person. Remember, it’s terrible to “die alone”. 59
Companion Give meaning to their past lives Helping the person to review their life, especially helping them to recognize that they have not lived their lives in vain, however small their “successes” might be. Focus on meaning and purpose of their life. 60
Companion Finding Meaning in the Present Moment Participate with the dying in their struggle to find meaning in the present process of dying. 61
Companion Need to let go of life Loosening of personal ties, pulling back, withdrawing, less intensity, etc. Companions/ Caregivers must assist the dying and the family in this delicate process of letting go. 62
Companion The need to deny death The counsellor must be aware of the dying person’s need to deny the finality of sickness from time to time. Even after they have accepted the reality, it’s important to let them use denial because the thought if death and family is just too much to accept. Never force the reality check on them. 63
Other religious/existential needs The need for meaning and purpose The need to give love The need to receive love The need for hope and creativity The need to relate with God 64
Fears of Dying DEATH PROCESS OF DYINGLOSS OF CONTROL LOSS OF LOVED ONES OTHER’S REACTIONISOLATIONUNKNOWNMEANINGLESSNESS 65
The Catholic Church on HIV and AIDS Prevention 67
68 Basic Guiding Principles Human Dignity [The value and dignity of human person] Solidarity [The rights and responsibilities of society] Grace [The love and compassion of God)
69 The approach of the Church is guided by a precise and all-rounded view of a human being ‘created in the image of God and endowed with a God-given dignity and inalienable human rights.’
70 HUMAN DIGNITY In the Gospels, Jesus not only physically cured leprosy patients, the paralytic and the woman with haemorrhage, but he also restored in them human dignity and their rightful place in the community.
71 HUMAN DIGNITY Every human being is created in God’s image, redeemed by Jesus, and called to everlasting life.
72 HUMAN DIGNITY All of us are called to live in ways that embody and express this dignity. There is then a serious call for personal responsibility and to personal behaviour change.
73 SOLIDARITY The Church’s teachings speak extensively about the rights and the responsibility of the society.
74 SOLIDARITY "A comprehensive AIDS education then has to place AIDS within a moral context; impart accurate medical information and challenge misinformation; motivate individuals to accept the responsibility for personal choices and actions; confront discrimination and foster the kind of compassion which Jesus showed to others; model justice and compassion through policies and procedures." (New Mexico Bishops, 1990)
75 "While preaching a Gospel of compassion and conversion, Jesus also proclaimed to those most in need the Good News of forgiveness. The father in the parable of the prodigal son did not wait for his son to come to him. Rather, he took the initiative and ran out to his son with generosity, forgiveness, and compassion."
76 GRACE "The love of God is so great that it goes beyond the limits of human language, beyond the grasp of artistic expression, beyond human understanding.... [God] loves us all with an unconditional and everlasting love" (Pope John Paul II)
77 GRACE Jesus has revealed a God who loves each of us unconditionally, a God who forgives our sinful actions. God is not vengeful. God respects human freedom, calling us to love and responsibility, but not interfering even with destructive choices.
78 Pope John Paul II cautioned young people about the myth of “safe sex” “Do not let yourselves be led astray by those who ridicule your chastity or your power to control yourselves. The strength of your future married love depends on the strength of your present effort to learn about true love. Chastity is the only safe and virtuous means to put an end to the tragic plague of AIDS. ” Documentation Catholique, No. 2068, 21 March 1993, p. 262.
79 Church’s teaching in the external forum and formation of conscience in internal forum “We too preach the gospel, but we try above all to form consciences”  Discernment of right or wrong in human acts, including those related to prevention of HIV: must take place with the benefit of Church’s teaching on right values related to individual behavior as well as to the common good with support and counseling to hear the “voice of God” echoing in one’s conscience.  Bishop Theodore Adrien Saar, President of Bishops’ Conference of Senegal at International Conference on AIDS in Religion, 1996.
80 Challenges for Pastoral Leaders The challenges for pastoral leaders are many: They often are called upon to accept the affected person’s expression of anger against the Church, the clergy, or God, and then to help the person discern God’s loving care and mercy in all human situations even those which involve illness and loss. They are expected to offer pastoral care which goes beyond traditional and familiar formulae for prayer. In order to provide compassionate, non-judgmental pastoral care-giving, they need to deal with their own unresolved emotional issues regarding sexuality and around serious illness, death and dying. Source: Mimi Blum and Robert Vitillo, Training Manual and Resource Guide for HIV/AIDS Trainers/Service Providers, Catholic Charities USA/University of Texas, Houston (1997): 155.
81 Challenge to the Church by Persons Living with and Affected by HIV Be a true reflection of Christ – for if Christ walked the earth today he would respond to the needs of people living with HIV and AIDS. Be the light of the world, drawing people with HIV to you, not making them to feel guilty and ashamed. We should be drawn to the church. Preach and live the gospel. We would like the church to be at the frontline in educating people about HIV and AIDS Talk about sex and sexuality in church, for God created sex. Teach about the right context of sex. Set an example by going for the test; WALK OUR WALK and know how we really feel. Support our initiative as people living with HIV. Source: At Research Feedback meeting, “Churches and HIV/AIDS”, Pietermaritzburg Agency for Christian Awareness, 23 November 2004.
82 Challenge to the Church by Persons Living with and Affected by HIV Involve us, acknowledge our presence in the church. For we are here in the church, we are Christians – children of God, the Blessed, not cursed. Stop preaching about AIDS as a curse. The gospel you preach should meet our spiritual needs. Create an environment where we can disclose our status. Practice confidentiality. Love us and create Hope for us. Give unconditional LOVE Source: At Research Feedback meeting, “Churches and HIV/AIDS”, Pietermaritzburg Agency for Christian Awareness, 23 November 2004.
83 Pope John Paul II urged all to be involved in response to the HIV pandemic AIDS threatens the whole of humanity “AIDS threatens not just some nations or societies but the whole of humanity. It knows no frontiers of geography, race, age, or social condition… The threat is so great that indifference on the part of public authorities, condemnatory or discriminatory practices toward those affected by the virus or self-interested rivalries in the search for a medical answer, should be considered forms of collaboration in this terrible evil which has come from humanity.” Pope John Paul II, visit to Tanzania, September 1990