By Penny Stuart
Cairde is a voluntary organisation providing emotional and practical support to those affected by H.I.V. or A.I.D.S. – people with the virus, their partners, families and friends.
Cairde was founded in September 1985. Following a presentation by Drs John Dupree and Glen Murgo at a WHO Conference in Dublin, Gay Health Action invited the two doctors to run a weekend training course on the work of the Shanti, a buddying organisation in San Francisco. The Gay Health Action initiative was a response by gay men to their growing concerns about the effects of H.I.V. on the gay community.
When Cairde was set up in 1985 there were virtually no supports for people affected by A.I.D.S. and H.I.V. This situation has improved significantly during the course of the last ten years. The satellite clinics, the advancement in welfare services, the needle exchange programmes, the outreach services, and the H.I.V. testing provision are all improvements to the situation which pertained in 1985. Cairde, its members and its sister organisations (within the voluntary and community sectors) must all assume some degree of responsibility and credit for the positive changes which have taken place in the intervening ten years.
Cairde has been a fertile breeding ground for individuals who wish to involve themselves in the area of H.I.V./A.I.D.S. It has provided entry routes into the H.I.V./A.I.D.S. support area for “lay” people who might not be healthcare professionals (social workers, counsellors, consultants) or people infected by the virus (who might set up their own support groups). It has enabled people who are concerned, worried, anxious etc. about H.I.V./ A.I.D.S. to make a practical and important contribution towards the quality of life of those affected by the virus.
The Importance of Volunteerism
The contributions of volunteers are absolutely critical to the ongoing development of Cairde. They have been described as the “lifeblood”, “essential foundation” and “primary element” within the organisation. It is considered important, however, to develop an appropriate balance between the need for volunteers and the need for staff.
In the Cairde situation a trained volunteer is carefully matched to a person infected or affected by H.I.V. and A.I.D.S. to offer support in whatever way is most appropriate. This support can be practical or emotional and could include helping around the house, cooking a meal, babysitting or providing company to those who stay at home during an illness. This companionship enables “issues such as health, medication, prognosis, disease progression, family reaction etc., to be explained in a safe, non-judgmental space”.
Befriending can last various lengths of time from a number of weeks to several years depending on the needs and circumstances of the client. Often the relationship evolves into a close friendship ending only with the death of the person being befriended.
Befriending is critical. It is not perceived as being peripheral or secondary to other aspects of care (e.g. medical, dietary control); rather, in many situations, befriending helps to create an integrated range of supports for the client, and helps ensure that his/her life is better than it might otherwise have been.
All volunteers must complete a rigorous training schedule. There are normally two training courses held each year. These courses cover a range of issues relating to H.I.V./A.I.D.S., personal characteristics and attitudes of potential volunteers. They include inputs and contributions from highly qualified people in the field.
In a similar manner, the support groups which meet on a fortnightly basis, are considered to be critical in the work of Cairde. The befriending role can be emotionally draining, and it is most important to have the support of others who can empathise and relate to particular situations, difficulties and concerns. Groups are run by trained group facilitators who provide non-directive group support.
Befriending in Cairde is distinctly different to other voluntary commitments – in very few voluntary organisations are people dealing with dying and death on such a regular and inevitable basis. Hence, the absolute need and importance of effective support groups as a means both of helping people work through practical issues (what do you think I should do about this dilemma?) and in providing personal and emotional support.
Working with Children
Cairde has been carrying out research on the potential of developing a project which would involve working with children affected by H.I.V. and A.I.D.S. Preliminary results of this research would suggest that the provision for children infected with H.I.V. or A.I.D.S. is reasonably good. Some of the greatest needs, however, concern those other children who have been affected by A.I.D.S. (e.g. children who have been bereaved due to A.I.D.S.-related illnesses). The nature of the need/problem was outlined in the Cairde Development Plan 1996 – 2000.
“H.I.V. is among the most relentless of infections. Unlike other chronic and lethal conditions of children, where illness is usually confined to one child or to the children, caregivers of H.I.V. infected patients routinely encounter entire families who are infected: infected parents who know that their children will be deprived of parents, who worry about the care of children after their deaths; infected children faced with the deteriorating health of their parents and/or siblings while at the same time identifying with that person and anticipating a similar fate; and children who – although uninfected – must cope with the tragedy of watching family members die. For many of the children the pain and suffering directly associated with infection is further increased by added secrecy, fear, a lack of understanding of the events surrounding them and a total sense of isolation.
As a result of this research we began working with 16 children in July of this year. We have a fortnightly Saturday Club in operation for 6-10 year olds. Activities include drama, games, daytrips, etc. In October ’96, thanks to the Blanchardstown Bereavement Support Service, a group of our children who have all lost a parent will be spending three days in Barrettstown Castle.
In the future I would very much like to further develop the children’s service to include a play therapist and again this will depend on future funding.
Reflections on the Counselling Service by Emiel Honnay
About six months ago I started working with adults who are infected by the H.I.V. virus and others who are affected by it, e.g. their partner, family, friends.
They want to avail of help in order to work through the pain they are experiencing. It is often the pain of loss, and this activates a grieving process. The different stages as described by Elisabeth Kubler-Ross could be a helpful framework for understanding what they are going through.
H.I.V.+ clients sometimes feel very low, fearful, isolated, ashamed, sad, angry, uncertain, not seeing any future because of the “impending doom” hanging over them, apathetic (“what’s the point of doing this or that?”, hopeless, giving up …)
They may be out of touch with their being, i.e. their inner light, potential, gifts, qualities.
Being with them in their pain and at the same time being open and sensitive to the smallest sparkle of light that they radiate verbally or non-verbally, may help them to find a way back towards themselves.
Their deeper self may be revealed – slowly but surely – within a therapeutic relationship based on unconditional love. They may discover they are more than their H.I.V.+ condition. Some start experiencing their condition not as paralysing any more but as a challenge, as an opportunity for growth and for discovering more aspects of their very being.
They may move from a victim position with the illness being in charge of them to “them being in charge of themselves”. Some start touching depths of themselves and depths of happiness they never experienced before. Some even express gratefulness for their illness, for it brought them to counselling and this is opening up totally unexpected experiences of self.
I see clients growing in acceptance and giving a deep spiritual meaning to what they are going through.
They may learn to live more fully in the here and now and take each moment as it comes. They are growing in inner freedom. Some are moving into a new sense of well-being which also affects their physical condition. A client who had recently undergone a blood test was surprised that his T-cell count had improved.
In the process of therapy they get a better insight into themselves, their behaviour, attitudes, qualities, relationships. They discover that actual difficulties are often linked with painful experiences in the past and that these experiences are like clouds covering the beauty of their being. They learn to release blocks and obstacles in their growth as a human person.
My approach is eclectic and draws from many sources within the Humanistic and Integrative field. I mention only one – because it is a basic inspiration and probably the least known – PRH, which stands for “Personalité et Relations Humaines” was founded in France in the 1960’s by Andre Rochais and is now spread all over the world, including Ireland. Its approach is “Being oriented”, i.e. emphasis is on the growth of the “being” or the very core of a person. It helps a person become aware of his/her source of life by focusing on it. It helps a person nourish it so that he/she can become more fully rooted in and hence live from his/her deeper core.
In working with H.I.V.+ clients the use of affirmations, relaxation and visualisation prove to be helpful. When I first did a visualisation to empower the immune system,. I portrayed it – as medical text books do – as a battle in which the “goodies” destroyed the “baddies”. Some clients, however, didn’t get images of a cruel battle scene or destruction, but they received loving, gentle scenes, e.g. of light and smoke fading away. The healing power of Love …
Not only people infected by the H.I.V. virus can benefit from counselling but also their relatives, partner, children and friends. Bereavement counselling is offered to those whose partner, child or friend died of A.I.D.S. Couple counselling helps couples work through relationship issues, whether they are H.I.V.-related or not, and helps them discover new ways of being together and develop new skills in communication.
Living with a son or daughter who enters the later stages of the illness can be very stressful and can bring parents or relatives to the edge of a breakdown. Counselling can help the carers in discovering new resources within themselves, listening to their own needs and finding a balance, taking responsibility for themselves, letting go. Anticipatory griefwork may be part of the process too.
CAIRDE UPDATE OF SERVICES AND ACTIVITIES
Children and H.I.V.: A support project for children who have lost a parent or sibling to H.I.V. Summer Camp Outings, Day Trip Activities, Art Workshops and a Saturday Club.
Dementia: A programme to provide practical volunteer support to families and individuals with A.I.D.S.-related Dementia.
Art Workshop: An art worker operates from the Cairde centre offering Art Workshops for individuals infected and affected by H.I.V. or A.I.D.S. (Adults and children.)
Counselling: An additional counsellor is now operating from the centre due to the demand for support from families and partners of H.I.V. positive people, and for positive people themselves.
Video Library: Educational resource facility to access information on H.I.V. and A.I.D.S.
These new services are being offered in conjunction with our existing services such as:
– Buddying: Operated through our base of 50 volunteers, this service provides one to one practical and emotional support to people living with H.I.V. and A.I.D.S.
– Crisis Intervention: Our counsellor is available to individuals recently diagnosed with H.I.V., to offer support in coping with a H.I.V.+ diagnosis.
– Information and Education: Cairde provide information to individuals, institutions and other groups in relation to facts on H.I.V. and all aspects of the virus.
– Crisis Calls/Referral Service: We operate a confidential telephone information service, where individuals can obtain information on testing, and where queries can be addressed in relation to transmission and other H.I.V.-related questions. We also provide a referral service and network with all agencies working in Ireland.
Cairde is at 25 St. Mary’s Abbey, off Capel Street, Dublin 7. Tel: 01-873 0006