By way of introduction

This experience was born of the intention to respond to the suffering, the withdrawal and the isolation into which families very frequently fall when they learn that their own child is HIV-positive. When the diagnosis of infection by the HIV virus is confirmed, it is not uncommon to observe reactions of extreme fear and confusion in the people concerned: the one who has been infected, the partner and the parents react with despair, seeking to flee, so that there is a tendency for problems to multiply on the psychological level, but also those that have to do with the secondary prevention of the infection, with poor adherence to treatment, with suicides (seventeen times higher than the average), with psychiatric breakdowns.

A first objective, which we had set ourselves as we reflected on the usefulness of our proposal, was to find modalities of intervention capable of contributing to reversing (to inverting?) this negative tendency among the relatives informed of the child’s HIV-positive status, by fostering the construction of new languages, able to bring about a different relationship to the presence of the infection in the family as well as to the carrier of the virus. It was a matter of fostering a passage from despair towards the construction of new styles of relationship within a family context marked by a mixture of emotions — ranging from demoralisation to despair — with the main objective of interrupting the situations of isolation into which these families very often tend to fall.

Many experiences of clinical group work with HIV-positive people (self-help, psychotherapy, psychological support, etc.) have shown the value of this technical resource — regarded as an adjuvant to individual psychotherapeutic help — above all as regards fostering a new relationship to oneself within the family, to others and to the infection. In this sense, it can be affirmed that the construction of a new relational context around the HIV-positive subject can stimulate an evolutionary process at the end of which the “brute facts” (for instance the infection) and the emotions linked to them can take on an entirely new meaning: the premises are thus created for a change in the very way of approaching the problem.

We had thought that it would be useful to try to tackle these problems starting from the other end of the system created around HIV-positive status, that is to say from the parents. This idea rested on the following consideration: there is a potentially salutary impact that parents can exert within the affective and relational network built around the HIV-positive member of the family. We were relying in addition on the observations made in a field where, when relatives (generally the mothers) stand by HIV-positive people, they frequently constitute the most important everyday existential and affective support.

From self-help groups to social constructionism

The challenge consisted in creating a group with a psychotherapeutic valency, made up of parents of an HIV-positive child. An experience that had to start from premises and presuppositions different from those of traditional support groups, where the emphasis is placed very strongly on moralising aspects, often with a guilt-inducing bias, in the illusion of “educating”, by privileging strictly instructional aspects. In other words, what is stressed there is the idea that there must be within the group a consensus on what is “best and healthiest” as regards the way of relating to the infected member. According to this premise, the leader of the group adopts a maximally directive position: he suggests or imposes, more or less directly, certain behaviours on the members of the group.

We structured a group of mothers, with a number of meetings determined in advance (ten). The methodology drew its inspiration from social constructionism. This paradigm ascribes the construction of knowledge to social relations, to conversation. Knowledge is therefore regarded as an exclusively social product, mediated by language. According to this view, forms of knowledge evolve in the space between people, in the dance we dance together; interpersonal relations are systems of language and of meanings.

Once this premise is laid down, the methodological conditions are met for defining technically the conduct of the group: a moderately directive position is adopted there in the conversation. The participants, for their part, become involved with the availability of those who open themselves to novelty and to the possibility of being surprised, making the value of differences their own. From there opens up the possibility of creating consensuses that make it possible to go beyond the suffering and the rigidity of the previous relational style. One thus goes in a direction opposite to the one that aims only at confirming personal hypotheses about “how things really are”. The point of this was to create a context in which deutero-learning would be possible. This emphasis placed on epistemological aspects seeks to foster the discovery of unforeseeable paths in the face of the question each mother formulates in this situation: “how am I to relate to my child’s HIV-positive status?”

Beyond the construction of this different way of being together in conversation, it was also a matter of bringing about an awareness of the complexity of the problem, and therefore of the impossibility of creating a standardised modality of relating within the family.

Some theoretical considerations… (to be continued)

Appendix

Anonymous questionnaire

• What do I expect from these meetings?
• In your view, what do the members of your family expect from your taking part in these meetings?
• List the situations in the face of which you feel “disarmed”, or that seem to you the most problematic, in relation to the HIV-positive status of your son or your daughter.
• Taking part in these meetings can help me to…
• If I had to give a name to what I am going through today in the face of the HIV-positive status, it would be…
• If I had to give a name to what the other members of my family are going through in relation to the HIV-positive status, it would be…
• The present moment, for me, as regards living with the HIV-positive status in the family, I define as…
• For me, having an HIV-positive relative means…
• If I wanted to feel of greater help to my HIV-positive child, I would have to…
• What I hope to receive from the members of this group.
• What do I feel I can give to the members of this group?

Transcription of the answers given to the anonymous questionnaire by each of the mothers taking part in the group.