I came to the Yale Child Study Center as a Clinical Psychology Fellow in the summer of 1992. As my community elective, I chose the center's Division of Family Support Services (FSS), a community-based program for HIV-affected children and families. This program had particular appeal for me: It was an opportunity to work in a community setting with adults and children who were facing traumatic life events, and it was supported by an academic institution deeply committed to working within a psychoanalytic, developmental prospective.
When I completed my fellowship and subsequently joined the faculty at the Yale Child Study Center, I remained closely affiliated with FSS, and I recently become the clinical coordinator of the FSS program for HIV-affected children and families. This work is part of the center's broad effort to expand the ways mental health services are made accessible to the vulnerable children and families in our community; as such, it provides a bridge to another aspect of my work, in the Yale Child Study Center Child Development-Community Policing Program (TAP 29/3, 1995, p. 25). As such, it affords a unique opportunity to examine the many ways psychoanalytic thinking and approaches to therapeutic treatment can be brought to the homes, streets, and neighborhoods of a ravaged inner-city community such as that within New Haven.
Pediatric AIDS occurs primarily among families who are already beset by issues of poverty, substance abuse, depression, and social isolation. Although good medical care can significantly enhance an HIV-infected child's quality and duration of life, these families are often too overwhelmed by the demands of their lives to be able to avail themselves of medical and other services provided in a traditional, clinic-based setting. Barriers to seeking services are deep-seated. Many mothers may experience significant denial and guilt about their own and their child's HIV infection.
The doctor who with good intentions tells a mother how to treat her child's illness may be felt by the mother to be a punitive, demeaning, or rejecting authority figure. A mother may withdraw or respond in a hostile or demanding way in an effort to ward off her sense of inadequacy. Many HIV-infected mothers struggle with profound guilt and distress about their transmission of the disease and their eventual abandonment, through death, of their children. They may deny their own fears about death and dying. Seeking medical attention often requires that they or their children be tested to determine if the disease has progressed, that they be prescribed medication that could make them feel worse, or that they be asked to expose their ravaged bodies for inspection and examination, often by more than one individual. Such a visit inevitably becomes a painful reminder of a reality they might wish to forget.
Traditionally, “medical noncompliance” by parents of medically compromised children is considered to be a form of neglect and subjects children to being removed from the home, a separation that irreversibly alters their universe. Thus a dilemma unfolds between safeguarding the physical well-being of the child or attending to the child's emotional needs. The well-meaning interventions of a medical team frustrated by “medical noncompliance” and angered and mystified by parents' apparent unresponsiveness to treatment often lead to multiple foster placements and disruptions of attachments.
Bringing a psychoanalytic, developmental perspective to this dilemma allows for an appreciation of the complicated, multifaceted, and deeply entrenched reluctance to obtain traditional, clinic-based service. Such a perspective underscores the paramount importance of developing an ongoing, reliable, and consistent relationship between patient and doctor, which forms the bedrock of medical and psychotherapeutic intervention.
The Pediatric HIV+ Family Support Services Program (FSS) is a community-based comprehensive program, developed to address the needs of HIV-positive children who were identified as being “at risk” for poor medical compliance. The program is based on a family preservation model that recognizes children's need for a stable and nurturing relationship with a primary adult caregiver, fostering within the family an environment in which children who are ill could be adequately cared for in their own home. The relationship-based, team approach pairs the clinician with a family support worker whose background and community are similar to the families served, and who is thus able to form and sustain relationships with parents based on their credibility as community members and their strong sense of affiliation.
With a growing recognition of the extreme distress of HIV-infected and affected children, the program also offers home-based individual and group psychotherapy, psychological evaluation, and psychiatric assessment for these children. With complications of AIDS (medical, psychological, and social), these children often require nontraditional services to meet their needs directly and to avoid repeated failed appointments, which imperil the psychotherapeutic process.
As clinical coordinator of the program, my role spans many areas, from providing direct clinical service to providing clinical supervision to clinicians and FSS workers, as well as training, teaching, and research. The work frequently requires grappling with the challenges of forging what has in the past been an uneasy pairing of psychoanalysis and “community service.” I have often heard the charge that psychoanalysis is too remote, too selective, or too forbidding to have anything to offer on the front line of the inner city. This work is one example of psychoanalytically informed, community-based work being conducted at the Yale Child Study Center that demonstrates how such a union can lead to successful, effective, and clinically rich psychotherapeutic work that brings psychoanalysis out of the consulting room and into the inner city.
Stepping out of our offices and into the homes and streets of our community represents a shift in the framework of the therapeutic process and necessitates subtle (and some not so subtle) alterations in the nature and character of our work. Psychotherapy in the home can give rise to a unique set of complications that require patience, understanding, and a continued commitment to analytically informed listening.
In traditional settings we have only the patient's productions and our impressions
to guide our listening and to shape our interpretations. When we move our work into the home of the patient, our senses are bombarded with details, great and small, that crowd our field of vision and, indeed, all of our perceptions—photographs on the wall, states of disarray in the home, sometimes conditions of squalor, poverty, and unsafe conditions. The patient's perceptions of us—as ally, as judge, as critic, as authority—are often hard to read in the midst of chaotic, mercurial environments.
The sense of privacy is difficult to preserve, as family members, neighbors, street scenes and sounds intrude. In the homes of HIV-infected parents and children, the therapist must be prepared to encounter whatever situation greets him or her at the door, and countertransferential reactions are uniquely complex. A therapist's unfamiliarity with neighborhoods and community members may give rise to feelings of insecurity and danger.
Recognizing and understanding these reactions requires a therapist to put herself or himself “in the skin” of the patient. As genuine empathy begins to develop out of a growing understanding of the patient's life, both from the inside and from the outside, issues of illness, death, and dying gradually enter into both the conscious and the unconscious therapeutic dialogue.
Working in this way can bring us face-to-face with desperate situations that test the limits of our tolerance as individuals and as professionals in the mental health field. As clinical supervisor, my work often entails exploring the multiple meanings of the particular dilemmas that confront the therapist—for example, patients who are running out of food and who spent their last dollars on cocaine, patients whose electricity is being cut off and whose child is being readmitted to the hospital—while respecting that therapist's need for sensitive support and counsel.
Frequently, the issue of secrecy emerges as a central and complex theme and becomes paramount to the work with the family. Often family members are forbidden to name the illness, to speak of it, or even to know the diagnosis. Secrecy about HIV infection is rooted in a number of deeply held beliefs and powerful emotions. Many parents may be ashamed of their illness and may vehemently deny it, striving to ward off fears of loss, of a death that might be painful, of disfigurement, of loss of the future. Some infected parents who have infected children perpetuate silence in an attempt to “protect” their children and avoid painful feelings. A five-year-old child with HIV, whom I saw recently at a medical center, provides a poignant example of the psychological impact of the prohibition against naming. At a recent routine visit to the clinic, Juan whispered imploringly to medical staff, “I have AIDS, but don't tell my mother.” His mother, who had never openly acknowledged or named her son's illness, believed that telling him his diagnosis would be tantamount to extinguishing all hope.
Juan, however, felt as though he bore a guilty secret—knowing what his mother did not allow him to know left him terrified of his own power and forbidden knowledge. He worried that should his mother “find out,” she would be devastated, and thus sought fruitlessly to protect her while desperately needing comfort and assistance from her that he could not receive.
Nowhere are the stakes of “knowing” and “not knowing”—not being allowed to know—higher than for the uninfected, but deeply affected, healthy children and siblings of HIV+ family members. Not to be “allowed” to know what is already known—knowledge that cannot be avoided, any more than it can be integrated and understood—may have severe consequences for a child's capacity to develop mechanisms for defense and adaptation.
HIV-affected children live with the often unconscious belief that their parents' existence in the world is a survival against all odds, and by extension their own existence takes on a quality of tenuousness, of being a miraculous and undeserved gift. This may result in a conflict between, on one hand, unrealistic grandiose fantasies of perfection and success and, on the other hand, despair and hopelessness in the face of realistic limitations. In families in which silence about AIDS predominates, the child is left to guess the meaning behind the palpable yet implacable silence.
These children frequently experience a disturbing disjunction between what they know in their bones is there, and what knowledge and understanding are denied by their parents' silence. Nevertheless, fearfulness about AIDS, preoccupation with themes of loss and abandonment, and anxiety about separation may pervade their inner lives. In this way, what parents may attempt to conceal or deny through silence can take on great importance in the unconscious fantasy lives of their children. Such fantasies are embedded in a developmental context that shapes the contours of children's knowledge, understanding, and unconscious beliefs. For example, in therapy a group of six seven- and eight-year-olds played “funeral,” in which a mother and child were transported in a wagon and “buried” in a toy chest, which represented the cemetery. Each child elaborated a fantasy about how the death had occurred and, more importantly, how and when the mother and child would be “made better and come home again.” In the course of in-depth, long-term treatment, children are able to develop a language for the disease that so devastates their families and alters their universe. If the therapeutic experience can be uninterrupted, consistent, and predictable, children may able to move from silence and denial about AIDS, to rage and loss of control, to being able to talk directly about their emotions and their understanding of both the illness and its often devastating consequences.
Extending the Yale Child StudyCenter's long-standing commitment to the concepts of “the best interests of the child,” this work is guided by an understanding that stability, consistency, and continuity in the caregiving relationship provide the groundwork for optimal psychological development of children. These principles are the hallmark of the work we do with children who are particularly vulnerable to experiences of loss, separation, and disruptions in attachment, and guide both our own thinking and our collaborations with others with whom we share this work. The common thread that runs throughout my activities in this program, as well as in my work with the Child Development-Community Policing Program, is that of offering psychoanalytically informed services to a community beset by violence, trauma, and adversity. In my work, I am acutely aware of the delicate interplay between the impact of external events and the press of internal distress, unmodulated impulses and overwhelming affect. As a first-year candidate at the Western New England Institute for Psychoanalysis, it is an exciting challenge to bring together psychoanalysis, models of trauma, and my work within an inner-city population into an ever-evolving, deepening, and rich dialogue.
Anne Adelman is an Associate Research Scientist at the Yale Child Study Center and a candidate at the Western New England Institute for Psychoanalysis. She is a former Fellow.