Disclosure to Family

A two-armed, randomized, parallel group, attention-placebo control design is proposed to
assess the relative efficacy of the intervention. Participants who meet the enrollment
criteria will complete baseline assessments prior to being randomized into one of two
intervention groups: the experimental group or the ACCM. The ACCM will function as a
concurrent control group. All participants will receive four individualized sessions of
interventional procedures, regardless of assignment. The first 3 sessions will take place at
weekly intervals, with a 4-week wait period between sessions 3 and 4. The wait period permits
those in the experimental arm to consider disclosure decisions, and to make disclosures if
they so choose. Participants in both groups will return for assessment and a booster session
at 3-months post-baseline. Participants in both groups will also return at 6- and 12-months
post-baseline for follow-up assessments.

Experimental Condition is: Maybe or Maybe Not. The intervention is an individual-level
4-session + 3 month booster series designed to assist persons with HIV in making decisions
regarding the disclosure of their HIV serostatus to family members. The CTD asserts that
HIV-positive persons weigh the rewards and costs of disclosing their status to family.
Whenever the rewards outweigh the costs, disclosure occurs. In previous work, this theory has
proven to be an effective model in understanding disclosure to family and friends. The goals
of session one are to introduce participants to the intervention, to assess current decision
context, to assist in the clarification of participant values, and to encourage the
participant to set specific goals for disclosure decision-making. Participants will explore
their current family relationships, and determine which family members they want to consider
telling, and which family members they know they don't want to tell. Participants are then
asked to complete the disclosure decisions assessment with the facilitator. This assessment
is used to gather information about the decision context specific to each family member.
Participants identify each family members' disclosure status (i.e., aware/not aware), as well
as other key attributes of each relationship which inform the decision such as importance of
disclosure and satisfaction with the relationship. A series of handouts designed to initiate
awareness of the decision process are then provided and discussed. For example, a handout
entitled, "Questions to ask yourself as you think about disclosing to family members," is
used to stimulate and expand awareness of the context within which disclosure decisions will
be made. The goals for session two are to explore the participants' motivations to disclose
or not to disclose and the potential costs and rewards of both disclosing and not disclosing.
Strategies that can be employed to minimize disclosure-related costs are also reviewed. The
goals for session three are to guide participants through disclosure decision making, and to
support comfort/acceptance with decisions made. Only when a decision to disclose has been
made, participants will complete a Family Disclosure Worksheet, to rehearse potential
disclosure conversations, and to prepare for the potential reactions of family members. Where
the decision is made not to disclose, emphasis is placed on supporting comfort/acceptance
with this decision. Through discussions with their facilitator, participants are encouraged
to consider the ongoing nature of the decision-making and evaluation processes. The goal of
session four is to support the decision-making process. If applicable, the session begins
with a review of the Family Disclosure Worksheet and all other intervention materials. The
decision-making process is reviewed, and comfort and acceptance with each decision is again
explored. Participants are encouraged to reflect on their readiness to make disclosure
decisions with respect to specific family members. If the decision not to disclose is made,
the session focus includes support of that decision, and a discussion of the cues for
assessment and re-evaluation. Preliminary data from the pilot study suggest that disclosures
were still occurring at 3-months post-intervention, indicating that a booster session may be
helpful. In addition to initial exposure to "treatment," effective interventions generally
include some follow-up or booster sessions to support durability of impact. Low frequency
booster sessions following the termination of an intensive treatment have been proposed as
one method that may assist in maintaining treatment gains, and have been shown to be
effective for a variety of therapeutic interventions including behavioral family therapy,
anger management, assertions skills training, behavioral psychotherapy, and HIV prevention.
In this study a 3-month booster session will be used to reinforce the effects of the
intervention through continued discussion of disclosure decisions in the preceding months,
strategies used in disclosing, and rewards and costs of decision-making.

The Control condition is: Attention control case management (ACCM). The CDC's HIV Prevention
case management program "Comprehensive Risk Counseling and Services" (CRCS) will be used to
provide the attention-placebo control. CRCS combines traditional case management and HIV
risk-reduction in an individualized, client-centered program which focuses on the reduction
of risk behavior and addresses a client's psychosocial and medical needs. HIV-positive
individuals often have numerous psychosocial, financial, and medical challenges, and may not
immediately acknowledge the need for prevention services because their basic living needs
(e.g., housing) are more salient. CRCS focuses on seven core elements: recruitment and
engagement; screening, enrolling, and assessing; prevention planning; risk reduction
counseling; referrals and service coordination; monitoring; and discharge and maintenance.
These core elements represent the framework of the intervention, and provide enough
flexibility to allow implementation that most appropriately serves the needs of clients.
Trust is a key element in the ability to work with participants. In the ACCM, the facilitator
will work in cooperation with the participant using a problem-solving approach geared to
build trust, and will place emphasis on connecting the participant to community-based
services and supports. As operationalized by the AIDS and Substance Abuse Program, the
initial CRCS meeting provides an opportunity to describe the program, gather information and
establish rapport. For those who present with immediate needs such as for shelter or medical
care, this first meeting may provide an opportunity for linking the participant to services
immediately. The initial treatment plan is developed in the second meeting. The facilitator
will go through each of six general areas with the participant to gather a history and
picture of the current situation: (1) substance abuse; (2) basic needs; (3) health care; (4)
mental health; (5) legal issues; and (6) support systems. Once this review is complete, an
initial intervention plan is developed with specific goals and objectives. Case management is
a continual process of developing goals, working to meet those goals and addressing
obstacles. Thus, the ACCM can mimic the experimental condition, and will be delivered on the
same session schedule as the experimental condition and will include a comparable booster
session at 3 months. Facilitators will be extensively trained by the PI and will be
knowledgeable regarding local resources for HIV-positive persons. Facilitators will be
qualified to make appropriate referrals to service providers and to local AIDS service
organizations (ASOs), and will evaluate participant referral follow-through by encouraging a
discussion of referral activities at each session. Resource lists provided to participants in
both groups during the first session will include contact information for a 24-hour hotline
in the event of emergency.

Inclusion Criteria:

- HIV-positive men and women

- over the age of 18

- indicate an interest in learning more about disclosure

- have at least one family member who does not know of diagnosis

- sexually active in past 90 days

- speak and understand English

- plan on living in Tampa area for at least one year

Exclusion Criteria:

- not HIV-positive

- children under the age of 18

- not able to speak and understand English

- do not plan on living in Tampa area for the year

- not sexually active in last 90 days