3.1 Encouraging Client Participation
3.1.1 Fully Informing and Reassuring Clients
PCRS providers
must
ensure that
clients are
aware that all
information
disclosed by
them will be
kept strictly
confidential
and that
participation
is always
voluntary. |
The PCRS provider
should explain the purpose
and process of PCRS
before PCRS activities can
begin. The HIV-infected
person serves as the "gate-keeper"
to his or her
partners. Program experience
indicates that once a
person understands the
benefits both to themselves
and their partners,
they willingly participate
in PCRS. Therefore,
ensuring that the HIV-infected person fully
understands the PCRS process and its benefits
is important.
Providers should create an environment that is private, confidential, and
comfortable enough so that clients are encouraged to participate in PCRS without
feeling fearful or coerced. Reminders of the voluntary nature of PCRS and
explanations of how privacy will be maintained for clients and partners alike
will be necessary before some individuals feel secure enough to participate.
Each interaction a counseling and testing or
health care provider has with an HIV-infected
client is a potential opportunity to discuss the
importance of informing that person's sex or
needle-sharing partners of their possible exposure
to HIV. Prevention counseling, prevention
case management, and medical follow-up
sessions while clients are in treatment, all
provide opportunities to stress the importance
of getting partners involved in PCRS.
Community-level interventions provide other
opportunities to reach out to partners.
3.1.2 Developing an Atmosphere of Trust
To foster an
atmosphere
of trust,
PCRS providers
must
treat all HIVinfected
clients and
their partners
with respect. |
The success of the
PCRS process hinges on
the trust and cooperation
of the persons infected
with HIV and their
partners. How well the
provider fosters an atmosphere
of trust, respect,
and rapport with the
HIV-infected individual
will have a significant impact on PCRS. Client-centered
counseling techniques (CDC, 1994)
are highly recommended for developing this
relationship, not only with original clients but
also with their partners. The ability to develop
trust and rapport will also enhance the PCRS provider's
effectiveness when working in the community.
3.1.3 Introducing PCRS
Persons entering
CDC-funded HIV
prevention counseling
and testing
programs must be
counseled at the
earliest opportunity
about PCRS and
options for informing
sex and needlesharing
partners of
possible exposure
to HIV. |
During the
first visit, the
health care
provider, using
a client-centered
approach
(CDC, 1994),
should begin
discussions with
the client on the
risks to his or
her partners.
This visit
would typically be for HIV counseling and
testing. When clients choose to be tested and
the results are positive, then the provider must
offer, at the earliest appropriate opportunity,
to assist in formulating an individualized
PCRS plan. That plan is always based on the
personal circumstances of the HIV-infected
client and each of his or her partners.
When the provider demonstrates genuine
concern for the overall well-being of clients
and their partners during discussions about
PCRS, the provider encourages greater client
participation. Clients' reactions vary significantly
to learning that their HIV test results
are positive; therefore, the provider must
gauge the appropriate point at which to initiate
the discussion about the PCRS plan. In
fact, other critical issues might need to be
resolved first. For example, the client might
express suicidal ideation or a fear of a violent
reaction from a partner. Because potentially
violent situations might be encountered,
collaboration between the PCRS program and
the appropriate state or local violence prevention
programs is important. Such collaboration
will help in developing plans and protocols
for such situations and provide opportunities
for the PCRS provider to learn about
relevant services.
3.2 Formulating a PCRS Plan
The PCRS provider
must explain to the
HIV-infected client
the options for serving
partners and then
assist that client in
deciding on the best
plan for reaching
each partner
confidentially and
referring him or her
to counseling,
testing, and other
support services. |
HIV prevention programs
use two
basic approaches
for reaching
partners (West
and Stark,
1997). In this
document, the
term client
referral is used
when HIV-infected individuals
choose
to inform their partners themselves and refer
those partners to counseling and testing (see
Section 3.2.1). (NOTE: The terms patient
referral and self-referral are sometimes used
instead of client referral.) The term provider
referral is used in this document when the
PCRS provider, with the consent of the HIV-infected
client, takes the responsibility for
contacting the partners and referring them to
counseling, testing, and other support services
(see Section 3.2.2).
Sometimes a combination of the two approaches
is used. With the dual-referral approach,
the HIV-infected client informs the
partner of his/her serostatus in the presence of
the PCRS provider. By having a professional
counselor present, this approach supports the
client and reduces other potential risks. In such
situations the PCRS provider must not reveal
the client's serostatus to the partners without
prior informed consent. With the contract-referral
approach, the PCRS provider does the
informing only if the client does not notify the
partner within a negotiated time period (see
Section 3.2.3).
The PCRS provider should explain to clients
all available options for reaching their partners,
including the advantages and disadvantages
of each approach. Then, together they
can formulate a plan that can result in each
partner being confidentially informed and
encouraged to access counseling and testing or
other social or medical services. Some HIV-infected
individuals will be reluctant to participate
in PCRS. Client-centered counseling
techniques and reassurances of confidentiality
can encourage better participation. Resolving
problems through role-playing, for example,
might help clients overcome barriers to participating
in PCRS and help them better prepare
for their part in those activities. No matter
which approach is chosen, the PCRS provider
should ensure the partners are actually informed
of the exposure.
3.2.1 Taking a Closer Look at Client Referral
When HIV-infected clients choose to
inform their partners themselves, they usually
need some assistance to succeed. Although the
majority of clients do not experience negative
consequences when notifying partners, the
PCRS provider can help the client minimize
any potentially negative consequences. The
provider should, therefore, be prepared to
assess the situation and ability of the HIV-infected
client to make successful notification
and referrals. Based on this information,
clients might need to be coached on:
- the best ways to inform each partner;
- how to deal with the psychological and
social impact of disclosing one's HIV
status to others;
- how to respond to a partner's reactions,
including the possibility of personal
violence directed toward the client or
others; and
- how and where each partner can access
HIV prevention counseling and testing.
Despite the provider's coaching, however, the
client's lack of counseling skills and experience
might result in unsuccessful or ineffective PCRS. Another disadvantage of the client-referral
approach is that the client might
unintentionally convey incorrect information
about HIV transmission, available support
services, confidentiality protections, or other
issues. The client also forfeits anonymity to
partners, increasing the potential for disclosure
of serostatus to third parties, subsequent
discrimination, or partner repercussion. The
findings of Landis et al. (1992) clearly indicate
that fewer partners are actually informed of
their possible exposure to HIV when the
client-referral approach is used. However,
because PCRS is a voluntary process, clients
should be able to choose this approach. The
PCRS program needs reasonable systems for
monitoring whether partners are actually
reached (see "Contract Referral" in Section
3.2.3). Also, more support to the client in
notifying their partners will enhance the
effectiveness of notifying partners.
For anonymous test sites, the client-referral
approach poses a slightly different problem
because some clients might be less likely to
give the provider information about partners.
Under these circumstances the provider will be
less likely to determine whether PCRS has
been successful. Although PCRS can be provided
to anonymous clients, CDC currently
recommends providers encourage the client to
voluntarily enter a confidential setting for
PCRS and additional medical follow-up. Here
again, an appropriately detailed discussion
with anonymous clients of how confidentiality
will be maintained for themselves and their
partners can ease the transition of anonymous
clients to a confidential setting. That transition
will also be eased if clients are not required to
take another HIV test. If the anonymous and
confidential test sites are at separate facilities,
reciprocal agreements between the two might
be necessary so that the client's confirmed
positive test result can easily be transferred to
the confidential setting.
At confidential test sites, PCRS providers
should make every reasonable effort to follow
up with each HIV-infected client to assess how
well he or she has progressed with PCRS.
Whenever feasible, careful and confidential
monitoring of which of the client's partners
actually do access counseling and testing services
can greatly enhance quality assurance and
program evaluation. This also will help ensure
that partners have actually been reached.
Despite its drawbacks, client referral is the
approach frequently chosen, and it can have
some advantages. Because the client is usually
more familiar with the identity and location of
the partner, this approach can allow some
partners to be referred for counseling and
testing more promptly. Also, some clients
choose this approach because they feel the best
way to preserve a current relationship is by
informing the partner themselves rather than
having a third party - the provider - do it.
Finally, when client referral is conducted
successfully, fewer staff are used and fewer
resources are consumed than with the
provider-referral approach, so the financial
burden for HIV prevention programs is reduced.
3.2.2 Taking a Closer Look at Provider Referral
When the client chooses provider
referral, the provider will also need to assess
the situation regarding each partner, including
the best ways to inform them, how to locate
and contact them, suggestions on how to
approach them, how to predict the psychosocial
impact of their learning their HIV
serostatus, and how to respond to partners’
reactions. Research indicates that provider
referral is more effective in serving partners
than client referral (Landis et al., 1992). The
following are some of the advantages of using
the provider-referral approach:
- The PCRS provider is able to readily
verify that partners have been confidentially
informed and have received client-centered
counseling and testing services.
- The PCRS provider can better ensure the
HIV-infected client's anonymity since no
information about the client is disclosed
to his or her partners.
- A well-trained PCRS provider is better
able to defuse the partner's potential
anger and blame reactions as well as
accurately and more comprehensively
respond to the partner's questions
and concerns.
- Provider referral better facilitates learning
about sexual and drug-injection networks,
thus potentially enhancing overall HIV
prevention efforts in affected communities.
- In many cases, the PCRS provider can
deliver on-site HIV testing to the partner.
Among the disadvantages of the provider-referral
approach is the fact that PCRS providers
are not always able to readily locate and
identify the partners. Because the provider is
less familiar with how to reach the partners,
actually locating them to discuss their possible
exposure to HIV can be more difficult. The
provider-referral approach also entails substantial
financial costs and causes some ethical
concerns among leaders of affected communities
(Fenton and Peterman, 1997; West and
Stark, 1997). For example, Fenton and Peterman
(1997) found that financial costs for
provider referral are between $33 and $373 per
partner notified and between $810 and $3,205
per infected partner notified. This program
expense, however, is greatly offset in the long
run because PCRS frequently reaches persons
who do not suspect they have been exposed to
HIV and is likely cost-effective (see Section
1.3). Once informed, they can access prevention
counseling and testing, and if HIV-infected,
they can enter treatment earlier. It is
important to note that some infected people
who choose provider referral might still notify
some partners about their serostatus and will
thus need relevant counseling.
3.2.3 Taking a Closer Look at Combined Referral Approaches
Two variations on provider and client
referral are the dual- and contract-referral
approaches. Potentially, combinations of
these approaches can enhance the advantages
of both approaches for the client while reducing
the disadvantages.
Dual Referral. Some HIV-infected clients feel
that they and their partners would be best
served by having both the client and the
provider present when the partner is informed.
The dual-referral approach can work well for
these clients. The dual approach allows the
client to receive direct support in the notification
process. The PCRS provider is available
to render immediate counseling, answer questions,
address concerns, provide referrals to
other services, and in some cases potentially
minimize partner repercussions. Being present
also enables the provider to know which
partners have in fact been served, and to some
extent, learn about sexual and drug-injecting
networks. Whether the client or provider will
take the lead in informing the partner should
be worked out in advance of the notification.
The provider still needs to coach and support
the client as with the client-referral approach.
The provider and the HIV-infected client
need to consider, in particular, the partner's
possible concerns about having his or her
relationship with the client revealed to the
provider. By considering this issue in advance,
the client and the provider can anticipate the
partner's possible reactions and discuss how to
respond appropriately.
Contract Referral. The other variation on
provider and client referral, the contract-referral
approach, might require more negotiation
skill on the PCRS provider's part. In the
contract-referral approach, the provider and
client decide on a time frame during which the
client will contact and refer the partners. If the
client is unable to complete the task within
that agreed-upon time period, the PCRS
provider then has the permission and information
necessary to serve the partner. The provider
must also have agreement with the client
about how to confirm that partners were
notified and what follow-up is required for
situations where the client does not make the
notification. Negotiation skill and a relationship
of trust are needed so that the provider
will have the identifying and locating information
immediately available if the client
does not inform the partner before the
time limit expires.
When the contract-referral approach is used,
the PCRS provider should also negotiate a
provision with the client whereby the partner
confirms in some way (e.g., telephone call,
appointment for services) to the provider that
he or she has been informed of being at risk.
Otherwise, the provider may have difficulty
knowing which partners have been informed
and whether or not provider referral or some
other assistance is now needed.
3.3 Setting Priorities for Reaching Partners
The PCRS provider and HIVinfected client must
prioritize reaching partners based on who is most likely to transmit
infection to others and who is most likely to become infected. |
The PCRS plan
must include prioritizing
which sex or
needle-sharing
partners need to be
reached first, based
on each client's and
partner's circumstances.
Ideally, all
partners should be
reached, but limited
program resources
usually dictate that priorities have to be set.
Priorities are determined by deciding (1) which
partners are most likely to be already infected
and to transmit infection to others; (2) which
partners are most likely to become infected;
and (3) which partners can be located. Priority
is also affected by federal and state laws. For
example, federal legislation requires that a good-faith effort be made to notify "any
individual who is the marriage partner of
an HIV-infected patient, or who has been
the marriage partner of that patient at any
time within the 10-year period prior to the
diagnosis of HIV infection." (Public Law
104-146, Section 8[a] of the Ryan White CARE
Reauthorization Act of 1996.)
A number of factors influence how the PCRS
provider and client decide which partners need
to be reached first. Obviously, if the client has
had only one partner during his or her life-time,
that partner is likely to be infected.
When the client has had more than one partner,
other factors then have to be considered,
such as the following:
- Possible Transmission of HIV to
Others. The partner who is most likely
to transmit HIV to others must receive
highest priority. A partner who is a
pregnant woman should be reached as
soon as possible for counseling, testing,
and referral to medical treatment if infected,
to avoid perinatal transmission.
Likewise, the partner who the client
knows has multiple other sex and needle-sharing
partners needs to be reached as
soon as possible to reduce the potential
for transmission of HIV to others.
- Partners of a Recently Infected Client.
If, for example, the client had a negative
HIV test result 6 months ago, but now
the test result is positive, partners within
that 6-month time period or in the potential
"window period" that preceded the
negative test would receive priority.
These partners are more likely to have
acquired or been exposed to HIV than
any of the client's partners during the
period before the client's HIV negative
test. Other evidence of a recently infected
person might be indicated by the exposure
history of the client, e.g., client with
a history of negative test results, findings
from less sensitive EIA or serologic
testing algorithm for recent HIV
seroconversion, or other evidence of
recent infection.
- Likelihood of the Partner Being Unaware
of Exposure to HIV. Some individuals
are less likely than others to
suspect a risk for HIV infection or to
understand what being "at risk" means.
For example, many heterosexual women
might be less aware of their HIV risk and
therefore less likely to access counseling,
testing, or other prevention services
without PCRS.
- Partners at Continued Risk. Reaching
the client's current, recurring, or recent
partners is a high priority because those
partners might be at continued risk of
becoming infected with HIV, if not
already infected.
- History of Other STDs. Either the
client's or partner's history of other STD
infections is an important factor in setting
priorities. For example, if a partner was
treated for another STD, that partner is
more likely to also be infected with HIV
and, additionally, more likely to transmit
HIV to others. If the HIV-infected client
has a recent history of other STD infection,
then his or her sex partners are more
likely to have been HIV-infected, especially
those exposed during the STD
infection (Wasserheit, 1992).
- Transmission of Strains of HIV That
Are Resistant to Antiretroviral Therapies.
If information or evidence exists that
the client is infected with a strain of HIV
resistant to antiretroviral therapies,
partners of this client would have high
priority for PCRS services.
The PCRS provider and client should begin by
noting current or recent partners and the
details of their exposure. Next, working back
in time, they should consider any other partners
who need to be contacted. By briefly
noting the circumstances for each partner and
then moving quickly on to the next one, the
provider will be better able to stimulate the
client's memory. Then, together, they can
determine the priorities for reaching as many
partners as program resources might permit.
Because determining when a client was actually
infected or the circumstances associated
with individual partners is often difficult or
impossible, some HIV prevention programs
routinely attempt to locate and counsel all
partners from a defined time period. This time
period, often 1-2 years, frequently is based on
availability of resources for PCRS. Programs
with greater amounts of resources, those with
lower morbidity, or those that give higher
priority to PCRS frequently attempt to reach
and counsel partners exposed over a longer
time period.
Once the provider and client have established
which partners are to be reached, they can
begin discussing a plan for reaching these
partners. For those partners the provider will
be contacting, exact locating information, plus
the dates, types, and frequency of exposure
should be noted (See Section 4.2). During this
phase, new information about partners might
come to light that necessitates adjustments in
the priorities previously established.
In addition to the factors listed previously, the
PCRS provider must also consider federal
legislation and relevant state laws that require
a good-faith effort be made in notifying current
spouses or persons who have been spouses of
a known HIV-infected person during the
10 years prior to the client's diagnosis of HIV
infection. Both the program policies of PCRS
and the efforts of individual providers contribute
to the required good-faith effort.
PCRS providers can satisfy the requirement of
a good-faith effort by (1) asking all HIV-infected
clients if they have a current or past
marriage partner(s), (2) notifying these partners of their possible exposure to HIV, except
in situations when, in the judgment of public
health officials, there has been no sexual
exposure of a spouse to the known HIV-infected
individual during the relevant time
frame; (3) referring them to appropriate
prevention services; and (4) documenting
these efforts. Programs need to have or
develop policies to guide providers in situations
in which the HIV-infected client does
not give consent and will not allow the
provider to notify his or her current or
past marriage partner(s).
3.4 Considering Other Options and Special Circumstances
3.4.1 Other Persons Who Might Need To Be Contacted
While the PCRS plan is being developed
and priorities are being set for reaching
partners, the provider should take special note
of any other persons being mentioned who
might be at risk. For example, during interviews
or counseling sessions, the HIV-infected
client might discuss other persons who are not
sex partners but are involved in a sexual or
drug-injection network with high risks of HIV
transmission. Another example is children or
newborns who might have been exposed
perinatally or through breast-feeding. Although
not direct sex or needle-sharing partners
of the HIV-infected client, these other
persons should be offered HIV prevention
counseling and testing, if resources and program
policies permit. General information
obtained through PCRS, not just a person's
name, can be used to identify high-risk places
and venues where PCRS programs can provide
outreach services. CDC encourages such
efforts to identify and lower risks of HIV and
other STDs within sexual or drug-injection
networks and is interested in working with
state and local health authorities to develop
methods and more detailed guidance on network
identification, analysis, and intervention.
3.4.2 "But, I Do Not Want My Partner To Be Contacted!"
CDC-funded
PCRS providers
must review
with the HIVinfected
client
in appropriate
detail the legal
and ethical
reasons for
informing sex
and needlesharing
partners
of their possible
exposure to HIV. |
Unfortunately,
in some cases HIV-infected
clients initially
will simply not
want their partners
notified. For example,
they might
fear loss of anonymity,
the breakup of a
relationship, or other
adverse consequences.
Clients might say that
partners have already
been informed about
their risks or that partners would not be
interested in counseling, testing, or other
support services. Providers can encourage a
client's participation by explaining that the
partner benefits by knowing his or her HIV
status and being able to seek immediate treatment
if infected. Also, if infected, the partner
can avoid transmitting the virus to others.
However, when a client is determined not to
disclose partner names, the PCRS provider
should counsel the client as if he or she has
chosen the client-referral approach.
Sometimes a client might not want his or her
partner notified because of fear of a violent
reaction from the partner. It is not uncommon
for persons receiving public health services to
report having experienced violence in their
lives (Maher, 1998). Therefore, providers
should be aware of the potential for partner
violence and should be prepared to make
appropriate referrals. If the provider has
indication of a potentially violent situation for
the client or others, the provider must make
an assessment prior to notifying the partner
and seek expert consultation before proceeding.
States have varying legal requirements
about reporting situations such as those involving
violence or child abuse. The PCRS
program must comply with relevant state laws
and local regulations.
In some cases, the provider knows of a partner
at risk even though the client has not identified
that partner. Whether or not a legal "duty to
warn" such partners (or identified partners
that the client did not want notified [see
Appendix B]) exists is best determined by
reviewing applicable state laws or regulations,
especially regarding spousal notification. All
states must have a policy established to guide
health department staff in situations in which
an HIV-infected client indicates he or she does
not plan to notify known partners and will
not provide the information necessary for the
health department staff to make the notification.
The Association of State and Territorial
Health Officials recommends in its 1988 Guide
to Public Health Practice: HIV Partner Notification
Strategies that a health care provider may
invoke his or her "privilege to disclose" (see
Appendix B) when that provider knows of an
identifiable at-risk partner who has not been
named by the HIV-infected person. State and
local HIV prevention program managers
should consider the ASTHO recommendations
and their own relevant laws when developing
policies and procedures.
3.4.3 PCRS for Needle-sharing Partners
Sharing of needles, syringes, and other
paraphernalia used for injection drug use (e.g.,
illicit drugs, steroids) carries high risk for
transmission of HIV. Throughout this document,
the importance of providing partner
counseling and referral services to HIV-infected
clients with needle-sharing partners is
emphasized. CDC recognizes that some HIV
prevention programs have relatively limited
experience in working with needle-sharing
partners and that special issues exist relating to
clients disclosing information about such partners,
reaching such partners, deciding which
prevention interventions should be provided,
and referring them for needed services.
Some state and local HIV prevention programs
have already gained considerable experience in
reaching and serving needle-sharing partners
and report that such services are feasible and
likely to be effective. For example, Levy and
Fox (1998) reported that injection drug users
infected with HIV want to notify their sex and
needle-sharing partners and are willing to
participate in the PCRS process. Information
provided by HIV-infected clients who are
injection drug users may help HIV prevention
program managers gain insight into the extent
and types of prevention service needs of injection
drug users and how best to deliver and
target such services.
CDC will provide expanded guidance on
PCRS for needle-sharing partners in future
versions of this guidance.
Go to Section 4.0 |