Counselling / Linkage to care

Counselling

Counselling ensures a people-centred approach by providing sufficient information about testing, offering opportunities to reflect on personal risk in case of a non-reactive result and support, information and referral in case of a reactive result.

Get some insights from different Checkpoints in Europe in our video from the Workshop in Ljubljana:

Russian subtitles included /Включая российские субтитры

Item Does your CBCVT have this in place? Is there a documented standard, guideline, plan, policy, procedure, contract or agreement? Is it adapted to local needs and conditions? Is it working as intended? Action
Pre- and post-test counselling
Description

Description

Counselling in CBVCTs means receiving information, support and referral through a dialogue with a trained counsellor before and after the HIV test.

 

Guidance

Guidance

Counselling in CBVCTs is an opportunity for clients to focus on their own health. Pre-test and post-test counselling are two separate parts of one conversation and are usually provided by the same counsellor.

Counsellors/testers in CBVCTs are often peers (themselves members of the key population, in this case MSM). In small communities where many MSM know each other, this may on occasion create an unsuitable pairing. Both the counsellor and/or the client can decline to continue in this combination and another person takes over to conduct the counselling and testing.

See also COBATEST Guide to doing it better (3.5 on page 36).

The pre-test conversation always includes informed consent and may also focus on:

  • Risk assessment
  • Information about the test(s)
  • Information about confidentiality/anonymity
  • Filling in forms, e.g. a data collection instrument.

The post-test conversation will focus largely on the test result and may also include:

  • Arranging confirmatory testing
  • Information about confidentiality/anonymity
  • Referral to other services
  • Evaluation
  • Enrolment in a testing reminder service
  • Discussing partner notification
  • Linkage to HIV care
  • Accompanying clients home or to a follow-up appointment.

Written information for the client and guidance for the counsellor can assist in the counselling process. However, it is important to balance using written information and scripts with focussing on the needs of the client at the time. There are a range of standards, checklists and scripts for counselling conversations available. They contain variations on the main steps for each of the three possible counselling conversations associated with testing.

Pre-test conversation:

  • Greeting the client
  • Make the client aware of professional confidentiality and/or anonymity
  • If you are conducting training, ask the client for permission to invite a trainee to observe
  • Ask the client about the reason for testing and discuss the window period
  • Go through a risk assessment questionnaire (see also the section on risk assessment)
  • Offer additional tests (STI, hepatitis) if relevant
  • Explain the testing procedure
  • Explain what the result(s) (reactive/non-reactive) mean
  • Ask what results the client expects and what a reactive result for HIV would mean to him/her
  • Obtain consent to carry out the test(s) (see also ‘Informed consent and confidentiality’).

Post-test conversation (non-reactive result):

  • Explain/discuss the non-reactive result
  • Discuss how to deal with HIV risk in the future
  • Discuss sexual contentment (“Are you happy with your sex life?”) and other sexual health issues as appropriate e.g. STI, chemsex, PrEP
  • Discuss when if makes sense to have another test and offer reminder service if available
  • Provide information materials, condoms/lubricant, safe injecting materials as appropriate
  • Offer referrals to other services if relevant
  • Invite the client to provide feedback for evaluation (paper/online).

Post-test conversation (reactive result)

  • Explain the reactive result and what it means
  • Listen to the client’s reaction and support them through their initial response; include information on current treatment options and the general prognosis for HIV infection as appropriate
  • Discuss transmission risk
  • Discuss the option of inviting sexual partner(s) to be tested (see also the separate section on partner notification)
  • Discuss confirmatory testing
  • Make an appointment for confirmatory testing (if blood is not taken at the checkpoint)
  • Accompany the client to confirmatory testing or on their way home if possible/appropriate.

Also see: cdc_hiv_scripts-rapid_hiv_testing_for_individuals

 

Adaptation

Adaptation

Counselling is adapted to each client, giving him/her the choice to only talk about some issues and to skip others. This applies in particular to those who get tested frequently.

Counselling is a two-way conversation and the counsellor adapts to the needs of the client. Some common adaptations counsellors make are:

  • For clients who test frequently: ask if there have been any changes since the last test, whether the client has any questions about the routine process or would like to discuss anything before doing the test
  • For MSM clients who are affected by discrimination or internalised homophobia: discuss support options and MSM networks, make referrals as appropriate
  • For clients with very recent risk exposure (less than 72 hours): offer/refer to PEP.

The counselling process also needs to be adapted to local circumstances, regarding e.g.

  • Process for confirmatory testing
  • Available services to refer to.

Especially when results are determined in a separate laboratory, it is important to consider when the counsellor will find out about the result: before or at the same time as the client. Both variants are used in CBVCTs and each has their advantages and drawbacks. Finding out before the client allows the counsellor to recall the circumstances of the client and adapt their response. Finding out together avoids unintentional messages conveyed through body language, emphasises the peer-based nature of the process and normalises testing.

In general, results are only communicated in person or by telephone. However, some CBVCTs offer printed results with the caveat that it is a screening test, not a diagnostic test.

Post-test counselling in case of a reactive test result may also include:

  • Making follow-up appointments for the client
  • Accompanying the client home and/or to follow-up appointments.

 

Quality Improvement

Quality Improvement

Questions four and five of the Euro HIV EDAT Self-evaluation Grids focus on counselling. In addition, regular intervision (group meetings where colleagues raise questions and discuss their practice) and/or supervision for counsellors are essential in supporting them and in maintaining and improving their work.

Apart from initial and follow-up training, all CBVCT counsellors, whether they are peers or professionals (or both), need to have access to support, supervision, intervision and/or mentoring as required in order to maintain the quality of the counselling.

More information is available from local professional associations and educational institutions for psychologists and counsellors.

 

Action plan

Action plan

This Action Plan helps you to work directly on the items identified as priorities (yellow and/or red fields in the Checklist). Please list actions that are as specific as possible. You can download your finished Action Plans for each section as an xlsx.-document and print it afterwards. The Action Plans form the basis for your further planning, implementation and evaluation.

The Action Plan shows a sequence of steps to be taken, or activities to be performed for a strategy to succeed. The Action Plan has four major elements: (1) what will be done (specific tasks), (2) by whom (responsibility), (3) by when (timeframe), and (4) how the implementation of the task will be monitored.

 


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Informed consent
Description

Description

Informed consent means formally agreeing to be tested based on sufficient knowledge of the testing procedure and potential results.

 

Guidance

Guidance

To ensure that the client understands the test andwhat it means to receive the result and agrees to have the test of their own free will, CBVCTs use formal processes to obtain informed consent and document it.

This process is often integrated into the pre-test counselling conversation or the risk assessment. Consent is most often obtained verbally, using a question such as

“If you have no other questions, we can proceed with the HIV test. Do you agree to be tested for HIV today?”

The counsellor then documents the client’s response.

Please note:

  • Local laws and regulations may require specific forms of obtaining consent
  • The age of consent to medical examinations and procedures varies – parental consent may be required.

 

Adaptation

Adaptation

When and how informed consent is obtained depends on the CBVCT setting and mode of operation, and on national laws and regulations.

Some options are:

  • The counsellor/outreach worker obtains verbal consent during the pre-test conversation and documents it.
  • The doctor or nurse obtains informed consent before taking the sample.
  • In some countries, written consent is required for HIV testing.
  • In case of minors presenting for testing, local laws and regulations apply and consent by parents may be required. The age of consent for medical consultations and procedures varies between countries.

 

Quality Improvement

Quality Improvement

Question three of the Euro HIV EDAT Self-evaluation Grids focuses on confidentiality and informed consent. The procedure for obtaining informed consent can also be discussed as part of reflecting on the whole testing process, e.g. using the Self-Evaluation Grids during regular intervision or team meetings.

 


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Confidentiality and anonymity
Description

Description

Confidentiality means keeping the client’s personal information secret and is a core component on which consent is based. Anonymity means that the client never has to disclose their real name or contact details.

 

Guidance

Guidance

Laws or codes of practice often prescribe keeping medical confidentiality for health care professionals. However, not all health services are structured to ensure confidentiality. Because of the continuing stigma and discrimination that affects people living with HIV and because of homophobic attitudes, confidentiality is still a major concern for many who are getting tested. Apart from explaining it clearly, it is useful to include a statement on confidentiality (and/or anonymity if applicable) in the written information that the client receives.

To protect confidentiality, CBVCTs use unique identifiers, e.g. as codes derived from initials and birth date, to follow the pathway of clients through the system. If specimens are sent to laboratories, the unique identifier may be represented by a numbered code. Here, separate databases and storage for paperwork are maintained for personal details and health information (including separate briefcases for outreach services) to ensure that third parties cannot link identities to results.

Although this is rare, some CBVCTs offer their services anonymously. Stickers, numbers or fantasy names are used to track clients through the process. Anonymity, however, precludes some additional services such as reminders for regular testing.

Example: information sheet from Hannöversche AIDS – Hilfe (excerpt translated from the German original)

  • The risk analysis and the test are anonymous, please do not give your name.
  • On principle, we only conduct the rapid test in the context of a comprehensive risk analysis and counselling. A rapid test is not available without counselling.

Just like the doctors and reception staff, our counsellors operate under a strict duty of confidentiality.

 

Adaptation

Adaptation

There are several components that can work together to ensure client confidentiality and/or anonymity. They can be adapted according to locally relevant factors, such as data collection and reporting obligations, laboratory procedures, the available rooms etc:

  • Clients can make appointments to avoid meeting others in waiting areas.
  • Clients do not return to the waiting area once they have started the process.
  • Clients are given a number, code or sticker and their names are not recorded.
  • Clients choose a fantasy name to identify themselves for the purposes of testing.
  • All staff members have a duty to keep confidentiality.

 

Quality Improvement

Quality Improvement

Question three of the Euro HIV EDAT Self-evaluation Grids focuses specifically on confidentiality and informed consent. Ensuring confidentiality can also be discussed as part of reflecting on the whole testing process, e.g. using the Self-Evaluation Grids during regular intervision or team meetings.

 


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Risk assessment
Description

Description

A questionnaire to establish the level of HIV/STI/hepatitis transmission risk the client has been exposed to.

 

Guidance

Guidance

CBVCTs use risk assessment tools to:

  • Establish the level of risk the client has been exposed to
  • Inform recommendations for testing (which tests and when)
  • Find out what a reactive test result might mean to the client
  • Record consent for testing
  • Develop their services based on an analysis of the data.

It is important to inform the client about the purpose of the risk assessment and how these data will be used as part of obtaining informed consent.

Risk assessment tools are generally in the form of questionnaires and contain the following core questions:

  • Demographic details
  • When did you have your last test?
  • What is your reason for getting tested?
  • How do you rate your risk of having become infected?
  • What kinds of risk have you had (types of sexual intercourse, HIV status of partners, sharing injecting equipment)?
  • What would a reactive result mean to you?

Risk assessment tools are either filled in by the client and handed in, or administered by the counsellor during pre-test counselling. Participating in the risk assessment is voluntary and not a prerequisite for getting a test (‘Filling in this questionnaire helps the counsellor to respond to your needs. Filling it in is entirely voluntary and you can still get the test if you don’t.’). If the client hands in the filled-in questionnaire before the pre-test conversation, the counsellor can prepare for the conversation based on the answers.

It is important to balance following the risk assessment questionnaire and taking notes with paying attention to the client and responding to their needs. It may be in the client’s interest if the counsellor fills the risk assessment in from memory after the client has left.

There are many examples of risk assessment tools used by a range of CBVTs.

Download Fragebogen_english 2016.pdf

Download Fragebogen_Schnelltest (englisch) ab Mai 2016

Download Fragebogen-2016_EN.pdf

The COBATEST project developed a data collection form that also includes the risk assessment.

 

 

Adaptation

Adaptation

Adapting risk assessment tools and procedures is mainly about balancing the clients’ interests (low threshold voluntary counselling and testing) with some broader interests such as evaluation and research.

Questionnaires and data collection can be adapted to the needs of the key population and local circumstances in order to minimise any negative impact on the uptake of testing and to maximise useful information to guide the CBVCT service. Aspects of risk assessment data collection that can be adapted are:

  • Who fills in the questionnaire and when (counsellor or client; before, during or after the pre-test counselling conversation)
  • How long the questionnaire is
  • How personal the questions are
  • The language used to respond to cultural and linguistic diversity.

Responding to the needs of the client in each situation may mean:

  • Listening to the client’s concerns and postponing the risk assessment
  • Omitting the risk assessment altogether
  • Filling in the risk assessment or data collection form from memory after the client has left.

 

Quality Improvement

Quality Improvement

It can be very useful to include the key population in the design of data collection instruments (e.g. questionnaires) and processes (e.g. who fills in the questionnaire, when and where) during the planning phase for the CBVCT. The Participatory Quality Development tool (PQD, available on www.qualityaction.eu) offers step-by-step guidance on methods such as Focus Group to consult and involve stakeholders, even if little time and few resources are available.

To inform quality improvement, questions about the risk assessment may be included in the feedback invited from clients. The team can then discuss any changes to improve data collection.

 


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Data collection and analysis
Description

Description

The data collected as part of CBVCT are analysed for monitoring, evaluation and research purposes. They can describe the population reached, assist in assessing their needs and identify trends in risk perception and testing behaviour.

 

Guidance

Guidance

It is important to inform clients about the use of data collected as part of the CBVCT procedure (e.g. ‘Your answers will also be used to guide our service and for research purposes.’) and to make participation voluntary and independent of the testing offer.

Standardised questions, collecting de-identified data consistently, entering it in a database and analysing it regularly are prerequisites for identifying trends.

Questions on even a small number of variables can guide the work of the CBVCT.

Who is accessing the CBVCT, is it the intended key population?

  • Gender identity (men, women, transgender/transsexual and intersex people)
  • Age group
  • Country of origin
  • Place of residence
  • Sexual identity/sexual orientation.

Why are people accessing the CBVCT, are they asking for the test based on actual risk?

  • Time since the last test
  • Reason for coming for testing (routine check, recent risk, new partner etc.)
  • Self-assessed risk (e.g. on a scale from 1-10)
  • Recent sexual risk behaviour (with which gender, type of sexual intercourse, protected or unprotected, how often, how long ago)
  • Sharing drug use equipment.

As an indicator of fear and stigma, how do people accessing the CBVCT think they will respond to a reactive result?

  • Self-estimation of response (e.g. on a scale of 1-5, how high do you think the impact of an HIV diagnoses would be?).

What other health issues are relevant people accessing the CBVCT, are they aware of STIs, hepatitis, vaccination etc?

  • Testing, diagnosis and treatment history
  • Vaccination history
  • Awareness of specific STIs, e.g. syphilis.

Basic statistical analysis of the responses can be summarised in regular reports for discussion in team meetings.

Template Download: Statistical Report

Reporting items in this list include indicators suggested by the HIV COBATEST project for the monitoring and evaluation of CBVCT services:

  • Overall number of tests
  • Average age
  • Gender distribution
  • Place of residence (by postcode/region)
  • Reason for coming for a test today
  • Last HIV antibody test
  • Test results
  • Number of evaluation sheets returned
  • Where clients found out about the service
  • How clients rate the service, what they liked and what could be improved
  • Sexual orientation
  • Age group distribution.

 

Adaptation

Adaptation

Depending on the time and skills available, the scope of data collection and analysis can be adapted. Basic data can be analysed periodically once a database and reporting system has been set up.

It is also possible to ask for expert assistance in the set-up phase and then train staff members in data entry, data management and analysis.

Options for reducing costs:

  • Offer students the opportunity to analyse the data as part of their course work (e.g. social science, nursing, public health management and related courses)
  • Reduce the frequency of analysis reporting and combine it with other evaluation and reporting tasks.

 

Quality Improvement

Quality Improvement

Many data management systems integrate data cleaning and checking mechanisms to minimise inaccuracies.

How to improve the overall data collection and analysis of the CBVCT is covered by structured quality improvement using tools such as Succeed or QIP (www.qualityaction.eu), both of which include questions about the availability of data available for decision making and development, as well as their usefulness.

 


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Counselling methodology
Description

Description

Counselling methodologies are sets of principles and techniques counsellors use to conduct the conversations they have with clients. They are based on psychological and social science theories as well as practical counselling experience.

 

Guidance

Guidance

Pre- and post-test counselling conversations are in most cases one-off, short interventions. The selected counselling methodology needs to fit the available time, the needs and goals of the client as well as the objectives of the CBVCT service.

Counselling during the HIV testing process may involve directive, semi-directive or non-directive interviewing techniques, motivational interviewing etc. Numerous guidelines and checklists have been produced on HIV counselling. These documents list the approaches to take and attitudes to develop in order to conduct effective counselling.

Counselling training manuals and presentations contain detailed information about counselling methodologies appropriate for CBVCT services, especially those that are provided by peers.

See also: cdc_hiv_scripts-rapid_hiv_testing_for_individuals

 

Adaptation

Adaptation

There have been discussions regarding the role and extent of counselling as part of the VCT process. Some argue for fully professional counselling in order to use the opportunity of the testing appointment to influence risk behaviour. Others, including the ECDC and WHO, propose to replace the term ‘counselling’ with ‘information’, at least for the pre-test conversation with the client.

Counselling methodologies can offer clear principles and practical approaches that CBVCT services can use to build their own counselling guidelines and training materials. Some of the factors that will influence how a counselling approach (e.g. motivational interviewing) is adapted to the pre- and post-test conversations within CBVCT are:

  • Who conducts the counselling (e.g. peer, social worker, psychologist, nurse)
  • What is discussed during counselling (e.g. risk assessment, self-care, stigma, homophobia, referral to other services)
  • What the limits of the setting are (e.g. level of privacy in outreach situations, time constraints)
  • What the needs of the key population are (e.g. a fast and simple process for MSM who test routinely and often, or reaching new groups of vulnerable MSM with no previous testing experience).

Options for reducing costs:

  • Training volunteers (with or without existing experience in this field) as peer counsellors
  • Developing tailored, in-house training programmes in collaboration with external experts.

 

Quality Improvement

Quality Improvement

It is an important part of structured quality improvement to reflect on counselling methodology, scripts, checklists and training materials. This can be achieved, for example, by conducting a special team meeting on the topic every year or at least every two years. It is best if all relevant personnel (volunteer/paid counsellors, trainers, managers, evaluators, invited experts) participate and if feedback from clients (evaluation results) is available to inform the discussion. This kind of reflective discussion can also be used to adapt the counselling methodology to changes in testing processes, the key population and its needs.

You can use the step-by-step instructions for methods such as Rapid Assessment, Focus Group or Enquiries and Concerns Register in the PQD tool (Participatory Quality Development, available at www.qualityaction.eu) to collect feedback from service users as well as from staff and volunteers.

 


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Partner notification
Description

Description

Partner notification in the context of CBVCT means informing sexual contacts of a client diagnosed with an infection of the possibility that they may also have been exposed.

 

Guidance

Guidance

Partner notification is usually part of the post-test conversation with those diagnosed positive for HIV or STIs. There are different approaches to partner notification and there is a diversity of practice across countries. Partner notification has been a contested topic.

Some argue that any form of partner notification system will raise privacy concerns among MSM and reduce the uptake of regular HIV testing, particularly among those who think they may have been at risk.

Current recommendations (please refer to the ECDC report on partner notification, available at http://ecdc.europa.eu/en/publications/publications/partner-notification-for-hiv-sti-june-2013.pdf) are for voluntary, anonymous partner notification using online systems. Such systems provide the opportunity for the client to input the contact details of their sexual partners into a system directly, which then generates SMS and/or email messages. The sender is the health service, and recipients cannot trace the message back to the client solely on the basis of the partner notification system. However, they might be able to guess based on their number of partners and recollection. It is therefore essential that participation in partner notification is voluntary for clients in order not to increase the barriers to being tested in the first place.

Here is an example from the LX Checkpoint in Lisbon:

http://www.checkpointlx.com/public/uploads/posters/2016/02_HIV_Partners_Notification_PARIS_2016.pdf

http://www.checkpointlx.com/public/uploads/posters/2016/05_CheckOUT_AIDS2016.pdf

You can find further international examples in Dutch, English, Portuguese and Spanish here:

https://partnerwaarschuwing.nl/

https://www.sxt.org.uk/

http://www.letthemknow.org.au/

http://www.thedramadownunder.info/introduction/

http://www.checkpointlx.com/checkout

http://www.inspot.org/

http://gaispositius.org/contacto/diselo/

 

Adaptation

Adaptation

Partner notification is a sensitive topic for clients and service providers. Developing a web-based system will require technical expertise. It is important to consider local circumstances, including national and European data protection laws when considering the introduction of such a system:

  • Size of the town/city and MSM social/sexual networks
  • Acceptability: level of concern about confidentiality and anonymity among clients
  • Cost of developing a web-based system and potential benefit.

For a review of the acceptability of partner notification (from the USA), go to

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4948177/pdf/nihms797152.pdf

Options for reducing costs:

  • If you only expect a small number of partner notifications, consider a manual system of SMS and email notifications from a neutral sender (e.g. a general checkpoint address) operated by staff.

 

Quality Improvement

Quality Improvement

While the output of partner notification systems can be monitored (e.g. uptake, notifications sent, partners notified), it is difficult to get feedback on the quality of the system from its users due to voluntariness and anonymity. If notified partners are given a code or voucher to use if they attend the CBVCT for testing, they can be asked for feedback, and testing attendances and infections found can be counted. However, some may access testing elsewhere or without using the code.

Regular clients could be asked to provide feedback on the system as part of evaluation and staff can review the quality as part of overall structured quality improvement activities, e.g. using the tools available on www.qualityaction.eu and during regular staff meetings.

 


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