DRAFT National Standards for Peer Support in HIV

Introduction

Peer support is people who have lived through challenging events, have shared experiences, characteristics or circumstances providing mutual support to promote health and wellbeing. This can include people with similar health conditions, but also from similar communities or backgrounds, such as from BME and LGBT communities, or because of factors such as age, gender or refugee status. The relationship is one of equality, but the peers may be at different stages of their experience. It creates opportunities for both parties to strive and achieve a sense of control and empowerment: the peer supporter focuses on strengths and abilities and is seen as a role model, motivating and inspiring.

Peer support can be delivered in a range of structures, both one-to-one or in group settings, ranging from formal settings with trained peer staff or volunteers to more informal and ad-hoc support. Regardless of the structure, the support aims to achieve health or social care goals and improve quality of life.

Peer support is a reciprocal relationship, providing benefits to both those providing and receiving the support, and it can be said that peer support improves ‘social capital’. Benefits include creating collective strategies to maintain health, building resilience, empowerment, knowledge, confidence, self-esteem, improved self-management leading to unlocking independent living.

In the current health and social care environment where resources are scarce, agreed standards, data gathering and analysis will provide evidence based information for commissioning successful and cost effective services.

Peer support is recognised as effective in achieving health self-management and wellbeing and improving quality of life. These standards set a realistic and achievable format for delivery ofa service that is increasingly recognised by the NHS andas successful and cost effective, but most importantly valued by people living with HIV.

The format for the standards

Each standard is headed by a Standard Title

The title is followed by the reason for having the standard, the Rationale/Why, within this we will spell out what the standard means for different audiences

  • People with HIV accessing peer support
  • People who provide peer support
  • Health and Social Care and HIV Service providers

Each standard has a set of core competencies/skills which are needed to perform the role outlined in the standard. Core competencies are the knowledge skills and attitudes that need to be developed in order for the peer supporter to fulfil their role well

Expected outcomes: How do we know the standard is achieved?

We need to be certain that the intervention of peer support is achieving what it sets out to do,as well as to enhance knowledge and understanding of peer support and have evidence for influencing research and policy makers.

Standard 1:People who provide peer support will be living with HIV and have access to training, personal development and support.

Rationale/Why

The breadth of knowledge and skills involved in providing peer support (see core competencies below) means it is important that those providing peer support have access to structured training, possibly even linked to professional qualifications.

A structured process to recruit, train and retain peer supporters will ensure high quality peer support. Training will provide techniques based on therapeutic work, to protect the person providing peer support from being overwhelmed by another person’s pain or life complexities.

Peer support is complementary to professional psychological or clinical support, and requires a recognised training programme and where possible linked to an appropriate qualification.

Organisations or groups offering peer support need to provide further training and updates, and be committed to providing peer supporters with regular structured support, supervision and time for reflection with others. Supervisors have a role in ensuring that their supervisees are active in the care of themselves.

What this means for people with HIV accessing peer support

People with HIV accessing peer support that is backed by training and supervision can be confident that:

  • They will be listened to
  • They will not be judged
  • They will be appreciated for who they are
  • They will be treated with respect
  • Afull assessment of their needs will be explored and documented
  • Accurate monitoring and records will be kept
  • Sensitive issues relating tosexuality, gender identity, migration status,families, partner violence etc will be handled in confidence
  • Support will be backed by knowledge as well as personal experience

What this standard means for people providing peer support

People with HIV providing peer support will

  • Understand and subscribe to the basic philosophy and principles of peer support,
  • Have a training in HIV issues for the wide diversity of people with HIV
  • Have an awareness of their own limits and abilities in supporting people who may be in distress, present with mental health issues that require clinical support, require legal advice or practical support beyond the peer supporter’s remit
  • Understand the differences between peer support, counselling and psychological interventions
  • Be able to self-care and manage their own physical wellbeing
  • Be committed to attending updates and regular further training as a condition of providing peer supportand
  • Understand the roles and responsibilities of the HIV health and social care professionals and collaborate with their requirements on governance.

What this standard means for health and social care professionalsand service providers

The clinical or social care team will be able to be confident in the abilities and knowledge of the person providing peer support, that supervision and updating is part of service and thatthe structure of the peer support being provided has a clear and well evidenced basis.

Peer support training will provide clarity on roles and responsibilities, boundaries and governance forpeer support in clinic settings.

Competencies and skills:

People providing Peer Support will be able to demonstrate

  • Knowledge and understanding ofHIV and treatments
  • Understanding ofwell-being and self-management strategies
  • Ability not to over identify with a presenting issue
  • Understanding of sexual health
  • Understanding of reproductive needs and choices
  • Understanding ofan individual’s sexual choices
  • Understanding of current approaches to safer sex and harm reduction
  • Understanding and acceptance of diversity
  • Effective listening and communication skills
  • Ability to maintain accurate records
  • Understanding of confidentiality
  • Willingness to accesssupport and supervision

Expected Outcomes for people with HIV accessing peer support

  • Less isolation, improved social networks
  • Improved well-being and self-management
  • Appropriate treatment knowledge
  • Accessing other services, HIV related orstudy, training, employment or personal development

Expected Outcomes for people providing peer support

  • Increased confidence and feelings of self-worth
  • Access to training and skills development
  • Access to mutual support

Expected Outcomes for health and social care professionals and service providers

Health and social care professionals and service organisations will expect peoplewith HIV

  • to be healthier and present with less complex health issues
  • To have an increased ability to self-manage
  • Improved adherence to treatments
  • Public Health benefit: for people with HIV to be less likely to transmit HIV because of management of sexual relationships/harm reduction and ability to adhere to treatments.
  • To access other health checks- breast screening and cervical/anal cancer screening.

Standard 2: People living with HIV should be able to access peer support in a variety of settings and modalities

Rationale/Why

The population of people with HIV is diverse and peer support needs to be provided in ways to meet this diversity. Recognising that peer support starts with where an individual is in their life, it makes sense to offer peer support in settings and ways that are appropriate to the individual at that time.

Peer support happens in a number of settings: service organisation, clinic, hospital or in certain circumstances and with a risk assessment, an individual’s home, by a face to face meeting, phone or text, online or in a formal or informal group setting.

Whatever the setting for peer support, the relationship between the person providing peer support and their peer will be one of mutual respect, trust and collaboration. The relationship is geared towards achieving and maintaining meaning and purpose in life for both parties, it creates opportunities for both parties to strive and achieve a sense of control and empowerment: the peer supporter focuses on strengths and abilities and is seen as a role model, motivating and inspiring.

‘6 months ago all that person could do was cry, now look at him, chairing this meeting’

Peer supporter

Aframework of good practice suitable to each setting of peer support will ensure effective support and a protective environment for peers. A basic framework would cover expectations in a peer support relationship:

  • Confidentiality and what is confidential and what is not
  • Acceptablelength of the meeting or conversation,
  • Clarity on when and how to make contact,
  • Time lapses between contact,
  • Personal privacy and sharing of lived experience
  • Hours available for support and whether there is a policy of open access or appointments are needed.

What this standard means for people with HIV accessing peer support.

A wide range of peer support services, will provide a support setting appropriate for the individual.

I didn’t believe this woman had HIV, she looked well, got up every day and went work, was in a relationship, had a child,-all the things I wanted and thought I could never have now I had HIV. She said she had been like me once, and things would be different for me too.’

Woman with HIV

What this standard means for people providing peer support

Peer support provided in a range of settings lets peer supporters work in the settings they feel most suitable to them, and where listening and sharing their lived experience will be most relevant and most effective.

People providing support in different settingsneed to be clear on how they can effectively listen and empathise in different contexts. They need to be aware of when and how it is appropriate to share their life experiences, and how it is beneficial for the person they are supporting. They will need to make conscious choices on what is appropriate to say in a one to one setting, butmaybe not in a group setting or online.

Recognising there are key times and events when peer support can be of particular benefit, helps with accurate referrals for peer support:

  • At time of diagnosis
  • Starting treatment
  • Changing treatment
  • Starting/ending relationships
  • Planning a family
  • Pregnancy
  • Moving from child to adult clinical care
  • Key life events of aging such as starting the menopause, reaching age 50 etc
  • Any major life change

What this means for health/social care professionals and services

Peer support should be embedded in clinical services and be part of the clinical pathway.

I don’t know what magic happens in peer support, but I know whenever one of my patients sees a peer support worker, magic happens.’

Clinician Homerton

Good effective peer support is rooted in the reality of context, training and support. Peer support complements the clinical services, and as such it is important to establish a team relationship, with the peer supporter being part of the team able to act as a bridgebetween the individual and the clinical staff, but remaining independent of the establishment.

To ensure an inclusive working environment there will need to be a clear description of the peer supporter’s role and responsibilities and to have a senior team member responsible for peer support.In a clinic or social care setting agreements will need to be established on the responsibilities of the person providing peer support with regard to governance, communication with the team feedback, sharing of information and the role of advocacy.

Peer support which is provided by external services such as NGO’s in clinic settings validates the use of lived experience to clinical services.

Any organisation in which peer support is provided should be able to evidence commitment to collaboration between the team and the person providing peer support and to an environment that promotes peer support.

‘I take the person by the hand and lead them to meet the peer worker.’ Clinician Homerton.

Competenciesand skills of people providing peer support in different settings

  • Consistency in keeping appointments, keeping to time allocation and other boundaries
  • Ability to make accurate referrals
  • Consistent and accurate recording
  • Knowledge of existing peer support initiatives
  • Ability to recognise need for onward referral
  • Ability to manage abusive behaviour, including threats
  • Ability to deal with people who over use peer supporter/taking too much time
  • In the role of adult peer supporter of children or young people, an understanding of the relevant safeguarding and legal issues
  • Self-awareness regarding own limitations (because of personal issues and/or values) and ability to seek support from supervisors or management structures.

Ability to act on the values and principles of peer support:

  • Mutual benefit, giving and receiving help
  • Sharing experiences
  • Empathy

Expected Outcomes for people with HIV accessing peer support

Choice of peer support formats leading to increased uptake and access to other services

Expected outcomes for people with HIV providing peer support

At least a 70% success rate in meeting the agreed time from diagnosis to accessing peer support.

Expected outcomes for health and social care professionals and service providers

Agreed pathways for access to peer support in clinics.

Referrals to peer support being made at appropriate times (as listed above)

Activepromotion/offeringpeer support at times of change

Increased inter-agency collaborative working

Standard 3: Peer Support interventions will include robust monitoring, measuring and evaluation processes

Rationale (Why):Robust processes to measure peer support outcomes, such as Star Outcomes or Spidergraphs,to track outcomes and progress being achieved will ensure consistency in the content and quality of support. Recording systems will show progress as well as areas needing more support, and promote understanding and participation in measuring goals and outcomes.

The data on all aspects of peer support will be invaluable in providing the information on where and what changes are required, to ensure peer support is achieving its aims.The data captured could also provide evidence and informationfor research on aspects of peer support.

Evaluation of the service and the people providing peer support will make for a dynamic and flexible service. In the current environment where resources are scarce, data analysis will provide evidence based information for commissioning successful and cost effective services.

What this standard means for people with HIV accessing peer support

Using a monitoring system will promote participation in measuring achievements in areas such as:

Confidence

Emotional wellbeing

Accessing services

Talking about HIV to other people

Isolation

Treatment understanding

Intimate Relationships and sex

Managing HIV

Improved effectiveness of the peer support as monitoring will record the advances made and areas to work on

Moving from recording by the peer supporter, to self-scoring by the person being supportedwill promote ownership and increase motivation and self-management

People with HIV will be contributing to the shape and content of their services

What this standard means for people providing peer support

Monitoring shows successes and areas needing more workmaking for effective peer support

Accurate referrals as a result of having records to analyse

Researchers can be alerted to issues in the data that warrant investigating further.

Allocating time for record keeping, administrative work/debriefing sessions after a peer support meeting

What this standard means for health and social care professionals and service providers

Monitoring will make for accurate referrals to health and social care professionals

Health and social care professionals will have evidence of the measurable achievements in peer support

Good record keeping and analysis will provide evidence for commissioning services that are successful and cost effective.

Competencies

Record keeping, and analysis of records

People providing peer support will be able to record and analyse information to inform next steps and evidence changes

The person being supported will understand the & use outcomes charts by self-scoring

Expected Outcomes for people with HIV

Increasing self-management that can be evidenced by:

  • Readiness to engage with clinicians
  • Accessing new forms of support such as groupsupport meetings or a mentor mothers’ group.
  • Reducing isolation - can be measured by making new networks, and feeling confident in choices or engaging in activism & advocacy.
  • Increased openness about HIV as an indicator of acceptance of HIV and feeling comfortable
  • Ability to self-score on outcomes chart

Expected outcomes for people with HIV providing peer support

Accurate referrals

Development of skills and abilities in monitoring and analysis

Contributing to research and development of theory and good practice

Expected outcomes for health/social care professionals and service providers

Accurate data and evidence for planning and delivering services

Access to evidence for commissioning services

Data for planning and informing research programmes

Standard 4: Providing Peer Support for Children and Young People with HIV

Rationale/Why

‘If there was no peer support we would be in a horrible place, everyone would be stigmatised and the epidemic would increase’