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Access chapter 3: Assessing needs and resources and deciding what to do
   Last updated: 19.07.02
Summary
Chapter 3 of this handbook helps groups to develop an understanding about:

  • The importance of assessment in understanding HIV-related treatment needs and resources in their community.

  • What HIV-related treatment is or is not already available and accessible.

  • How people with HIV decide about treatment, where they go for it, and who helps them to use it.

  • What other organisations are doing about HIV-related treatment and how it might affect a group's decision to get involved.

  • The capacity of a group to respond to HIV-related treatment needs.

  • How to make decisions about getting involved with HIV-related treatment, and communicate them to others.


[NB. The examples in this chapter are compiled from activities conducted during workshops on access to HIV-related treatment in India, Zambia and Cambodia.]

3.1. The assessment process
Many NGOs/CBOs/PLHA groups become involved in HIV-related treatment work because they want to respond to the urgent needs of people with HIV. Groups working in HIV-related treatment should consider certain issues. These include:

  • Sustainability. For example, has the organisation got the capacity and resources to continue responding to treatment needs for as long as help is required?


  • Coverage. For example, how does the number of people with HIV that the organisation can help compare with the total number who need treatment?


  • Equity. For example, are the health needs of the people met in a fair and just way?


  • Quality. For example, can the organisation provide treatment services that are effective, both at the start of their work and over the longer term?


What is an assessment?
To make good decisions about starting or increasing the scope of HIV-related treatment work, an organisation needs to begin with analysing the existing needs, resources and action in their community. This can be done through an assessment.

An assessment is a way to understand the context in which an organisation is working and to make strategic decisions about what to do. It can involve many different people and organisations, including community members, local leaders and the organisation itself. It enables people to share their "real life" experiences, opinions and concerns - usually through a mixture of focus group discussions and participatory activities.

An assessment helps to ensure that action on HIV-related treatment is based upon the real needs of the community - rather than on what people think they are.

An assessment can help an organisation to answer questions such as:

  • What are the treatment priorities of people with HIV?

  • What difficulties do people experience in using treatments?

  • How could access to HIV-related treatment be improved?

  • How could your organisation make the biggest difference possible?


The involvement of people with HIV is especially vital to any work aiming to meet their needs. If people with HIV are involved throughout, from the assessment to the decision-making process, through to the implementation of the work, their ideas and experiences can contribute greatly. The involvement of people with HIV will also help to reduce HIV/AIDS-related stigma and discrimination.

The assessment process
The assessment process involves 3 key steps:

Step 1. Assessing needs and resources: A. of people with HIV and the community; B. of the local environment; C. of your NGO/CBO

Step 2. Prioritising needs and resources

Step 3. Deciding what to do

This chapter give sets of questions that can be used in the three parts of Step 1 - to assess the needs and resources of people with HIV and the community, the local environment, and your organisation. These questions can be used as the basis of:

  • Focus group discussions and/or

  • Group activity sessions.


The chapter also provides help in how to prioritise needs and resources, and decide what your organisation will and will not do.

Planning an assessment
To plan an assessment, an organisation needs to decide:

Who will be involved?
  • How many and what type of participants do you want?

  • Will you have separate groups of participants or mixed groups?


How will the assessment be carried out?
  • How much time is needed?

  • When and where will you carry it out?

  • Can you talk openly about HIV, or should you talk generally about illness?

  • How can you put people at ease about sensitive subjects?


How will the assessment be documented?
  • How will you record your results?

  • How will you share your results with others?


3.2.A. Assessing needs and resources - people with HIV and the community
Any work on HIV-related treatment must respond to the real needs of people with HIV and the community. Therefore, an assessment should start by looking at what type of treatment people need, what they currently do when they need treatment, and what existing resources are available.

An assessment can also look at what a person does about illness and how that is influenced by different factors and people, including family, friends and the community. Learning what happens to a person on their journey to seek treatment helps to build an understanding about the overall strengths, weaknesses and gaps of existing services in the community. It is also important to understand the community's attitudes towards illness and the community's perceptions of risk that those involved in providing treatment may face.

An assessment of the treatment needs and resources of people with HIV and the community could involve some or all of:

  • People with HIV

  • Families

  • Health workers

  • Community leaders

  • Carers

  • Traditional healers


It could focus on 3 key questions, each of which can form the basis of both focus groups discussions and participatory group activities:

Question A.1: What are the treatment needs of people with HIV in your community?

Question A.2: Where do people get HIV-related treatment in your community?

Question A.3: How do people with HIV seek and use treatment in your community?

Question A.1: What are the treatment needs of people with HIV in your community?
Questions for focus group discussions

Key questions to ask participants in focus group discussions include:
  • What is the range of HIV-related treatment needs in your community?

  • What are the most common treatment needs of people with HIV in your community?

  • What are the most effective treatments for people with HIV in your community?


Participatory group activity

Aim: To assess the HIV-related treatment needs of people with HIV in your community.

Instructions:
1. Explain the aim of the activity
2. On a large piece of paper, draw a long line to represent the lifeline of a typical person with HIV in your community. For example, it might start with when they are diagnosed as HIV-positive and end with their death.
3. Ask participants to suggest the name of a health problem experienced by a person with HIV. Examples might include fever or TB. Write each suggestion down on a small piece of paper.
4. Ask participants to place the pieces of paper on the lifeline, according to where the health problem might occur during the life of the person with HIV.
5. Ask participants for suggestions of treatments for each of the health problems. Examples might include paracetamol or TB drugs. Write them down next to the health problem on the lifeline.
6. Discuss what can be concluded about the treatment needs of people with HIV in your community.

Facilitators' notes:
  • Encourage participants to think of both traditional treatments (such as herbs) and “western” treatments (such as pharmaceutical drugs).

  • Encourage participants to assess the scale of each health problem - such as how severe it is and how many people with HIV experience it.


Example:

[Diagram shows a timeline from HIV+ diagnosis to death, along which are arranged the following examples of illnesses and treatments: TB - rifampicin; Fever - paracetamol; Diarrhoea - charcoal tablets, oral rehydration salts; Oral thrush - fluconazole; Pneumonia - codeine, morphine]

Question A.2: Where do people with HIV get treatment in your community?
Questions for focus group discussions

  • Where is HIV-related treatment available in your community?

  • Where can people with HIV access HIV-related treatment?

  • What are the barriers to people accessing HIV-related treatment?


Participatory group activity

Aim: To assess what treatment is available and accessible to people with HIV in your community.

Instructions:
1. Discuss with participants what is meant by "available" and "accessible" in relation to HIV-related treatment [see Chapter 1.3.A and 1.3.B]. Brainstorm some local examples of what they mean in practice in your community.
2. Ask participants to draw a map of their community on a large piece of flipchart paper or on the ground. Ask them to include all of the key features such as roads and clinics.
3. Ask participants to mark with a star the places where different types of HIV-related treatment are available in their community such as the home or traditional healer.
4. Ask participants to assess how accessible each of the treatments are for people with HIV. If a treatment is not accessible, ask them to identify why.
5. Discuss what can be concluded about the availability and accessibility of HIV-related treatment in the local community.

Facilitators' notes:
  • Ensure that participants mark in both "formal" sources of treatment (such as hospitals) and "informal" sources (such as traditional healers).

  • Help participants to think critically about whether all treatments that are available to people with HIV are also accessible to them.


Example:

[Shows a simple map on which the clinic, NGO, traditional healer, church, pharmacy, doctors, market, refugee camp, school, park, are all placed. There are asterisks for treatment provision after: church, NGO, clinic, traditional healer, market, pharmacy and doctors]

Question A.3: How do people with HIV seek and use treatment in your community?
Questions for focus group discussions

  • How easy is it for people with HIV to use different types of treatment?

  • What prevents people with HIV from using treatment properly?

  • How do social, financial and cultural factors affect how people with HIV use treatment?


Participatory group activity

Aim: To assess how people with HIV seek and use treatment in your community.

Instructions:
1. Explain the aim of the activity.
2. Brainstorm the different places where people with HIV seek treatment in your community and, write them down on the left-hand side of a large piece of flipchart paper. Examples might include a pharmacy or hospital.
3. Write the reasons why someone would chose to seek treatment from a place along the top of the paper. Examples might include good location or low cost.
4. Draw in lines to make a grid. Then, take participants through the grid – assessing each place and ticking the boxes beside it if the reasons apply.
5. Then ask participants to share “typical” stories of people with HIV using treatment from the places effectively or not effectively. Ask them to identify factors that prevent people from using treatment effectively.
6. Facilitate a discussion about what can be concluded about how people with HIV seek and use treatment in your community.

Facilitators' notes:
  • Support participants to focus on the "real life" reasons that affect people's decisions about using treatment - such as money and time.

  • Support participants to really discuss - rather than just tick the box - why people would access treatment from a particular place.


Example:

[A table is drawn up with providers listed down the left hand side, as in: Clinic, NGO, Pharmacy, etc - and criteria listed along the top, namely: Good location, Low cost, Friendly staff, Skilled staff, Recommended by others. Ticks are made in the boxes to show whether each criterion is met by each provider.]

3.2.B. Assessing needs and resources - the local environment
Before making a decision about what specific HIV-related treatment work to do, an organisation needs to understand what others are already doing in the area. This can help to avoid duplication of efforts and to address people's treatment needs more effectively.

An assessment can provide an opportunity to analyse what other organisations are involved, what they are doing and how well they are doing it. This will help the organisation to decide where it might make the biggest difference.

An assessment of the local environment could involve some or all of:

Other NGOs - Government - Hospitals - Doctors - Pharmacists - Donors - Groups of people with HIV

It could focus on 3 key questions, each of which can form the basis both of focus group discussions and participatory group activities:

Question B.1: Who is involved in providing treatment for people with HIV in your community?

Question B.2: What HIV-related treatment services are other organisations providing in your community?

Question B.3: How effective is the HIV-related treatment work being done by other organisations in your community?

Question B.1: Who is involved in providing treatment for people with HIV in your community?
Questions for focus group discussions

  • How many other organisations are involved in HIV-related treatment in your community, and what type of organisations are they?

  • What type of HIV-related treatment work are they involved in?

  • What is the quality of their HIV-related treatment work?


Participatory group activity

Aim: To identify which other organisations are involved in HIV-related treatment work in your community.

Instructions:
1. Ask participants to draw a map that shows the other organisations in HIV-related treatment work in your community as different parts of a universe. Examples might include drawing another NGO as a star or a hospital as a moon.
2. Ask participants to explain why different organisations have been drawn in different ways and what it shows about their work and their relationship to each other.
3. Discuss what can be concluded about who is involved in treatment work for people with HIV.

Facilitators' notes:
  • Encourage participants to use the parts of the universe to communicate their feelings about an organisation. For example, if they feel positive about it, they might draw it as a sun.

  • If participants are not comfortable with drawing a universe, ask them to draw the organisations as any other type of shapes that communicate how they feel about them.


Example:

Red Cross clinic drawn as big star, Donors - local and international drawn as the sun, Other local NGOs drawn as little stars, Ministry of Health drawn as the moon, Groups of people with HIV drawn as comets.

Question B.2: What HIV-related treatment services are other organisations providing in your community?
Questions for focus group discussions

  • What HIV-related treatment services are other organisations offering to people with HIV in your community?

  • What scale of HIV-related treatment services are other organisations providing?

  • Where and to whom are other organisations providing HIV-related treatment?


Participatory group activity

Aim: To assess what HIV-related treatment services other organisations are providing in your community.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to select an HIV-related treatment that is available in your community. Ask them to brainstorm the organisations that are providing it.
3. Ask participants to draw a diagram - with the treatment in a circle at the centre and the organisations in circles around it. If the organisation can provide a lot of the treatment, ask them to draw it in a circle close to the treatment. If they can only provide a little, ask them to draw it at a distance.
4. Repeat the activity for 2-3 other examples of HIV-related treatments.
5. Discuss what can be concluded about the HIV-related treatment services offered by other organisations in your community.

Facilitators' notes:
  • Encourage participants to select a variety of HIV-related treatments - from simple drugs (such as paracetamol) to complex ones (such as antiretrovirals).

  • Ensure that participants include both "formal" sources of the treatment (such as hospitals) and "informal" sources (such as markets).


Example:

[Drawing with TB drugs at the centre, linked to: NGO clinic; Government clinic; Market traders; Church home based care team; Hospital.]

Question B.3: How effective is the HIV-related treatment work done by other organisations in your community?
Questions for focus group discussions

  • What are the strengths of the HIV-related treatment work done by other organisations?

  • What are the weaknesses of their work?

  • What are the significant gaps or duplications among other organisations involved in treatment?


Participatory group activity

Aim: To assess how effective the HIV-related treatment work is by other organisations in your community.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to select an organisation involved in HIV-related treatment in your community. Write each type of treatment that it provides on a separate piece of paper.
3. Draw a ranking line with “not effective” at one end and “very effective” at the other.
4. Ask participants to place the pieces of paper along the ranking line – according to how effectively the organisation provides the HIV-related treatment.
5. Repeat the activity for another 2-3 organisations.
6. Discuss what can be concluded about how effective the HIV-related treatment work is by other organisations in your community.

Facilitators' notes:
  • Encourage participants to look at a broad variety of organisations providing treatment, including government, non-governmental and “traditional.”

  • Support participants to offer honest and constructive criticism about the work of the organisations, rather than being too negative.


Example:

[For an unnamed provider, treatments ranged from not effective to very effective are, in order: TB treatment & Income generation; Nutrition; Palliative care; Counselling.]

3.2.C. Assessing needs and resources - your NGO/CBO
Before making a decision about what specific HIV-related treatment work to undertake, an organisation needs to understand its own capacity to do the work. Being too ambitious or wasting precious resources can lead to failure. Therefore, assessing an organisation's capacity can help to ensure that it is building on its strengths and improving on its weaknesses.

An organisation needs adequate human resources with the right knowledge, skills and attitudes to carry out its chosen work. It also needs basic organisational systems and management to carry out a number of key tasks that support work on treatment, such as:

  • Identifying needs, setting objectives and planning the work.

  • Budgeting, accounting, documenting experiences and getting funds.

  • Monitoring progress.


An assessment of your organisation could involve some or all of:

Staff - Volunteers – Trustees – Donors - Management Committee - Peer educators - People with HIV

It could focus on 3 key questions, each of which can form the basis of both focus group discussions and participatory group activities:

Question C.1: How does HIV-related treatment work fit with your organisation's mission?

Question C.2: What are your organisation's resources in relation to HIV-related treatment work?

Question C.3: How could your organisation's current programmes support future work on HIV-related treatment?

Question C.1: How does HIV-related treatment work fit with your organisation's mission?
Questions for focus group discussions

  • Does work on HIV-related treatment complement or conflict with your organisation's current mission?

  • Is there a demand from the community for you to add HIV-related treatment to your organisation's mission?

  • Is there interest within your organisation for HIV-related treatment to be added to your organisation's other work?


Participatory group activity

Aim: To assess the strengths and weaknesses of your organisation to undertake treatment work.

Instructions
1. Explain the aim of the activity.
2. Ask participants to discuss the existing mission of the organisation.
3. Draw two columns on a piece of flip chart paper. At the top of one, draw a smiling face and write “Would support.” At the top of the other, draw a frowning face and write “Would not support.”
4. Ask participants to list the ways in which treatment work would or would not support the organisation’s existing mission. Write the key points in the appropriate column on the flipcharts.
5. Discuss what can be concluded about how HIV-related treatment work fits with the organisation’s existing mission.

Facilitators' notes:
  • If participants do not know the organisation’s exact mission, ask them to brainstorm its general aims and objectives.

  • Encourage participants to think honestly and critically about how work on HIV-related treatment might affect the organisation’s both positively and negatively.


Example:

Would support
  • Would strengthen our mission to provide comprehensive care and support

  • Would show that we are responsive to the needs of people with HIV

  • etc.


Would not support
  • Would make our NGO seem too medical

  • Would take us from our focus on psycho-social support

  • etc.


Question C.2: What are your organisation's resources in relation to HIV-related treatment work?
Questions for focus group discussions

  • What management and administration systems does your organisation have to support HIV-related treatment work?

  • What relevant staff, facilities and funding does your organisation have?

  • What linkages with other organisations involved in HIV-related treatment does your organisation have?


Participatory group activity

Aim: To assess the strengths and weaknesses of your organisation's resources for carrying out work on HIV-related treatment.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to brainstorm what type of resources an organisation needs for treatment work.
3. Divide a piece of flip chart paper into two columns, one headed “Strengths” and the other headed “Weaknesses”
4. Ask participants to identify the strengths of the organisation’s resources in relation to work on HIV-related treatment. Write the key points in the appropriate column.
5. Ask participants to identify the weaknesses of the organisations’ resources in relation to work on HIV-related treatment. Write the key points in the appropriate column.
6. Facilitate a group discussion about what can be concluded about the strengths and weaknesses of the organisation’s resources to undertake treatment work.

Facilitators' notes:
  • Encourage participants to be very honest about whether the organisation will be able to cope with the extra work and complexity of HIV-related treatment.

  • Encourage participants to think broadly about what type of resources are needed – including not just money, but also time, space and skills.


Example:

Strengths
  • Staff with enthusiasm and strong care skills

  • Counselling room that could be used for treatment

  • Good links with pharmacy

  • etc.


Weaknesses
  • No specific skills for treatment work

  • No funds for treatment work

  • Staff already have huge workloads

  • etc.


Question C.3: How could your organisation's current programmes support future work on HIV-related treatment?
Questions for focus group discussions

  • What programmes does your organisation currently have, and what are their major strengths and weaknesses?

  • How sustainable are your current programmes?

  • How might your current programmes link with work on HIV-related treatment?


Participatory group activity

Aim: To identify how an organisation's current programmes might link with their work on HIV-related treatment.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to brainstorm what type of resources an organisation needs for treatment work.
3. Divide a piece of flip chart paper into two columns, one headed “Strengths” and the other headed “Weaknesses”
4. Ask participants to identify the strengths of the organisation’s resources in relation to work on HIV-related treatment. Write the key points in the appropriate column.
5. Ask participants to identify the weaknesses of the organisations’ resources in relation to work on HIV-related treatment. Write the key points in the appropriate column.
6. Facilitate a group discussion about what can be concluded about the strengths and weaknesses of the organisation’s resources to undertake treatment work.

Facilitators' notes:
  • Encourage participants to be honest about whether work on HIV-related treatment will help or hinder the organisation's existing programmes.

  • Support participants to identify both programmatic links (such as sharing supplies of condoms) and organisational links (such as sharing administrative systems).


Example:

[A triangle showing two-way links between: existing TB programme; existing care and support programme; and a new treatment programme]

3.3.A. Analysing your findings
Having carried out an assessment of the needs and resources of people with HIV and the community, the local environment, and your organisation, it is important to analyse your findings.

This process involves three steps:

1. Sorting through the information - to get it in order, and to identify common themes, areas of disagreement and gaps.
2. Identifying the key findings - to draw relevant conclusions from the information.
3. Checking the information - to ensure that it correctly represents the views of the participants.

This process can be carried out in a participatory way. For example, sorting the information and identifying the key findings could involve using participatory activities with the staff and volunteers of your organisation and representatives of the assessment participants. While checking the information could involve making a presentation of the key findings to a larger group of the assessment participants and asking for their feedback.

Activity: analyse findings
Aim: To analyse the findings of your assessment of needs and resources for carrying out work in HIV-related treatment.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to gather together all of the information from their assessment. Ask them to divide it into three piles according to the three parts of the assessment, namely - people with HIV and the community, the local environment and your organisation.
3. For each pile, ask participants to analyse the information to see if there are:
  • Common themes emerging from the information.

  • Areas of disagreement within the information.

  • Gaps in the information.

4. Based upon their analysis, ask the participants to identify 3-4 key findings for each part of the assessment.
5. Ask the participants to decide how they will check their analysis and key findings with the participants from the assessment.
6. Discuss what can be concluded about analysing the findings from the assessment of needs and resources for HIV-related treatment.

Facilitators' notes:
  • Ensure that participants' analysis is based on the findings of the assessment rather than their personal opinions.

  • Help participants to identify key findings that are as specific as possible and relevant to practical work on HIV-related treatment work rather than theoretical ideas.


Example: Key findings

People with HIV and community
  • People have a huge range of needs - from pain relief to antiretrovirals

  • Fear of stigma prevents people accessing treatment

  • People with HIV feel treatment and support services lack coordination

  • Specific treatment for women with HIV is lacking


Local environment
  • Very few organisations provide medical treatment beyond pain relief

  • TB programmes are very strong

  • Competition between NGOs is strong

  • The Government is failing to coordinate efforts or give guidelines


Your NGO/CBO
  • Has a strong, established relationship with the community

  • Lacks sustainable funds for treatment work

  • Staff are overwhelmingly positive about treatment work

  • Lacks medical staff with specific HIV-related knowledge


3.3.B. Reaching a decision
Having analysed the results of your assessment, the next step is to decide what your organisation will or will not do in relation to HIV-related treatment.

This process involves using the analysis of your results to set priorities for the future. This lays the foundations for developing polices and strategies to put the work into action.

When setting priorities, it is important to decide:

  • Who should be involved in making the decision?


Decision-making about what to do will be more effective if you involve all those concerned, particularly those that will be directly affected by the work. They include:

Families - Community leaders - Staff, volunteers and trustees – Donors - People with HIV - Other NGOs - Government

The involvement of people with HIV is especially vital to any work aiming to meet their needs. If people with HIV are involved throughout from the assessment to the decision-making process through to the implementation of the work, their ideas and experiences can contribute greatly. Involving people with HIV in your treatment work can also help to improve access to treatment and reduce stigma and discrimination.

  • How will the decision be made?


After the analysis of your assessment of needs and resources, the gaps in HIV-related treatment will be clear. In fact, there might be a long list of things to do to improve the quality and coverage of treatment for people with HIV. Clearly, one group can not meet all of those needs on its own.

When making your decision, it is important to set priorities that fit your organisation's mission and are realistic and sustainable. The key priorities should be the ones that - based on your assessment - you believe will make the biggest difference.

Some important questions to think about are:

  • What have you learned about the priority needs of people living with HIV/AIDS?

  • What are the main barriers to access to treatment?

  • What is already happening to improve access to treatment?

  • What still needs to be done to improve access to treatment?

  • What are your organisation's advantages and disadvantages in working on HIV-related treatment?

  • What work is realistic for your organisation - considering its technical skills, other resources, and aims and objectives?

  • Will what you are planning be sustainable - for example in terms of the cost and the policy environment?


[NB. Further information on this subject can be found in an Information Sheet - "Thinking creatively about what you can do - treatment in context" - at the end of Chapter 3.]

Activity: Reaching a decision
Aim: To decide what your organisation will and will not do in relation to HIV-related treatment work.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to identify the 4-6 types of HIV-related treatment needs that arose as priorities from their assessments.
3. Write the treatment needs down the left hand side of a piece of flipchart paper. Write criteria for prioritising them across the top. Examples might include relevance, feasibility and sustainability. Draw in the lines to form a grid.
4. Ask participants to give each treatment a score, according to how much it meets the criteria. If it meets the criteria very well, give it three ticks. If it meets it quite well, give it two. If it meets it poorly, give it one.
5. Ask participants to identify the 1-2 treatments with the highest scores.
6. Ask participants to decide how their organisation will provide that treatment to people with HIV in the community. Ask them to develop a sentence summarising what their organisation will do.
7. Discuss what can be concluded about the organisation's decision about what it will and will not do about HIV-related treatment work.

Facilitators' notes:
  • Ensure that participants discuss each treatment and criteria in-depth - as the prioritisation process is vital and should not be rushed.

  • Ensure that participants continually refer back to the results of their assessment - to ensure that their prioritisation reflects the real needs and resources of the community.


Example:

Type of treatment // Relevance to needs // Feasibility // Sustainability // Score

TB drugs // 3 ticks // 3 ticks // 2 ticks // Score = 8

Antiretroviral drugs // 2 ticks // 1 tick // 1 tick // Score = 4

3.3.C. Communicating your decision
When you have agreed what your organisation will do about HIV-related treatment, you need to communicate it to all concerned.

It is important to let people know:

  • What type of treatment your organisation will be providing.

  • When and how your organisation will be providing it.

  • Who can access it and on what basis (for example, for free or at a cost).


In particular your organisation will need to communicate on an on-going basis with:

  • The people who were involved in the assessment.

  • People who could access your services (such as people with HIV, families and carers).

  • Other organisations with which you might collaborate (such as the government, drug suppliers and other NGOs, CBOs and PLHA groups).


You should communicate with others even if you decide that your organisation will not be doing work on HIV-related treatment.

Activity: Communicating a decision
Aim: To decide to whom your organisation will communicate its decision about HIV-related treatment work.

Instructions:
1. Explain the aim of the activity.
2. Ask participants to brainstorm to whom they will communicate their decision about what to do about HIV-related treatment. Examples might include the government or other NGOs, CBOs and PLHA groups.
3. Ask participants to identify how they will communicate with the audiences they have identified. Examples might include through a leaflet or through an NGO network meeting.
4. Ask participants to draw a picture to show how they will communicate their decision and to whom.
5. Discuss what can be concluded about how and with whom the organisation should communicate its decision about work on HIV-related treatment.

Facilitators' notes:
  • Encourage participants to think of the simplest - as well as cheapest - way to communicate their decision to others.

  • Encourage participants to communicate their message to groups that they already have contact with and potential other partners for HIV-related treatment work.


Example:

[Shows newsletter, NGO network and meetings as three lines connecting the NGO to a range of audiences: donors, government, doctors, church groups, people with HIV, other NGOs.]

Information Sheet #1
Thinking creatively about what your group can do - treatment in context

When you are considering the results of your assessments, you also need to look at the range of options for treatment work which your group might get involved in. It is also important to remember that treatment with drugs must be supported by, and integrated with, other forms of treatment and care - such as nutrition, counselling, traditional remedies etc. [See Chapter 1.1.B]

The following table shows some of the options your group may want to choose from. These are grouped under the places where different types of treatment may take place:

Home
  • Universal precautions to prevent HIV transmission

  • Safer sex practices, including family planning

  • Personal & environmental hygiene practices

  • Emotional support for persons with HIV, carers and families

  • Nutrition and safety of food and water supplies

  • Using medicines & traditional remedies correctly and adhering to treatment regimes

  • Support for DOT treatment regimes

  • Sharing information about where to get more support


Community
  • Social support & counselling

  • Access to voluntary counselling and testing

  • Community information & involvement

  • Support groups

  • Accompanying people who need treatment

  • Nutritional counselling

  • Support for DOT treatment regimes

  • Food programmes

  • Providing condoms, bleach, clean syringes

  • Access to family planning services

  • Advocacy

  • Assistance to orphaned and vulnerable children

  • Financial support

  • Legal support

  • Management of drug supplies

  • Hospice

  • Bereavement & funeral support


Health Care Facilities
  • Voluntary counselling and testing

  • Access to safe blood, blood products

  • Clinical management of pain, malaise & fever

  • Clinical management of opportunistic infections

  • Clinical management of STIs

  • Preventive treatment & treatment for TB

  • Preventive treatment of PCP

  • Nutritional assessment & counselling

  • Antiretroviral therapy for preventing mother to child transmission

  • Antiretroviral therapy including HAART

  • Clinical & laboratory monitoring of progression of HIV

  • Access to breast milk substitutes


3.4. Want to know more?
Facilitators' Guide for Needs Assessments on Access to HIV/AIDS-Related Treatment - a resource to support the development of a practical toolkit for NGOs, CBOs and PLHA groups. International HIV/AIDS Alliance. 1998.
- assessment tools, questionnaires for assessing treatment needs of people with HIV

Positive, Engaged, Involved - PLHA Participation in Community-based Organisations - research summary. Horizons - Population Council and International HIV/AIDS Alliance. 1999.
-a report summarising the research results of different aspects in the involvement of people with HIV

Needs Assessment Reports (Zambia, India, Cote d'Ivoire): development of a toolkit on access to HIV-related treatment. International HIV/AIDS Alliance, November, 1999 - January 2000.
- reports of needs assessments on issues of HIV-related treatment access; results of these visits formed the basis for the development of the Access to Treatment Handbook

Key Elements in HIV/AIDS Care and Support. WHO/UNAIDS. December 2000
- a summary of care needs, principles and values of HIV-related care, key interventions for care and support, structural elements for service delivery and prioritisation of different elements of care

Management Support for Primary Health Care - a practical guide to management for health centres and local projects. Paul Johnstone and John Ranken. 1994.
- principles and practice of health care management at local level, includes understanding communities and individual needs, methods and examples of management

Source: Access to Treatment Handbook
This is an extract from Mobilising NGOs, CBOs and PLHA groups for improving access to HIV/AIDS-related treatment: a handbook of information, tools and other resources, developed by the International HIV/AIDS Alliance with support from the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS), published in this form in June 2002.

To view the whole publication follow this link.

To download this section, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size 517 Kbytes).