Handbook on Access to HIV/AIDS-Related Treatment : a Collection of Information, Tools and Resources for NGOs, CBOs and PLWHA Groups: Chapter 1: First questions to ask: 1.1 Care, support and treatment: 1.1.A Care and support

Handbook on Access to HIV/AIDS-Related Treatment : a Collection of Information, Tools and Resources for NGOs, CBOs and PLWHA Groups
(2003; 130 pages) [French]

Table des matières

Preface
Acknowledgements
Acronyms
Introduction: Read this first!
	1. What is this handbook?
	2. Why was this handbook developed?
	3. How was this handbook developed?
	4. Who is this handbook for?
	5. How can this handbook be used?
	6. What is in the chapters of this handbook?
	7. What materials are needed to use this handbook?
	8. Who developed this handbook?
	9. Further sources of information
	Example of workshop schedule
Chapter 1: First questions to ask
	1.1 Care, support and treatment
		1.1.A Care and support
		1.1.B Treatment
	1.2 Linking treatment and prevention
	1.3 Access to treatment
		1.3.A Availability of treatment
		1.3.B Accessibility of treatment
	Information Sheet 1: Barriers to access to treatment
	Information Sheet 2: Factors affecting access to treatment
	1.4 Further sources of information
Chapter 2: Foundations of treatment
	2.1 The basic elements of treatment work
		2.1.A Supportive relationships for treatment work
		2.1.B Knowledge, skills and attitudes for treatment work
		2.1.C An ethical approach to treatment work
		2.1.D Information for treatment work
	2.2 How different treatments vary
	2.3 Working with others to improve access to treatment
		2.3.A Partnerships to improve access to treatment
		2.3.B Advocacy to improve access to treatment
	Treatment Information Sheet
	Treatment Assessment Sheet
	2.4 Further sources of information
Chapter 3: Putting treatment into practice
	3.1 Resources for HIV/AIDS-related treatment work
	3.2 Drugs for HIV/AIDS-related treatment
		3.2.A Managing HIV/AIDS-related drugs
		3.2.B The essential medicines concept
		3.2.C Guidelines for treatment
		3.2.D Choosing the right drugs
		3.2.E Drug names
		3.2.F Using drugs effectively
		3.2.G Fact sheet - antiretrovirals
	3.3 Sourcing and looking after good-quality drugs
		3.3.A Drug quality
		3.3.B Sources of drugs
		3.3.C Storing drugs
		3.3.D Keeping records and ordering drugs
	3.4 Providing drugs to people living with HIV/AIDS
		3.4.A Paying for HIV/AIDS-related treatment
		3.4.B Drug information
		3.4.C Dispensing drugs
		3.4.D Managing transport for HIV/AIDS-related treatment
	3.5 Training and management for treatment work
	3.6 Further sources of information
Chapter 4: Assessing needs and resources, and deciding what to do
	4.1 The assessment process
	4.2 Assessment frameworks
		4.2.A Assessing needs and resources - people living with HIV/AIDS and the community
		4.2.B Assessing needs and resources - the local environment
		4.2.C Assessing needs and resources - your NGO/CBO/PLWHA group
	4.3 Deciding what to do
		4.3.A Analysing your findings
		4.3.B Reaching a decision
		4.3.C Communicating your decision
	Information Sheet 3: Thinking creatively about what your group can do - treatment in context
	4.4 Further sources of information
Chapter 5: Learning from and improving HIV/AIDS-related treatment work
	5.1 Monitoring and evaluating HIV/AIDS-related treatment work
		5.1.A Keeping records of your work
		5.1.B Monitoring your work
		5.1.C Evaluating your work
	5.2 Changing and improving HIV/AIDS-related treatment work
		5.2.A Making the most of new resources and linkages
		5.2.B Coping with changes
		5.2.C Sharing your experiences with others
		5.2.D Scaling up, scaling down or staying the same
	5.3 Further sources of information
	Organizations that contributed to the development of this handbook
Back cover

1.1.A Care and support

Care and support are based on an active concern for the well-being of others and ourselves. People directly affected by HIV/AIDS need care. People living with HIV/AIDS, their families and communities are also involved. They all need support to face the challenges of illness and meet the needs that arise. The aim of HIV/AIDS care and support is to improve the quality of life of people living with HIV/AIDS, their families and communities. Care and support are important because they boost efforts to prevent the further spread of HIV.

Comprehensive care, an important part of care and support, is about responding to the needs of a person living with HIV/AIDS in a holistic (or 'whole') way. It involves a variety of information, resources and services to address a range of needs - not just medical needs.

Comprehensive care

Comprehensive care includes the following important basics:

• diagnosis
• treatment
• referral and follow-up
• nursing care
• counselling
• support to meet psychological, spiritual, economic, social and legal needs.

Each person living with HIV/AIDS has different needs, depending on the stage of illness and the circumstances. For example, a person living with HIV/AIDS who is not ill will have different needs from a person living with HIV/AIDS who is very ill and confined to bed most of the time, and will require different care and support.

Comprehensive care for a person living with HIV/AIDS should happen within a continuum of care. This means responding to the full range of care and support needs in different places -such as hospital, clinic, community and home - over the course of the person's illness. Responding to these needs also requires a coordinated response from people with a variety of complementary skills - such as family members, counsellors, nurses, doctors, community health workers, people living with HIV/AIDS, pharmacists and volunteers. It is vital that all these people work together to ensure an efficient flow of information, resources and services between them, providing a continuum of good-quality care and support.

Case study - Continuum of care in Zambia

Mr Banda lives in a town in Zambia. He went to the hospital for an HIV test because he was losing weight and coughing. Due to his cough, the doctor also checked him for tuberculosis (TB). The results of both tests were positive. The doctor started Mr Banda on TB treatment while he was in hospital. But, when Mr Banda was coughing less, he was sent home and referred to the home-based care team of a local church. The team came to Mr Banda's house to support him in taking his drugs regularly, but he shouted at them not to come back. The team persuaded Mr Banda to see the Medical Officer who listened carefully and realized that Mr Banda was afraid that his neighbours would see the team visiting him, realize he had TB and reject him. So, the team helped Mr Banda to talk to a trustworthy relative who learned how to help Mr Banda take his drugs every day and go for check-ups at the hospital. Mr Banda's TB was controlled and he started to feel much happier.

Participatory group activity

Aim

To identify the elements involved in comprehensive care and support for people living with HIV/AIDS.

Instructions

1. Explain the aim of the activity.
2. Present participants with a definition of comprehensive care and support (see previous page).

3. Divide participants into small groups of four to six people.

4. Ask each group to brainstorm (based upon their own experiences) on the different elements involved in comprehensive care and support for people living with HIV/AIDS. Ask them to write them on a piece of flipchart paper.

5. Bring everybody back together and ask the groups to share their results. Encourage the participants to ask each other questions and to make comments.

6. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:

• Why is it important that care and support for people living with HIV/AIDS be comprehensive?
• Are any of the elements of care and support more important than the others? Why?

Facilitators' notes

• Encourage participants to think about the whole range of needs of people living with HIV/AIDS, rather than just their medical symptoms.
• Ensure that participants include the everyday elements of care and support for people who are healthy and living with HIV/AIDS, as well as for those who are ill. Examples include nutrition and a loving environment.

Example

At a skills-building workshop, NGO/CBO participants shared their experiences about providing comprehensive care and support for people living with HIV/AIDS. They decided that the key elements included:

• personal and family hygiene	• counselling
• spiritual support	• nursing care
• environmental hygiene	• clothing
• education on diet	• blankets
• food	• relief of symptoms
• income-generating activities	• treatment
• employment	• medicines
• sharing experiences	• school needs
• transport	• singing.

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that effective care and support should involve responding to a variety of different elements, including physical, spiritual, psychosocial and material support.

Reference: Adapted from a workshop on access to HIV-related treatment, Catholic Dioceses of Ndola and the International HIV/AIDS Alliance, Zambia, April 2001.