Report on Skill building workshop on CAA in Changmai

[Guest guest]

Dear All,

The skills building workshop on programs for Children affected by AIDS was

held on 19th Dec,2001 during the 5th International Home & Community Care

Conference at Changmai, Thailand.

Report on the Skills building workshop on Care for Children affected by AIDS by communities

Preparatory meeting:

A meeting in preparation for the skill building workshop was facilitated

by Dr Bitra on 18th December in the lobby of Changmai Orchid hotel. 5 CAA

project representatives from Delhi, one CAA representative from Cambodia

& FHI representatives from Zambia & Cambodia were present at the

meeting. The format for conducted the skills building workshop was discussed.

The participants decided that the it would be best to list seven main challenges

facing CAA programs in India & Cambodia and use them for group work.

The presentations would be kept to the bare minimum, but time would be given

to two presentations from Cambodia. The seven issues were identified and

the program details were finalized. Coffee, tea & cold drinks were served

to the participants.

Workshop details:

Date: 19/12/2001

Time: 1.30 pm – 5.00 pm

Venue: Room no: 2/1, Changmai Orchid hotel

Sponsored by: FHI/Asia

Facilitator: Dr Bitra (Salaam Baalak Trust/India)

Co-facilitator: Mr Daphneton Siame (International HIV/AIDS Alliance/Zambia)

Rappateurs: Ms Napatorn & Ms Priti Patkar

Total number of registered participants: 71

(1) Welcome & Introductions:Bitra welcomed all the participants to the skills-building workshop. He later introduced the co-facilitator for the session.

(2) Workshop overview & Objectives:

Daphneton gave an overview

of the workshop. In addition, he also stated the objective of the workshop.

The broad objective of the workshop was to illustrate key program components

& strategies that are required to set up support system at the community

in connection to a larger system for caring of children affected by HIV/AIDS.

Daphneton also clarified that the definition of Children Affected by HIV/AIDS

(CAA) for the present skills building workshop includes children of sex workers,

street children, infected & affected children and AIDS orphans

(3) Outline of the group work:

Bitra outlined the seven issues

to be discussed in different groups. He gave a brief summary of the preparatory

meeting and the reason for choosing the issues. He stated that all the participants

would be broken into 7 different groups through drawing of chits of paper

and each group would be handed one issue for discussion. The participants

were asked to locate fellow members of the group with the same name of a

colour and were asked to sit in small circles.

The seven issues for the groups to discuss included –

GROUP NO ISSUE TO BE DISCUSSED GROUP COLOUR

1 Psychosocial support for CAA PINK

2 Caring for caregivers of CAA RED

3 Stigma and discrimination against CAA BLUE

4 Life skills for CAA BLACK

5 Repatriation and Reintegration of CAA YELLOW & WHITE

6 Resource mobilization for communities to deal with CAA ORANGE

7 Criminal networks and legal issues deal with CAAGREEN

All the groups were asked to brainstorm on each issue under the following heads –

(a) What are the underlying issues or situations?

( How can the underlying issues be addressed?

© Who are the key players who can be of help?

All the groups were provided with chart papers and were asked to choose a

rapporteur for the group. Forty-five minutes were allocated for the group

work.

(4) Reporting back to the larger group:

After the completion of discussion and group work, the participants were

asked to name one important thing that they learned during the group work.

Some of the responses included –

‘I have realized that inspite of the language barrier, we could communicate with each other without too much difficulty’

‘ I realized during the group work that there is a need for providing care to the caregivers’

‘ The problems with Children affected by AIDS are similar despite variation in terms of geography, culture & traditions’

‘The participants from various countries felt a common bond unifying them

and felt that the most important need of the hour was to care for the next

generation’

After the tea & snacks break, each of the groups were provided 5 minutes

for presentation after which there was a discussion on the issue in the larger

group.

Group 1: Stigma and discrimination against CAA

Underlying Issues How to address the issueWho are the key players

CAA were excluded out of children groups· Provide knowledge on HIV/AIDS to the community and caretakers Social worker· Health workers·

Home-based care worker· NGO and government CAA were excluded out of school· Provide HIV/AIDS awareness to teachers and school program

..· Motivate teachers and students to be compassionatedCollaboration between the Ministry of Health and Ministry of Education and religious institutionLoss of business & source of income· Micro credit program

· Vocational training

· Marketing

· Raising awareness on HIV/AIDS to the community · NGO health worker

· Church

· Government

· Ministry of HealthAbandoned by relatives and community· Raising awareness in community & relatives

· Orphanage/ shelter homesAs the abovePagodaAnd other department

Points of Discussion:

1. Within schools, teachers and principles need to be sensitized.

2. Perceived self stigma among infected/affected children need to be addressed.

3. The role of the social workers is also important as they are key players

to speak to other people in the community and help in creating awareness

4. Sensitization & Advocacy is carried out at different levels by different key players

5. Community needs to be identified as key player.

6. What about children themselves as key player (peers)?

7. Information and knowledge needs to be provided at different levels for prevention as well as addressing their own stigma

Group 2. Psychosocial support for CAA

SituationUnderlying IssuesHow can it be addressedKey players· Vulnerable (street children & children of sex workers)

· Affected (Parents are living)

· Crisis (parents have died)

· Infected

· Grandparents as caregivers· Insecurity

· Fear

· Grief

· Depression

· Self discrimination

· Education

· Social Interaction· Support from extended family

· Adoption or foster care

· Refer to other service providers (orphanage)

· Skills training

· Group support

· Counseling for both parents and children

· Recreation· Older siblings

· Parents

· Relatives

· Neighbors

· Community leaders

· Religious leaders

· School teachers

· Counselors

· Outreach workers

Points of discussion:

How do we reveal a test result to the child? How do we break the news of parents being infected and parents die?

There was discussion on this issue but the consensus was that

· Child needs to know and the best people to inform the child are the

parents themselves. It is been seen that caregivers and especially parents

think that the child need not know but it is important to understand that

children are intelligent and will find out from other sources. Parents should

be encouraged to talk to their children and not leave it to the last minute.

· Specialist in child counseling could be involved in the process and

the process of disclosure could be slow and gradual. There is a need at the

community level to create awareness that children understand therefore tell

the children. Hiding HIV test status from the children will make them feel

more traumatized and therefore the damage would be even more.

· Kenya example-Children don’t undergo volunteer testing unless they are

sexually active or married so there is no question of revealing their own

or parent’s HIV test status.

· In various cultural contexts like India, people don’t like to talk about

death. The participants stated that children should be prepared about the

parent’s illness and their death.

· Lessons from Uganda have shown how memory books could be used to record

happy moments in the parent’s lives for their children in the future.

What would happen if the child came to know that their parents have got HIV through an immoral act?

The consensus was that it was important that the child is told about the

virus and not how the parents got the infection. It is also important to

help the child understand and cope with the situation. Counseling of parents

and family members how to break the news to the child need to be encouraged.

Group 3. Caring for caregivers affected by AIDS

Underlying IssuesHow can it be addressedKey players· Poverty (child employment, orphans)

· Education

· Social environment: drug addiction, sex worker, rejection

· Illness/Medical care

· Early marriage

· Lack of guidance

· Lack of shelter

· Nutrition

· Effects on the caregivers

A: Overwhelmed by the issue, the stress & psychological problems

B: the lack information if they work in isolation

C: lack of resources, lack of training

D: Strained relationship with the children

E: Stigmatization

F: Risk of infections· Advocacy

· Improve education and training to the care-givers

· Resource mobilization, lobby and income generating activity

· Provide psychosocial support

· Legislation / policy improvements (eg. Early marriage)

· Improve access to healthcare

· Provide daycare center

· Improve the agriculture· Care-givers (Grandparents, Parents, Widows/Widowers,

Relatives and extended family, Elder or younger siblings, Social workers,

parents, Health workers, Volunteers, Teachers)

· PLWA

· Religious organization, NGOs, UN agencies

· Government to take the lead

· Healthcare workers & health care centers

· Institutions

Points of discussion:

There was a discussion on the need for relief for caregivers. Some practical methods of providing respite include –

(a) Buying rations/grocery for the household

( Being at the bedside for sometime so that the care giver can have some time to sleep & relief.

© Paying for their bills.

(d) Chatting with the caregiver in person to allow ventilation of feeling & emotions.

Stress management program & training of caregivers to help in coping with the situation.

Group 4. Life Skills for CAA

Underlying Issues/situationsHow can it be addressedKey players· Care-giving (children as caregivers)

· Access to education

· Dealing with empowerment-economic, social, psychological, political

· Decision making-sexual life/drug

· Vocational skill for livelihood

· Dealing with emotional effect of care-giving/and all other issues (grief and loss)

· Social life – friends, play

· Health

· Access to good nutrition

· Dealing with cultural context (Taboos), maintaining cultural, religious, spiritual life

· Self esteem, Self actualization, and Mental Health· Education and training

· Daycare center

· Lobby the government, NGOs role, church group, community and other programs

· Children involvement at every stage as planners/managers etc

..· Get understanding of knowledge and attitudes

· Education through dramas, games, plays, story telling-assertiveness

· Technical training, train as health educator

· Harm reduction and counseling

· Group therapy

· Monitor and get access to referral system, health training in school

and health monitoring by students volunteers and health camp

· Nutrition skills, cooking, growing food

· Support groups (peers activities-painting, music, physical activities, sports clubs, group activities, teachers· Children

· Teachers

· Remaining family members

· Friends/peers

· Health personnel

· Community (leaders)

· NGOs

· Government – local, state, national

· Religious leaders

· International community

· Donor agencies

Points of discussion:

What is life skill education?

Skills needed for people/children to handle/cope with every situation in

life. Should we insist for formal education or should be explore incorporating

life skills in non-formal education program also.

How can we conduct sex education, as it is a taboo in many countries?

Sex education can be termed family life education or value education for

acceptance. One needs to be careful about how it is presented and how it

is packaged and what are the basic messages.

Who should be teaching life skill education?

We don’t have to rely on professional all the times – different trainers

and different organizations can accomplish the same task.

Group 5. Resource Mobilization for Communities to deal with CAA

IssuesHow can it be addressedKey players· Home based care:

Stigmatised healthcare setting/ workers, lack of acceptance, lack of skill,

obstacles, traffic jam, difficult in accessing, needs of children & women

ignored most often· Structure/system within the community

· Strengthen and empower PLHA within community

· Community Education and awareness (media, peers health, representation

of common group/committee, fund generator, fund raising)· Training of volunteers

· Volunteers should be PLWA/Family extended

· Develops power within PLWA-define their own need objectives and roles· Education:

Facility for children to study at home (non formal education)Study groups, NSS, other students, Peer support, Big Brothers/Sisters, teacher-empower them· Home visits:

Stigma attached during disclosureEducate healthcare workers· Health:

Accessibility/ Non affordability, orphan care and fear· Rotary club/Health camps

· Community health center

· Referral system· Collaboration, integration, linkages· Holistic approach

· Availability in community

· Who takes initiative

· No competition

· Do not duplicate

· Better coordination

· Build networks

· Open mindedness · Nutrition & Poverty· Mother education on nutrition

· Teaching family to grow their own food

· Participation of children themselves

Points of discussion:

(a) We need to contact other and explore the services that exist to avoid replication.

( Resources doesn’t mean only financial. It could be services, time and personnel.

© We need to compliment each other.

(d) There is a need to map resources within the community, Need to do community assessment.

(e) Need for capacity building of family.

(f) Resource mobilization with an emphasis on prevention more than curative.

Group 6. Repatriation and Reintegration of CAA

IssuesAddressKey Players· Abandoned children· Identify an extended family· Social worker and community· No family (orphan)· Adoptions (Processes orphanages)· Social worker, volunteers institution, NGOs· Street children· Temporary shelter· NGOs/Gos, social workers· Abuse children: sexually, physically, and psychologically· Temporary shelter

· Counseling session

· Peer support· NGOs/Gos

· Psychologists

· Social workers

· Medical personnel

· Peers· Dysfunctional family· Responsible parenthood

· Initial assistance

· Case management· NGO/Gos

· Social workers· Temporary/transitional family problems

· Dead, sickness

· Parents troubles· Temporary shelter

· Extended family support· Social workers

· Community workers

· Health peers

· 2nd/3rd degree relatives· Disintegrated family· Extended family

· Community support· Social workers

· Community workers

· Health peers

· 2nd/3rd degree relatives· Child Labor· Employers must be given information against child labor

· Awareness· Government

· Legal issue· Sick children (infected)· Hospitalization

· Follow up

· Information to mother

· Nutrition

· Counseling

· Education· Parents

· Teachers

· Peers

· Health workers

· Social workers

· Religious organizations· Trafficking of children· Counseling

· Shelter

· Education

· Vocational training

· Networking· Government

· Police

· Social workers

· Community workers

Points of discussion:

1. Repatriation is a difficult process and a very challenging one.

2. There are some situations where repatriation will not help and should be avoided.

3. One needs to understand the family situation before repatriating the child.

Group 7. Criminal networks and legal issues deal with CAA

IssuesAddressKey Players· Child prostitution/Pornography

· Child labor - domestic, industries, Errand boys/girls

· Child soldiers

· Child sacrifice

· Domestic sexual abuse/ physical abuse

· Children involved in drug trafficking

· Illegal adoption

· Inheritance rights

· Child headed families are vulnerable to being inducted into criminal activity· Policy guidelines by-state that considers children.

· Laws protecting the child (children’s rights to education, security, etc)

· Law enforcement (has to be prompt)

· Study and sensitise children and the community and law enforcement machinery

· Advocacy for support networks-help line, children welfare society and active juvenile courts1. Children

2. Government – Ministry of Labor, Ministry of Public Health, Judiciary, Police, and Social Welfare

3. Immediate family, community (neighborhood) and the general society

4. NGOs

5. Schools/educational systems

6. Religions leaders

7. International Communities like UNICEF, Save the Children, USAID, FHI, UNESCO, World Vision etc.

8. Local Leader

Points of discussion:

Policies usually present but there is poor implementation by legal authorities, no political will, corruption.

(5) Presentations by CAA projects of Cambodia: After the group work, there were presentations by 2 CAA projects of Cambodia.

(a) How to create Kien Kes volunteer network by Venerable Khut Ung

( Social support to Children affected by AIDS and families by Sok Sophal

The presentations brought into focus the human face of the issue of Children

Affected by AIDS and the difficulties faced by them.

(6) Concluding remarks:

Bitra summarized the various issues discussed

at the skill- building workshop. He thanked all the participants and hoped

that it was useful. The participants were asked to collect all handouts (Report

on CAA projects in India, leaflets on various CAA projects in India &

Cambodia) along with limited copies of the facilitator's guide " Teaching life skills

& reproductive health to vulnerable children".

Dr Bitra

Salaam Baalak Trust

New Delhi, India