Best practices

These program activities are our project best practices because they have been successful in helping us achieve our objectives and goals. 
I. 'Chinnara Chilipili' Life Skill Education Programs for Children Affected by AIDS
Children living with and affected by HIV or AIDS come under the larger gamut of orphan and vulnerable children and often lack access to basic services and care. In India, these children are living a precarious life in large numbers in high HIV prevalence states and districts and suffer severe stigma and violations of rights in the public and private sphere. There are instances where the children taught to accept discrimination, neglect, violence and abuse.

Among the children affected by AIDS, adolescents constitute a large proportion (50- 70%). The adolescents are particularly vulnerable as they are expected to perform adult roles such as care giving, economic productivity, and overall responsibility of household in the absence of guidance or a safety net. This is further compounded by adolescent and HIV related health issues. Dropping out of school in order to care for younger siblings, sick parents or grandparents particularly by adolescent girls is a common occurrence. 

Caregivers, parents, adults, including educational institutions do not know how to handle and respond appropriately to adolescents, their emotional, behavioral changes, particularly in the context of HIV/AIDS. Several groups have reported poor adherence to ART among the adolescents.  The adolescents have inadequate knowledge of Child Rights & Services, Poor Life Skills development, few opportunities for Leadership Development and Limited Job Oriented (Vocational) Skills training. There is a large, urgent and growing need to work with adolescents living with or affected by HIV/AIDS.

Karnataka Health Promotion Trust partnered with INSA India, undertook life skills training for adolescent children affected by AIDS with the primary aim to build resilience to HIV and other risks and protect the children as part of the larger USAID – HIV/AIDS Orphan Vulnerable Children Social Protection Project.

Guitar pictures made by children in Chinnara Chilipili Workshops
The life skill program is a step wise process, the first step being a 2 day introductory training program on the 10 life-skills listed by the WHO. This step is followed by leadership development training and regular children’s support group meetings.

The programs are participatory in approach and continuous feedback is given to the facilitator by the children. The facilitators are local District Level Networks of Positive people or NGO staff working with children affected by AIDS who are mentored by the Karnataka Health Promotion Trust(KHPT)and INSA India staff.  2 to 4 trainers facilitated the two day sessions for a group of 25 – 35 children affected by AIDS aged 10-18 years over a period of 2 days. Some sessions were residential while others were not. Trainings were conducted for children in the community as well as children from institutions having residential care facilities for children affected by AIDS care givers were allowed to be present during the sessions for the children.

The 2 day introductory training program consisted of multiple games through which the children were introduced to life skills and changes that occur during adolescence. The first day of the introductory training program is concluded with an introduction to the problem tree exercise. The problem tree exercise is the central to the program activity.  It creates avenues for children to depict their varied problems using a participatory problem tree method. This method helps the children to list and express their problems as a group and also identify possible solutions at their level. The facilitators take cues from the problem tree for planning the next set of activities for the children.

A problem tree made by children in the Chinnara Chilipili Workshop
About 133 trainers were trained in 5 TOT programs on the introductory training on life-skills. About 2592 adolescents living with or affected by HIV were trained in 83 introductory Life-skill training camps across the states of Maharashtra, Karnataka, Andhra Pradesh and Tamil Nadu from April 2015 to February 2016. The participatory methods – games and summarization of life skills were appreciated by the adolescents, caregivers and facilitators. The problem tree exercise was emotionally intense for some of the children. Some adolescents broke down crying while presenting while there were some others who cried while other children presented their issues.

The children affected by AIDS shared several problems like poverty, loss of childhood, missing their parents, need to earn for the younger siblings, difficulty with education, health problems, family fights, alcohol and tobacco use by parents, physical abuse, feeling lonely. The problem tree gave an opportunity for children to vent their feelings. The residential programs helped the children bring out their problems better. Children from residential institutions had some trouble opening up regarding their problems. They reported very few or no problems in their immediate surrounding but related instances from the past.

All the children who attended training felt the need to come back for further meetings. This was seconded by the caregivers too. Hence, the project is forming Child Support Groups which meet monthly and discuss relevant issues and life skills on a continuous basic.

Many local donors and Corporate Social Responsibility(CSR) partners were forthcoming to support for the cost of conducting the Life skill programs.

The 2 day life skills introductory training program is a low cost, sustainable activity to engage with adolescents living with or affected by HIV in community as well as institutional settings.

The Problem Tree exercise serves as a good mechanism for adolescents living with and affected by HIV to identify and express some of their problems individually and collectively. It helps build camaraderie and empathy among the adolescents to the issues they face on a day to day basis. This serves as a therapeutic venting mechanism for the adolescents. The facilitators and caregivers are sensitized to the issues faced by each group of adolescents whether living with or affected by HIV. Systematic documentation of the problem tree exercise would give care givers, program managers, and other stakeholder’s areas for psycho-social intervention and capacity building.

The long term use and potential of the life skills program and problem tree exercise needs to be explored further. The emergent linkages for health, education, child protection and social welfare, needs to be set up on a systematic basis.

A Case Study
10 life skills: making a difference in the lives of HIV positive children

II. Child Protection Policy Workshops

USAID Orphans and Vulnerable Children project facilitates Child Protection Policy development workshops for Positive Networks, hospitals, Government and non-government institutions caring for children. Through these workshops, the management and staff of these organisations are oriented to the need for Child Protection Policy, child abuse, child rights and how to protect the children by having systems, policies and protocols. So far the project has helped more than 100 institutions to reflect on the need for Child Protection Policies and all of these institutions have agreed to have a Child Protection Policy and majority of them have already developed the policy and behavior protocols for working with children.

-Karnataka Network of People Living with HIV/AIDS(KNP+) Adopts Child Protection Policy Karnataka Network of Positive People with HIV/AIDS, Bengaluru passed a resolution to adopt Child Protection Policy and Gender Policy for KNP+ and its affiliated District Level Network for PLHIV across Karnataka during its 18th Annual General Meeting held at ISHA on July 20th, 2015. The process was facilitated by INSA-India. A state level child protection committee formed to address the issues at state level. Similarly, Child Protection Policy will be formed at District Level. With this 26 District Level Network(DLN)s across Karnataka will adopt Child Protection Policy.

-Child Protection Policy Workshop in Dharwad, KarnatakaUSAID OVC Karnataka team has conducted a two day workshop on Child Protection Policy from July 28-29, 2015 at KHPT Office, Dharwad. Workshop was attended by 14 NGO representatives and by the end of the workshop all 14 institutions agreed to develop Child Protection Policy for their institutes.

Feedback from participant:
“Thank you for the great two day workshop in Dharwad.  It was very informative very well presented plus enjoyable. I have learned so much from your training regarding child protection policy.  I have started to use some of the strategies and tools in my Children Home.  Thanks for the wonderful workshop” 
-Sushanti Children Home, Unkal, Hubli a Project of Jesudas Wilson Charitable Trust.

-Child Protection Policy Workshops, Mumbai, Maharashtra-
During January 12-14, three Child Protection Policy Workshops were held in Mumbai. Ms. Edwina from INSA India took lead and facilitated sessions on CPP. MH Team and Mr. Bharat Shetty, Additional Project Director of OVC Social Protection Project, Ms Deepshikha Capacity Building Manager and Advocacy Officer Mrs. Leena Rane extended their support to Edwina to facilitate sessions in all three days. Zonal co-ordinators also participated in these workshops and they have documented proceedings of this workshop.

On January 12 the workshop was held for Vihaan project staff from five CHC’s of Mumbai. Which included; Sai-Vihaan Mumbai, Humsaya-Vihaan Mumbai, NMP+ Vihaan Mumbai,  Udhaan-Vihaan Mumbai,  Udhaan 2-Vihaan Mumbai. 51 members participated; (43 female and 8 male) and understood the value of having Child Protection Policies for their institutions and agreed to go ahead with drafting Child Protection Policy for their Organisations. KHPT will also be conducting child protection policy with the board members of these CSCs.

On January 13, the workshop was conducted for MDACS Project Parivarthan redressal volunteers. Total 25 staff (20 females and 5 males) who is working as volunteers in five ART centres viz: KEM Hospitals ART Centre, JJ Hospitals ART Centre, Shatabdi Hospital, Godrej Memorial Hospital ART Centre and M.T Agrawal ART centre participated in the workshop.

On January 14, the workshop was conducted for the staff of Centre of Excellence for Paediatric HIV, SION Hospital Mumbai. 19 staff (14 female and 5 male) took part in the workshop. The department head took personal interest and formed a policy drafting committee and agreed to come out with a policy in a month’s time.

With this, the Mumbai OVC program team has managed to strike the right chords with the service providers for CABA in Mumbai. MDACS taking active role in organizing and being part of these workshops was a value addition.

III. Champion in me

Champion in Me- 2015 concluding event was held at Snehadaan Bangalore on November 28 & 29. This program was organised by Sneha Care Home in partnership with Karnataka Health Promotion Trust, MAC AIDS, USAID Orphans &Vulnerable Children Project and VIHAAN project funded by KHPT under the Global Fund through the India HIV/AIDS Alliance.  About 500 Children Living With HIV and 12 institutions participated in the program. Apart from children, 150 care takers and volunteers also took part in the event. 

“Champion in Me has been happening for the past 7 years and every year the level of competition and quality of performance goes higher” – An observer of the event

This central level program was the result of several local and zonal programs conducted during the month of October and November across the state. Only selected children from the zones and institutions participated in the concluding program. Their talents in both cultural and sports events was mind blowing.

It is hard to capture the spirit of this program in words, yet I am making an effort through this brief note. I encourage each one of you to participate in the next program and get the first-hand experience, which I am sure you will cherish.

On 28th, the program was inaugurated by Mr. Jacob Varghese, Film Director, Dr. Reynold and Dr. Manish from KHPT, Fr. Baby Illikkal (President SCT, Fr. William (Superior Snehadaan Community), Fr. Vince (Director, Sneha Care Home) and Suhasini, Prime Minister of Child Parliament of Sneha Care Home. Children participated in Singing and dance both group and solo, followed by drawing and Rangoli. Evening there was mono acting, skit and magic show.

Day 2 i.e. 29th the program started with a marathon which was attended by several volunteers and local people from around Bangalore who walked with the children in solidarity. Post breakfast, the children marched to the ground of SPT Sports Academy. Bangalore School Sports Academy took active role in organising and managing this event. Kannada Film Star Ms.Ragini Dwivedi Ragini Dwivedi, Sports star Reeth Abraham and Elvis Joseph, Founder of Bangalore School Sports Foundation(BSSF) inaugurated the event and encouraged the children to take active part.

Children participated in athletics, relay, football, throw ball, sack race, lemon and spoon race and won prizes. It was good to note that the community children were at par with the institutional children despite the lack of time to come together and practice. Vihaan Project and OVC Social Protection Project teams have played key role in mentoring the community children to win these competitions.

Key outcomes are:
  • The feeling of solidarity it created among the children and the organisations participating
  • Highlighted the talents among the children and the positivism and energy they bring out
  • Build the confidence of children who participated and created a challenge in them to do better in the coming programs
  • Won the good will and support of many outside community institutions and individuals who donated, participated and encouraged the children. 50% of the cost of events at local and zonal levels were sponsored by local donors.
  • Created cooperation and a sharing mentality among all the participating agencies, which will go a long way in networking with each other for providing better services
  • We have got the videos and photos from these activities which can be used for advocating the rights as well as creating awareness among others.
  • Our focus was fully on what children can do, what they are capable of and encouraging it rather than thinking about their HIV status.
Thanks to the efforts of funder, collaborating agencies, volunteers and staff of all organisations, we believe these kind of activities will go a long way in instilling the confidence of children and also memories they can cherish throughout their life.

IV. Continuous Medical Education Workshop on Pediatric HIV or AIDS

Pediatricians and Doctors play a critical role in providing health care services to Children Infected with HIV. However, lack of understanding on WHO protocol and treatment practices may adversely affect the children they are serving.

As the first step, the OVC Social Protection Project identified and mapped Pediatricians and Doctors from all the implementation districts who were providing services to such children. Now training of doctors- pediatricians, general practitioners and medical college departments is being undertaken by the project based on the need for it as expressed by multiple stakeholders including the District Level Network(DLN)s, District AIDS Prevention Control Unit (DAPCU)s, NGOs, ART Staff, doctors and others and to ensure sustainability of quality medical care, ensure continuum of training and services and to use the children's voices as part of the training.

The objectives of the training are to be able to screen all children of signs and symptoms of HIV and refer for testing, to manage opportunistic infections in children living with HIV at the medical college and establishing a referral link to the ART center, to identify and manage side effects of ART in children living with HIV at the level of private clinic and establishing a referral chain to higher centers and to provide growth monitoring and immunization services for these children.

A one day module on Paediatric HIV/AIDS was developed and jointly organised with local Medical Colleges in several districts. Total 9 such workshops were held in Trichy, Bagalkot, Bijapur, Belgaum and Sangli. About 445 members including Pediatricians, Doctors and staff of Medical Colleges participated and benefited from the programs.
The workshop discussed issues of presumptive diagnosis in children and referring for HIV testing and follows up, OI Management including prophylaxis and ART regimens, eligibility and managing side-effects in children.  The opportunity was used for showcasing and sharing learnings from institution caring for CLHIV and issues faced by CLHIV. Children from local institutions shared their personal experiences and challenges in accessing medical care, which touched the hearts of the participants.
  • Doctors are willing to give talks on health related issues during child support group meeting and Chinara Chiliphili (Life skill) Programs.  
  • Doctors have also offered free health check-up’s during the Child Support Group meeting. 
  • BLDE Medical College is willing to give financial support for institutional care home INR. 50000.00. (Fifty Thousand Rupees) 
  • Most positive  response to the children's voices.
  • CME points and Medical Council Accreditation helps mobilize practitioners. 
  • Resources mobilized by the medical colleges and doctors for the children.  
  • The District Level Network(DLN)s and institutions got linked to the medical college. 
  • Linkage to an HIV expert provided.

V. Care Giver's Training

Children Infected and Affected By HIV/AIDS  live in families as well as within institutions. Caregivers at family as well as within institutions need to be oriented and
trained on issues specific to providing care to these children.

OVC Social Protection Project first conducted focus group discussions with caregivers to understand their profile and come out with appropriate contents and methods for the training.Separate trainings were held for caregivers within family and for those at institutions.

629 caregivers are trained in 30 batches across four states. Institutional caregivers were given three day program while family caregivers were given one day orientation programs. They will be coming back for more in-depth trainings. Focus was on understanding the development stages and needs of children, caring for sick child, providing emotional support, developing rapport with a child and knowing when to refer outside for support.

VI. Child Counseling Training Programmes

Children infected and affected by HIV/AIDS experience trauma and loss which affect their mental well-being and leaves long term impact on their lives. Due to lack of understanding and child counselling skills, institutions and families struggle to provide appropriate support.

OVC Social Protection Project organised trainings for Counsellors from institutions caring for CABA and District Level Positive Networks on Child Counselling. Each state explored the local resource persons and modules and organised programs.

In Karnataka the program was organised in collaboration with Community Child & Adolescent Mental Health Services Project of Dept. of Child & Adolescent Psychiatry, NIMHANS and Vihaan project. Out of total 9 days program, 6 days have completed and 25 counsellors (Male 8, Female 17) participated in the program.

Participants were able to gain insights into the child development aspects, counselling skills and specific psycho-social issues related to CABA and counselling techniques to deal with illness and disclosure, stigma and discrimination, managing difficult emotions and behaviours. Techniques using art, stories, dolls and puppets were also introduced for counselling children.

In Tamil Nadu, 3 day training program was organized by Snehagram in collaboration with M.S.Chellamuthu Trust and Research Foundation, Madurai and Anugraha Training Institute – Dindigul. The base modules for training were the NACO –UNICEF Child Counselors Introductory and Refresher Modules.

Program was attended by 18 staff (3 Male, 15 Female) from five organisations which are; St. Anne’s Home, Madurai, DTMC SFS Health Centre, Salem, Holy Family Hansenorium, Trichy, RTU, Reaching the Unreached Theni, NMCT, Coimbatore and Jeevan Jyothi Hospice, Theni.

The program focused on understanding child counselling techniques, building resilience using case studies, quotes and participative methodologies. Participants have gone back with the improved knowledge and skills to focus on the emotional aspects of Children and will be provided further ongoing support through mentoring programs.

VII. Child Parliament
Child Parliament-a best practice to ensure child rights and child protection through child empowerment
Child Parliament Facilitation Workshop being conducted by INSA-India in St. Catherine's Home, Mumbai
Child Parliament is a unique concept and program that aims to provide sustainable and meaningful opportunities for children to participate in local, national and democratic processes for the larger purpose of attaining child development, survival and protection. It is a children’s movement with deliberations, interventions and actions at Anganwadi/crèche/school/neighborhood/institution involving a group of 25-30 children. All the children are in the age group of (6-18) years and are equal members of this parliament irrespective of their case, community, race, social and economic or educational status. If adopted as an internal program in schools, child care homes and institutions, it helps to develop leadership, ownership and skills of governance among children and ensures an environment that is conducive to child rights and child protection.

Election Process Underway in Child Parliament 
Under this system, children elect ministers from among themselves to different ministries following the democratic system. There are elected ministers of education, environment, health, law, sports besides others and a Prime Minister, each looking after a specific area assigned to them. These elect ministers are involved in the governance of the institution with the help of shadow ministers and helpers. The President is often a representative or head of the institution. For instance, the Child Parliament at Snehagram(the residential care, support, treatment and vocational training institution for adolescent children infected and affected by HIV/AIDS situated at Krishnagiri district, Tamil Nadu) has the institution's Director as the President in their Child Parliament.

Children take leadership in identifying their issues and recommending preferred solutions
The Environment Minister in a child care institution looks into cleanliness, plantations around the campus, waste management and monitoring defaulters; the Law Minister looks into behavior of children, building a peaceful atmosphere and monitoring incidence of violence or use of profanity; the Health Minister monitors ART adherence, nutrition, personalized care during sickness, water intake and overall well -being and so on.

A Prime Minister of a Child Parliament in an orphanage leads other children by example

The Child Parliament is being implemented among different segments of children by INSA-India while it is also being implemented in child care homes for children infected and affected by HIV/AIDS in the project states under the USAID funded HIV/AIDS Orphans and Vulnerable Children Social Protection Project. 

Child Parliament is being employed as a mechanism to bring empowerment of the children born with HIV or who are left orphaned by parents who died of the disease.

With Child Parliament, the children are being mentored to build a role-model system for peers, become leaders and get involved in the governance of the institution but most of all, it is making it possible for the children infected and affected by HIV or AIDS to be included in the identification of their issues with respect to their health and disease, education, interests and aspirations, stigma and discrimination, and abuse. The Child Parliament system provides the ideal platform for them to voice their concerns to the management of the institution, negotiate for improvement and participate in implementation of change and improving systems.  

For the management of these institutions , child parliament makes it possible for identification of the real issues of the community through the community and in their own words, giving direction to program activities and priorities.

In Snehagram, a residential facility for orphans and vulnerable children with HIV in Tamil Nadu, Child Parliament has given voices to children, empowered them with knowledge of their rights, aspirations to reach their goals, better health and nutrition, leadership skills besides making them an important stakeholder in the day-to-day functioning of the institution.

Child parliament have been formed in institutions that include Palawi in Pandarpur in Solapur district,Snehalaya in Ahmednagar, Karunalay in Kolhapur,Sneha Rides at Nuzvid in Krishna district, Prem Dhan in Mumbai, Dilkush in Mumbai, Dilasa Bhavan in Miraj in Sangli all in Maharashtra, Mahesh Foundation in Belgaum, Nava Sanidhya in Bijapur in Karnataka, St. Ann's Centre in Madurai and Snehagram in Krishnagiri districts in Tamil Nadu.

This is what children in institutions have to say about how they feel about Child Parliaments

‘The biggest advantage of having a Child Parliament is children can solve their own problems rather than take it to teachers, staff and head of the institutions that care for children living with HIV or AIDS." -Shubha, 15 and Prime Minister in Child Parliament at Snehagram

We solve our problems, take our own decisions and it is good to take our own decisions and improve our lives in Snehagram and that is the best thing that Child Parliament has brought.’ -Siddhuramu, 16 and Health Minister in Child Parliament at Snehagram

VIII. White Card Updation
To identify and profile girls and boys living with HIV early, line listing of children affected by AIDS and their families was undertaken by the OVC Social Protection Project. Across 17 project districts, data was collected using the existing sources such as the ART and ICTC centres , institutions providing care for these children and the VIHAAN project data etc but a gap in data was found where the first two sources were not comprehensive. A need for a more robust methodology to gain comprehensive data was felt and  it was decided to collect data from the white cards maintained by ART centres which would give the most recent and accurate data on the ART centre clients as well as their children. Again it was found that the white cards maintained in the ART centres were outdated and it was a challenge to get current and up- to-date information and the ART centres themselves were struggling to track their Loss for Follow-up (LFU) cases as the contact information given in the white cards were not reliable.

White Cards in the ART Centre being organized 
The method we adopted for White Card Updation
A snapshot tool was developed to capture critical patient related information that would be required in updating the white card. 

Areas of Updation in White card:

-Identification data of the patient with particular reference to her/his current address

      -Family history with additional reference to status of individual level entitlements
      -Current regime of ART and last CD4 count
      -Information on TB diagnosis and treatment during HIV carr
      -Use of contraception and pregnancy status of female patient
   -Linkages with other NGOs for Care and Support services and enrolment in Government schemes
     -Information on Paediatric patients (under 15 years of age –residence status and
     caregiver/Guardian information).
The objectives we had in mind to do White Card Updation Exercise
1. To provide a rapid mechanism of capturing critical patient/family related information for better programing

2. To develop a line list of PLHIV, CLHIV and their families for linkages to services.
3. To strengthen the quality of documenting and recording of patient information ensuring consistency and up-to-date data

31 ART centers have cooperated for updating ART White Cards to get accurate data on PLHIV and Children Affected by AIDS. A total of 54,97,1 white cards have been updated. Initial analysis of data projects a ratio of 1: 6-10 affected children for every infected child. 60-65% CABA in the age group of 10-18.

White Card Updation has added value to the existing data by helping us understand the number of children who are affected by AIDS- the positive, negative and not tested and the gender wise break-up; current family status of children- if they are single orphan or double orphan; geographic location of these children and their families; age group of these children; possession of social entitlements by these children and their families and how many widows/widowers have children affected by AIDS.

This has helped to develop evidence base outreach using cluster wise approach to reach CABA and their family members. DAPCUs have started using data for advocacy to facilitate social protection schemes.

The Senior Medical Officer, Solahpur says, ' White Card Updation helps us in following up the Lost to Follow Up(LFU) cases effectively as we have their correct contact details now .'



No comments:

Post a Comment