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The national plan to address HIV / AIDS in India seeks to strengthen family and community care through psycho-social support, counseling to adhere to the prescribed ART regimen and education against stigma and discrimination associated with the epidemic. NACP-III has developed comprehensive guidelines on HIV care for each level of the health system.
The national plan to address HIV / AIDS in India seeks to strengthen family and community care through psycho-social support, counseling to adhere to the prescribed ART regimen and education against stigma and discrimination associated with the epidemic. NACP-III has developed comprehensive guidelines on HIV care for each level of the health system.
The national plan to address HIV / AIDS in India seeks to strengthen family and community care through psycho-social support, counseling to adhere to the prescribed ART regimen and education against stigma and discrimination associated with the epidemic. NACP-III has developed comprehensive guidelines on HIV care for each level of the health system.
Dr. S. VIJAYAKUMAR, I.A.S., Project Director & Member Secretary Tamil Nadu State AIDS Control Society
Greetings from the Tamil Nadu State AIDS Control Society
According to the National AIDS Control Organization, approximately 50,000 children below 15 years are infected by HIV every year. In addition to those infected, children are affected both directly and indirectly when one or both of the parents become HIV positive. To address this staggering need, the national plan to address HIV/AIDS in India as articulated by NACP-III seeks to strengthen family and community care through psycho-social support, counseling to adhere to the prescribed ART regimen and education against stigma and discrimination associated with the epidemic.
Understanding the need to address the epidemic through family and community support, NACP-III has developed comprehensive guidelines on HIV care for each level of the health system; linkages with social sector programmes for accessing social support for infected children and their families; outreach and transportation subsidy to facilitate ART and follow up, nutritional, educational, recreational and skill development support, and by establishing and enforcing minimum standards of care and protection in institutional, foster care and community-based care systems.
Initiated in September 2005, Tamil Nadu State AIDS Control Society (TANSACS) through its Tamil Nadu Family Care Continuum Program (TNFCC) successfully piloted a continuum of care approach to care of HIV infected and affected children by addressing needs of children and parents / care givers, and promoting on-going linkages between clinical, community and home based services. This has led to improved client tracking, comprehensive and uninterrupted services to families; improved levels of adherence to antiretroviral drugs, especially women and children; and successful linkages of clients to government schemes, of which they would otherwise be unaware.
Since its inception, TNFCC has successfully identified and registered around 16,000 people from 12000 families in 10 districts of Tamil Nadu; around 6,000 adults and children were started on ART and the program caters to 1200 infected children and 12000 affected children. A unique feature of the program is provision of effective pre-ART care to delay disease progression and maintain non- ART status for a longer period, while ensuring timely initiation of ART when needed.
TANSACS acknowledges SAATHII for its technical assistance to the program, Duke University for monitoring and evaluation, The Childrens Investment Fund Foundation for funding support, and all the TNFCC-associated ART centers, field NGOs and hospital NGOs for effective implementation
This document provides an operational framework to guide outreach workers on the steps involved in provision of quality home-based care in conformity to standards set by Indias National Control Program (NACP III)
Dr. S. VIJAYAKUMAR, I.A.S., Project Director Tamil Nadu State AIDS Control Society
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Content
Background of TNFCC program 3 a. Mapping and Linkages 8 b. Client identification 9 c. Home visit 10 d. Exploring family status and needs identification 11 e. Providing psychosocial support 12 f. Addressing stigma and discrimination 14 g. Facilitating disclosure of HIV sero-status 15 h. Capacity building of clients 16 i. Care giver identification and training 18 j. Opportunistic infections / Symptoms identification, management and referrals 18 k. Adherence monitoring and counseling 20 l. Ensuring clients access to hospital services 21 m. Tracking clients progress 22 n. Facilitating formation of support group 23 o. Referral and linkages 25 p. Promoting positive speakers 26 q. Facilitating child focused intervention 27 r. Taluk Level Coordination meeting 27 s. Documentation 28 t. Key indicators tracked for monthly technical report and assessing program progress 29 u. Information sharing 30 v. Model curriculum for capacitating PLHIV and care givers 32 Annexure 1 (a r) 36
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BACKGROUND OF TNFCC PROGRAM Since September 2005, Tamil Nadu State AIDS Control Society (TANSACS) with funding support from Childrens Investment Fund Foundation (CIFF) has been implementing the Tamil Nadu Family Care Continuum Program (TNFCC) in ten districts of Tamil Nadu. Technical Support partner NGO SAATHII (Solidarity and Action Against the HIV Infection in India) provides technical, operational and logistic assistance and internal monitoring support to the project. External Monitoring and Evaluation is being conducted by Duke University. TNFCC emphasizes comprehensive care of children infected and affected by HIV/AIDS through a family-centered approach. The approach strives to improve quality of life in HIV-affected families, encompassing health, nutrition, psychological, economic and social domains, through active engagement of both government and non-government partners. This multi-sectoral and comprehensive approach to family-centered care is consistent with the mandate of Indias National AIDS Control Program and Guidelines for Care of Orphans and Vulnerable Children. To achieve its goal of preventing orphaning and enhancing quality of life for children and parents from HIV-affected families, TNFCC addresses the following objectives:
To develop and evaluate a multi-sectoral model involving government hospitals, NGOs, CBOs and positive networks in providing comprehensive continuum of care and treatment including medical, psychosocial and nutrition services, treatment of opportunistic infections and provision of antiretroviral therapy. To develop and evaluate an integrated family-centered continuum of care and treatment program for HIV positive families. To integrate community-led treatment preparedness and literacy programs with care and support services. To evaluate the impact of nutrition support and counseling on reducing morbidity and mortality in children and adults. Scope and coverage The project is being implemented in three government hospitals, attached to three of the major medical colleges in the state. Each hospital serves a cluster of districts with one hospital NGO designated in each cluster, and three or four affiliated field NGOs in the districts belonging to the cluster; resulting in net program coverage of ten districts. Each hospital runs a family-centered care program in partnership with NGOs and positive networks, with technical assistance from SAATHII. While private sector involvement in care and support has been low, it is an important aim of the program to promote public-private partnerships for technical, implementing, and monitoring assistance and in meeting the multifaceted needs of PLHIV.
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Hospital and NGO Partners of the TNFCC program
Hospital Districts covered Hospital NGO Field NGOs, CBOs and Positive Networks Government Kilpauk Medical College Hospital, Chennai
Chennai cluster: Chennai, Tiruvallur, Kanchipuram and Villupuram Community Health Education Society (CHES) South Indian Network of Positive People (SIP+), Madras Social Development Society (MSDS), and Animators for Community Development (ACD). Government Mohan Kumaramangalam Medical college Hospital, Salem Salem cluster: Salem, Erode, Dharmapuri, and Perambalur Young Women Christian Association (YWCA), Salem Young Women Christian Association (YWCA), Human Integrated Life and Learnings (HILLS), SEARCH, and Indian Development Organization Trust (INDO). Government Medical College Hospital, Tirunelveli
Tirunelveli cluster: Tirunelveli, Tuticorin Gramodhaya Social Service Society Positive People Welfare Society (PWST+), St.Joseph Leprosy Hospital (SJLH) Hospital activities The three government medical college hospitals function as hospital program sites and are responsible for coordinating and providing comprehensive care, support and treatment services. These services are provided by the hospitals clinical departments, the ART center having staff appointed by TANSACS and the staff of the hospital NGO. For the ART center in each hospital, TANSACS has recruited and trained 2 ART medical officers, 1-2 counselors, 1 lab technician, 1 pharmacist, 1 community care coordinator and 1 data entry operator as in any ART center. 5
TANSACS staff are supported by a trained NGO support team consisting of a project coordinator, 1-2 counselors, 1-2 nutritionists, 1-2 nurse case managers, 2 nursing aids, 1 pharmacist, 1 accountant cum data entry operator and a sanitary workers. The NGO staff varies according to the client load in each center and is gradually phased out as ART staff is added and trained.
I. Flow chart describing Hospital Based Services:
Patient Registration Overview of program and services to receive during hospital visit
Counselling Basic counselling, Report of CD4 test, ART Preparation, Adherence counselling, other issues like disclosure, safe and safer sex issues, positive living, partner testing, children testing etc Clinical Services Physical exam, OI Screening, Review of test results, Prescriptions (As per guidelines), other medical referrals and Lab CBC, CD4 (as per guidelines), Liver function test and other need based tests Pharmacy ART, Micronutrient supplements, Other OI drugs as per the prescription
Nutrition services Nutrition assessment, counseling, diet prescription, nutrition demonstration, Macronutrient supplements Patient Records/ Database Info Sharing to Field NGO 6
FIELD-BASED SERVICES AND ROLE OF OUTREACH TEAM Medical and nutritional services provided in the hospital are complemented by suite of field-based services provided by the NGOs, with outreach workers playing a critical role. These include: Identifying HIV positive clients, motivating them for hospital registration and monthly follow-up visits, and organizing support groups in their neighborhood Identifying and training peer educators and caregivers Providing home-based care which includes opportunistic infection diagnosis and referrals, and ongoing adherence counseling Referrals and linkages to various services such as housing, income generation, legal services, welfare schemes, vocational training etc. Providing child-related services All services are provided by NGO-specific teams consisting of project coordinator, child counselor, community health nurse and 8-10 outreach workers.
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II. Flow chart describing Field Based Services:
Mapping and Linkages Client identification and motivation Enrolment at the hospital
Client wise information sharing to hospital Service delivery at the field level and Documentation TNFCC Field component Home based care for consented clients Child Focused Intervention Community sensitization and resource mobilization Needs assessment Psychosocial support Linkages to other services Self care training Care giver training OI identification, management and training Adherence counselling and monitoring Palliative care Nutrition counselling LSE / Recreation activities Children support group Children camp Linkages to educational support Vocational training Linkages to other services Taluk level coordination meeting NGO coordination meeting Resource mobilization 8
Activities of the outreach workers are itemized below:
a. Mapping and Linkages:
One of the first tasks undertaken by outreach workers is to carry out district-specific mapping of demographic information, distribution of HIV in the population, service outlets in government and NGO sectors, and resources available for people living with HIV (PLHIV) in these sectors. Mapping helps the field teams to establish linkages with service providers, create and strengthen referral systems, and develop strategies for increasing access of PLHIV to the existing resources.
Steps:
i. The outreach workers make introductory visits to key stakeholders at district and sub-district (taluk and block) levels, and elicit information on services and data available with them. ii. They also establish rapport with key stakeholders, introduce the TNFCC program, and outline the needs of PLHIV that they could potentially fulfill. iii. They then submit this information to their respective project coordinators, who compile the district- and taluk- level directories and associated fact sheets iv. Each outreach workers gets a copy of the resource directory to use as a reference for their project activities, to strengthen referrals and linkages with government and other service providers within their areas of operation. v. The outreach workers periodically provide new data that the project coordinators use to update the directories.
Tools used
Please refer to Annexure 1(a) for suggested Mapping formats developed by TANSACS and SAATHII.
Expected Outcomes
The mapping exercises carried out by outreach workers are expected to lead to
Increase in clients identification and enrolment at the TNFCC center Increase in referrals to various government and other services Easy access to information for clients
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Tips for rapport building
Identify the most suitable means of introduction Confirm the identity Disclose the purpose of initial and follow-up home visits. Explain the services provided Engage in meaningful conversation [enquire wellbeing of family and children] Gain acceptance of client [Follow principles of counseling] Develop trust building Assure confidentiality Identify core felt needs of the client and start to address them [e.g. educational needs of children or nutritional needs of the family] Obtain consent for follow-up of HBC visits and modality of approach for follow-up visits- time, venue-house/client office/NGO office/common meeting points etc. b. Client Identification:
One of the key roles of outreach workers is to identify new HIV positive clients in their areas of work. This enables them to draw all PLHIV in the area into the continuum of care and positive prevention services, provide them with essential information pertaining to their infection, and help to create support systems for the client within their families and community.
Steps:
i. Outreach workers establish linkages with potential sources of HIV positive individuals in their areas of operation, such as ICTCs, NGOs working in HIV prevention, private health centers, private labs, VHNs, Anganwadi workers, key stake holders in the community etc. ii. They introduce TNFCC program and the various services provided at the hospital and field level, so as to encourage these stakeholders to refer PLHIV to them / to the facility iii. They collect names and addresses of clients from the above sources, ensuring confidentiality iv. They then approach clients, build rapport and motivate them to get enrolled at the TNFCC center, by detailing the various services provided by the hospital and the NGO (Refer to tips for rapport building) v. They provide newly identified clients referral slips signed by themselves. These slips contain the address of the hospital in the relevant cluster, and provide a mechanism for the hospital to track the source of referral. vi. They enter client details in the identification and enrolment register maintained at the community NGO vii. They seek client consent for providing home-based care services viii. They provide feedback and updates to the referring source on the clients
Tools used
Please refer to Annexure 1 (d, f) for formats of the Identification and Enrollment register and Referral Slip
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Expected Outcomes
Client Identification by outreach workers is expected to lead to:
Effective linkages and referrals with various service providers Increased enrolment at the hospital Increased access to care, support and treatment services
c. Home visits
Initial home visits by outreach workers help to obtain client consent for subsequent visits. If consent is obtained, home visits facilitate rapport-building with the clients and their families, enable the outreach workers explore clients and family needs, and ensure access to hospital and other required services. Such visits also help provide psychosocial support and build skills for positive living, train client and caregivers in home-based care, and link them to support groups and networks.
Steps:
The steps involved in home visits depend on the original source of referral of HIV-positive clients.
Scenario A: Hospital referral to Field NGO
TNFCC-ART Centers provide the field NGO project coordinator (PCO) a list of clients who have given consent to the ART counselor for home visits. Along with client consent, the list also contains guidance provided by each client on directions to their residence, best time and place to visit, and disclosure status to family. These data are extracted from client case sheets and added to the list, which is maintained as an MS Excel spreadsheet. Field NGO PCOs verify the data and share with outreach workers designated to work in the area where the clients reside.
Scenario B: Referral from other sources like ICTC, Private practitioners, VHNs etc.
During the mapping process or subsequent visits, outreach workers obtain information on new clients from ICTC, VHN, private practitioners and other referral sources. Information from such sources is usually sketchy as compared to information available from TNFCC ART Centers, with only the name and address provided, and other important information such as disclosure status and guidance for approach unknown.
Scenario C: Leads on clients generated during community sensitization gatherings
As part of their community sensitization activities, outreach workers conduct taluk-level coordination meetings on a quarterly basis. These meetings offer opportunities to sensitize local communities on HIV issues, build local ownership in epidemic response, and motivate uptake of counseling and testing. Following these meetings, community members occasionally reveal information to the outreach workers on individuals in the area known to be HIV-positive.
i. In all the scenarios described above, outreach workers need to take care to maintain client confidentiality and privacy with respect to neighbors, and 11
family members, especially when the clients have not disclosed status to their family. For instance, residents in the locality might provide the location of the client being sought out, but at the same time may be very curious to know the reason for the visit. Sometimes the neighbors or the entire family might be around when outreach workers interacts with the clients. In such cases, outreach workers need to apply their skills and techniques to handle the situations appropriately.
ii. Once the outreach workers have correctly located the client residence, they confirm the identity, establish rapport with the client, explain the purpose of the visit, and describe services provided through the program. The home visit consent status is reviewed and confirmed during the visit.
iii. Once rapport has been built and consent for future visits confirmed, the outreach workers provide home-based care to the client and family members and ensure access to essential services
iv. If the given address is wrong or untraceable, or the clients are unwilling for home based care, the outreach workers report this to the hospital during information sharing sessions
Tools used
Please refer to Annexure 1(b, g) for formats of the Daily Diary and Home Visit Sheet.
Expected outcomes
Home visits by outreach workers are expected to result in
Enrollment at the TNFCC Centers in case of clients identified in the community or through other service outlets Working relationship with client and family members Access to continuum of care services
d. Exploring family status and need identification
Exploring family status and identifying client needs helps to obtain clients demographic details, disclosure status, issues related to stigma and discrimination, and family members HIV status. Such information help understanding the felt needs of the client and their families, and ensure need based intervention for the well being of client and their families.
Steps:
i. Outreach workers build trust, gain confidence and acceptance by the client/ and family members ii. Outreach workers explore and document the following details in the respective registers a. Family profile Size of the family b. Education status (Including children) c. Occupation status (assess possibilities of migration Permanent or temporary, loss of job and reasons) 12
d. Family economic status e. Disclosure status To whom disclosed and not disclosed f. Partner / children HIV testing details g. Stigma and discrimination self, family, neighborhood, work place, community etc. iii. Outreach workers assess the following needs of the clients and their families and document them in the respective registers a. Physical needs i. Health needs ii. Nutritional needs b. Psychological needs c. Social needs d. Economic needs e. Environment needs and f. Education needs iv. Based on this database the outreach workers plan need based interventions, like referring the partner and children for testing, ensuring children education, referral to government welfare schemes, and other essential services, addressing stigma related issues, referral to counseling center etc.
Tools used
Please refer to Annexure 1 (d, e, f, g) for the formats of Identification and Enrolment Register, External Referral Register, Referral Slip, Home Visit Sheet
Expected Outcomes
Availability of client and family profile including needs Increased access to essential services ensured Spouse and children testing is ensured Support system for client within the family and community established
e. Providing psychosocial support
People living with HIV/AIDS and their family members undergo lot of emotional distress, which increases their mental health problems. Further, having mental stress affects the clients ability to cope with HIV, adhere to treatment including ART, and seek required support. Providing counseling support to the client and their family by the outreach workers helps to ensure clients and families cope with HIV and develop positive attitude and outlook towards life. It further helps to build support system, coping skills, treatment seeking behavior and increase access to services.
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Steps:
i. During home visit the outreach workers interact with client and their families and assess the following key areas:
SL. Key areas Observations 1 Sleep 2 Appetite 3 Interest in daily activities 4 Cognitive orientation (thoughts)
5 Socialization 6 Interpersonal skills 7 Self confidence 8 Self esteem and other emotional areas like guilt, fear, angry, grief etc.
9 Marital adjustment 10 Sexual life 11 Perception about life 12 Perception about future 13 Treatment seeking behavior 14 Substance abuse (Alcohol, drugs etc.)
15 Coping skills 16 Others, please specify
ii. Outreach workers document the key observations in the home visit sheet iii. Based on the assessment they identify the areas of support required and provide appropriate counseling iv. The counseling session (Key areas identified, intervention provided including referrals) is documented in the home visit sheet v. If the outreach workers feel they are unable to handle the issue they need to discuss the case study with the Community Health Nurse, Child Counselor, Project Coordinator, experienced outreach workers and seek their guidance in handling the issue or request one of them to come for home visit in handling the issue vi. If the outreach workers feel the issue can be addressed only by the TNFCC center then during the information sharing session the case study is discussed with the concerned staff (Counselor, ART medical officer, Nutritionist etc.) and documented in the case sheet and information sharing sheet vii. During the follow up visits the outreach workers assess the key areas and track the progress and provide feedback to the field and hospital team during fortnightly review meeting, case conferencing and information sharing sessions.
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Tools used:
Please refer to Annexure 1 (d, k, g) for the formats of Identification and Enrolment Register, Information Sharing Sheet, and Home Visit Sheet
Expected Outcomes
Providing psychosocial support by the outreach workers expected to lead to
Resolve psychosocial issues of clients and family members Provide referral services to clients and family members based on the areas identified Clients and family members develop coping skills and have access to services
Reading materials: 1. Living positively with HIV: A follow-up counseling toolkit on Mental Health by TANSACS 2. National AIDS Control Organization, Counseling Training Module, 2006
f. Addressing Stigma and Discrimination:
Addressing stigma and discrimination issues by the outreach workers helps to identify the reasons for stigma and discrimination in the family, community, work place etc., develop client coping skills to handle stigma and discrimination issues, facilitate disclosure to partner and family members, integrate client within the family, and community, ensure access to stigma-free services
Steps:
i. Prior to home visits the outreach workers review the clients socio- demographic details ii. Outreach workers interact with client and family members and explore stigma and discrimination issues with in the family and community members iii. Outreach workers assess the type of stigma (Self perceived stigma or Enacted stigma) faced by the client and family members iv. Based on the type of stigma the outreach workers develop strategies to address stigma and discrimination and associated emotional problems v. In case outreach workers are not able to handle this issue they need to seek Project coordinator, counselor, and community health nurse guidance and support or request one of them to come for home visit in handling the issue vi. During the follow up home visits outreach workers track the clients progress and provides required support to empower the client and the family members vii. The clients progress is shared during the field fortnightly review meeting, through information sharing session and case conferencing
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Tools used
Please refer to Annexure 1 (g) for the formats of Home Visit Sheets
Expected outcomes:
Addressing stigma and discrimination by outreach workers expected to
Document the reasons for stigma and discrimination all client and family members Empower Clients and family members to handle issues related to stigma and discrimination with in the family and community Ensure access to essential services
Reading materials
Living positively with HIV: A follow up counseling toolkit on Stigma and Discrimination by TANSACS
g. Facilitating Disclosure of HIV sero-status:
Due to multiple reasons such as stigma, discrimination, disruption of family relationships, fear of separation from spouse etc., many clients face challenges in disclosing their sero- status to the spouse, partners and family members. Facilitating disclosure by outreach workers helps, to create support system for client within their family, ensure HIV counseling and testing for spouse and children, ensure couples to practice safe and safer sex practices. It also helps clients to access medical and other care, support services by client/family members and receive timely and appropriate treatment and promote adherence to medication, including ART
Steps
i. Outreach workers interact with the client and explore the reasons for not disclosing the status ii. They explain the advantages, disadvantages of disclosure to the clients and make them understand its importance iii. During the interaction the outreach workers identify the barriers for disclosure and help the clients develop possible strategies for addressing the barriers iv. The outreach workers also explain forms of disclosure, steps in disclosure, which further facilitates adoption of viable strategies by the client v. If the clients request the outreach workers to be present during the disclosure, the outreach workers are expected to comply and help the client, spouse and family cope with the problems by providing appropriate information and counseling vi. During the follow up visits the outreach workers discuss with the client, spouse, and family members about their concerns and need to plan interventions based on that vii. If the outreach workers are not able to handle the case they seek guidance and support from project coordinator, child counselor, community health nurse or hospital counselor or request one of them to come for home visit 16
Disclosure to children
Outreach workers are encouraged to seek guidance from child counselors in facilitating disclosure to children.
The decision to disclose parents or childs HIV status to the child rests with the parents or guardian Disclosure may be partial: this means telling the child that his/her or the parents medical condition requires special care while not naming HIV/AIDS as the condition, and ensuring that all possible care is provided to make them feel better The time to disclose the status depends on o Childs level of development and emotional maturity o Readiness and comfort of parents / guardian o The best time to tell the child her/ his sero-status is ten to eleven years, as far as Indian setting is concerned above 12 years The best place to disclose is at home The child must be taught to keep the secret viii. The out reach workers share clients progress during the field fortnightly review meeting, information sharing session and case conferencing
Tools used
Please refer to Annexure 1 (d, g) for the formats of Identification and Enrolment Register and Home Visit Sheet
Reading materials
1. Living positively with HIV: A follow- up counseling toolkit on Disclosure by TANSACS 2. Protocol for child counseling on HIV testing, Disclosure and support by Family Health International
Expected Outcomes
Facilitating disclosure of HIV sero-status by the outreach workers expected to lead to
Conducive and supportive environment for the client with in the family Access to continuum of care services by client and family members
H. Capacity Building for clients:
With the advent of ART, HIV infection can be a chronic manageable condition. People with HIV need support, information and capacity building to demystify myths and misconception about HIV infection and lead a positive life. Capacity building for clients by the outreach workers helps to instill hope and confidence to lead a healthy and positive life, ensure access to care, support and treatment services, improve their quality of life and sustain the efforts of the service providers
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T T T i i i p p p s s s
f f f o o o r r r
p p p o o o s s s i i i t t t i i i v v v e e e
l l l i i i v v v i i i n n n g g g
Disclose to spouse / family and seek support system Get regular health care Adhere to medicines and nutrition supplements Eat healthy and nutritious food Maintain healthy habits Do regular exercise and take adequate rest Maintain good personal and environmental hygiene Identify and treat infections promptly Always adopt safe and safer sex practices keep self occupied Be part of support group Handle pets carefully Cut down Stress Seek spiritual support Seek psychosocial support regularly Steps i. Outreach workers train all the clients registered under TNFCC program during home visit on various components including basics of HIV/AIDS, ART, self-care, management of OI, nutrition, prevention of infections at home etc. using the minimum standards, training manual, home care kit box and IEC materials ii. Outreach workers document the topics covered during the home visit in the home visit sheet and updates in the self care training register iii. During follow up visit the outreach workers assess the knowledge, skills, health seeking behavior and attitude through interaction with clients, family members and observation iv. Based on the assessment the outreach workers reinforce the topics / information in the follow up visits v. Outreach workers track clients progress and share the information during the fortnightly review meeting and through case conferencing
Tools used
Please refer to Annexure 1 (d, i) for the formats of Identification and Enrolment Register, Care giver training register.
Reading Materials
1. Caring for someone with HIV/AIDS A home based care handbook by I-TECH 2. Living Positively with HIV: A follow up counseling toolkit Facts You need to know by TANSACS 3. ART and HIV Leaflet on ART developed by I-TECH 4. WHO flip chart Treatment literacy
Expected Outcomes:
Capacity building for clients by the outreach workers expected to lead to
Promote positive living among clients Sustain health seeking behavior
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I. Caregivers identification and training
Caregiver identification and training by the outreach workers helps to address stigma and discrimination issues at the family level, facilitate better caring environment for the client at the home level, ensure continuum of care at the home level, and capacitate caregivers in providing home based care.
Steps:
i. Outreach workers identify primary caregiver with the help of the client. ii. They train all the primary caregiver under TNFCC program on various home based care topics including role of caregivers, basics of HIV/AIDS, prevention of infections at the home level, Management of Opportunistic Infections at the home level, nutrition, personal and environmental hygiene, when and where to seek help, medicines to be taken by the client and the possible side effects etc... using the home based care for care givers training manual and IEC materials iii. Outreach workers documents the topics covered during the home visit in the home visit sheet and update in the caregiver training register iv. During follow up visit the outreach workers assess the knowledge, skills, attitude and problems faced by the caregiver through interaction with caregivers and observation v. Based on the assessment the outreach workers reinforce the topics / information to the caregiver in the follow up visits vi. On a periodic basis the outreach workers interacts with caregivers, identify their problems including burn out and provides counseling or refer to project coordinator /community health nurse/child counselor for counseling
Tools used
Please refer to Annexure 1 (i, g) for the formats of Care Giver Training Register, Home Visit Sheet
Reading materials
1. Caring for someone with HIV/AIDS A home based care handbook by I-TECH
Expected Outcomes:
Care givers identification and training by the outreach workers lead to
Establish support system for client at the home level Sustain the efforts of health care providers at the home level
J. Opportunistic infections / Symptoms identification, management and referrals,
Opportunistic infections / symptoms identification, management and referrals by outreach workers helps to ensure early identification and treatment of opportunistic infections, provide training / demonstration in managing opportunistic Infections / Symptoms at the home level, provide appropriate referral for clinical care and capacitate client and caregiver in opportunistic infection /symptom identification, management and referrals 19
Steps:
i. During the home visit the outreach workers assess the clients health status using the following tool S. No Presenting complaints Observations
1 Fever 2 Cold and cough 3 Tiredness and weakness 4 Nausea and Vomiting 5 Diarrhea 6 Skin problems especially rash
7 Bed sores 8 Mouth and throat problems 9 Breathing difficulty 10 TB 11 STIs 12 HIV related pain 13 Swelling 14 Dental problems 15 Eye problems 16 Any other problems / complaints
ii. Based on the nature and severity of complaints the outreach workers provide training / demonstration on home management /seek guidance and support from community health nurse through home visit / referral to hospital for clinical care iii. If the client needs palliative care the outreach workers go with community health nurse to provide nursing care and project coordinator/ child counselor for counseling iv. Outreach workers documents the opportunistic infections / symptoms identified and the interventions provided in the home visit sheet v. During follow up visit the outreach workers tracks clients progress including personal and environmental hygiene, health status, adherence to medicines, access to hospital services and provides appropriate training / input vi. Outreach workers train the caregiver / client in identifying the opportunistic infections /symptoms, and management during home visits
Tools used
Please refer to Annexure 1 (i, g, f) for the formats of Care Giver Training Register, Home Visit Sheet and Referral slip
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Adherence calculation
ART Adherence % = No. of pills taken / No. of pills to be taken * 100
Micro adherence % =No. of pills taken / No. of pills to be taken * 100
Macro Adherence % = Total grams taken /Total grams to be given * 100
(Or) Calculate the number of missed doses (ART and Micro) and no of days macro not consumed in the home visit sheet and report in the appropriate registers Expected Outcomes:
Opportunistic infections / symptoms identification, management and referrals by outreach workers lead to
Early identification of opportunistic infections and symptoms Promote health seeking behavior Ensure positive living Sustain efforts of the health care providers at the home level
Reading Materials
1. Caring for someone with HIV/AIDS A home based care handbook by I-TECH
K. Adherence monitoring and counseling
Adherence monitoring and counseling by the outreach workers help to monitor clients adherence to ART, ATT, OI drugs including prophylaxis, micro and macro supplements, identify barriers for adherence and develop appropriate strategy, ensure adherence to medicines and nutrition, ensure access to medical services and enhance quality of life
Steps
i. During home visit the outreach workers monitor clients adherence to ART, ATT, OI drugs including prophylaxis, micro and macro supplements through pill count, health status assessment including CD4 status, weight gain, Opportunistic Infections, interaction with client and caregivers, clients access to medical services, etc. ii. If the outreach workers come across poor adherence, missed doses, they interact with the client and caregiver to identify the barriers and reasons for poor adherence iii. Based on the assessment the outreach workers provides counseling to the client and caregivers on importance of adherence, strategies to overcome poor adherence and build support systems to improve adherence iv. During the information sharing the outreach workers shares the information with the hospital team which help hospital team to focus on adherence component during follow up visits v. If the Outreach workers unable to address this issue they need to seek guidance and support from community health nurse/ project coordinator/ child counselor or request one of them to come for home visit in addressing the problem 21
vi. During follow up visits the Outreach workers track clients progress and shares with the field and hospital team during fortnightly review meeting, case conferencing and information sharing sessions vii. Outreach workers documents the adherence status (For ART, Micro and Macro % should be reported) in the home visit sheet and updates in the CD4, ART register and monthly technical report
Tools used
Please refer to Annexure 1 (h, l, o, g) for the formats of Adherence Tracking, CD4, ART Register, TB Tracking Sheet and Home Visit Sheet
Reading Materials
1. Treatment preparedness guidelines by NACO 2. Adherence to Anti retroviral therapy in Adults, A guide for trainers by Population council, International center for reproductive health, coast province General Hospital, Mombasa
Expected outcome
Adherence monitoring and counseling by the outreach workers expected to lead to
Ensure adherence to ART, ATT, OI drugs, Micro and Macro supplements as per NACO standards Strategies for addressing barriers incorporated in the follow up counseling checklist
L. Ensuring clients access to hospital services
Outreach workers at the field level track clients hospital follow up status and ensure access to hospital services on a regular basis. This activity facilitates tracking the reasons for missed follow up, and lost to follow up, provide motivational counseling, treatment education and ensure clients access to hospital services which includes and not limited to routine clinical care, CD4 testing, counseling, nutrition counseling etc. Further it also help to ensure pre-clients are not in lost to follow up category and ART clients in regular monthly follow-ups
Steps:
i. Outreach workers with the help of patient wise data tracking system track clients who are in missed and lost to follow up category ii. During the home visit the outreach workers assess the reasons for missed and lost to follow up iii. Based on the assessment the outreach workers develop strategies to increase health seeking behavior through motivation counseling, treatment education, peer counseling, etc iv. If the outreach workers not able to enhance health seeking behavior they have to seek guidance and support from community health nurse/child counselor / project coordinator and involve one of them in home visit. 22
v. During information sharing with hospital team outreach workers share the reasons and seek guidance from the hospital team. If needed they request one of the hospital team members to come for home visit. vi. Outreach workers documents the reason, interventions provided, client hospital visit status in the home visit sheet and patient wise data tracking sheet vii. During follow up home visit the outreach workers track client progress and share with field and hospital team during fortnightly review meeting, information sharing and case conferencing viii. Outreach workers also provide supportive counseling and address the need to ensure clients access to hospital service on a regular basis
Tools used
Please refer to Annexure 1 (g, r) for the formats of Home Visit Sheet and Patient Wise Data Tracking sheet
Expected Outcome:
Ensuring clients access to hospital services by the outreach workers expected to lead to
Ensure all the clients enrolled in TNFCC ART centre access regular hospital services Document reasons for missed follow up / lost to follow up and address in follow up counseling
M. Tracking clients progress
Outreach workers at the field level track clients clinical, psychological, social and economic progress during home visit which helps to track client and family members overall improvement, identify gap areas, needs and develop strategies to address identified gap and needs, ensure access to care, support and treatment services. This facilitates improving quality of life
Steps:
i. During home visit the outreach workers assess the following key areas and document in the patient wise data tracking sheet and the respective registers
a. Family HIV status including Children b. Disclosure status c. Support system for clients with in the family d. Children school going status e. Environment and living condition f. Psychological well being g. Patients daily activities including work (Follow NACO WAB guidelines) h. Economic status i. Discordant status track periodic HIV testing by negative partner j. CD4 baseline count k. Follow up CD4 due date 23
l. Follow up CD4 testing date and count m. CD4 result collection status (Baseline and follow up) n. Progress in weight o. Progress in height (For children) p. Hospital follow up status q. client health status r. Health seeking behavior s. Adherence to ART, ATT, OI drugs, micro and macro t. Safe and safer sex practices u. Needs of client and family v. Implementation of self care and caregiver training program w. Participation in support group meeting x. Follow-up of referrals and linkages
ii. Based on the assessment the outreach workers derives intervention strategies which is followed up in the successive home visits iii. The outreach workers document the intervention provided and follow up status in the home visit sheet and update in the patient wise data tracking sheet and the respective registers iv. During information sharing with the hospital team the outreach workers share client wise progress with the hospital team and update in the case sheet v. Client wise progress is shared with the field and hospital team during the fortnightly review meeting, case conferencing and NGO coordination meeting
Tools used
Please refer to Annexure 1 (g, r, d, l, o, h) for the formats of Home Visit Sheet, Patient Wise Data Tracking sheet, Identification and Enrolment Register, Adherence Tracking Sheet, TB tracking sheet and CD4, ART register
Expected outcome:
Tracking clients progress by the outreach workers expected to lead to
Document clients progress Ensure clients and families access to continuum of care services
N. Facilitating formation of support group
Facilitating formation of family support group (Including PLHIV (Adult and children), caregiver, and affected children) by the outreach workers helps to form family support group at the Taluk / Block level, create and strengthen support system for the clients, children and caregivers, create a platform for information sharing among the clients, children and caregiver, capacitate clients, children and caregiver on managing HIV and create ownership and leverage community resources
24
Steps:
i. Outreach workers initiate the formation of family support group at the Taluk / Block level through explaining the purpose, activities and importance of support group ii. During the support group meeting the outreach workers train the support group members (PLHIV (adult) and Caregiver) on various topics including basics of HIV/AIDS, nutrition, importance of disclosure, managing symptoms at the home level, personal and environmental hygiene, Basics of ART, importance of adherence, welfare schemes, facilitation skills, legal rights etc. iii. Outreach workers facilitate sharing among the support group members to ensure support system, develop coping skills and develop shared vision iv. Outreach workers capacitate the support group members in planning and facilitating the support group members to ensure sustainability v. Outreach workers assist the support group members in planning and conducting the support group meeting vi. Outreach workers document the proceedings in the support group register and on a periodic basis review the document to ensure all topics are covered in the support group meeting vii. During the review meeting the outreach workers shares the experience, topics covered, resources mobilized, lessons learnt etc. during the fortnightly review meeting viii. Outreach workers ensure all the clients registered in TNFCC program are linked with support group
Outreach workers to refer the child focused intervention guidelines developed by TA team/TANSACS in conducting children support group
Tools used
Please refer to the Annexure 1 (n, p, i) for formats of Support Group Register, Children Data Base and Caregiver Training Register
Expected Outcomes:
Facilitating formation of support group meeting by the outreach workers expected to lead to
Form family support group at the Taluk / Block level Establish support system for PLHIV established within the community level Establish community ownership, resource mobilization and access to care, support and treatment.
Reading materials
1. Living Positively with HIV: A Follow up Counseling Toolkit Facts You Need to Know developed by TANSACS 2. Living Positively with HIV: A Follow up Counseling Toolkit Mental Health developed by TANSACS 25
3. Living Positively with HIV: A Follow up Counseling Toolkit Telling Your Partner developed by TANSACS 4. Living Positively with HIV: A Follow up Counseling Toolkit Stigma and Discrimination developed by TANSACS 5. Living Positively with HIV: A Follow up Counseling Toolkit Safer Sex developed by TANSACS 6. Living Positively with HIV: A Follow up Counseling Toolkit Disclosure developed by TANSACS 7. Living Positively with HIV: A Follow up Counseling Toolkit Compendium of Tools developed by TANSACS
8. Flip Chart HIV / AIDS udan Nambikkaiyodu Vazdhal Thodar Aalosanai Karuvi Neengal Terindukollavendiya Unmaigal (Tamil) developed by TANSACS
9. Flip Chart HIV / AIDS udan Nambikkaiyodu Vazdhal Thodar Aalosanai Karuvi Mananalam (Tamil) developed by TANSACS
10. Flip Chart HIV / AIDS udan Nambikkaiyodu Vazdhal Thodar Aalosanai Karuvi Thunaivarukku Arivithal (Tamil) developed by TANSACS
11. Flip Chart HIV / AIDS udan Nambikkaiyodu Vazdhal Thodar Aalosanai Karuvi Kalangappaduthuthal and Verupadututhal (Tamil) developed by TANSACS
12. Flip Chart HIV / AIDS udan Nambikkaiyodu Vazdhal Thodar Aalosanai Karuvi Padukappudan Udaluravu (Tamil) developed by TANSACS
13. Flip Chart HIV / AIDS udan Nambikkaiyodu Vazdhal Thodar Aalosanai Karuvi HIV Nilaiai Velipaduthuthal (Tamil) developed by TANSACS
14. Caring for someone with HIV/AIDS A home based care handbook by I-TECH
O. Referral and linkages
Outreach workers at the field level initiate referral and linkages to the client and the family members based on the needs and issues identified. This activity helps to establish and sustain linkages with NGOs, CBOs, government departments, and community stakeholders. This further facilitates client and families access to other required services
Steps:
i. Outreach workers Identify various facilities available with in a district/Taluk/ Block / village level (Health facility, ICTC center NGOs, CBOs, government departments, lions club, rotary club, etc.) through mapping exercise (refer to section a) ii. Outreach workers establish linkages with various service providers which enables to create and strengthen referral systems iii. Based on the needs identified (Refer to section d) the outreach workers details the services provided by the referral source to the client and provides referral slip to the client / family member (If needed the outreach workers 26
accompanies or makes alterative arrangements like linking with other clients/ peer educator etc.) iv. Outreach workers also facilitate in obtaining required certificates such as proof of residence, death certificate, income certificate, community certificate, etc. from the government departments and key stakeholders v. During follow up home visits the outreach workers ensures the client has accessed the place and availed the services vi. If the client has difficulty in accessing the services the outreach need to facilitate and ensure the clients have access to services vii. On a periodic basis the outreach workers meet the referral source, provide feedback including appreciating their contribution and request for extending continuous support viii. The outreach workers documents the purpose of referral, and out come in the home visit sheet and referral register ix. Outreach workers collects supportive documents for those accessed services and files it along with the referral register x. During information sharing session the outreach workers updates the hospital team about the services accessed by clients xi. In the fortnightly review meeting and NGO coordination meeting the outreach workers share the information with other staffs which facilitates further linkages
Tools used
Please refer to the Annexure 1 (g, e, f) for formats of Home Visit Sheet, Referral Register, and Referral Slip
Expected Outcome:
Referral and linkages by outreach workers expected to lead to
Ensure access to essential services Establish community participation and ownership
P. Promoting positive speakers
Promoting positive speakers among the PLHIV helps to address stigma discrimination issues within the family and community, create and sustain peer counselors who help in increasing health seeking behavior, identify new clients, prevent new infections and initiate advocacy issues and voice their rights
Steps:
i. During support group and home visit the Outreach workers identifies clients who are open about their status and willing to be positive speakers ii. Outreach workers builds clients knowledge and skills on positive speaking, peer counseling skills etc. which facilitates becoming a positive speaker iii. Outreach workers involve positive speakers in support group, Taluk Level coordination meeting, District Level NGO networking meeting, peer counseling etc. which ensures their participation and contribution 27
iv. Outreach workers documents the out come of involving positive speakers and shares with other staff during the fortnightly review meeting and NGO coordination meeting
Tools used
Please refer to the Annexure 1 (n, g, m) for formats of Support Group Register, Home Visit Sheet, and Taluk level / NGO coordination meeting format
Reading Materials
1. Positive development: setting up self help groups and advocating for change, A manual for people living with HIV Published by the Global Network of People Living with HIV and AIDS in collaboration with Health Link 2. Lifting the burden of secrecy A training module for positive speakers By Asia Pacific network of people living with HIV/AIDS
Expected Outcomes:
Promoting positive speakers by the outreach workers expected to lead to
Ensure Greater involvement of people living with HIV and AIDS in HIV prevention, care, support, treatment and advocacy efforts.
Q. Facilitating child focused intervention
Outreach workers to refer the child focused intervention guidelines developed by TA team/TANSACS.
R. Taluk Level Coordination meeting
Taluk Level coordination meeting serves as a platform to share issues, needs related to HIV/AIDS in the community and build the ownership of the community members to support families with People Living with HIV/AIDS and HIV/AIDS programs.
Steps:
i. Outreach Workers meet the key stakeholders at the community (Thasildhar, Block Development Officer, political leaders (MLA, Chairman, Panchayat Leaders, ward members etc.), service club president, Medical officer of Taluk Level / Block level hospital, Industrialist, business community, independent donors, SHG federation president, Faith based organization leaders etc.), explains the objective, purpose of the meeting and invites them to be part of the Taluk Level coordination committee. During the Taluk level coordination meeting the Project coordinator / child counselor / outreach workers a. Brief the various activities of their organization and TNFCC program b. Sensitize the stake holders on HIV/AIDS c. Present the issues / needs of People living with HIV, their families especially children in their area 28
d. Detail the role of Taluk Level coordination committee members in addressing these issues / needs and seek their guidance and support e. The outreach workers document the proceedings of the meeting including Taluk level committee members feedback, commitment on support / addressing the expressed need ii. The outreach workers in consultation with project coordinator implements the suggestions / feedback and ensures regular follow up with the members to mobilize resources and address key issues iii. The outreach workers documents the outcome of Taluk Level coordination meeting in the referral register / Taluk Level coordination committee meeting minutes iv. During the fortnightly review meeting and NGO coordination meeting the outreach workers disseminate the experience, learning and outcome for other to learn and implement
Tools used
Please refer to Annexure 1 (e, f, m) for formats of Referral Register, referral slip and Taluk Level coordination committee reporting format
Expected Outcomes:
Formation and facilitation of Taluk Level Coordination Committee meeting by the outreach workers expected to lead to
Sensitize community stakeholder on HIV and AIDS issues Establish and sustain community support for PLHIV and families
S. Documentation
Documentation helps to capture the input, output, outcome and impact which help the implementer to analyze the program progress and develop strategies.
Steps:
i. Outreach workers document the activities and input in the home visit sheet, daily dairy, registers and formats ii. The key output, and outcome are captured in the home visit sheet, daily dairy, registers, formats and outreach workers wise data sheet iii. Before consolidating the program data and documentation the project coordinator validates the data with outreach workers, where the outreach workers present supportive documents for each activities and data captured iv. During the fortnightly review meeting and NGO coordination meeting the outreach workers present their activities and key indicators in the program v. Outreach workers with the help of project coordinator/child counselor/community health nurse use the data, identify the gap areas and develop strategies to enhance the quality of the program vi. On a daily basis the outreach workers update all the registers and formats
29
Tools used
Please refer to Annexure 1 (a r) for formats of Daily Dairy, Resource Directory, Home Visit Sheet, PLHIV identification and enrolment register, Caregiver Register, CD4, ART, TB register, Support group register, External Referral Register / referral slip, HBC and Children kit distribution register, Taluk level coordination meeting format, Information Sharing Sheet, Outreach Workers Wise Data Sheet, Death register, Children Data Base, Patient wise data tracking sheet
Expected Outcomes:
Documentation by the outreach workers expected to lead to
Systematically capture input, output, and outcome of the program Enhance usage of data and establish documentary evidence for program implementation
T. Key indicators tracked for Monthly technical report and assessing program progress
The following key indicators are captured by the outreach workers in the specific reporting formats and registers, which are used for tracking the program progress.
# of PLHIV identified # of PLHIV registered (Adult) # of CIA registered # of families with children served # of family members served # of Affected children served # of clients tested for CD4 baseline # of clients received baseline CD4 test result # of clients eligible for follow up CD4 testing (1, 2,3,4,5, etc.) # of clients tested for follow up CD4 test (1, 2,3,4,5, etc.) # of clients received follow up CD4 result # of clients eligible for CD4 through baseline # of clients eligible for CD4 through follow up CD4 test # of clients eligible for CD4 based on WHO stage # of clients initiated on ART # of ART eligible clients not initiated on ART with reasons # of clients initiated on Micro and Macro supplements # of ART clients expected for hospital follow up # of ART clients in regular follow up # of ART clients missed follow up with reasons # of ART clients lost to follow up with reasons # of ART clients transferred out # of ART clients reported death # of Pre - ART clients expected for hospital follow up # of Pre - ART clients in regular follow up # of Pre - ART clients missed follow up with reasons # of Pre - ART clients lost to follow up with reasons # of Pre - ART clients transferred out 30
# of Pre - ART clients reported death # of clients under home based care follow up # of clients have disclosed their status to at-least one family member # of concordant couples # of discordant couples # of discordant couple maintain discordance # of discordant couple tested for HIV (Once in six months) # of clients trained on self care # of caregiver identified # of caregivers trained # of clients with TB # of clients taking ATT # of clients completed ATT Clients ART adherence % Clients micro and macro adherence % # of clients provided counseling # of clients received condoms # of children referred for various services (vocational training, education support, nutrition, institution care, etc.) # of children tested for HIV # of children not tested for HIV # of children going to school # of children know their HIV status # of children know their parents status Children orphan status (Both parents alive, single orphan, double orphan) # of clients referred for various services (Government schemes, nutrition, livelihood etc.) # of children under institutional care, kinship care # of clients referred for medical services # of clients attending support group meeting # of families received HBC and children kit # of families using HBC and children kit # of Taluk level coordination meeting conducted # of members participated in the Taluk level coordination meeting
U. Information sharing
Information sharing by the outreach workers facilitates, hospital team track clients progress at the field level including services provided by the field team, health seeking behavior, adherence to medicines, health status, field team to update client wise information to hospital team including the reasons for lost to follow up, missed follow up, eligible not started on ART, adherence issues, family problems etc This further facilitates hospital team and outreach workers to derive intervention strategies for problematic clients and family members, build capacity of the outreach workers.
Steps
i. During the fortnightly review meeting the outreach workers submit the fortnightly plan to the project coordinator which includes date for information sharing session with hospital team 31
ii. The project coordinator prepare the outreach workers information sharing session schedule and send it to ART center, TANSACS and Technical Assistance Team iii. The outreach workers completes the client wise data in the information sharing sheet and get approval from the project coordinator iv. As per the plan the outreach workers go to the ART center with client wise information v. During the information sharing day the outreach workers a. Assist the hospital team in case flow b. Accompany clients for clinical referrals c. Update the reasons for lost to follow up / missed follow up / eligible not started on ART, such as 1. Migration (temporary/permanent) 2. not able to trace the clients due to wrong address 3. client not willing for treatment (ART) 4. clients not willing for home based care 5. Death 6. Taking treatment at other ART centers 7. Taking treatment at private settings and non-allopathic practitioners, etc. with the help of hospital team
d. Request the hospital team to collect proper address or address the areas of intervention required from hospital team such as treatment preparedness to increase health seeking behavior, adherence to ART, OI medicines and supplements, maintaining personal hygiene, disclosure to spouse, motivating clients to bring spouse/ children for HIV testing, practicing safe and safer sex etc. through one to one interaction with concern staff with the case sheet or updating in the case sheet e. Documents the areas of intervention expected from the hospital at the field level through discussion with hospital team f. Seek guidance from the hospital team to address key issues at the field such as motivating clients for hospital follow up, counseling clients on safe and safer sex practices, facilitating disclosure, nutrition counseling, etc. g. Get technical input h. Review case sheet and collect data/information which is not mentioned in patient note book and the information requested in previous information sharing session vi. After information sharing session the outreach workers take a photo copy of the completed information sharing sheet and handover to the project coordinator for further follow up and filing vii. The ART medical officer review the process and outcome of information sharing session, and provide feedback viii. Before leaving the center the outreach workers sign in the information sharing register maintained at the hospital and get signature from the ART Medical officer / ART Counselor ix. During fortnightly review meeting the outreach workers update the process and out come of information sharing to the field team
32
Tools used
Please refer to Annexure 1 (k) for formats of Information Sharing Sheet, Death Register and Daily Dairy
Expected Outcomes: Information sharing session by the outreach workers expected to lead to
Document reasons for lost to follow up, missed follow up, eligible not started on ART by the field and hospital team Track patient wise information Develop strategies for individual clients and provide appropriate services Build outreach workers capacity in handling technical issues at the community V. Model Curriculum for capacitating PLHIV and caregivers
The following curriculum helps the outreach workers to plan the capacity building session in a structured way and ensure minimum standards for all the PLHIVs and caregivers. The outreach workers are expected to cover the proposed sessions for all the registered clients and the identified caregivers.
a. Basics of HIV / AIDS
Objectives of the session:
By the end of the session clients and caregivers will be able to
Understand basic facts about HIV/AIDS including modes of transmission, prevention and treatment Dispel Common myths and misconceptions related to HIV / AIDS Learn the importance of health seeking behavior
Content a. What HIV and AIDS are b. Functions of immune system c. How does HIV affect the immune system d. Importance of CD4 e. How HIV is transmitted f. How HIV is not transmitted g. Signs and symptoms h. Treatment i. Prevention j. Myths and misconceptions about HIV/AIDS including information on complete cure for HIV through alternative medicines k. Link between health seeking behavior, positive living and HIV disease progression
Materials required: Flip chart, pamphlets
33
b. Basics of Antiretroviral Therapy
Objectives of the session
By the end of the session the clients and caregivers will be able to
Understand basic facts about Antiretroviral therapy including when to initiate ART, advantages, possible side effects, management of side effects, and importance of adherence
Content
a. What are Antiretroviral therapy b. Why Antiretroviral therapy are important c. ART treatment preparation process/steps d. When to initiate ART e. Will ART cure HIV f. How long ART has to be taken g. Advantages of ART h. What to do before initiating on ART i. What are possible side effects of ART j. How to manage side effects k. What is adherence l. Why adherence to ART is required m. When to seek help
Materials required: Flip chart, pamphlets
c. Living positively with HIV
Objective of the session
By the end of the session the clients and caregivers will be able to learn and understand
HIV is a manageable infection Important elements in the management of HIV infection
Content
a) What is positive living? b) Why positive living? c) Is it possible to lead a healthy life after HIV infection? d) Important elements for living positively with HIV I. Medication II. Nutrition III. Healthy habits IV. Safe sex V. Positive attitude VI. Hygiene etc... e) Importance of making will Materials required: Flip chart, materials for demonstration 34
d. Nutrition and HIV
Objectives of the session
By the end of the session the clients and caregivers will be able to
Understand the importance of nutrition in managing HIV infection (Link between nutrition and HIV) Explain the various groups of food necessary for a balanced diet Describe the importance of nutrition in delaying HIV disease progression Describe the importance of food safety and hygiene
Content a. Link between Nutrition and HIV b. Component of food pyramid and its importance in daily diet c. Food safety and hygiene i. Importance of kitchen hygiene ii. Personal and environmental hygiene iii. Preparing food safely iv. Storage of food v. Storage of drinking water e. Demonstration of low cost recipe including macro supplements f. Importance of adherence to Macro and Micro g. Importance of kitchen garden
Materials required: Flip chart and Raw materials for low cost recipe demonstration session
e. Prevention of infection in the home
Objective of the session
By the end of the session the clients and caregivers will
Explain how to prevent infection at home Understand the importance of hygiene Demonstrate universal precaution methods Know the method of using condoms and its importance
Content
a) What are personal and environmental hygiene? b) Importance of personal and environmental hygiene in preventing infection c) What are universal precautions? d) Universal precaution methods e) Importance of condoms in positive prevention f) Steps and methods of using condoms
Materials: Flip chart, HBC Kit / materials for demonstration
35
F. Management of symptoms at home
Objective of the session
By the end of the session the clients and caregivers will
Identify symptoms of the various infections associated with HIV/AIDS Learn and treat symptoms at home Know when to refer/ go to the doctor
Content
a) How to identify symptoms at home b) What to do at home c) How to prevent d) When to refer / go to the doctor
The clients and caregivers are expected to be trained on the following topics
Fever Tiredness and Weakness Respiratory problems Diarrhea, Dehydration Skin Problems Pain, Anxiety, Depression, Mental confusion, and Dementia Nausea and vomiting Mouth and throat problems TB STIs
Materials: Flip chart, HBC kit and materials for demonstration
36
ANNEXURE 1 (a) MAPPING FORMAT
S.No Primary Divisions Secondary divisions Tertiary divisions Home affairs Taluks Assembly constituencies Parliamentary constituencies Panchayat unions Town panchayats Village panchayats Revenue Firkhas Revenue villages Municipalities Corporations Courts District Collectorate and other departments BDO DRDA TADCO etc, etc Population of the Particular district Male * urban, rural can also be some classifications Female Transgender Children (>12 yrs) Sex ratio Density of the population (Persons/sqm) Caste/ Tribe Literacy Male * urban, rural can also be some classifications Female 37
Boys <12th std Girls <12th std Employment Cultivators Male * urban, rural can also be some classifications Female Workers Male Female
Labourers Male
Female
Anganwadi workers Male
Female
Village health workers Male
Female
Multi purpose health workers Male
Female
SSA Officials Male
Female Non workers Male
Female Schools Balwadis * urban, rural can also be some classifications Anganwadis Primary Middle school High School Higher Secondary School Schools for special children Transit schools / Non formal schools Arivozhi Iyyakam Red ribbon clubs 38
Colleges Arts / Sciences * urban, rural can also be some classifications Engineering Teacher training colleges Other professional colleges Medical Colleges with red ribbon clubs Hospitals Govt. Hospitals * urban, rural can also be some classifications Primary Health centres SUB centres Block Hospitals Taluk Hospitals Private Hospitals RMPs / PMPs Medical phramacy Allopathic Practitioners Siddha Practitioners Unani Practitioners Homeopathy Practitioners Ayurvedic Practitioners Naturopathy Practitioners VCTC PPTCT STI clinics Blood Banks Clinical laboratory ART services ICTC Other Services 39
Anganwadis Village health centres List of STI / HIV/AIDS treating doctors / clinics Ngos- P & CST Intervention Programs * urban, rural can also be some classifications Prevention Programs STI clinics / HIV clinics Care, Support and Treatment programs Networks in the districts Community care centres Day Care centres Palliative care Deaddiction and Rehabilitation centers Other NGOs and CBOs- Micro credit organisation Welfare Services Family counselling centers * urban, rural can also be some classifications Adopting centers Orphanages Short stay homes Half way homes Child helpline Drop in centers Creches Old age homes Vocational training centers Bank schemes( private and nationalised) Collecterate Govt. loan schemes for women Govt. loan schemes for youth Govt. loan schemes for children 40
Govt. loan schemes for disabled Sangams and clubs Youth groups * urban, rural can also be some classifications Women groups Men groups Children clubs Police boys clubs / Friends of police Auto drivers associations Lorry drivers associations Aravanis Sangams Red cross society Blue cross society Advocacy Advocates / Legal aid services * urban, rural can also be some classifications Police stations (Women and general) Industries Small scale * urban, rural can also be some classifications Large scale Industries having HIV workplace policy The addresses and contact numbers of these organisations may be tapped down
41
ANNEXURE 1 (b) - DAILY DAIRY
N.G.O NAME: DATE ORW NAME DESIGNATION TIMINGS - ACTIVITIES
SUPERVISOR signature
ANNEXURE 1 (C) WEEKLY PLAN
WEEKLY PLAN S/NO DATE PLACE OF VISIT ACTIVITY PLANNED OUTCOME FOLLOW UP/REMARKS
42
ANNEXURE 1 (d) IDENTIFICATION AND ENROLLMENT REGISTER ORW Name : Identification & Enrolment register Block Name : Month :
S n o
F a m i l y
N o
Referre d by HIV testing done at Date of Identifi cation Date of enrolme nt OP No. Name & Address with Contact Number A g e
S e x
Marita l Status E d u c a t i o n
O c c u p a t i o n
M o n t h l y
i n c o m e
s t a t u s
No. of Chil dren S p o u s e
s t a t u s
Home visit Conse nt status Other Rem arks M a l e
F e m a l e
ANNEXURE 1 (e) EXTERNAL REFERRAL REGISTER
External Referral Register S.NO Pre ART / ART No Name Age Sex Date of referral Referred to Purpose Follow up comments Outcome Staff In-charge
43
ANNEXURE 1 (F) REFERRAL SLIP
44
ANNEXURE 1 (g) HOME VISIT SHEET
Date of visit Total Visit number: OP NO: Name of the client: Time: ________to__________ Family members present during the visit: Purpose of present visit: ( Tick key three objectives for the visit) Education/Training Psycho social support Follow up Basic HIV education Counseling PLHA Motivation for CD4 test, result collection and status
Inform about support group Counseling family members Referrals Positive living Counseling spouse Adherence monitoring Care givers training Counseling children OI identification and management
Nutrition education and demonstration Facilitate disclosure Spouse and children testing Home based care Others: Condom demo / distribution
45
Activities carried out Observations Follow up required
Needs of the client for follow up: Next HBC follow-up:
ANNEXURE 1 (h) - ADHERENCE TRACKING REGISTER ORW Name: Month: SNO OP NO Name Age Sex ART No Regimen % Percentage
46
ANNEXURE 1 (i) CARE GIVER REGISRTER ORW Name : CAREGIVERS REGISTER Block : Month : S n o
OP No. Famil y No Name of the PLHA ART/not on ART Self care training Name of Primary Caregiver Relationshi p Address of the Caregiver Contact No Participated in training program (In home visit / At training program) Remar k
ANNEXURE 1 (j) DEATH REGISTER ORW Name : DEATH REGISTER Block Name : Month : S n o
OP No Date of Registr ation Expire d date Date when death reporte d Name A g e
S e x
ART no. (if on ART) CD 4 cou nt On ATT/ Not on ATT Reason for not starting ART if eligible Last home visit before death date Place of Death Health condition at time of Death Date when the patient last visited the ART centre Brief on Funeral Assista nce
47
ANNEXURE 1 (k) INFORMATION SHARING SHEET
Name: Information Sharing Sheet Month: S .
N o .
Date of Regn. Pre - ART No. Name ART No Next CD4 due date Date of last visit by the client to the Hospital [Hospital NGO] Next visit to Hospital Death details Date / Reason Report on progress at home, issues to be addressed at the hospital - Field team [ORW] Report on progress at Hospital, issues to be addressed at home - Hospital team
ANNEXURE 1 (l) CD4, ART REGISTER
CD4, ART register S. No Block Pre ART No Family No ART No Registration Date Name Sex Age Date of baseline CD4 test CD4 count Baseline 1st follow up due date Tested date CD4 count 1st follow up 2nd follow up due date Tested date CD4 count 2nd follow up TB status ART start Date Regimen
48
ANNEXURE 1 (m) TALUK LEVEL COORDINATION MEETING
Place/Venue :
Date : Time :
Target Group:
Participants:
Male: Female: Total
Programme Topic: Facilitator:
Materials used:
Programme Narration:
Programme Objectives: At the end of the training program participants will
Training Activities: (Methodology& strategy) 49
Date of Submission :
Submitted by : Signature :
Training Content : Participant feedback: Questions asked and feedback: 50
ANNEXURE 1 (n) SUPPORT GROUP REGISTER
Support Group Register Meeting No: Date: Time: Taluk / Venue: End: Total Number of PLHA Member: Total Number of SG Family Member: Facilitator New Male Female New Male Female PLHA: Old Male Female Old Male Female Project Staff Total Male Female Total Male Female Peer Edcuator: External: Number of PLHA Member Attended: Number of SG Family Member attended: Minutes of last Meeting
New Male Female New Male Female Achieved:
Old Male Female Old Male Female Pending:
Total Male Female Total Male Female
Agenda of the Meeting
Details
Next Meeting: Time: Place: Facilitator: Please get signature of all the SG members
51
ANNEXURE 1 (o) TB TRACKING SHEET Anti TB Treatment ( ATT) - Reasons and Feed Back Month: ORW Name : Block Name: Sno OP No. Name Sex ART / Non- ART Number Type of ATT (I,II,III,IV) ATT (Newly Start) ATT (Regular) ATT (Completed) ATT (Missed Reason)
Number of clients expected for hospital follow up this month
Number of clients visited hospital this month
Number of clients missed follow up in this month
No of clients done Base line CD4
No. of clients received Base line CD4 report
No of clients done follow up CD4
No. of clients received follow up CD4 report
No .of clients eligible for ART in Base line
No. of clients eligible for ART in follow up
No. of clients on Transfer eligible
Total No. of clients eligible for ART
No. of clients started on ART
No. of active clients on ART
Reason for not starting ART
54
a. ON ATT treatment
b. Not willing to start ART
c. CD4 increased and feels good health
d. Having alcoholic and tobacco habit
e. Migration
f. Taking ART in other centre and private
g. On process
h. Death
Total number of clients not started on ART
No. of Children infected with HIV
No. of Children affected with HIV
No. of Clients attended with M& E - interview
No. of client pending for interview
M& E Home visits form due
No. of M& E HVF pending
No. of Taluk level advisory committee conducted
No. of Care givers trained on HBC
55
No. of Support group meetings conducted
No .of concordant couples
No. of discordant couples
ANNEXURE 1 (r) PATIENT WISE TRACKING SHEET S n o .
OP No. Name Sex ART LFU / Non ART LFU / Eligible but not ART started / ART Missed / CD4 not tested / Status not disclosed etc Reasons and Feed Back
(Address not clear, Migration, Death, Motivation, Out of Station(Area), Transfer out (Centre Name), unwilling for HBC / Treatment, Not accepting the status , Regular Follow-up, Private Treatment(Centre Name), Other District(Name), Other State(Name), Fear of Side Effects, etc.