NATIONAL HOME BASED CARE POLICY GUIDELINES FOR HIV/AIDS
NATIONAL
home based care policyGUIDELINES FOR HIV/AIDS
AUGUST 2010
TABLE OF CONTENTS
1INTRODUCTION.………………………………………………………………6
1.1Background..…………………………………………………………...... 6
1.2HomeBasedCare within the national health system………………….....6
1.3 Justification…………………………………………………………………...7
1.4 PROCESS OF DEVELOPING DOCUMENT………………………………………....7
1.5purpose and objectives of the policy guidelines………………………...7
2 RATIONALE OF HOME BASED CARE…………………………………...10
2.1 BENEFITS………………………………………………………………….....10
2.2 TARGET AUDIENCE……………………………………………………………….11
2.3 ELIGIBLITY CRITERIA FOR HBC……………………………………………...... 11
2.4 GUIDING PRINCIPLES FOR PROVISION OF HBC………………………….12
2.5CHALLENGES TO IMPLEMENTATION……………………………………..12
3MODELS FOR HOME BASED CARE SERVICES…………………...... 13
3.1Facility based health care outreach model…………………………...14
3.2Community based Home care model……………………………………..14
4 ROLES AND RESPONSIBILITIES OF THE DIFFERENT LEVEL OF CARE……………………………………………………………………………...... 15
4.1National Level…...………………………………………………………..16
4.2District level……..………………………………………………………..16
4.3Facility Level…….………………………………………………………..16
4.4NONFACILITY BASEDHBC ProviderS……...………………………………..17
4.5 COMMUNITY VOLUNTEERS…………………………………………...... 17
4.6 FAMILY CARE GIVERS…………………………………………………………...... 17
4.7 PLHA………………………………………………………………………………..17
5HOME BASED CARE SERVICES FOR HIV/AIDS....……………………19
5.1TECHINICALHOMEBASEDCAREServices...………………………………..19
5.2Facility Level Services….………………………………………………..20
5.3Community Level Services..………………………………………………20
5.4Household Level Services..………………………………………………21
5.5Structuring HBC Services at the different levels…………………..26
6 MEDICINES, SUPPLIES AND EQUIPMENTS FOR HBC……………….27
7 TRAINING…………………………………………………………………….27
7.1 REFERRAL PROCESS……………………………………………………………28
8STEPS IN ESTABLISHING AND MAINTAINING HBC PROGRAMME …...... 29
9MONITORING AND EVALUATION..………………………………………31
9.1what is monitored and evaluated in home based care………………..31
9.2LEVELS OFMONITORING ANDEVALUATION………………………………..31
9.3how monitoring and evaluation are done in home based care ………32
9.4m&e framework for home based care programme……………………..32
9.5MINIMUM MONITORING AND EVALUATION REQUIREMENTS………...………….32
9.6 CORE INDICATORS OF HBC PROGRAMMES………………………………………....32
10LEGAL ISSUES IN COMMUNITY & HOME BASED CARE...…………34
10.1Rights and access to AIDS information and prevention……....………34
10.2Rights of children infected or affected by HIV/AIDS………………..34
10.3Gender Concerns………………………………………………………..34
10.4Stigma and discrimination………………………………………………..35
ACRONYMS
ABCDAbstinence, Being faithful, Condom promotion and Diagnostic HIV testing
ACPAIDS Control Programme
ARTAntiretroviral Therapy
ARVs Antiretroviral drugs
CB DOTSCommunity-Based Directly Observed Treatment Short course
CBO Community Based Organisation/ Community groups
CME Continuing Medical Education
CORP Community Owned Resource Person
DHAC District HIV/AIDS Committee
DHMT District Health Management Team
FBOFaith Based Organization
HBC Home Based Care
HCHealth Centre
HCTHIV Counselling and Testing
HSD:Health Sub-district
IECInformation Education and Communication
IMCIIntegrated management of Childhood illness
IST/ESAEast and Southern Africa
LMISLogistics Management Information System
M&EMonitoring and Evaluation
MOHMinistry of Health
NCCNational Council of Children
NGONon-Governmental Organization
OIOpportunistic infections
ORSOral Rehydration Solution
OVCOrphaned and vulnerable children
PDCParish Development Committee
PEP Post Exposure Prophylaxis
PFPPrivate for Profit
PLHA People infected and affected by HIV/AIDS
PMTCT Prevention of mother to child HIV transmission
PNFPPrivate Not for Profit
PWP Prevention with Positives
RTCRoutine HIV Testing and Counselling in clinical settings
SRHSexual and Reproductive Health
STISexually Transmitted Infection
TASOThe AIDS Support Organisation
TBTuberculosis
TOT Trainer of Trainer
UAC:Uganda AIDS Commission
UBOSUganda Bureau of Statistics
UHSBS Uganda HIV/AIDS Sero-Behavioural Survey
VCTVoluntary Counselling and Testing
VHTVillage Health Team
WHO World Health Organization
FOREWORD
Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/ AIDS) still remains one of the major public health problems in Uganda.
Ministry of Health now has a comprehensive continuum of care for people living with HIV/AIDS that includes a lot of interventions that have been addressed such as clinical services, nursing care, counselling, social support, palliative care and Home Based Care. Ministry of Health regards Home Based Care as a visible mechanism for delivering services because it has important benefits for everyone along the continuum. To help sustain this initiative, Ministry of Health is adapting the Home Based Care for people living with HIV/AIDS that will work through the village health team structures at community level. The purpose of the policy guidelines is to ensure harmonized and standardized service delivery. It also aims at strengthening integration of Home Based Care into Uganda’s existing health care system.
These policy guidelines are intended for use in a diversity of geographical and cultural settings. Although this document is intended to be as relevant as possible in different settings, readers will find that their own cultural settings or circumstances are unique. I am therefore appealing for flexibility and creativity while utilizing this document as a set of guidelines for the development of community based programmes which offer broad support to families in caring for people living with HIV/AIDS at home.
The programmes which emerge from the use of these guidelines should be tailored to the peculiar circumstances and needs of the communities which create them. There are two basic models for Home Based Care services; community based home care model and facility based health care outreach model. The programmes should provide services to the individuals, families in the households and community.
All stakeholders both public and private are called upon to make use of the guidelines in order to streamline provision of home based care services for HIV/ AIDS.
I hope that the use of these policy guidelines will go a long way towards contributing to the overall health sector goal in Uganda.
Dr. Nathan Kenya-Mugisha
For: DIRECTOR GENERAL HEALTH SERVICES
MINISTRY OF HEALTH
ACKNOWLEDGEMENT
The National HIV/AIDS home care standards have been developed withthe collaboration and efforts of various stakeholders involved in deliveryof HIV/AIDS services in the health sector in Uganda. The tireless effortsof the following institutions are acknowledged for their time, dedicationand contributions: TASO, Mildmay, Hospice Uganda, Nsambya HomeCare, Uganda Red Cross, Mengo Home Care, Kitovu Mobile, KuluvaHospital, JCRC, Rubaga Home Care, Mbuya Reach Out and NAFOPHANU.
Appreciations go to CDC, PACE and WHO for all the support offered in the development of the policy guidelines.
Sincere appreciations go to the following individual members of committees from different organizations who took their precious time off and managed to contribute to the development of this document;
Dr. Apolo Kansiime / MoH / Dr. Zainab Akol / MoHDr. Alex Opio / MoH / Ms. Margaret Muwonge / MoH
Dr. Elizabeth Madraa / MoH / Ms. Pamela Mugisha / Baylor College
Dr. Betty Kasanka / MoH / Ms. Teddy Rukundo / MoH
Dr. Barbara Mukasa / Mildmay / Ms. Domitilla A Odongo / MoH
Mr. Richard Okwi / MoH / Ms. Madinah antumbwe / Kitovu Mobile
Dr. Alice Namale / CDC / Ms. Florence Nagawa / NAFOPHANU
Dr. Eric Ikoona / MoH / Dr. Jennifer Ssengooba / Hospice Uganda
Dr. Peter Nsubuga / MoH
Dr. Lillian Mukisa / Mulago / Ms. Jane Nabalonzi / MoH
Mr. Sam Enginyu / MoH / Ms. Robinah E Nakasi / MUK
Mr. Micheal Muyonga / MoH / Mr. Frank B Atukunda / Kisiizi Hospital
Dr. Elizabeth Namagala / MoH / Dr. Hafsa Lukwata / MoH
Dr. Dorothy Balaba / PACE / Dr. Esiru Godfrey / MoH
Dr. Godfrey Kayita / MoH / Dr. Maria Nanyonga / Nsambya Home Care
Dr. Hudson Balidawa / MoH / Mr. George A Nkugwa / Uganda Red Cross
Dr. Alex Ario Riolexus / MoH / Mr. Joel Arumadria Tivu / Kuluva Hospital
The facilitating team of Dr. Andrew Balyeku and Dr. Herbert Kadama and Ms. Annet Katamba (MoH) for typing and editing the policy guidelines.
Special mention and recognition go to WHO Country and Regional Offices for the technical and financial support with special mention of Ms. Rita Nalwadda, Dr. Beatrice Crahay, Dr. Innocent Nuwagira, Dr. Frank Lule and Dr. Evelyn Isaacs from WHO/IST/ESA. Many thanks also go to the additional committee members who reviewed and edited the final drafts.
Dr. Zainab Akol
Programme Manager STD/ACP/MOH.
1 INTRODUCTION
1.1 BACKGROUND
Home Based Care in Uganda focuses on quality of care and prevention being made available to all who need it, across a continuum extending from the health facility to the community and to the family. This care should be comprehensive and accessible to all in need, not stigmatising, sustainable and supported by motivated and informed communities and health service providers.
Within the health sector, supporting and expanding the provision of Home Based Care and strengthening referral systems to other health facilities and complementary services is one of the strategic objectives of Uganda National AIDS Strategic Plan (2007/8-2011/12) and a core intervention in the Health sector AIDS Control Program.
Despite expanding availability of AIDS control program services, notably Antiretroviral Therapy (ART), HIV Counselling and Testing (HCT) sites and PMTCT, HIV/AIDS service coverage is still constrained by insufficient access to entry points, insufficient adherence to medication, widely prevalent stigma, strong resistance to serostatus disclosure or sharing treatment information with a household member and low utilisation and availability of HIV/AIDS prevention services. There are many people who do not know their status with only 10-12% of men and women between the ages of 15-49 years having tested for HIV and received the results1. At the same time, about 70% of people have expressed the desire to be tested. With the increase in testing coverage, more HIV positive clients are expected and will need care, treatment and prevention services. Provision of quality HIV/AIDS services beyond the health facility and particularly at home is now a key focus of all HIV/AIDS subprograms within the health sector.
1Uganda National Sero-behavioural Survey, 2005/6
1.2HOME BASED CARE WITHIN THE NATIONAL HEALTH SYSTEM
Home Based Care contributes to the second goal of the National Health Strategic Plan (NHSP) which is to improve the quality of life of People Having AIDS (PLHA) by mitigating the health effects of HIV/AIDS by 2012. The target is to scale up and reach 80% of those in need of care and treatment by the year 2012. Home Based Care works within the health system and structures in each Health Sub-District, involving cross referrals from all levels of care (whether public or private, formal or informal) to the households.
Community support for Home Based Care is at Village Health Team (VHT) level. The VHT provides a network of Community Health Workers whose main aim is to facilitate the process of community mobilization, empowerment for health action and serving as the first link between the community and the formal health service providers. Being within the community, Home Based Care provides a vital link between prevention, treatment, support and care to all affected families.
1.3 JUSTIFICATION
With increasing access to HIV/AIDS care services, there is an increasing number of AIDS patients in conditions of poverty and restricted access to quality health care. The demand for services has led to over-burdened health facility services in hospitals and Health Centres. Within the current situation of low staffing, poor patients and staff morale and other operational constraints, HBC is increasingly recognized and formally integrated into the continuum of HIV/AIDS-focused services and thus needs to be standardized and regulated.
With the advent of free antiretroviral drugs, resurgence of tuberculosis and the need for consistent HIV testing and monitoring, HBC service needs have become more complex and technical. HBC coverage is very low compared to the number of patients in need of the services and mainly concentrated in urban and peri-urban communities and mostly under Non-Governmental Organizations and civil society organizations. HBC service delivery lacks standards to guide provision of HBC services andaccreditation procedures to regulate organizations providing Home Based Care services.
Even within the sector, various ACP sub-programs have found need to be linked to community components for their specific interventions. Unless HBC guidelines are developed, HIV/AIDS service provision at community and household level will remain fragmented, ineffective and unsustainable.
1.4PROCESS OF DEVELOPING DOCUMENT
These guidelines were developed through consultations and consensus building process. A Home Based Care (HBC) task force developed the initial scope of the guidelines with wide consultations among stakeholders and based on an assessment of HBC in the country. The guidelines were developed and discussed by experts at national consensus workshops.The guidelines were developed in line with the national decentralization policy, National AIDS strategic Plan, Health sector Strategic plan (HSSP II) and National HIV/AIDS/STI strategic plan.
1.5PURPOSE AND OBJECTIVES OF THE POLICY GUIDELINES
The purpose of the National Policy and implementation guidelines is to provide a consistent framework for implementers to use in providing and expanding health sector Home Based Care services for people living with HIV/AIDS.
1.5.1Goal
The overall goal is to provide a frame work to guide implementation and expansion of comprehensive HBC package for people infected and affected with HIV/AIDS.
1.5.2Objectives
The specific objectives are:
1)To define the minimum technical HBC interventions to guide in planning, provision and regulation of quality HBC services.
2)To provide a framework for accreditation of sites/institutions providing HBC services.
3)To provide a frame work for monitoring and evaluation for HBC services.
1.5.3Strategies for HBC
The following are key HBC strategies that should contribute to the achievement of the national HBC objective.
The overall strategy of these policy guidelines is to roll out quality HBC activities within the AIDS Control Program activities by harmonising community and home based ACP efforts.
Build capacity for provision of HBC services through training of VHTs at community level: The strengthening of care teams is vital to improving the quality of care. Ongoing development of staff and volunteers will also assure the future of Home Based Care in the country.
Carry out regular supervision: to ensure that institutions involved in HBC adhere to the national HBC policy guidelines
Strengthen the referral system between communities and health facilities using VHT structures: referral enhances provision of quality services at all levels.
Scale up access to HBC service provision: promoting equitable distribution of services to those in need of them.
Strengthen partnerships and linkages of different key stakeholders involved in HBC: It fosters better coordination and collaboration of all stakeholders involved in the provision of HBC services.
Integrate HBC in all HIV/AIDS and related interventions like PMTCT and ART, at all levels; this fosters linkages and referrals within the HIV programmes and others like RH, TB and Paediatric.
Empower the PLHA and their families in self care and positive living: Providing information to families and patients allows them to make appropriate decisions and empowers them to complement care providers throughout the continuum of care.
Strengthen strategic information system for HBC throughmonitoring and evaluation: Continually reviewing and assessing Home Based Care programmes by monitoring activities such as supervisory visits and case and record reviews will keep Home Based Care implementation on track. M&E is the component that brings standards into action,ultimately reaching the patients and their families.
1.5.4Scope
It is recognised that Home Based Care is a broad concept with various sectors contributing to the holistic process of care given to people infected and affected by HIV in their home settings. These guidelines focus on the health sector quality of care and prevention interventions, across a continuum extending from the health facility to the community through VHTs and to the family. They serve as guidelines for community components of interventions in the Health Sector ACP including ART, nutrition, PMTCT, HCT, STI, TB/HIV, collaboration and positive prevention,among others.
2.RATIONALE OF HOME BASED CARE
2.1BENEFITS
Home based care in the health sector is promoted and scaled up as part of the continuum of care and as a linkage between the ACP sub-Programs at community and household levels. In addition, HBC benefitsPLHA, their families, the community, as well as the health service delivery system. Though these guidelines focus on the health sector HIV/AIDS interventions, HBC ensures that children and families have access to wider social welfare services within their communities.
2.1.1Benefits to the Person having HIV/AIDS (PLHA)
Home Based Care enables the PLHA to take more responsibility for their own wellbeing in a homely environment and receive care fromemotionally trustedpeople (VHT). It also allows the client to continue participating in family affairs, retain a sense of belonging to their social groups, and accept their condition more easily and reduces the hospitalisation psychological trauma among PLHA. Through its integrated care and referral linkages at all levels, it ensures access to the continuum of treatment, care, support and preventive services.
2.1.2Benefits to the Family
Home based Care contributes to family solidarity, helps the family to accept the infected person’s condition, and makes it easier to provide care and support to the PLHA (e.g. adherence to treatment and nutritional requirements). HBC can reduce health care costs, and makes it easier for family members who provide care to attend to other responsibilities.
It also offers an opportunity for family members to access other HIV/AIDS prevention and care services like VCT, PMTCT, ART, community-based Directly Observed Treatment Short Course (CB-DOTS), palliative care, orphans and vulnerable children (OVC) support, and family planning.
2.1.3Benefits to the Community
Home Based Care helps to reduce health care costs, affords opportunities for community members to fight stigma and discrimination and to provide support to PLHA, contributes to community cohesiveness, and raises awareness about the causes and impact of HIV/AIDS.
2.1.4Benefits to the Health Care System
Home Based Care, helps ease the demand on health care facilities, doesn’t require the creation of extra services where none exists, and extends responsibilities to individuals, families and communities. Though it reduces unnecessary visits and admissions to health facilities, it does not aim to shift the burden solely onto the community and family care givers.
2.2.TARGET AUDIENCE
2.2.1Users
This document is intended to provide a framework to guide planners, managers and implementers of HBC at National level and District/sub district level including VHTs. It is also intended to guide Non-Governmental Organizations (NGOs), Faith Based Organizations (FBOs), and community groups (CBOs) involved in HBC, in developing or expanding Home Based Care (HBC) programs for people with HIV/AIDS (PLHA).