Executive summary

This document provides a systematic framework for establishing and maintaining community home-based care (CHBC) in resource-limited settings for people with HIV/AIDS and those with other chronic or disabling conditions. Most CHBC services so far have been established through unsystematic, needs-based efforts. As the HIV/AIDS epidemic continues to grow, many organizations and communities are now considering expanding in a more programmatic approach, and countries are looking for scaled-up responses and national strategies for CHBC. This document therefore provides an important framework to guide governments, national and international donor agencies and community-based organizations (including nongovernmental organizations, faith-based organizations and community groups) in developing or expanding CHBC programmes. The need for such a document has been clearly identified.

CHBC is defined as any form of care given to ill people in their homes. Such care includes physical, psychosocial, palliative and spiritual activities. The goal of CHBC is to provide hope through high-quality and appropriate care that helps ill people and families to maintain their independence and achieve the best possible quality of life.

This document targets three important audiences: policy-makers and senior administrators, middle managers and those who develop and run CHBC programmes. Although the roles and responsibilities of these target audiences differ somewhat, developing effective partnerships among the three is essential. Policy-makers and senior administrators must be involved in developing and monitoring CHBC programmes, and the people who manage and run the programmes must share information and feedback with senior administrators. In this sense, policy and action are interrelated as each partner learns from and guides the other. To this end, this document is divided into four interrelated sections: a policy framework for CHBC; the roles and responsibilities for CHBC at the national, district and local levels of administration; the essential elements of CHBC; and the strategies for action in establishing and maintaining CHBC in resource-limited settings. A brief overview of each of these sections follows.

A policy framework for CHBC

This framework is a systematic approach for policy-makers, senior administrators and government decision-makers to follow in developing the overall policies and guidelines for CHBC. The framework is divided into eight discrete categories: the nature of the programme, eligibility criteria, eligibility assessment, benefits, programme operation, financing, coverage and cost. Each of these categories is described and questions are posed for senior administrators and policy-makers, in individual settings, to address as they develop the overall policy framework for CHBC.

Roles and responsibilities for the administration of CHBC

This section addresses issues related to CHBC administration. Decisions must be made about which administrative level is responsible for the various aspects of CHBC. For ease of description, three levels of administration have been identified: the national or central level, the district or provincial level and the local or community level of administration. An overview of each of these levels of responsibility is presented with questions to help guide decision-makers in determining how the responsibility for managing, administering and delivering CHBC should be organized.

Essential elements of CHBC

The essential elements of CHBC have been developed from case studies, research, observations from practice, and CHBC evaluations in various regions of the world. These essential elements are divided into seven main categories: provision of care; continuum of care; education; supplies and equipment; staffing; financing and sustainability; and monitoring and evaluation. Each of these broad categories has many subcategories that provide details of the important elements of sustainable and effective CHBC. To provide clarity, each category and subcategory stands alone. In reality, all these elements come together for holistic CHBC. The essential elements of CHBC outlined here are the ideal. Implementing all these elements at once might not be possible in resource-limited settings. However, this section provides guidance on what is important in establishing and maintaining CHBC in resource-limited settings. Case examples are included within this section to highlight how various CHBC programmes throughout the world have addressed some of the essential elements of CHBC.

Strategies for action in establishing and maintaining CHBC

This action phase uses a development process at the community level for establishing and maintaining CHBC programmes. Establishing new CHBC projects or scaling up existing programmes requires a systematic process of development. This systematic process includes: the entry phase; community assessment; needs assessment; planning; implementation, and evaluation. The elements identified in the previous three sections are revisited and placed within this action framework.

All four sections of this document raise questions to stimulate thought and discussion. The first section poses questions to guide policy formation. The second section raises issues that reflect the overall management and administration of CHBC. The final section raises questions to guide community groups in planning, implementing and evaluating CHBC programmes. Responses to all the issues raised should reflect the differing CHBC needs within each country, programme or community setting.

CHBC programmes are continually evolving as they respond to the changing needs of families. For example, in the beginning, most CHBC programmes focused on the care of ill people and family caregivers. As the AIDS epidemic continues to grow, orphan care is becoming a critical concern. The stage of the HIV/AIDS epidemic and the ratio of people with HIV/AIDS to those with other chronic and terminal illnesses therefore dictates different priorities.

This document provides guidance and suggestions to governments, international and national donor agencies, nongovernmental organizations (NGOs), faith-based organizations, community-based organizations and community groups as they undertake the important challenge of developing or scaling up effective and responsive CHBC in resource-limited settings.