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CARE IN RESOURCE-LIMITED - World Health …

community HOME-BASEDCARE IN resource -LIMITEDSETTINGSA FRAMEWORK FOR ACTIONPUBLISHED COLLABORATIVELY BYTHE CROSS CLUSTER INITIATIVE ON HOME-BASED LONG-TERM care ,NON-COMMUNICABLE DISEASES AND MENTAL Health ANDTHE DEPARTMENT OF HIV/AIDS, FAMILY AND community Health , World Health ORGANIZATIONISBN 92 4 156213 7 community HOME-BASED care IN RESOURCE-LIMITED SETTINGSA FRAMEWORK FOR ACTION1 community HOME-BASEDCARE IN resource -LIMITEDSETTINGSA FRAMEWORK FOR ACTIONPUBLISHED COLLABORATIVELY BYTHE CROSS CLUSTER INITIATIVE ON HOME-BASED LONG-TERM care ,NON-COMMUNICABLE DISEASES AND MENTAL Health ANDTHE DEPARTMENT OF HIV/AIDS, FAMILY AND community Health , World Health ORGANIZATION2 community HOME-BASED care IN RESOURCE-LIMITED SETTINGSWHO Library Cataloguing-in-Publication DataCommunity home-based care in RESOURCE-LIMITED settings: a framework for Home care services - organization and administration 2. community Health services -organization and administration 3.

community home-based care in resource-limited settings a framework for action published collaboratively by the cross cluster initiative on home-based long-term care,

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1 community HOME-BASEDCARE IN resource -LIMITEDSETTINGSA FRAMEWORK FOR ACTIONPUBLISHED COLLABORATIVELY BYTHE CROSS CLUSTER INITIATIVE ON HOME-BASED LONG-TERM care ,NON-COMMUNICABLE DISEASES AND MENTAL Health ANDTHE DEPARTMENT OF HIV/AIDS, FAMILY AND community Health , World Health ORGANIZATIONISBN 92 4 156213 7 community HOME-BASED care IN RESOURCE-LIMITED SETTINGSA FRAMEWORK FOR ACTION1 community HOME-BASEDCARE IN resource -LIMITEDSETTINGSA FRAMEWORK FOR ACTIONPUBLISHED COLLABORATIVELY BYTHE CROSS CLUSTER INITIATIVE ON HOME-BASED LONG-TERM care ,NON-COMMUNICABLE DISEASES AND MENTAL Health ANDTHE DEPARTMENT OF HIV/AIDS, FAMILY AND community Health , World Health ORGANIZATION2 community HOME-BASED care IN RESOURCE-LIMITED SETTINGSWHO Library Cataloguing-in-Publication DataCommunity home-based care in RESOURCE-LIMITED settings: a framework for Home care services - organization and administration 2. community Health services -organization and administration 3.

2 Policy making 4. Consumer participation 5. GuidelinesISBN 92 4 156213 7(NLM classification: WY 115) World Health Organization 2002 All rights reserved. Publications of the World Health Organization can be obtained from Marketing and Dissemi-nation, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel: +41 22 791 2476; fax:+41 22 791 4857; email: Requests for permission to reproduce or translate WHO publica-tions whether for sale or for noncommercial distribution should be addressed to Publications, at the aboveaddress (fax: +41 22 791 4806; email: designations employed and the presentation of the material in this publication do not imply the expression ofany opinion whatsoever on the part of the World Health Organization concerning the legal status of any country,territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries.))

3 Dotted lineson maps represent approximate border lines for which there may not yet be full mention of specific companies or of certain manufacturers products does not imply that they are endorsed orrecommended by the World Health Organization in preference to others of a similar nature that are not and omissions excepted, the names of proprietary products are distinguished by initial capital World Health Organization does not warrant that the information contained in this publication is completeand correct and shall not be liable for any damages incurred as a result of its named authors alone are responsible for the views expressed in this document is founded on research, conceptual development, observations of practice and relevant communityhome-based care literature. The people who played an important role in informing this work and who were responsiblefor the development of this document include:PROJECT MANAGERM iriam Hirschfeld, Long-term and Home-based care (CCL) Director, Noncommunicable Diseases and MentalHealth (NMH), WHO, Geneva, SwitzerlandPRINCIPAL RESEARCHER AND AUTHORE lizabeth Lindsey, Short-term Consultant, WHO, Geneva, Switzerland.

4 Emeritus Professor, University of Victoria, BC, CanadaRESEARCH TEAMSB otswanaSheila Tlou, Eiphraim Ncube and Kyle Mudongo (University of Botswana) and Koketso Rantona and SewaBale (SWAABO)KenyaElizabeth Ngugi, Violet Kimani, Mutuku Mwanthi and Joyce Olenja (University of Nairobi)ThailandWilawan Senaratana, Wichit Srisuphun, Prayong Limtragool, Thanaruk Suwanprapisa,Chomnard Potjanamart, Pornpun Subpaiboongid and Pikul Nunthachaipun(Faculty of Nursing, University of Chiang Mai)HaitiLisa Mbele-MbongCambodiaWilliam Pigott, WHO Regional Representative, Cambodia and Pamela Messervy, Programme ManagementOfficer, WHO, Phnom PenhThe conceptual frameworks for policy development in the first two sections of this document are based uponthe work by Jenny Brodsky, Jack Habib and Ilana Mizrahi at the Brookdale Institute, Israel on long-term carelaws in industrialized COMMITTEE MEMBERSThe members of the Steering Committee were responsible for reviewing and critiquing this document at intervalsduring its development.

5 Their vast experience in CHBC and their willingness to critique this document providedguidance and support to the author. They include: Sandra Anderson, Senior Programme Development Advisor,UNAIDS Intercountry Team for Eastern and Southern Africa; Miriam Hirschfeld, Long-term and Home-based care (CCL) Director, Noncommunicable Diseases and Mental Health , WHO, Geneva, Switzerland; Vincent Habiyambere,Department of HIV/AIDS, Family and community Health , WHO, Geneva, Switzerland; Janet Cornwall, SERVANTSHome and community Based care , Phnom Penh, Cambodia; Ruth Stark, WHO Regional Representative, PapuaNew Guinea; Lucy Steinitz, Catholic AIDS action , Windhoek, Namibia; Virginia O Dell, care Unit, Departmentof HIV/AIDS, Family and community Health , WHO, Geneva, Switzerland; and Evelyn Isaacs, WHO HIV/AIDSCare and Support Team, WHO Regional Office for Africa, Harare, Zimbabwe, acknowledge the role of the research respondents in Botswana, Kenya, Haiti, Cambodia and Thailand.

6 Thisdocument would not have been possible without their willingness to share their experiences in CHBC. Theserespondents took time to talk with the researchers although most had poor living conditions and overwhelmingcaregiving thanks to the UNAIDS Intercountry Team for Eastern and SouthernAfrica for their help in making this document HOME-BASED care IN RESOURCE-LIMITED SETTINGSE xecutive summary_____6 Introduction_____8A policy framework for CHBC_____10 Nature of the programme_____ 1 1 Eligibility criteria_____ 1 3 Eligibility assessment_____ 1 4 Benefits_____ 1 5 Programme operation_____ 1 7 Financing_____ 1 9 Coverage_____ 2 0 Cost_____ 2 0 Roles and responsibilities for CHBC at thenational, district and local levels_____23 National-level responsibilities_____ 2 3 District-level responsibilities_____ 2 5 Local-level responsibilities_____ 2 7 Essential elements of CHBC_____33 Introduction_____ 3 3 Provision of care_____ 3 5 Basic physical care_____ 3 5 Palliative care_____ 3 6 Psychosocial support and counselling_____ 4 0 care of affected and infected children_____ 4 2 Continuum of care_____ 4 6 Accessibility_____ 4 6 Continuity of care_____ 4 8 Knowledge of community resources_____ 5 0 Accessing other forms of community care_____ 5 0 community coordination_____ 5 0 Record-keeping for ill people_____ 5 0 Case-finding_____ 5 0 Case management_____ 5 2 Education_____ 5 4 Curriculum development_____ 5 4 Educational management and curriculum delivery_____ 5 4 Outreach_____ 5 5 Education to reduce stigma_____ 5 5 Mass media involvement_____ 5 6 Evaluation of education_____ 5 6 Supplies and equipment_____ 5 8

7 Location of the CHBC team_____ 5 8 Health centre supplies_____ 5 8 Management, monitoring and record-keeping_____ 5 9 Home-based care kits_____ 6 0 Staffing_____ 6 0 Supervising and coordinating CHBC_____ 6 0 Recruitment_____ 6 0 Retaining staff_____ 6 25 Financing and sustainability_____ 6 6 Budget and financial management_____ 6 6 Technical support_____ 6 7 community funding_____ 6 7 Encouraging volunteers_____ 6 8 Pooling resources_____ 6 8 Out-of-pocket payments_____ 6 8 Free services_____ 7 0 Monitoring and evaluation_____ 7 0 Quality assurance_____ 7 0 Quality of care indicators_____ 7 2 Monitoring and supervision_____ 7 4 Informal evaluation_____ 7 4 Formal evaluation_____ 7 4 Flexibility_____ 7 4 Establishing and maintaining CHBC _____76 The entry phase: community assessment_____ 7 6 The structure of the Health and social welfare system____ 7 8 community agencies and organizations_____ 7 8 Past history_____ 7 9 Physical characteristics of the community_____ 7 9 Population_____ 8 0 Economy_____ 8 1 Power structures_____ 8 1 The needs assessment phase_____ 8 2 Assessing the needs of the target group_____ 8 3 Gaining acceptance and assessing community needs_____ 8 3 Choosing priorities_____ 8 4 Gaining commitment to action_____ 8 5 The planning phase_____ 8 5 Who should be involved in the planning process?

8 _____ 8 5 Identifying and assigning tasks_____ 8 6 Developing goals and objectives for the programme_____ 8 7 Working out the details for implementation_____ 8 7 The implementation phase_____ 8 8 Provision of care_____ 8 8 Continuum of care_____ 8 8 Staffing_____ 8 9 Education_____ 8 9 Supplies and Equipment_____ 8 9 Funding_____ 9 0 Evaluating the process and outcome of CHBC_____ 9 0 Informal evaluation_____ 9 0 Formal or outcome evaluation_____ 9 1 Support and reinforcement as changes are made_____ 9 1 Celebrating success and the people involved_____ 9 2 Continuing the evaluation process_____ 9 2 Conclusion_____95 Bibliography_____986 community HOME-BASED care IN RESOURCE-LIMITED SETTINGSEXECUTIVE SUMMARYThis document provides a systematic framework for establishing andmaintaining community home-based care (CHBC) in resource -limitedsettings for people with HIV/AIDS and those with other chronic or disablingconditions.

9 Most CHBC services so far have been established throughunsystematic, needs-based efforts. As the HIV/AIDS epidemic continues togrow, many organizations and communities are now considering expandingin a more programmatic approach, and countries are looking for scaled-upresponses and national strategies for CHBC. This document therefore providesan important framework to guide governments, national and international donoragencies and community -based organizations (including nongovernmentalorganizations, faith-based organizations and community groups) in developingor expanding CHBC programmes. The need for such a document has beenclearly is defined as any form of care given to ill people in their homes. Such careincludes physical, psychosocial, palliative and spiritual activities. The goal of CHBCis to provide hope through high-quality and appropriate care that helps ill people andfamilies to maintain their independence and achieve the best possible quality of document targets three important audiences: policy-makers and senioradministrators, middle managers and those who develop and run CHBC the roles and responsibilities of these target audiences differ somewhat,developing effective partnerships among the three is essential.

10 Policy-makers andsenior administrators must be involved in developing and monitoring CHBC programmes, and the people who manage and run the programmes must shareinformation and feedback with senior administrators. In this sense, policy and actionare interrelated as each partner learns from and guides the other. To this end, thisdocument is divided into four interrelated sections: a policy framework for CHBC;the roles and responsibilities for CHBC at the national, district and local levels ofadministration; the essential elements of CHBC; and the strategies for action inestablishing and maintaining CHBC in RESOURCE-LIMITED settings. A brief overviewof each of these sections policy framework for CHBCThis framework is a systematic approach for policy-makers, senioradministrators and government decision-makers to follow in developing theoverall policies and guidelines for CHBC. The framework is divided into eightdiscrete categories: the nature of the programme, eligibility criteria, eligibilityassessment, benefits, programme operation, financing, coverage and cost.


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