Unit 11: Home and Community Based Care of PLWHA

A distance learning course of the Directorate of Learning Systems (AMREF)

© 2007 African Medical Research Foundation (AMREF)

This course is distributed under the Creative Common Attribution-Share Alike 3.0 license. Any part of this unit including the illustrations may be copied, reproduced or adapted to meet the needs of local health workers, for teaching purposes, provided proper citation is accorded AMREF. If you alter, transform, or build upon this work, you may distribute the resulting work only under the same, similar or a compatible license. AMREF would be grateful to learn how you are using this course and welcomes constructive comments and suggestions. Please address any correspondence to:

The African Medical and Research Foundation (AMREF)

Directorate of Learning Systems

P O Box 27691 – 00506, Nairobi, Kenya

Tel: +254 (20) 6993000

Fax: +254 (20) 609518

Email:

Website:

Writer: Dr Ingrid Van Acker

Cover design: Bruce Kynes

Technical Co-ordinator:Joan Mutero

The African Medical Research Foundation (AMREF wishes to acknowledge the contributions of the Commonwealth of Learning (COL) and the Allan and Nester Ferguson Trust whose financial assistance made the development of this course possible.

Contents

Introduction

Section 1: Concepts And Principles Of Home Based Care

Introduction

Objectives

The Concept of Home-Based Care and support

Components of Home-Based Care

Rationale for Home-based Care

Objectives and Principles of Home-based Care

Key Players / Providers of Home-based Care

Summary

Section 2: Community Mobilisation

Introduction

Section Objectives

Importance of Community Mobilisation

Community Resource Persons (CORPs) or groups

The Process of Community Mobilisation

Summary

Section 3: Mobilizing Resources For Home- based Care

Introduction

Objectives

Home- Based Care Needs at Various Levels

Needs of the Family and Caregivers

Resources Needed For Home-Based Care.

Summary

Section 4: Basic Nursing Care In The Context Of Home-Based Care

Introduction

Objectives

Components and Activities of Nursing Care

Home Care Kit

Activities To Ensure Good Personal And General Hygiene

Nursing Management of Common Conditions

Caring For the Child with HIV/AIDS

Infection Prevention in HBC

The Self Care Concept For The Client

Clinical Care

Drug Administration

Summary

Section 5: Psycho-social Support and Psycho-spiritual Care.

Introduction

Objectives

Psycho-Social Support

Counselling

Spiritual/pastoral care and support

Summary

Section 6: Referral And Networking Systems For Home-Based Care

Introduction

Section Objectives

Networking For Home-Based Care

Referral

Summary

References

1

Abbreviations

AIDS Acquired immune deficiency syndrome

ARC AIDS-related complex

ART Antiretroviral therapy

ARV Antiretroviral

C&T Counseling and testing

CBO Community-based organization

CHBC Community home-based care

HAART Highly active antiretroviral therapy

HBCHome-based Care

HCW Health care worker

HIV Human immunodeficiency virus

IECInformation, Education and Communication

IGAIncome Generating Activities

IV Intravenous

MTCT Mother-to-child transmission

NGONon-governmental Organisation

OI Opportunistic infection

OVCOrphans and Vulnerable Children

PLHA People living with HIV/AIDS

PMTCT Prevention of mother-to-child transmission

STI Sexually transmitted infection

TB Tuberculosis

VCTVoluntary Counselling and Testing

1

Unit 11: Home and Community-based Care of PLWHAs

Introduction

Dear Learner, welcome to Unit11of this course on integrated HIV/AIDS prevention, treatment and care. In the last Unit you covered the needs of HIV infected persons, the components of comprehensive care, ethical and legal issues and how we can reduce stigma and discrimination of people living with HIV/AIDS.

In this unit we are going to focus on Home-based care (HBC). We shall discuss concepts and principles of Home-based care, community mobilization, HBC needs and community resources, principles of infection prevention and control, the four components of HBC, effective management of HBC clients suffering from AIDS and how to support the referral network for Home-based care.

The unit is divided into the following 6 sections:

Section 1: Concept and principles of Home-based Care

Section 2: Community Mobilization for Home - based Care services

Section 3: Mobilizing resources within the community for Home-based Care Services

Section 4: Basic Nursing Care in the context of HBC

Section 5: Psycho-social support and psycho-spiritual care

Section 6: Referral and Networking systems

Let us now look at our objectives for this unit.

Unit Objectives

By the end of this unityou should be able to:

  • Explain the concepts and principles of Home-based care and the related activities;
  • Describe the process of mobilizing the community to provide support for community home-based care;
  • Describe the community resources needed for effective and sustainable Home-based care;
  • Apply the principles of infection prevention and control during Home-based care;
  • Discuss the four components of Home-based care: nursing care, clinical care, psycho-social support and psycho-spiritual care;
  • Manage the main symptoms of AIDS clients in HBC;
  • Understand the linkages of Home Based Care and other services and how to support an effective referral and networking system.

I am sure you are eager to start with the first section. Welcome!

Section 1: Concepts And Principles Of Home Based Care

Introduction

In the last two decades, there have been dramatic changes in the health needs of our populations due to the rise in non-communicable diseases, terminal illnesses, injuries leading to disability, and HIV/AIDS. These changes have led to an increase in the need for long-term care and the need for care to manage everyday living. To meet this challenge, the Ministry of Health in Kenyahas had to adopt a different approach to health sector policy and health care services. It has adopted the Home-based care approach. In this chapter, we shall discuss the concepts and principles of Home-based care. Let us start by looking at our objectives for this chapter.

Section Objectives

By the end of this sectionyou should be able to:

  • Discuss the concept of Home-based care;
  • Discuss briefly the major components of Home-based care;
  • Explain the rationale behind Home-based care;
  • Discuss the objectives and principles of Home-based care;
  • Discuss the advantages of Home-based care to different sections in the society;
  • Explain the roles of the various players in Home-based care.

The Concept of Home-Based Care and support

Weshall start by trying to understand the meaning of Home-based care.

ACTIVITY
How would you define Home-based care?
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I hope you thought of the following definition.

Home-based care is the care of persons with chronic or terminal illnesses, extended from the hospital or health facility to the patients’ homes through family participation and community involvement, within available resources and in collaboration with health care workers.

It is a holistic, collaborative effort bythe hospital, the family of the client, and the community, in order to enhance the quality of life of people living with HIV/AIDS (PLWHA) and those with other chronic disabling diseases (clients) and their families. In home base care, the care of the patients is extended from the hospital or health facility where they are initially seen to their homes. It is a comprehensive care across the continuum of care. This therefore implies that these patients require certain services. These services encompass clinical care, nursing care, counselling and psycho-spiritual care and social support. These services form the components of home-based care and are complementary. Actors in each team of service providers should understand the role of the other service providers.

Components of Home-Based Care

There are four components of comprehensiveHome-based care. They include the following:

  • Clinical Care: comprises early diagnosis, rational and targeted treatment and planning for the follow-up care. The patients and clients who are assessed and referred for home-based care need the continuum of care extended rationally. If a patient has not been well diagnosed and treated, don’t you think the purpose and spirit of home-based care would be defeated?

ACTIVITY
Can you think of reasons why a patient may not receive good quality Home-based care?
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Well, I hope you thoughtofthe complications that may arise from the disease that the patient issuffering from. When a patient is well diagnosed and rationally cared for at a health facility, it is easier to anticipate and plan for complications and how to manage them.

  • Nursing Care: Includes care to promote and maintain good health, hygiene and nutrition. It is your responsibility as a health care worker to provide this care and extend it to the home. By training family and community members, it is possible to extend the continuum of care to the home. Don’t forget that all those patients whom we discharge from hospital with residual effects of diseases and complications need further care and families, friends and community can provide some form of nursing care. In Home-based care, we try to extend care by contributing our skills together with other professionals and also training family and community members to give care to those that require it.
  • Counselling and Psycho-spiritual care: The main aim of providing care to people with chronic and terminal illnesses and injuries is to prolong their life and make it bearable. This cannot happen unless there is positive living and decisions are made on the basis of informed choice. Counselling and psycho-spiritual care reduces stress and anxiety for both the clients and their families. It also helps individuals to make informed decisions on HIV-testing, plan for the future, make behavioural changes, make risk reduction plans and involve sexual partner(s) in such decisions.
  • Social support: On many occasions when we discharge patients from health facilities, we fail to realize the network of social and support services that they can benefit from.

ACTIVITY
What services and support institutions does a HIV/AIDS patient who has been discharged need? List them down below.
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Well, they need information and referral to support groups such as church organizations, youth groups and other social organizations. They also need to be referred to welfare services provided by social workers, children's department and other services, which may be provided by various governmental and non-governmental organizations. These individuals and their families may also require legal advice and material assistance. You should never forget that these services compliment the care we give in our health facilities.

Well, we shall revisit these components in further detail in sections 5, 6 and 7 of this unit.

The concept of Home-based care as you may have realized does not just address any disease condition but is intended for debilitating diseases that make patients unable to care for themselves. In HIV/AIDS for instance, we do not provide HBC to those who are HIV positive but to those with advanced AIDS illness. HBC concerns those who are sick but still able to care for themselves as well as those who are bedridden and unable to care for themselves.

So far we have looked at the definition and explained briefly the four components of home bases care. Before we go further, let us first ask ourselves the following questions. Why Home-based care? Why can’t clients for Home-based care stay in the health facility and be cared for by trained health care practitioners? What these questions are really seeking is the rationale behind HBC. Well let us look at the rationale for HBC.

Rationale for Home-based Care

I am sure you are well aware of the big problem presented by HIV/AIDS to the health care services in our country. Demand for health services has increased due to the increasing numbers of individuals who have become ill as a result of HIV infection. This has resulted in increased workload and congestion of health facilities. Hospital bed occupancy rates have increased with over 55% of beds occupied by PLWA. Apart from HIV/AIDS, other chronic diseases such as cancer have made people require long-term care.

In addition, to the above, there are other reasons why the Home-based concept has been adopted. It has been noted that:

  • People with AIDS and other debilitating illnesses are discharged from health institutions where there are trained professionals and sent home to be cared for by untrained relatives with no professional back up support;
  • The care givers at home often are women with no training in nursing or how to protect themselves from risks related to infections and injuries as a result of the care they give;
  • People with chronic debilitating illnesses for example HIV/AIDS need continuity of care to prolong their lives and reduce their suffering;
  • Health institutionshave many limitations such as shortage of health workers, limited hospital beds and a shortage of other material resources.

This means that many clients have failed to get the quality care that they deserve. Taking intoconsiderationthese reasons, the following objectives and principles of Home-based care were adopted.

Objectives and Principles of Home-based Care

Let us start by looking at the objectives of Home-based care.

Objectives of a Home-based care program

The main objectives of theHBC program are to:

  • facilitate the continuity of the client’s care from the health facility to the home and community;
  • promote family and community awareness of disease prevention and care related to chronic illnesses;
  • empower the clients, the family and the community with the knowledge needed to ensure long-term care and support;
  • raise the acceptability of PLWHAs by the family/community, hence reducing the stigma associated with AIDS;
  • streamline the patient/client referral from the institutions into the community and from the community to appropriate health and social facilities;
  • facilitate quality community care;
  • mobilize the resources necessary for sustainability of the service.

To ensure that the foregoing benefits are realized, home-based care should be regarded as a holistic system of care with provisions for the following principles or ideologies. These principles need to be well understood as they are the basis of the HBC program.

Principles of Home-based Care

The principles of home-based care include the following:

  • Ensuring appropriate, cost-effective access to quality health care and support to enable persons living with HIV/AIDS and other clients to retain their self-sufficiency and maintain quality of life;
  • Encouraging the active participation and involvement of the client and their family;
  • Fostering the active participation and involvement of those most able to provide support to the community at all levels;
  • Targeting social assistance to all affected families especially children including orphans and vulnerable children (OVC) ;
  • Caring for caregivers, in order to minimize the physical and spiritual exhaustion that can come with the prolonged care of the terminally ill;
  • Ensuring respect for the basic human rights;
  • Developing the vital role of home-based care as the link between prevention and care;
  • Taking a multi-sector approach to care and support;
  • Addressing the reproductive health and family planning needs of persons living with HIV/AIDS;
  • Instituting measures to ensure the economic sustainability of home care support;
  • Building and supporting referral networks/linkages and collaboration among participating entities;
  • Building capacity at the household, community and institutional levels;
  • Addressing the differential gender impact of the HIV/AIDS epidemic and care for persons living with HIV/AIDS.

We hope you now understand the rationale behind home-based care, its objectives and principles. Let us now move on to look at the advantages of Home-based care.

Advantages of Home-based Care

Before you continue reading stop for a while and do the following Activity. It should take you less than 5 minutes to complete.

ACTIVITY
List down the advantages of home based care
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Many studies have shown that Home-based care has a positive impact on the social, economic, psychological and physical well being of the patient, the family, the community and the general health care system. Let us look at the advantages of HBC to each of these sections of society, starting with the patient or client.

The following are the advantages of HBC to the client, family, community and health care system.

To the client

  • The patient is cared for in a familiar environment. Such a patient usually suffers less stress and anxiety compared to the one in hospital, clinic or nursing home. When people are in a familiar environmenttheir illness is more tolerable;
  • When people are in their homes, they continue to participate in family matters. Those who are heads of their families continue doing so and can be consulted on various family issues. It is quite difficult when one is in hospital or a clinic to make a decision about, for example, which goat to sell in order to pay for school fees or which part of the farm should be tilled;
  • When one is at home close to family members, friends and relatives, there is a sense of belonging. This is not the case if one is in a hospital setting where the caregivers are strangers who keep changing with every shift;
  • Finally when one is in close contact with familiar people they are likely to accept their conditions and illnesses. The acceptance contributes to quicker recovery or in the case of HIV/AIDS it may assist in better management of the syndrome. What about the family? Let us next look at the advantages to the family.

To the family