Section 2 DE : HOME BASED CARE
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: amreftraining@
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 1
Section 1: Concepts And Principles Of Home Based Care 3
Introduction 3
Objectives 3
The Concept of Home-Based Care and support 3
Components of Home-Based Care 4
Rationale for Home-based Care 6
Objectives and Principles of Home-based Care 7
Key Players / Providers of Home-based Care 11
Summary 15
Section 2: Community Mobilisation 16
Introduction 16
Section Objectives 16
Importance of Community Mobilisation 17
Community Resource Persons (CORPs) or groups 20
The Process of Community Mobilisation 22
Summary 24
Section 3: Mobilizing Resources For Home- based Care 25
Introduction 25
Objectives 25
Home- Based Care Needs at Various Levels 25
Needs of the Family and Caregivers 27
Resources Needed For Home-Based Care. 29
Summary 36
Section 4: Basic Nursing Care In The Context Of Home-Based Care 37
Introduction 37
Objectives 37
Components and Activities of Nursing Care 37
Home Care Kit 39
Activities To Ensure Good Personal And General Hygiene 42
Nursing Management of Common Conditions 50
Caring For the Child with HIV/AIDS 56
Infection Prevention in HBC 57
The Self Care Concept For The Client 61
Clinical Care 63
Drug Administration 64
Summary 65
Section 5: Psycho-social Support and Psycho-spiritual Care. 66
Introduction 66
Objectives 66
Psycho-Social Support 66
Counselling 70
Spiritual/pastoral care and support 73
Summary 75
Section 6: Referral And Networking Systems For Home-Based Care 76
Introduction 76
Section Objectives 76
Networking For Home-Based Care 76
Referral 78
Summary 83
References 84
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
HBC Home-based Care
HCW Health care worker
HIV Human immunodeficiency virus
IEC Information, Education and Communication
IGA Income Generating Activities
IV Intravenous
MTCT Mother-to-child transmission
NGO Non-governmental Organisation
OI Opportunistic infection
OVC Orphans and Vulnerable Children
PLHA People living with HIV/AIDS
PMTCT Prevention of mother-to-child transmission
STI Sexually transmitted infection
TB Tuberculosis
VCT Voluntary Counselling and Testing
Unit 11: Home and Community-based Care of PLWHAs
Introduction
Dear Learner, welcome to Unit 11 of 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 unit you 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 Kenya has 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 section you 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
We shall start by trying to understand the meaning of Home-based care.
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|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 by the 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 comprehensive Home-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?
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|Can you think of reasons why a patient may not receive good quality Home-based care? |
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Well, I hope you thought of the complications that may arise from the disease that the patient is suffering 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.
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|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 institutions have 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 into consideration these 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 the HBC 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.
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|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 environment their 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
• Care given in the home can be less expensive than that in the hospital. You are aware that patients will pay for bed charges, food and other items, which will normally be available and shared at home;
• Makes it easy to provide care and support to the client while attending to other responsibilities;
• Caring for sick people at home prevents separation and holds family members together. I am sure you have heard of patients being divorced or separated because of illness. Others get into adulterous relationships because their spouses are not at home. This can be prevented through Home-based care;
• When family members are given education and information on diseases, it helps them to understand these diseases better and accept the patients;
• Enables family members to be present at the time of death.
To the community
• Training in home-based care helps community members to be aware of the various illnesses affecting members of their communities.
• Helps the community to understand the nature of the disease and counteract myths, beliefs and misconceptions especially in relation to HIV/AIDS and other diseases;
• The costs of going to visit a person who is sick in hospital are reduced;
• Makes it easier and convenient to provide support;
• Community cohesiveness is maintained. This ensures that the community is able to respond to other members' needs.
To the Health Care System
• HBC improves access to quality care: There are areas where a hospital is not accessible to some people. Imagine a bedridden client suffering in a village in Turkana which is hundreds of kilometres away from the nearest health facility. How can this person’s wounds or sores be prevented and properly dressed or how can he be offered basic nursing care like bathing within the home environment? This can be achieved through training of caregivers in home- based care;
• HBC reduces the pressure on the already overcrowded hospital services and hence the health system. Through care at the home, hospitals will have fewer people to attend to and as such they will be able to have more time to provide quality services to those patients who require short-term care;
• Reduces the workload of the health care providers. One of the obstacles within the health system in Kenya is limited human resources. HBC helps to overcome this constraint.
• Helps to reduce demand on the health facility under limited resources
Having looked at advantages of Home-based care let us now find out who are the key players in HBC.
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Figure 11.1: Diagram of a patient being cared for at home.
Key Players / Providers of Home-based Care
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|Who are the key players / providers in Home-based care? |
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I hope your answer included the following key providers of home-based care:
• The patient or client
• Family members and care givers
• Home care team
• Health workers
• Community
• Government
All of these providers have a role to play in the delivery of HBC. Some aspects of the roles are unique to the specific players, but others may overlap to some extent. Every function is important, and none should be thought inferior to the others, because they all make vital contributions to the total home-based care system.
Let us look at each player and consider their role.
Role of the patient
The patient is one of the main players in home-based care. When the patients are not very sick, they may provide their own care. However, in some cases they are too sick and require somebody else to care for them. Their role in HBC is to:
• Identify the primary or alternative caregiver;
• Participate in the care process, but not passively, especially in making decisions on own welfare;
• If possible, give consent on caregivers and where the care will be provided, for example, home or hospital especially during the terminal phase of the disease
Role of Family members and care givers
The sick person's family members, relatives, friends and other care givers play an important role in the provision of home-based care. Their role is to:
• Learn to accept and adjust to the situation, including that of the terminally ill with AIDS
• Collaborate with other care providers, for example, religious institutions, support groups, health and social institutions
• Be able to volunteer or agree on other possible caregivers to be involved in providing the services in the family. This becomes shared responsibility on issues of referral and networking
• Learn to consult with the clients on matters concerning them
• Involve the client in all care activities and any other family activities without discrimination
• Emphasize the need to prepare for death as inevitable and sensitise the client about the importance of ensuring the continuing care of family members who are left behind
• Encourage and help the client to write a will
• Remember that being present is a major support
Role of Home Care Team
Home care teams are supervised by a medical or social work professional, and may be associated with a local or health centre or community organization. They are organized to provide a variety of services to clients and their families. The community health worker is a key member of this team.
The Home Care teams should be able to:
• Manage AIDS-related and the client’s disease-related conditions
• Provide home nursing care
• Arrange voluntary HIV counselling and testing
• Provide supportive counselling
• Refer the patients for further specialized care such as treatment, radiotherapy, counselling, and emotional/spiritual support ;
• Educate PLWHA/client/family on HIV/AIDS and other related diseases
• Arrange spiritual/pastoral care
• Mobilize material support
• Train the caregiver on all HBC services.
• Provide supervision of the caregiver.
• Train the clients on how to care for themselves.
Role of Health Workers
Their role is to:
• Initiate and market the HBC process by recruiting the PLWHA/clients to the programme; identifying needs at various levels, and preparing the PLWHA/client for discharge home.
• Prepare and educate the family caregiver for the caring responsibility at home.
• Make initial diagnosis, institute relevant nursing and medical care, help identify psychological and social needs.
• Initiate referral and networking systems, which may change over time as the client’s condition and needs change.
• Care for the terminally ill depending on their wish.
Role of the Community
• Accept the situation of the PLWHA/client and learn to collaborate and work with existing agencies around to meet the needs of those infected/affected such as religious groups, women’s groups, and other social and health agencies
• Prepare a Memory Book to provide their children with family history and a tangible record of caring
• Encourage the client to write a will
• Identify own spiritual/pastoral needs
• Be open to the caregiver and share any worries
• Take personal responsibility to prevent further transmission of HIV
• Advocate for behaviour change
Role of the Government
• Create a supportive policy environment
• Develop policies and guidelines
• Develop and maintain standards
• Provide/coordinate training
• Provide drugs and commodities
• Help in the formation of support groups, which in turn would lobby and advocate for the rights of the PLWHA.
In order to succeed in your role in HBC, you need to cooperate with the other providers of HBC in your community. You must link the patient or client to the available support services right from the beginning when you identify that the patient needs Home-based care. Let us now look at the process of linking patients to support services.
The process of linking patients to support services involves:
• Assisting patients and their families to identify the support that is needed.
• Identifying groups/agencies/individuals that can provide the support
• Informing patients about the existence of the individuals, agencies and the services that are offered
• Introducing the identified agencies and individuals to the patients and their families.
• Helping patients to evaluate the individuals and agencies and allowing them to close those who meet their needs.
• Helping them set up home visits and transportation if needed.
• Following up to ensure that there is coordination of services.
In the next section, we will look closer at how to make operational the Home-based care Referral and Networking system.
Summary
You have now come to the end of section one. We have so far covered the Home-based care concept, its’ components, objectives and principles, and advantages. You have also learnt who are the key players or providers of HBC and what are there roles. Understanding the roles of the providers, you should now understand how you can go about linking HBC patients or clients to support services in the community. In the next chapter we will explain in detail how to mobilize the community for HBC services.
Section 2: Community Mobilisation
Introduction
Welcome to the second section in our unit on home-based care. Having understood the concept and principles of HBC and the different roles of the providers we will now proceed with this important section on community mobilisation. Let us first have a look at our objectives.
Section Objectives
By the end of this section you should be able to
• Define community mobilization;
• Explain the importance of community mobilization;
• Understand factors that can hinder community mobilisation and find solutions;
• Identify key resource persons;
• Describe the process of community mobilization.
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|How would you describe community mobilization? |
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Community mobilization is the process of putting everybody ready for action. It refers to a process where members of a community who share concerns or problems form groups and work together to improve their situation.
Home-based care is provided to clients in their communities. Communities are therefore required to initiate and sustain activities which support it. The community must participate and get involved in the decision making process. They must also take part in the planning, organization, implementation and monitoring of activities associated with home-based care. The community HBC implies the use of locally available resources. The approach we are using here is referred to as the Bottom - Up.
I am sure the concept of community mobilisation is not new to you and you may have covered it before. If you have, then you can consider this as revision. You may even gain more knowledge on how to improve in your actions. If it is the first time, then learn it well.
Importance of Community Mobilisation
When you start a programme such as home-based care in the community, you must involve the community right from the start. If you explain the HBC concept well and the community understands the advantages they will know that home-based care is intended to help them and their families. When this happens, they feel motivated and willing to invest their energy and resources to continue with the programme. This increases their participation and makes the project their own.
Before you continue reading do the following Activity. Do not spend more than 10 minutes to answer this activity.
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|List down reasons why we need community mobilization |
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Now read through the section below and see if your ideas are included.
The importance of community mobilization is to:
• Prepare the community for participatory action and involvement;
• Create awareness about the problems that your clients are suffering from, for example HIV/AIDS;
• Identify problems together with the community and seek means of solving them;
• Gather information about local resources, community beliefs and misconceptions;
• Establish relationships within the community.
In the context of home-based care for PLWHA it has the following advantages:
• It helps to counter the stigma PLWHAs and their families face, so that they can live without fear or discrimination;
• It involves the PLWHAs themselves and helps them to “live positively”;
• It can increase community awareness and thus helps prevent the further spread of HIV;
• It facilitates the mobilization of local resources and it brings the community together in the care of PLWHAs, AIDS orphans, and others;
• It leads to community empowerment, ownership and sustainability of the services.
However to be able to start your community mobilisation you have to understand factors that could hinder the start of this process and find possible solutions.
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These factors will be different for each community but here are the most important ones:
• Lack of appropriate information on the HBC programme;
• Lack of resources;
• Poor management and/or mismanagement;
• Insecurity;
• Lack of social structure;
• Communication barriers;
• Poor health;
• Lack of surety of ownership and sustainability;
• Lack of interest;
• Poor infrastructure;
• Lack of knowledge of other partners;
• Social differences (religious, education, cultural, economic, political, tribal);
• Poor leadership;
• Man-made or natural disasters. For example bad weather and famine make some communities shift from one area or shift their attention;
• Poor timing in organising the activities.
Many of these factors are interrelated and all of them should be addressed when finding solutions.
Let us have a look at some possible solutions.
• Training and skills development;
• Provision of relevant IEC materials. When sensitizing the community, you can give out handouts, use film and other media and make public announcements through radio programmes about the diseases to ensure adequate knowledge and motivation;
• Involvement of target group to design appropriate information;
• Encourage IGA and related skills development;
• Identification and use of appropriate communication channels/methods;
• Ensuring participation and involvement from the beginning;
• Sensitisation and education;
• Countering negative attitudes by some people by involving their friends and relatives;
• Seminars and workshops for the leaders;
• Explaining the disadvantages of not participating;
• Putting in place mechanisms for disaster preparedness;
• Proper planning of activities;
• Having frequent meetings, discussions and involvement among health facility staff, community members and other stakeholders;
• Encourage team work.
Don’t forget that each of these solutions can not be looked upon in isolation and all of these actions should be considered in overcoming the hindering factors that can occur in the process of mobilising the community.
Community Resource Persons (CORPs) or groups
Always, in order to be effective at mobilizing the community you should start from the top. This gives the leaders their recognition and also allows them to use their influence to get the people together.
I hope though that by now you have understood that community mobilisation by itself is a “bottom – up” approach as we are empowering the community to plan for their future activities. However within the identification of community resource persons the “up-down” approach need to be used so as to ensure that you have your community leaders involved from the very beginning. Orienting local leaders to the program and holding meetings will ensure their ownership and cooperation. Make sure you have included leaders and organisations/ groups that can participate and provide support to the HBC services.
Before you read any further, do the following activity.
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|List community resource persons in the catchment area where you work and with who you could work in order to promote the HBC programme |
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The key community resource persons or groups with whom you can work in order to promote home-based care activities are:
• Local administrative officers and leaders such as chiefs, assistant chiefs, councillors and area members of parliament;
• Leaders of various programmes for example district AIDS control committee;
• Religious leaders;
• Organized groups, religious groups (Women’s guild), youth groups, women groups e.g. the Maendeleo ya Wanawake Organization;
• Community based health workers, traditional birth attendants and traditional healers;
• School teachers;
• Patients / clients / PLWHA themselves;
Now that you have identified your key resource persons, here are a variety of ways that can be used to mobilize the community for home-based care services:
• Meeting at specific prefixed times with key persons, existing committees and community groups such as village development committee;
• Home visits to talk to individuals and families;
• Announcements at churches, mosques, temples, schools and market places;
• Group community talks.
You will have to decide yourself which is the most appropriate way in your community.
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Figure 11.2: Mobilizing the community for home-based care is important
Source: Home care Handbook: A Reference Manual for Home-Based Care for People Living with HIV/AIDS in Kenya, Ministry of Health, Kenya
Let us now look at the process of community mobilization or how we can put it into action.
The Process of Community Mobilisation
There are four steps involved in community mobilisation. These are:
Step 1: Planning and organising yourself for community mobilization;
Step 2: Entering the community to mobilise the people;
Step 3: Conducting community mobilisation sessions;
Step 4: Monitoring the community response and making reinforcements for action.
Let us discuss each step in detail.
Step 1: Planning and organising yourself for community mobilization
The first step in community mobilization is to plan and organise yourself for the exercise. This you do by:
- Knowing about and believing in home-based care so that you can explain it very well to the people of your community;
- Knowing the community leadership and those who can influence the acceptance and implementation of home-based care services;
- Identify traditional beliefs/myths/misconceptions, which are interfering with Home-based care;
- Preparing one self psychologically, emotionally and physically for involvement/commitment to work with PLWHAs and chronically sick clients. Most of them are people who are coping with a terminal illness;
- Identifying resources and preparing them for community mobilisation according to the rationale and objectives of home-based care services. Making arrangements such as the venue according to the plan or process you have decided on, which can be home visits, community gatherings, or church/mosque/temple meetings;
- Sending out information to the relevant persons involved, for example, to the leaders, depending on where you have decided to begin mobilisation;
- Confirming appointment date and time; be on time and do not keep people waiting.
Step 2: Entering the community to mobilise the people
As a community health worker, you are already well known. Because you have been working in the community, this may not be a complicated step. Nevertheless, home-based care is a different activity from your normal duties, so take care to plan carefully. Depending on the mode, venue and type of group or individual you have decided to mobilise, it is important to note the following. Remember to show respect to the community and individuals and be willing to acknowledge and deal with the different feelings about home-based care services.
The first and second step in the process of community mobilisation are to organise yourself to enter the community and to mobilise people. You cannot succeed unless you get people to understand what home-based care is. Don’t forget that they can become the people who will act as advocates of home-based care. Community members must clearly know your role as well as theirs. Otherwise, they will view you with suspicion. The members must also know the importance of their actions. They need to understand what they stand to gain from the process in the short term and long term. If people do not understand their role and why they should participate they may withdraw thus causing the initiative to die out immediately you leave. Community based health activities of which Home-based care is one of them can die out if there is no motivation.
Step 3: Conducting community mobilisation sessions
• Greet people according to their culture;
• Find out what they know about home-based care. Do not assume that they do not know anything; they could have experiences that may be useful for the programme;
• Give correct and complete information about home-based care services;
• Allow the group/individual to express fears, make contributions and suggest approaches. Together with them make practical agreements on the way forward.
Step 4: Monitoring the community response and making reinforcements for action.
The fourth and final step involves monitoring the community response and making arrangements for action. This you do by:
• Watching for signs of acceptance of home-based care, for example for PLWHAs:
- Community asking for more information about home-based care
- Community taking interest in supporting the activities for PLWHAs
- People volunteering to act or work with the community health workers
- People voluntarily seeking assistance to take care of PLWHAs
• Acknowledging the positive responses and finding out more about the reasons for negative responses in order to clarify issues and further enlighten those concerned
• Finally, giving feedback to the relevant persons concerned, such as your immediate supervisor.
Now that you have learnt about community mobilization, you should be familiar with the following concepts:
• Community sensitization and motivation;
• Community involvement and participation;
• Community ownership and empowerment;
Summary
In this section we looked at the definition of community mobilisation and why it is important in setting up HBC. We learnt about factors that can hinder the mobilisation of the community for HBC and have looked at possible solutions. We also described the different types of community resource persons who can assist you in implementing home-based care. Lastly, we described the four steps in the process of community mobilisation. I hope you have found this section interesting and informative.
In the next section we shall look at the home based care needs at various levels and what resources are required to meet the identified needs.
Section 3: Mobilizing Resources For Home- based Care
Introduction
In the previous section, we discussed how to mobilise the community for Home-based care. In this section we will discuss HBC needs at various levels and how to mobilise resources within the community. Let us look at our objectives for this section.
Section Objectives
By the end of this section you should be able to:
• Understand the needs of HBC clients, family, caregivers and orphans and vulnerable children (OVC);
• Describe the types of resources needed for effective and sustainable Home-based care.
• Identify the sources of the required resources;
• Explain how you would mobilise these resources for home-based care.
Let us start right away with the needs of home-based at various levels.
Home- Based Care Needs at Various Levels
Home-based care needs can be identified as those specific to the patient/client, to the family and to the community within which the client lives. These needs may be physical, spiritual/pastoral, social or psychological and may vary from person to person and from one community to the other. These needs should be identified when a client is being enrolled into a home-based care programme, for example while still in hospital, so as to ensure proper planning and integration of activities. Early identification also ensures adequate resource mobilization and the sustainability of activities initiated.
Let us look at the needs of the patients/clients, family and caregivers, and orphans and vulnerable children.(OVC).
Needs of the Patients/Clients
Physical Needs
• Drugs for treatment.
• Clinical care including medication and regular check-ups in case of onset of new symptoms to ensure immediate management.
• Clothing, housing, food, fuel/energy, water, education for children and income.
• General nursing care including attention to toilet needs, observation of vital signs, care of wounds, personal and oral hygiene and comfort.
• Nutritional needs, that is, provision of an affordable and locally available balanced diet.
• Physical therapies, exercise, massage.
• Information, education and communication (IEC), including up-to-date, accurate information on HIV/AIDS and safer sexual behaviour, on writing a will and on preparing for the eventuality of death.
• IEC on how to take prescribed drugs, prevention and care of the clients’ illness
Spiritual/Pastoral Needs
Strengthening existing faith and helping the patient/client in spiritual growth boosts the spiritual aspect of life. This plays a great part in encouraging the person to have a positive view of life and to forgive others and self for any misconceptions and liabilities. The patient/client will therefore be able to:
• Accept forgiveness by others;
• Forgive others;
• Have reassurance that God accepts them;
• Allow religious groups to offer support;
• Have freedom of worship according to faith, which should be respected by the health worker and the care providers;
• Call a religious leader of choice for sacraments and fulfilment of other needs.
Social Needs
The patient/client and especially PLWHAs need company and association without stigma or discrimination. Family and community members should facilitate recreation and exercise at clubs/groups of their choice. PLWHAs need to be considered as people of value and having rights to be respected. They should not be cut off from activities they enjoy e.g. political rally, church/mosque/temple and spiritual gatherings.
The social needs of PLWHAs/client include:
• Respect;
• Love and acceptance from others;
• Company of those around them;
• Source of income/income-generating activity;
• Right to own, inherit and bequeath property;
• Confidentiality regarding their condition by all who know about it;
• Help with the activities of daily living.
Psychological Needs
Love, encouragement, warmth, appreciation, reassurance and help in coping with the disease are the most important psychological needs. Religious groups, volunteer groups and other related support groups can all play a part in meeting these psychological and counselling needs. They can:
• Instil hope so that the patient/client can continue with their daily activities as long as possible;
• Maintain confidentiality and unconditional acceptance and love;
• Provide supportive counselling to live positively.
In short, we can say that home-based care must be Holistic, encompassing all the aspects of human living.
Needs of the Family and Caregivers
Families and caregivers too, have physical, psychological and social/spiritual needs that must be met in order to maintain family solidarity and well-being.
Physical Needs
The physical needs of the family are more or less the same as those of the client except for personal needs that are specific to the PLWHAs/clients condition. Family members of PLWHAs will need proper STD/HIV/AIDS education and demonstrations on the care they will be expected to provide. Because the burden of caring for someone who is very ill or dying is constant and heavy, the family may also need help with household, farm or other chores.
Attempt the following activity. It should take you 10 minutes to complete. Having learnt about the psychological, social and spiritual needs for the clients, I am sure you won’t have problems answering the question.
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|Can you discuss the psychological, social and spiritual needs of the family and caregiver? |
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Now read through the following section and find out if the elements you listed are mentioned.
Psychological Needs
The families of people who are terminally ill and especially PLWHA need a lot of support, encouragement and acceptance from community members so that they may be motivated and encouraged to care for the patient without fear of being isolated. They should be adequately prepared for:
• The deterioration and eventual death of the patient;
• How to give un-smothering love and acceptance;
• Where and how to meet others who are going through the same experience of caring for a chronically sick person. This gives the family members a sense of hope and a drive to go on;
• The importance of observing confidentiality, for example, keeping matters relating to the client in confidence;
• The very real possibility that they themselves may need to seek counselling to help them cope with the situation.
Social and Spiritual/Pastoral Needs
Families don’t stop being members of the community when someone gets infected with cancer or HIV/AIDS. More than ever, such families need:
• Respect and help with activities of daily living when need arises;
• Acceptance of the patient and enabling him or her to socialize and interact in the community;
• Solidarity with the client and the family;
• Spiritual comfort, including taking the initiative to involve the family in spiritual growth through worshipping and praying together.
Needs of Orphans and Vulnerable Children (OVC)
In Kenya it is reported that about 2,3 million orphans need care and support from their extended families and communities (Kenya HIV/AIDS Data Booklet, NACC – December 2005).
The five major problem areas of this group are:
1. Subsistence: Along illness and loss of a parent, OVC suffer from reduced capacity to provide for their own nutritional need and increased poverty.
2. Health: Together with the poverty there is a multiplication of health risks and a reduction in the ability to obtain health services. These children often end up as street children where the vulnerability to STI/HIV is very high.
3. Lack of education and training which reduces their marketability on the job market and thus compound the problem of poverty and access to health care.
4. Absence of psycho-social support that is necessary to the well being and development of a child.
5. Loss of inheritance: In a lot of instances land and home are taken away by relatives.
Having understood the problems that orphans and vulnerable children face, am sure their needs are now apparent. These include:
• Acceptance by those around them resulting in a sense of belonging;
• Basic needs like food, shelter, clothing, education, love;
• Legal interventions in cases of property inheritance;
• Protection from exploitation and last but not least
• Health care.
Having looked at the needs of various groups involved in home-based care, let us now proceed to look at the resources needed to meet the needs of the clients, family and caregiver.
Resources Needed For Home-Based Care.
To effectively provide Home-based care, there are certain resources that we need. Resource mobilisation entails identifying and using all available resources or goods required to meet the identified needs. It is essential to ensure that set goals at various levels of HBC are achieved.
These resources can be broadly classified into four categories or the 4Ms:
• Money;
• Manpower or the people needed;
• Materials or the goods, services and financial support;
• Moments or minutes: the time required
Let us briefly look at each category.
MONEY
Money is an important resource in the provision of Home-based care. Diseases like AIDS and cancer are long, expensive and debilitating illnesses. They eventually render the affected and infected incapable of participating in gainful employment. Yet, they need money to pay for services or to buy goods such as food, clothing, drugs and other materials. They may also need to pay for health, legal and other services.
In the home-based care system, money can be provided by the family, the community, the government or through Insurance. It is unfortunate that many insurance organizations discriminate against clients with terminal illnesses. However you should work hard at sensitizing the community about the needs of the patients and how they can be met. In our country, raising money through Harambee is common and community members can come together to raise money to pay a hospital bill, buy a wheel chair or clutches. Whatever the source, your role is to sensitize community members and clients on the need for the funds and the likely sources of the funds.
MANPOWER
Manpower is another important resource, which we often overlook.
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|List down four people who can assist the client or patient in HBC |
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I hope your list included the following people who can be counted as human resources:
• Health workers at all levels;
• Family members, relatives and friends;
• Community leaders (e.g. In Kenya, Maendeleo Ya Wanawake Organization leaders);
• Spiritual, political, and administrative leaders;
• Community volunteers: These are the individuals who voluntarily spare their time to assist the clients, their families and children for example students from surrounding institutions.
These people can provide a variety of services. It is important for you to understand what service each person can provide so that you can refer the client or patient appropriately. To remind yourself refer to roles that we discussed in section 1.
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Figure 8: Community support helps families to cope
Source: Home care Handbook: A Reference Manual for Home-Based Care for People Living with HIV/AIDS in Kenya, Ministry of Health, Kenya
In the latter stages of a disease such as AIDS people become too weak to support themselves. This condition calls for continuous assistance from relatives and friends. A volunteer care provider also needs continuous support from the community, morally and materially.
MATERIALS
Many illnesses that require home-based care tend to render the affected persons incapable of meeting even the most basic material needs of everyday life. For instance a PLWHA may become too weak to fetch water or firewood, or run errands and do shopping. Food production may be affected due to frequent sickness from opportunistic infections. Thus, the material resources required to assist can be in the form of food, cooking fuel (e.g., firewood), water, or money for drugs and other purposes.
These materials may or may not be readily available. Within communities, the materials can be bought by individuals, communities or families. They can also be donated by organizations. Some non-governmental organization may be willing to donate some of the materials or money to procure them.
Some of the materials can also be obtained from the hospital. Right now there is a cost sharing policy in Kenya. You therefore need to make your clients aware when and where clients can obtain these materials.
MOMENTS OR TIME
Caring for people who need long-term care can be very time consuming and emotionally draining. The caregiver may have little time left to tend to other important aspects of everyday life, like working on the shamba (farm), going to work, school, or running errands. The constant demands can be very stressful. Yet, time is one of the most essential resources known to man. To be able to accomplish tasks, we need time. Time is essential.
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| |How do we create time? |
We make time by:
• Planning ahead and organizing our activities to fit into the allocated time schedules;
• Being punctual;
• Being specific;
• Restricting activities to those planned for;
• Involving more people to cut down on time required for one activity.
Being present is a major source of psychological and moral support. Friends and relatives should understand the importance of sparing time not only to help out as needed, but also just to be with the client and the family members.
Having identified the different types of resources we require to support HBC, let us now look at the different sources.
Sources of the Required Resources
Resources are required at every level of the home-based care continuum. The players at each level should be expected to contribute to the extent possible.
From the Individual/client
• The home environment;
• A home care kit (depending on specific needs);
• Time to devote to care and support;
• Sharing of information and experience as well as advocating for behaviour change;
• Cooperation and openness so as to share responsibility and confidentiality
From the Family
• Basic needs, e.g., food, clothing, shelter, and medicine;
• Time, knowledge and skills of caring;
• Social/psychological support;
• Physical care;
• Financial support;
• Administration of medicine.
From the Community
• Social support
• Spiritual support
• Material support
• Financial support
• Time, knowledge and skills of caring
From the Nation
• Social support through political commitment
• Adequate financial support
• Essential drugs, ARV and drugs for opportunistic infections at the primary health care level
• Advocacy
• Training and supply of drugs to strengthen the capacity of primary health care providers to properly manage people with HIV/AIDS
It is also important to know how to mobilise the identified resources.
Resource Mobilization for Home-based care
The resources that we have mentioned are not always easily available. As a health care worker, you need to know what is available, where and how to obtain it. Some of the materials can be sourced at your health facility, at the client’s home or with an NGO or CBO. You also need to understand the process of procurement. Get to know the procurement procedures and the paperwork that needs to be filled. I am sure you have filled various forms such as the S11, S12 or S13, which are used for procuring drugs and supplies from the hospital pharmacy or from the local medical stores. You may also have procured vaccines and family planning items. If the client needs mosquito nets, you can link the caregivers with NGOs that give them out.
Don’t forget that HBC is a collaborative partnership in providing care and support to clients and the affected. The affected in this case are the close dependents of the client, including children, parents, siblings and spouses. We have given you the knowledge on the needs required, as well as potential partners who can assist. To remind you, we mentioned that partners are the individual, health workers, community, family member(s), and social leaders.
In Kenya the Constituency AIDS Control Councils are mandated to take the lead in identifying and mobilizing community resources at the local level. It is strongly recommended that they work closely with the private sector and NGOs in the area. We will now discuss how we can mobilize the individual, the family, the community and the nation to avail the identified resources
Individual
Through counselling and education, the clients will be sensitized to accept the conditions of their HIV status, illness and to contribute to the extent possible in self-care by:
• Using available resources to assist in making up a care kit that will be availed to the family caregiver to ensure good nursing care.
• Summoning the will to live positively.
• Realizing that home-based care is essential for continuity of care and therefore being ready to consult the health/community health worker to visit at the agreed time.
• Empowering the family caregiver to provide the needed care and attention.
• Learning where to go for information and advice on care of PLWHAs.
• Advocating for acceptance and behaviour change.
Family
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Figure 11.3: The family can provide social and psychological support
Source: Child Health: A Manual for medical and Health Workers in Health Centers and rural Hospitals, Paget Stanfield, AMREF
The caregiver and the family should be involved and educated about the needs of the individual client as well as be ready to meet some of these basic needs by:
• Providing social/psychological support by accepting and not rejecting the PLWHAs.
• Learning where to go for information and advice on care of PLWHAs and other clients.
• Taking the responsibility to administer drugs as prescribed.
• Using available resources to assist in making up a care kit to ensure good nursing.
Community
Through community counselling and sensitization to accept the PLWHA as one of them and to give social support to them and their families, communities assist by:
• Involving the spiritual leader through consulting the PLWHA.
• Providing material support like cooking fuel and water for use in the home.
• While the PLWHA is still strong, accepting them in support groups whereby they will be involved in income-generating activities.
• Using land properly and producing food to ensure the PLWHA is properly catered for.
• Encouraging community members to work together to link with other organizations like donors, NGOs, CBOs, institutions, health facilities, and professionals for referral and networking systems. This will help in providing food, drugs, and IEC materials.
• In case the PLWHA is a parent, ensuring that the children get what they were getting before the parent fell sick. It can be very depressing for the PLWHA to be looking to a future where the children lack food, clothes, school fees and other necessities.
The Nation
Political leaders, who are sensitized on the impact of HIV/AIDS in the community and are committed to do their part to combat the epidemic, will be able to mobilize the general public, who in turn will give social/physical support to the people
Summary
You have now come to the end of this section. In this section you have learnt about the various needs of the clients, family, community, OVC and nation. We discussed the types of resources needed in our communities for HBC. We said that they include money, materials, time and manpower. We discussed the resources required at every level of the home care continuum and learned how to mobilize them from the different partners.
Well, as you can see, providing Home-based care is a challenging task. In the next section we shall discuss how to provide basic nursing care in the context of HBC.
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Section 4: Basic Nursing Care In The Context Of Home-Based Care
Introduction
In Section 1 you learnt about the four components of Home-based care. We did agree that in order to deliver comprehensive care, HBC services need to include clinical and nursing care, psycho-spiritual care and social support. In this section, we shall discuss nursing care in the context of HBC. The focus is on quality care given to PLWHA in their homes. Let us start by looking at our objectives.
Section Objectives
By the end of this section you should be able to:
• Define basic nursing care;
• Explain the major components/activities of nursing care;
• List the materials needed to perform the nursing care activities;
• Describe the steps to follow when carrying out nursing management of the common conditions;
• State and manage common conditions that need attention;
• Describe the concept of self-care and different activities undertaken in self-care.
Components and Activities of Nursing Care
Nursing is the provision of services towards the promotion, maintenance and restoration of health and a person’s well being. When individuals fall sick, both the body and the mind can be affected. This affects their ability to carry out routine activities. At this stage it is necessary that the client be given special care or nursing care. Nursing care can be given to a sick person either while at hospital or in their home. It means things done for them by the health care worker, a family member, friend or even things that people do to care for themselves.
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|What are the components of nursing care? |
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Now read through the following section and see if your ideas are included.
Nursing care in the context of home-based care applies at all levels, from the health institution down to the family, depending on the individual needs of the client. Nursing care includes:
• Activities to ensure good personal hygiene;
• Care for the client’s environment;
• Preventing the transmission of pathogenic micro-organism;
• Physical therapy;
• Pain management;
• Administering drugs as per prescription to ensure compliance;
• Maintaining the nutritional status of the client;
• Observing of clients to detect problems like dehydration, dyspnoea, dysphagia, oedema or fever. Related conditions that need attention include:
- Diarrhea and vomiting, which may easily lead to dehydration
- Pain and discomfort
- Chest problems like chronic coughs, colds and infections
- Skin conditions
- Bed sores
- Nausea, mouth and throat infections
• Taking the PLWHA/client to the hospital or health facility when need arises;
• Reassuring the client at all times.
Some of these components have been explained in previous units. For example maintaining the nutritional status was explained to you in module 8. Physical therapy and pain management will be addressed in the next unit on palliative care.
Home Care Kit
Before you start caring for PLWHAs or teaching their families and the community how to care for them, there are certain materials and supplies that they should have. The caregiver should have a community volunteer kit while the client should have a client primary kit. One level is the material routinely needed by the individual PLWHA; beyond a certain minimum standard of care and hygiene these will contain medications specific to the individual
At the level of the community health worker, the kit will contain necessary nursing supplies such as soap, dressing materials, and basic medication such as paracetamol. It will also contain reference materials and a notebook or diary for record keeping.
Table 11.1 lists complete kits at three levels. The health care provider will need to be educated on the importance of replenishing the kit content regularly (patient re-supply kit). Items that are not readily available within the home setting can be improvised with whatever is suitable and affordable, for example, using plastic paper bags for rubber gloves or old newspapers for draw sheets.
The initial contents of the home care kit are based on the needs of the PLWHA/chronic disabled person and are determined at the health facility level when the client is recruited into the HBC program. Replenishing the kits can be a collaborative effort between the community and the health institution where the client goes for the required regular medical checks.
Table 11.1: Sample home kits
|Community volunteer kit | |Patient primary kit | |Patient re-supply kit | |
|Supplies |Quantity |Supplies |Quantity |Supplies |Quantity |
|Gloves (latex, non sterile) |100 |Gloves (latex, non sterile) |100 |Gloves (latex, non sterile) |100 |
|Soap |1 bar |Soap |1 |Soap |1 |
|Toilet paper |2 rolls |Toilet paper |2 rolls |Toilet paper |2 rolls |
|Scissors (small) |1 |Vaseline |1 (250 g) |Vaseline |5 x 100g |
|Razor blades |25 |Bucket with lid |1 (25ltr) |Talcum powder |5 x 100g |
|Waste disposal bags |100 |Basin (45 cm diameter) |1 |Waste disposal bags |5 pkts 100 |
|Chlorine solution |750 ml |Mosquito net (impregnated) |1 single size |Cotton wool |1 x 100g |
|Surgical spirit |750 ml |Talcum powder |1(100g) |Gauze |50 |
|Plastic sheeting |1 |Nail cutter small) |1 |Bandage |5 doz |
|Condoms |100 |Scissors (small, steel) |1 |Chlorine solution |5 x 250ml |
| | |Waste disposal bags |100 |Condoms |5 x 100 |
|Medications: | |Cotton wool |100g, 2 rolls |Medications: | |
|Aspirin/paracetamol |100 |Gauze 4x4 non sterile |1 pkt 100 |Paracetamol |100 |
|Anti-malaria tabs (fansidar) |100 |Bandages, crepe, 4” |12 |Alberdazol |50 |
|Aberdazol |24 tabs |Mackintosh, 2 meters |1 |Oral rehydration salts (ORS) |30 sachets |
|Multi-vitamins |50 tabs |Chlorine solution |250 ml |Multi-vitamins |100 tabs |
|Piriton |100 |Bed sheets |1 pair (single) |Tetracycline ointment (3%) |3 tubes |
|Iron tablets |50 |3-inch mattress |1 |Gentamicine eye drops |2 bottles 5 ml |
| | |Condoms |100 |Calamine lotion |250ml |
|Reference materials: | |Wooden spatula |100 |Savlon (chloramide forte) |500ml |
|Hand book |1 | | |Dettol cream |20g |
|Reference materials |1 |Medications: | |Nystatin oral drops (24ml) |1 bottle 24ml |
|Portable flip chart |1 |Paracetamol |100 |SP – fansidar |24 tabs |
|Register/diary |1 |Alberdazol |50 tabs |Iron tablets |100 tabs |
|Pencil/ballpoint pen |1 |Oral rehydration salts (ORS) |30 sachets |Piriton (pm – generic) |100 tabs |
|Carrying bag/basket |1 |Multi-vitamins |100 tabs | | |
| | |Tetracycline ointment (3%) |3 tubes | | |
| | |Gentamicine eye drops |2 bottles 5 ml | | |
| | |Calamine lotion |250ml | | |
| | |Savlon (chloramide forte) |500ml | | |
| | |Dettol cream |20g | | |
| | |Nystatin oral drops (24ml) |1 bottle 24ml | | |
| | |SP – fansidar |24 tabs | | |
| | |Iron tablets |100 | | |
| | |Piriton (pm – generic) |100 | | |
| | |Antihistamine tube | | | |
Activities To Ensure Good Personal And General Hygiene
Chronic sick people, including PLWHA, will at one time need assistance with their toilet needs. This is an area that is commonly ignored and yet can be a major source of distress. Helping with elimination needs includes paying attention to the following areas:
• Training the client on good personal hygiene, for example, washing hands after using the toilet.
• Regularly changing soiled bed linen if the client has no control of bladder and bowel movements.
• Using waterproof materials to protect the mattress and the under sheet from soiling.
• Taking care when handling the soiled linen by avoiding contaminated areas for example, by using polythene paper bags or a big leaf to hold soiled linen if gloves are not available. Explain to the client why this protection is needed, as some people may see it as a sign of rejection.
We will explain in detail the following activities:
• Bed Bath;
• Mouth Care;
• Nail Care;
• Washing hair in bed;
• Turning client in bed and lifting of a client;
• Pressure area care
• Care of pressure sores, preventing pressure sores;
• General care of wounds and sores
Don’t forget that the objectives of this section are:
• To educate the caregiver on how to carry out activities to ensure good personal and general hygiene of the client using a step-by-step guide;
• To describe all requirements and resources needed to carry out these activities.
Bed Bath
Some of the patients for Home-based care may be too sick to provide their own hygiene. They may therefore require to be bathed in bed. The caregiver requires equipment and supplies, such as, gloves, plastic/ polythene paper, a large basin, a face flannel, warm water, bath towel, soap, a container for dirty linen, scissors / a razorblade, a comb, a chair, clean linen and clothes.
You should follow these steps:
▪ Prepare the patient, assemble your equipments and supplies and explain the procedure to the patient;
▪ Bath the patient;
▪ Clean the materials used;
▪ Dispose the dirty ones, or wash and hang to dry;
▪ Store away the reusables, remove the gloves, wash and dry the hands.
Sounds easy? Of course this is what you have been doing. But you need to teach it to the other caregivers who have not received training in nursing skills.
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Figure 11.4: Giving a bed bath at home Source: Home Care Hand book : A Reference Manual for Home Based Care for People Living with HIV/AIDS in Kenya, Ministry of Health, Kenya
Mouth Care
Mouth care is intended to promote salivary flow, keep one healthy and the mouth clean. It also maintains freshness of the mouth. None of us likes to be close to a person who has foul breath.
For mouth care, the caregiver requires gloves, 3 small cups, toothpaste or salt water or baking soda. Glycerine or Vaseline, cotton wool balls, a container for used swabs, tooth brush or stick, plastic paper, a spoon, fork or stick and a padded spoon for those who are unable to maintain their mouths open. You follow the same steps as those we outlined in bed bath, that is:
• Prepare the items, the client and yourself;
• Clean the mouth
• Clear used items and dispose off those that are not reusable.
|[pic]ACTIVITY |
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|In module 4 on HIV associated conditions you have learned some problems of the mouth and throat. Do you remember which condition |
|affects the mouth and throat of PLWHA? |
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I believe you said oral thrush. This is a fungal infection that causes small white patches on the mouth and tongue. The patches look like milk curds. Oral thrush is quite common in PLWHAs.
You can advice the client at home to:
• Gently clean the tongue and gums with a soft toothbrush 3 or 4 times a day.
• Rinse mouth with salt water or lemon water.
• Encourage the PLWHA to suck a lemon. This helps in slowing down the growth of the fungus.
• Apply gentian violet twice a day.
• Give anti-fungal oral gel, as prescribed by the doctor.
Nail care
Unclean nails can transmit infection from food to the mouth or one may scratch and transmit infection to the skin. The main aim of nail care is to keep nails short and clean so as to reduce the collection of micro-organisms and prevent self injury. The caregiver requires a nail cutter, scissors or a razor blade, soap, water in a basin, a piece of cloth, a towel, nail brush and Vaseline lotion. You should proceed as follows:
• Explain the procedure and obtain permission to continue;
• Wash each hand and finger, scrubbing the nails with a brush, rinse and dry the hands;
• Trim the nails, apply Vaseline and move to the next hand and to the toes.
• Upon completion you should clean the equipment used, wash your hands and dry them.
Hair care
Hair care is intended to maintain the hair clean and avoid itching. You should use the same material and steps as those described in the bed bath. You require a towel or clean cloth, soap or shampoo, a comb or hair brush, water, a basin and a stool. You should gather your equipment and supplies and explain to the patient what you want to do. Then you should place the patients head near the bed’s edge and wash it with soap or shampoo. Then proceed to rinse the hair, dry and comb it. Remember to clean and disinfect your equipments.
Care of Pressure Areas and Pressure Sores
You have certainly cared for pressure areas in bedridden patients. If you have not, you should practice this. Some of the patients who require home-based care are bedridden and therefore at risk of developing bed sores. The objective here is to prevent the development of pressure sores around the protruding bony parts of the body in a client who is unable to move out of bed, as well as minimize the risk of infection and promote healing.
Before you proceed any further, do the following activity.
|[pic]ACTIVITY |
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|What steps would you take to prevent pressure sores in a bedridden patient? |
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I believe your answer included the following measures of preventing pressure sores:
• Getting the client out of bed as much as possible.
• Turning the client every 2-4 hours.
• Attending to pressure areas by massaging areas of prominent bones with soap and water.
• Using soft bed sheets and changing the bedding whenever wet.
• Straightening the bedding often.
• Putting cushions under the body to keep the bony parts from rubbing together.
• Holding a bedridden child on someone’s lap as often as possible.
You will require the following resources for pressure area care:
• Plastic / polythene bags to use as gloves if client is soiled or has wounds.
• 1 stool / chair
• Container of warm water
• Basin or similar container
• Plastic / polythene paper
• Soap
• Client’s own towel / clean cloth
• Body powder (if possible)
• Vaseline or lotion
• Toilet paper and a receiver
• Clean linen
• Container for soiled linen
• Material for treatment of sores
Once you have assembled all your resources, you should explain the procedure to the client and examine the areas to check if pressure sores are forming. Place the plastic paper or towel under the part to be treated first. Then with soapy hands you should gently massage each area in a circular movement and for long enough to stimulate good circulation of blood (count to 10 as you do each part) then rinse and pat dry. After that, apply powder and or Vaseline and ask the patient how they feel. Remember to clear the materials used and to clean the equipment. Also change or straighten the underlying bed cloth as necessary and remake the bed so that you leave the client comfortable. Lastly wash and dry your hands.
If the patient has pressure sores, in addition to the above steps, you should dress the pressure sore by:
• Dipping the small piece of cloth into the soapy water and clean the sore;
• Washing around the edge of the sore first, then wash from the centre out to the edges until it looks clean. If possible use separate pieces of cloth for each wiping;
• If the wound has pus or blood in it, cover with a clean piece of cloth or a strip of cloth (torn as a bandage) after cleaning; leave it loose and change it everyday. If the sore is dry, leave it exposed;
• Raise the area with the sore as often as possible to relieve it from pressure of the bedding (this can be done by changing the client’s position in bed).
|[pic] | |
| |Seek help when: The wound is infected or does not respond to treatment and you cannot manage |
Some home treatments, such as pawpaw, honey and sugar, are very useful in the treatment of sores as shown in the table below.
General Care of Wounds And Sores
We provide general wound care to promote healing. The requirements and procedure are the same as those for pressure sore care. However, the caregiver may utilize dressing solutions prescribed and obtained from hospitals/health institutions.
Before you continue reading stop for a while and do the following Activity. Try not to send more than 10 minutes on it.
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|Can you describe some decontamination procedures you have to observe? |
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I’m sure you have described the following procedures:
• Protecting hands with gloves/plastic bags;
• Rinsing soiled items in cold water, and then pouring this water into the toilet / latrine;
• Soaking soiled items in Jik 1:6 concentration for ten minutes;
• Putting soiled clothing into a container with soap and pounding them vigorously with a stick;
• Boiling the soaked linen for ten minutes;
• Rinsing and dry in the sun.
Let us explain in detail how to dress the sore or wound:
• Dip the small piece of cloth into the soapy water; squeeze out some of the soapy water; but leave the cloth wet.
• Use the wet cloth to clean around the edges of the wound / sore first, wiping in only one direction.
• Clean the wound / sore from the centre out to the edges until it becomes clean. (If possible use separate pieces of cloth for each wiping)
• For the wound that has pus or blood (infested), put a warm compress (a small piece of cloth soaked in warm water and rinsed out) on the wound at least 3 times a day for about 20 minutes.
• If the wound looks grey or rotten, rinse it with salty water (it is better to use hydrogen peroxide if available for the home treatment)
• Try to pick off the grey parts with the piece of cloth
• After cleaning, cover the area with a clean piece of cloth or a strip of cloth cut like a bandage. Leave it loose and change it daily
• If the wound is dry, leave it open to the air. It will heal more quickly this way
• If the sore is on the leg, keep the leg raised above the head level as often as possible.
For closed wounds that are infected (abscesses and boils)
• Check the client for all the areas that may be swollen and note the following:
o Swelling that is raised and client feels pain
o Swelling on the groin, armpit, buttock, back and upper leg
• Apply a warm compress right away for 20 minutes, 3-4 times a day. This may make pus come out. Keep applying it daily until pus stops coming.
• Cover the lump with a piece of cloth that is loosely tied. If the lump becomes too large and painful, refer / contact a health worker trained to drain the abscess.
Additional advice:
• Wash affected area with clean water, previously boiled with a little salt added to it: 1 teaspoon of salt to 1 litre of boiled water.
• Cover the wound with a clean cloth or bandage if necessary, or leave exposed after cleaning, based on the health worker’s advice.
• Use gentian violet to help keep the area dry and aid healing.
• Use hydrogen peroxide to remove dead tissue.
• If the wound is on the legs or feet, raise the affected area with a pillow if in bed or a stool while sitting.
• Encourage walking exercises but discourage standing for long periods.
• Follow proper infection prevention procedures.
• If the wound is dry, leave it exposed as it heals faster.
• Avoid tight dressing.
• Always use clean dressing.
• Change the dressing once a day.
• Protect the client from getting tetanus by taking them for TT vaccination.
While handling sores, wounds abscesses and boils, you should be careful with the handling of body fluids. The fluids include blood, pus, urine, vomitus, stool, sputum, saliva, vaginal fluid and semen. These fluids can be found in beddings, bandages, clothing, sanitary pads or cotton wool. As you learned in the previous chapter always use gloves and other protective materials. If the items are reusable, make sure you decontaminate and clean them. You should teach all caregivers how to prepare decontamination solutions such as Jik. If the items are not reused they should be burned, buried or thrown into a pit latrine.
Nursing Management of Common Conditions
Let’s have a look at the most common conditions that require nursing attention such as fever, diarrhoea, pain, coughing and difficulty in breathing. I’m sure that you did already acquire the knowledge but let us revisit these symptoms as to ensure proper nursing management.
Fever
Fever may indicate one of many different illnesses. It makes the client very uncomfortable and can be dangerous, especially in small children. Fever may cause loss of body fluids. It may also lead to delirium and convulsions, which can cause brain damage.
Fever may be associated with any of the following conditions:
❑ AIDS-related opportunistic infections such as pneumonia and tuberculosis
❑ Diseases like malaria, measles and meningitis
❑ Infective diarrhea
❑ HIV infection itself
What to do home:
• Check whether the client has a fever, by either using a thermometer if available or placing the back of your hand on the client’s forehead and the back of the other hand on your own forehead to compare the two.
|[pic] |
Figure 11.5: How to check temperature. Source: Home Care Handbook: A Reference Manual for Home-Based Care for People Living with HIV/AIDS in Kenya, Ministry of Health, Kenya
❑ Try to lower fever by removing any of the client’s clothing and blankets that are not necessary and exposing the client to a fresh air breeze. Cooling the skin by bathing the client or by putting cloths soaked in warm water on the chest, forehead and armpits. Give medicines that help reduce fever like aspirin or paracetamol
❑ Give plenty of fluids such as water, juice and soup to replace the fluid that is lost through sweating, to prevent dehydration.
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| |Seek help if the temperature persists inspite of all your efforts. |
Diarrhoea
Diarrhoea is a common problem in persons with HIV/AIDS. A person has diarrhoea if:
• Their stools are frequent (3 or more in a day), loose and watery.
• The stools contain blood or mucous (bloody diarrhoea signifies dysentery).
Note: Greenish offensive diarrhoea is always infective. Diarrhoea is sometimes accompanied by abdominal pains and vomiting.
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|Explain how you can prevent diarrhoea |
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You can prevent diarrhoea by:
• Using clean boiled water for cooking and drinking;
• Washing and dry fruits before eating them;
• Eating clean, freshly prepared food. Clean food before cooking and cook it properly;
• Protecting cooked food from being contaminated by covering it to avoid flies;
• Reheating pre-heated foods thoroughly at a high temperature and then allow cooling to the right temperature to avoid mouth sores;
• Maintaining good personal hygiene by washing hands and drying them if possible.
How to Treat Diarrhoea
• Give more fluids than usual, especially what the person finds favourable: unsweetened juices, uji, soup, rice, water and oral rehydration solution. Correct dehydration by giving plenty of fluids after every loose motion passed.
• If the client is a child who is breastfeeding, continue to feed the child to avoid malnutrition. If the mother is HIV infected adhere to the current instructions on feeding such a child.
• In case of vomiting or loss of appetite, feed the client frequent small amounts of balanced diet that is easily digested.
• After the diarrhoea stops, give an extra meal each day for 2 weeks to help regain the lost weight.
• Prevent dehydration by early recognition and treatment.
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| |How can you recognize dehydration at home? |
A client with dehydration will present with the following signs and symptoms:
• Feeling very thirsty with a dry mouth;
• Feeling irritable or lethargic;
• Loss of skin elasticity. When pinched the skin goes back very slowly;
• In children there will be sunken eyes and fontanel;
• Lack of tears despite attempts to cry.
Seek help when the diarrhoea persists and the client has signs of dehydration and/or malnutrition The danger signs of dehydration are as follows:
• The tongue is dry,
• The eyes are sunken, and
• Skin goes back slowly when pinched.
• The person may be extremely thirsty and may seem irritable or very tired.
Pain
Pain can be caused by many factors in a patient with HIV/AIDS. It can present in the form of joint, chest, muscle and head aches, or just generalized pain. It is important to understand the main cause of the pain, whether it is due to an infection or ectopic pregnancy, and treat it immediately.
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| |How do we manage pain in PLWHAs? |
There are a number of things we can do to manage pain in a patient with PLWHAs:
• The patient can take aspirin or paracetamol;
• They can lie down and frequently shift position and if pain is in the chest, sitting upright may relief it;
• Care givers can gently massage the area while talking to the patient to distract them;
• They can assist the patient to change position in bed and keep the patient’s environment quite and calm;
• In the case of chest pain, we can apply a warm compress to the area where the discomfort seems to be centred;
• If there is pain following a cough, we can hold a pillow or hand tightly over the area that hurts when coughing.
Coughing and Difficulty in Breathing
In section 2 of Unit 4 you learnt the common conditions of the respiratory system. You learnt that symptoms of coughing and difficulty in breathing can be caused by TB, pneumonia, bronchitis, heart problems, asthma and common cold among others. It is important for clients to be investigated because some of the diseases are contagious. The person should drink lots of fluids especially if there is fever. They should also sit up in bed if possible and turn frequently. When coughing, they should cover their mouths with a piece of paper or cloth which can later be burnt. Testing should be done to find out the main cause and paracetamol or aspirin taken for fever. When there is difficulty in breathing, the head of the bed should be elevated to assist the person to sit up in bed. Difficulty in breathing can be very frightening and so it is important to talk to the patients and soothe them. Distinguish between productive (wet) and dry cough. Wet coughs can be due to infection. Reduce irritants, for example, smoking.
|[pic] |
Figure 11.6: Elevate a client who is experiencing breathing problems with pillows
Source: Home care Hand book: A Reference Manual for Home-Based Care for People Living with HIV/AIDS in Kenya, Ministry of Health. Kenya
Confusion, fear, anxiety and depression
These are also common conditions that can not be ignored. We know that HIV infection can cause psychological effects, especially if the person is not properly counselled to cope with the situation. You have learnt in section 4 of Module 5 that HIV/AIDS can affect the nervous system and can cause mental confusion or dementia and peripheral nerve damage.
Mental confusion can be due to the direct effect of the virus on the brain, head injury, or severe depression. Depending on the degree, this can be a serious disability. Patients can present with inability to concentrate, loss of memory, slow thinking, poor short-term memory and personality change. In late stages, about half develop motor dysfunctions like weakness of one part of the body, tremors, inability to walk, and incontinence of stool and urine. In anxiety and depression, patients have feelings of nervousness, fear, sadness and hopelessness.
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| |What are some of the symptoms of anxiety? |
Some of the physical and mental symptoms of anxiety are:
• Lack of appetite;
• Feeling short of breath;
• Shaking, sweating and feeling faint;
• Palpitations, tingling sensations;
• Insomnia, difficulty to concentrate;
• Feeling out of control, worried and irritable.
Signs and symptoms of depression are:
• Feeling of hopelessness;
• Sleeping too much or too little, eating too much or loss of appetite;
• Withdrawal from normal activities;
• Comments about wanting to commit suicide.
The following activities can help the home-care clients who suffer from fear, anxiety, depression and confusion:
• Keeping loose and dangerous objects out of the reach of the patient;
• Helping the person to stand and walk about;
• Ensuring the person is always accompanied;
• Keeping medicines out of the way;
• Ensuring that the patient rests, eats properly and is well groomed;
• Spiritual guidance from friends, counsellors and religious persons.
• Encouraging peer contact and identifying community persons and groups dealing with PLWAS;
• Discouraging use of recreational drugs;
• Letting the person know that their feelings are normal;
• Communicating unconditional love by the family and friends;
• Assisting patients plan their daily, weekly and monthly activities;
• Assisting them to relax and explaining that feelings of depression and anxiety are normal.
|[pic] |
Figure 11.7: A patient and a caregiver talking to each other.
You should seek help if:
• The family members feel they cannot cope or the depression is so severe the client is contemplating suicide;
• There is worsening change in normal habits like refusal to feed and sleeplessness;
• New symptoms occur, like fever, headache, difficulty in breathing, diarrhoea;
• The PLWHA becomes aggressive and violent.
Caring For the Child with HIV/AIDS
Children will HIV/AIDS present with the same problems as those found in the adults. They however may not be in a position to easily communicate how they are feeling.
Therefore you should teach the family to:
• Feed the child well with a balanced diet;
• Maintain good personal and general hygiene;
• Have the child immunised as required. If a child has clinical signs and symptoms of HIV/AIDS the BCG vaccination should not be given;
• Love the child and show them that they are loved. However, treat the child normally;
• Treat infectious that may present in a timely manner;
• Allow other children to play with the sick one;
• Teach the older children good personal hygiene;
• Hold children who are bed ridden on the lap to prevent pressure sores;
• Ensure the child is not wet for long periods;
• Avoid wiping their buttocks, instead pat them dry;
• Use simple lotions for skin care;
• Observe the child for infections, dehydration, pain and other symptoms, and seek specialized care immediately.
Infection Prevention in HBC
PLWHA and their caregivers must be aware of the importance of taking care to control the spread of infection. Infection prevention in home-based care for people with HIV/AIDS has four primary aims:
• Prevention of self-infection
• Prevention of patient-to-caregiver infection
• Prevention of caregiver-to-patient infection
• Prevention of patient-to-sexual partner(s) infection
Self-Infection
In this mode of infection, the patient gets infection from one part of the body to another, e.g., wounds, faeco–oral infections through improper hand washing after toilet, etc.
Patient-to-Caregiver Infection
This can be a very distressing situation—the caregiver is infected with either the HIV virus or other infections in the process of caring for the patient. It can occur as a result of:
• Not using gloves or other available plastic waterproof material while handling soiled linen, or blood and other body fluids.
• Attending an HIV-positive patient while having open uncovered cuts, wounds, or bruises.
• Acquiring chest infections such as tuberculosis while caring for the patient.
• Splashing blood in the eyes while attending childbirth by an HIV-positive mother.
Caregiver-to-patient infection
The PLWHA has a lowered immunity as a result of the HIV infection and is therefore prone to infections. If the caregiver is sick with any common infection, it is safer to have another care provider take care for the patient during the period of the illness. Common infectious diseases include the following:
• Common cold or flu
• Diarrhoeal diseases
• Skin conditions such as scabies
• Typhoid
• Chest infections like bronchitis, pneumonia, and tuberculosis
• Fungal infections, especially those affecting the skin
Patient-to-sexual partner(s) infection
Being HIV-positive does not mean the patient is no longer capable and in need of sexual satisfaction. In the early stages of HIV infection, the patient has minimal or no signs of the disease and is therefore as attractive as before. The infected person still has sexual feelings and thus is capable of passing the infection sexually to any sexual partner(s). This form of infection can be prevented by:
• Educating the infected person on the infection, including mode of transmission and all known preventive measures.
• Stressing total abstinence (primary or secondary) as the primary preventive measure.
• Urging a patient who is not able to abstain to have only one sexual partner with whom they must use condoms to prevent re-infection and spread of the disease.
General Measures
There are a number of general infection prevention measures that the care providers both in hospital and at home should try to adhere to. Many of them were discussed Unit 9, Section 2 on occupational and non-occupational exposure to HIVI. These included:
Hand Washing
• Washing hands before and after handling the patient or infected material;
• Washing hands after removing the gloves because they could have rotten pierced or torn in the process of use.
Using Gloves or Other Plastic Materials
Wearing gloves or other locally available plastic papers when dressing wounds, handling linen soiled with body secretions such as blood, faeces, vomits and pus, and handling soiled instruments and dressing materials. If in a hospital setting, always use a separate pair of gloves on each patient to avoid cross contamination. Use of disposable gloves is appropriate but where resources are limited, autoclaving of reusable rubber gloves should be emphasized.
Handling body fluids carefully
Always wear gloves or plastic bags to prevent direct contact with body fluids. Remember to protect your feet when cleaning body fluids spilled on floors. Clean and decontaminate dressing and other materials that will be kept and re-used, such as clothing, bedding, towels, and cloths for bandages. Burn, bury, or throw into a pit latrine any materials that can’t or won’t be re-used. Be especially careful when handling blood or pus, as these pose the greatest danger to the caregiver.
Maintaining General and Personal Hygiene
• Bathing daily and washing hands frequently.
• Regularly airing patient’s linen to ensure a clean and fresh environment.
• Keeping all skin sores or wounds covered with a bandage or clean cloth.
• Ensuring that things used in the care of the patient are kept away from children.
Keeping Food Safe
• Storing food covered or in fly-proof cupboard.
• Drying utensils out in the sun.
• Using clean boiled water for drinking.
• Washing all fruits and raw vegetables before eating.
• Always washing your hands before and after preparing food.
Disposing of waste properly
• Burning
• Burying
• Emptying into pit latrine
The following table summarises the symptomatic careof AIDS related illnesses.
Table 11.2 : Symptomatic Care of AIDS Related Illnesses
| |Symptoms |Care |Medicines and supplies |
|1. |Oral discomfort |For thrush (whitish coating of the tongue, mouth, and |Gentian violet rinses, nystatin or |
| |Difficulty swallowing |throat): Rinse mouth with salt water |ketoconazole |
| | |For poor nutrition: Soft diet |Multi vitamins |
| | |For Kaposi's sarcoma (KS): Refer for treatment, if | |
| | |condition is not terminal | |
| | |For general hygiene: Rinse mouth with salty water | |
|2. |Cough/difficulty in breathing/chest|Physical therapy and treatment for TB, other pulmonary |Cotrimoxazole (septrin) or penicillin |
| |pain |infections or KS; followed by emotional support |Cough mixture, codeine |
|3. |Diarrhoea |Treatment for treatable infections; skin care; dietary |Cotrimoxazole (septrin) or |
| | |changes; ORS/fluid replacement |metronidazole (flagyl) for empirical |
| | | |treatment |
|4. |Weight loss |Nutritional support; skin care |Food Supplements |
|5. |Vomiting |ORS/fluid replacement; oral care |Antiemetic (medicines to stop |
| | | |vomiting), e.g., stemetil, plasil, |
| | | |avomine |
|6. |Pain |Instruction to family in providing comfort measures; |Aspirin/paracetamol, antacids; for |
| | |For abdominal pain: Dietary changes |severe pain health care worker may |
| | | |prescribe codeine phosphate or oral |
| | | |morphine sulphate |
|7. |Immobility/weakness |Family education to provide: Assistance with daily |Crutches or wheelchair, walking stick, |
| | |activities, skin care, nutritional support |walking with support from HBC giver |
|8. |Fever/night sweats |Treatment for infection, followed by comfort measures (cool|Aspirin/paracetamol |
| | |baths, fluids) | |
|9. |Rash/skin lesions |Treat infections, followed by cleansing, application of |Prescribed skin ointment, antihistamine|
| | |salt water soaks, and dressings for discharging wounds |(Piriton), aspirin/paracetamol |
|10. |Oedema |Elevate affected limbs; cool compresses; pain relief; skin |Prescribed medicines (diuretic) |
| | |care | |
|11. |Urinary infection/pain when passing|Treatments, comfort measures, patient education |Prescribed medicines (antibiotics), |
| |urine/blood in urine/ swelling in | |aspirin/paracetamol |
| |the groin | | |
|12. |Depression/anxiety |Provide emotional and spiritual support; ensure patient |Prescribed medicine |
| | |receives counselling and pastoral care services | |
|13. |Lack of sleep |Emotional support |Prescribed medicine |
|14. |Confusion, headache, paralysis, |Treatment of treatable infections, in hospital or clinic, |Prescribed medicine |
| |loss of vision, personality changes|if treatment is available; followed by safety precautions, | |
| | |pain relief, family education, emotional support | |
|15. |Drug reactions: skin rashes, |Symptomatic care as above |Discontinue all medication and refer |
| |diarrhoea, loss of vision | |for review and/or change of treatment |
Source: Adapted from Lamptey et al. (1990).
The Self Care Concept For The Client
Taking the example of an AIDS client, for a long time people have thought that being HIV-positive was an automatic death sentence. Once you were diagnosed, they said, you might just as well get ready to die. As you well know, this need not be the case at all. Many people who are HIV-positive live productively for 10 years or more—long enough to pay off a mortgage, or see children through school. How do they manage? They take good care of themselves. They eat well, get enough rest, exercise, and attend promptly to any illness or infection. They avoid habits like smoking and drinking and remain involved in family and work affairs. Client’s who have this kind of attitude live positively with the disease. The self care concept is a way to manage the HIV/AIDS infection and encourages the client to be healthy for as long as possible.
Self-care can be defined as the care clients can give themselves or the things they can do to help improve the quality of their lives.
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|What are the advantages of self care? List them down below. |
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The advantages of self-care are that it:
• Makes the client feel self-reliant;
• Removes feeling of hopelessness;
• Promotes healthy and positive living;
• Helps relieve anxiety and depression;
• Gives a feeling of going on and reduces the fear of dying.
Let us have a closer look at the main activities of self-care.
Proper Nutrition
In Module 8 you learnt the importance of proper nutrition and that access to adequate food and palliative nutritional care and support can prolong life. Proper nutrition has the potential to significantly postpone HIV/AIDS related illness and keep a person healthy and productive. We know that our bodies need well-balanced and wholesome food. Over 90% of diseases that attack our bodies are food-related. Eating a variety of whole grains, legumes, fruits, vegetables, and animal protein restores health and protects the body against infections. A well-balanced diet will strengthen your body’s defense system, thus protecting against infections. It will repair worn out body cells, provide energy to the body and improve the well being of the body and spirit. Strive for a well balanced diet of wholesome foods that provide all the essential elements your body needs. Your diet should include:
Coping with Stress
Positive attitudes, feelings, and ways of thinking will go a long way toward helping you live positively. At times, this is not easy. For example: A diagnosis of HIV infection or AIDS is a crisis for all concerned—the infected person, the family and their friends. The client and his family may experience many losses over a very short period of time and this causes a lot of psychological distress. This kind of distress is a natural reaction to the situation the client is in. Clients should be encouraged to find support and should avoid the sentiment that they have to handle everything on their own. They should try to talk things out with their spouses or partners, to find solutions and make plans together. A trusted counselor or a religious adviser can help. If you believe in God, it can be a good time to rediscover the power of prayer.
Getting enough rest is also important to your mental health. It will be easier to keep your body strong and your mind focused if you don’t let yourself get too tired. Remember: stress slows down the body and increases wear and tear. Your body needs rest, so try to get at least 8 hours sleep every night. Rest whenever you feel tired. It is also good to relax: listen to music, read newspapers, novels or religious books. You can relax with people you love. Spend time with your children and your partner. Talk with friends.
Safer sexual behaviour
Start by doing the following activity.
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|[pic]ACTIVITY |
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|List some of safer sexual practices that reduce the risk of HIV-transmission |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
Did your answer include the A-B-C of HIV prevention? If you did then you are right on track!
In addition, personal and environment hygiene, regular exercises and adherence to prescribed treatment (ART, OI, TB and others) should be part and parcel of self-care.
Lastly, let us look at clinical care in the context of HBC.
Clinical Care
In the last Unit we discussed continuum of care and said that it refers to holistic care given through an organized and linked system involving the health care facility, the home and the community. Thus the role of health workers as members of the HBC team is critical to the success of the program.
Clinical care in the context of home-based care is the continuation of medical care in the home. The idea is to ensure the continuity of the care and treatment the patient/client was receiving from the health facility.. It is collaborative care provision by the health care workers, the family members and the community.
The objectives of clinical care are as follows:
• Ensuring early detection, treatment of opportunistic infections and other complications that occur as a result of HIV/AIDS;
• Ensuring that drugs prescribed to the PLWHA by the clinician are administered at home according to the regimen of intake;
• Reducing the suffering from conditions associated with the HIV/AIDS infection;
Drug Administration
Drugs can be administered at home at the same time and frequency they were given to the PLWHA/client at the hospital. It is the responsibility of the health care worker prescribing or distributing to give full instruction on how and when medication should be used. In addition, he/she should be able to educate and counsel the client and the family caregiver on the need for drug compliance and side effects. The home-based care provider needs to make sure that instructions are being followed.
The caregiver and client should be taught the:
• Instructions for taking medication and how to follow them;
• Dose the client is supposed to take;
• Signs and symptoms of side effects when the client has a reaction to the drug, and when and where or whom to call for medical help;
• Local remedies and when they can be used.
The time to take medication may be important. Some medicines should be taken in the morning and some before bedtime, depending on their purpose. These times should be followed carefully.
How often the medicine should be taken during the day is also important. People tend to count the frequency of taking medicines during the daytime without considering the many hours of the night. Such irregular taking of medicines especially antibiotics leads to serious resistance of organisms to drugs. If the instruction says take the medicine “3 times a day” the health worker should help the person figure out how to space the time properly. That is, the times should be about 8 hours apart, even if it means taking the last dose late in the evening.
It is also important for caregivers to be taught and to remember that some drugs may not work properly if they are taken together with certain foods. Doxycycline and tetracycline are examples of medicines that should not be taken within an hour of drinking milk or taking tea because the milk makes the drug less effective. Some drugs should not be taken at the same time with vitamin supplements or with other drugs.
Finally, anyone taking any medication needs to know that the medicine itself may cause some reaction or side effect. These may be mild or simply inconvenient. Some mild side effects of various drugs include: nausea, swelling of the legs, skin rashes, or hair loss. Because the reaction will stop when the medication is finished, the side effect needs to be balanced against the good that the drug can do. Other side effects may actually be worse than the illness the medicine is treating and can even be fatal. People should be encouraged to remember the name of any medicine they may have reacted to, so that they can inform a health care worker.
Both the sick person and the community health worker should feel free to ask the doctor or health care worker about any side effects. If possible, they should read the information on the leaflet in the drug package and ask for help if they do not understand everything it says about the medication.
Summary
You have now come to this section. In this section we covered the following topics:
• Major components/activities of nursing care
• The materials needed to perform the nursing care activities
• The steps to follow when carrying out nursing management.
• Nursing Care of common symptoms in PLWHA
• The concept of self-care and the main activities undertaken in self-care;
• Clinical care in the context of HBC.
In the next section we will look at the remaining components of HBC, namely, psycho-social support and psycho-spiritual care.
Section 5: Psycho-social Support and Psycho-spiritual Care
Introduction
In this section we are going to look at the two remaining components in Home-based care. These are psycho-social support and psycho-spiritual care.
A diagnosis of HIV infection or any other fatal or long-term condition, suspicion or recognition of the possibility of infection, brings with it profound emotional, social, behavioral and medical consequences. The subsequent individual and social adjustments required often have implications for family life, sexual and social relations, work, education, spiritual needs, legal status and civil rights. This section is designed to focus on specific needs of the clients in regard to social support needs, psychological distresses and spiritual needs. Before we proceed, let us have a look at the objectives.
Section Objectives
By the end of the unit participants will be able to:
• Define psycho-social support
• Understand social needs of the client and his family
• Counsel clients to adopt behaviour change
• Identify types of social support services
• Describe aims of spiritual /pastoral care
• Explain issues in giving spiritual/pastoral care
• State who and when spiritual/pastoral care is necessary in home-based care
Psycho-Social Support
Persons suffering from chronic diseases in particular, PLWHAs need company. Recreation and exercise back up social support, which can be achieved through participation in community activities. In addition, PLWHAs have the right to belong to clubs, other groups and need to be considered as people of value and with rights to be respected.
Social support reflects the needs of the mind. Before addressing the social needs of the client, the following psychological problems should be identified and solved:
• Anxiety
• Fear
• Depression
• Hopelessness
• Worthlessness
• Temperament
• Bitterness
• Confusion
• Amnesia
• Low self esteem
These problems can be caused by:
• Culture
• Stigma
• Discrimination
• Neglect
• Abandonment
• The disease process
• Poverty (lack of resources)
In the approach to solve these problems, one should:
• Identify the need
• Identify the cause(s)
• Do more of listening
• Show Empathy
• Provide accurate information
• Deal with each cause appropriately
Possible interventions to those with psychological problems:
• Counselling
• Deal with Stigma and Discrimination and Neglect and Abandonment
• Medication
Social support for HIV infected people is the creation of an enabling environment for the PLWHA by all those involved in providing care. It involves information dissemination, referral to support groups and welfare, economic and legal services. There is need to understand the social side of health, which in general includes:
• Knowledge of local socio-cultural beliefs and practices related to HIV/AIDS and other chronic diseases treatment in order to educate people on the positive and negative aspects;
• Recognition of gender issues in the care of PLWHAs and terminally sick people;
• Patterns of health-seeking behaviors and support systems of the community.
We have already learnt that to be able to take care of anxiety, anger, guilt or distortion in imagination, the clients need assurance and acceptance by their families and the community
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| |How can we show our clients that we have accepted them? |
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First if patients are able, we agreed they should be included in day to day activities. They should not be denied to eat with the family, in restaurants, go to social events, and celebrate events. Let the patients belong to clubs, groupings and other social structures. Those who are able to work should be encouraged to do so.
Looking back to the main principles of HBC that were discussed in Section 1, some of these principles were related to social support. Do you remember them?
Take a pen and attempt the following activity. Try not to spend more than 10 minutes.
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|Can you list the primary issues in social support that need to be addressed in HBC? |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
Now confirm your answers as you read the following discussion.
The primary issues in social support include the following:
• Burden of care on women.
• Confidentiality, acceptance, solidarity and stigmatization.
• Protection from loss of job and insurance.
• The role of traditional healing.
• Societal concept of the HIV epidemic.
• Income-generating activities and resource implications.
• The impact of the extent and quality of support on the client’s quality and quantity of life.
• Early involvement of relatives and other support groups, social workers and children’s department.
Various social needs of the client and the family
We hope you have come to understand that involvement in social activities is important to clients so that they are not cut off from activities they enjoy, for example, political rallies, community meetings or church/mosque/temple gatherings. Other needs of clients include:
• Love and acceptance from all around.
• Source of income/employment/income-generating activities.
• Confidentiality regarding HIV status by all who know about it.
• Security of person and property.
• Respect and help with the activities of daily living.
• Care of orphans and children in need, including any necessary legal interventions, especially regarding property inheritance.
Identification and types of social support services
It is important to learn about the health and social welfare system within a community and at the district level in order to know the appropriate type of social support service to be provided. Existing health and social welfare personnel (both paid and voluntary) working in the community hospital and local health centers are one of the most important stakeholder groups. One should try to collect as much information as possible about the roles and responsibilities of these personnel. Once you have obtained this information, you need to consider how Community Home-based care (CHBC) will fit into these existing programs.
The following checklist will help in guiding this assessment:
• What community health and social welfare services exist?
• Who is responsible for which service?
• Who has the authority for policy, Programme, finance, personnel and evaluation?
• How does each service fit into the larger health and social welfare framework?
• What is the mix of health and social welfare personnel within each agency?
• What is the full complement of paid and volunteer health and social welfare workers?
• What CHBC services are already provided?
• How can CHBC be integrated into the mix of services?
NGOs, faith-based organizations, community-based organizations and other community groups usually run numerous community-based programs. It is important to know about these various agencies and services, to determine whether CBHC activities are included in their programs and to consider how to collaborate with and complement these services. The following checklist can guide this assessment:
• List the NGOs, community-based organizations, faith-based organizations and other community groups;
• What are the roles and responsibilities of the service agencies?
• What is the complement of workers within each agency?
• Do these existing services coordinate and collaborate with one another?
• How do these existing services fit into the larger health and social welfare framework?
• How could CHBC fit into these existing structures and programmes?
Networking and collaboration is very important in HBC and you will learn more about it in the next section of this unit.
Counselling
Counselling helps people to understand and deal with their problems and communicate better with those around them. You learnt about counselling and psychological support in Module 3. You should utilize the knowledge, skills and attitudes you acquired in that module to care for Home-based care patients.
In the context of home-based care there are several types of counselling:
• Pre-and post-test HIV counselling (Voluntary Counselling and Testing)
• Behaviour change counselling
• Group counselling
• Family counselling
• Supportive counselling
• Crisis counselling
• Spiritual/pastoral counselling
• Death and bereavement counselling
As you have learnt before, in counselling, the focus is the person and not the disease. You should be able to listen actively and respond empathically.
Many illnesses, especially HIV/AIDS, cause emotional, physical, and psycho-social pain and stress. We have already covered some of the stages of stress. These include:
• Shock, fear and denial;
• Accepting, withdrawal, Depression, suicide;
• Accepting help, making plans about self and family;
• Becoming ill and weak;
• Anger, despair, sadness.
I’m sure you have acquired the necessary counselling skills to be able to support behaviour change in PLWHAs. Let us discuss this topic more in detail.
Behaviour Change Counselling in PLWHAs
There are two aspects to behaviour change counselling:
• To encourage persons who have tested HIV-negative to adopt behaviours and lifestyle patterns that may be less risky than those practiced before the test;
• To encourage persons who have tested HIV-positive to adopt behaviours and lifestyle patterns that enhance their own health status and that prevent further transmission of HIV.
Counsellors need to be aware that whether the results are negative or positive, behaviour change may present a troubling dilemma to persons who are married or in union. Taking steps to change behaviour in this case means more than simply an individual decision; the reactions of the spouse or partner must also be considered. Ideally, couples should be tested and counselled together to help them adjust to any changes that may be necessary in their life.
For HIV-Negative Persons
People often seek out HIV testing because they are worried that they may have at some point for some reason contracted the virus. The cause of the worry may be his or her own behaviour or the known or suspected behaviour of a spouse or partner. A negative test result is like a second chance for such worried folks because they find out they are clean and they want to stay that way.
Behaviour change counselling takes advantage of that window of opportunity to support HIV-negative persons in their choices of a healthier, safer lifestyle. For people who are concerned about their own risky behaviour, the idea is to reinforce the message that they can maintain their negative status by avoiding behaviours that expose them to the risk of HIV infection. They should be encouraged to take the A-B-C precautions: Abstaining from sex, Being faithful to a single faithful partner, and using Condoms for each and every sexual act. Known drug users should also be advised not to share needles. The situation is more problematic for people who are worried about the behaviour of a spouse or partner. Such a situation is especially difficult for women, who often have no power in sexual negotiations and can not refuse sex or suddenly insist on the use of condoms.
Encourage the person to be as assertive as possible in insisting that the spouse or partner go for counselling and testing. Regardless of the source of the original worry, HIV-negative persons should be encouraged to seek prompt treatment for symptom of any sexually transmitted infection.
For HIV-Positive Persons
For the person whose test results are positive, the immediate damage has of course already been done. The idea of behaviour change counselling in this case is to prevent further transmission of the disease and to focus on behaviour choices that support positive living. The A-B-C precautions remain important for this group as well. The use of condoms not only helps prevent the further transmission of the disease, it also reduces their own chance of reinfection, which builds up the amount of the virus in the system.
Married women who test positive may find that their husbands react violently to the results of the test. This may be true even if the husband also tests positive. Careful counselling is in order here to ensure that couples fully understand their situation and their options. Sexual behaviour is only one area that may need to be examined and supported for change. HIV-positive persons may also need help with adjusting their attitudes toward nutrition, exercise, and other aspects of any normal healthy lifestyle. For instance, for some people, giving up the daily pombe and nyama choma feast may be as difficult as changing sexual behaviour. Eating a well balanced diet, exercising regularly, reducing alcohol intake and stopping the use of tobacco and other recreational drugs can add years of healthy living to the HIV-positive person’s life. Proper rest, stress reduction and prompt treatment of any infections that arise are also important to maintaining good health.
Let us now discuss the last component in HBC: spiritual/pastoral care and support.
Spiritual/pastoral care and support
Spiritual support is an effective means of helping clients to cope with their feelings. Spiritual concerns about impending death may give rise to an interest in spiritual matters and a search for religious support. Spiritual care may take various forms. These may include praying together, reading from the scriptures of the Koran etc.
While providing spiritual/pastoral care, spiritual leaders should avoid introducing their own values and faith as opposed to the client’s beliefs, but instead enhance the client’s spiritual growth. This plays a great part in encouraging the client to have a positive view of life, to forgive others and self for any misconceptions and blames.
The objectives of counselling and psycho-spiritual care in home-based care are to:
• Control the spread of HIV/AIDS through information dissemination, promotion of safer sex, advocacy for behaviour change and encouragement of better health seeking behaviour;
• Help PLWHA/client to come to terms with the infection and to adopt a positive living attitude;
• Help the client/PLWHA make well informed decisions about sex and sexuality;
• Offer psychological and spiritual support to clients and their families;
• Help clients to assess and talk about what their life has meant to them through their belief systems, whatever they may be;
• Help clients accept the need to talk to family members about their condition and future plans.
Take a pen and attempt the following activity. Try not to spend more than 10 minutes
|[pic]ACTIVITY |
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|Can you list the main aims of offering spiritual support to PLWHA? |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
Now read through the section below and see if your ideas are included.
The main aims of offering spiritual/pastoral support are to:
• Strengthen the spiritual, physical, mental and social well being of the client;
• Enable the client to face life with confidence and the assurance that their God, however perceived, unconditionally loves and accepts them;
• Facilitate the opportunity for the client to receive necessary sacraments;
• Remind the client of the mortality of our bodies, that is, everyone will one day be subject to death;
• Reconcile with the past, present and future;
• Enable the family to cope, to fulfil the obligation to the client, and to come to terms with their own loss;
• Help the community avoid condemnation of the infected and affected with HIV and hence be challenged to assist when needs arise.
With appropriate spiritual/pastoral support, it is expected that the PLWHA will:
• Accept forgiveness by others;
• Forgive others;
• Have reassurance that God accepts them.
Spiritual caregivers should not impose their faith on the client. They should also consider the following points:
• Client’s religious affiliation;
• The age group, gender, marital status and culture of the client;
• Preparation of the family and the client before the support is given;
• The need for sensitizing the community on the importance of spiritual support to help them take the initiative to visit the client individually or in groups. Once they have done so, they need to explore possibilities of targeting the individual for spiritual follow up.
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| |Who can give spiritual / pastoral care? |
Spiritual/pastoral care and support can be offered by any of the following people:
• Appointed religious or spiritual leaders;
• Appointed lay leaders;
• Any other mature follower of the same faith of the infected and affected member who is present at the time of need;
• A spiritual leader or a pastor who is the choice of the client and/or the family members. In effect, anyone can listen to a person’s fears and concerns about spiritual matters if they have good counselling and communications skills. The key is being respectful and non- judgmental.
When is spiritual/pastoral care necessary in Home-Based Care?
• On a day-to-day basis;
• When one needs hope and assurance;
• When one is isolated and faced with the possibility of death, or the death of a loved one;
• When one is discriminated against and stigmatized because of being infected with HIV;
• Sometimes when all hope is gone and everything else has faded.
We have now come to the end of this section. Let us now summarize what we have learnt.
Summary
In this section, we have addressed psycho-social and spiritual support as two components that are important in offering comprehensive and holistic care for PLWHA. In the next section you will understand and appreciate referral networks as a way to deliver quality HBC.
Section 6: Referral And Networking Systems For Home-Based Care
Introduction
Welcome to our last section in this unit on home-based care. In this section we shall discuss referral and networking for home-based care. In Section 1, we explained and agreed that in order to succeed in our role in HBC you need to collaborate with other service providers. This will ensure that clients are given quality care. This quality care is provided through the four essential components in HBC. In Section 4 and 5 you acquired the necessary skills to ensure that the client is given appropriate nursing and clinical care together with psycho – spiritual and social support. Referral gives us the opportunity to link a client from one caring service to another. Referral and networking are essential to ensure continuity of quality care for the client at all times. Before we proceed with this topic, let us look at the objectives for this section.
Section Objectives
By the end of this section you should be able to:
• Describe community networking for home-based care;
• Explain the importance of referral and networking in home-based care;
• Identify appropriate referral points;
• Understand limitations and constraints in referral and networking;
• Explain solutions to referral constraints
Let us shall start by learning about networking.
Networking For Home-Based Care
A network can be defined as a group of individuals or an organization that interacts, undertakes joint activities and/or exchanges information and/or ideas in order to strengthen and extend their individual capacities.
|[pic]ACTIVITY |
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|What do you think are the advantages of networking? List them down. |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
|_____________________________________________________________________ |
Now read through the section below and see if your ideas are included.
Networking has the following advantages:
• It promotes unity, harmony and understanding among the groups or individuals;
• It provides a learning experience: people and groups can learn from each other;
• It can assist individuals and groups to address complex problems by involving others;
• It promotes peer support;
• It reduces duplication of work;
• It reduces the isolation of individuals or groups working alone and provides a forum for consultation.
As a health care worker, you can facilitate networking in the community where you work by doing the following:
• Establishing networking at different levels for example district, location and village level. Don’t forget to identify and involve all institutions and groups working who can help you in providing quality and comprehensive HBC;
• Facilitating the exchange of information between one group and another. This would prevent repetition and duplication of efforts.
• Making sure referral channels exist for example, from one centre to another. Letting each organization or individual be aware of the existence of the others. Organising and/or participating in stakeholders meeting is an effective strategy that can be used.
• Ensuring that the basic essentials are available for the betterment of the client who requires Home-based care.
Don’t forget to establish the correct links between one group and another. This is where your community mobilization skills matter. Also remember to share your experiences and information as often as possible.
Now that we understand what networking is, let us look at referral.
Referral
Referral is an effective and efficient two-way process of linking a client from one caring service to another. As we mentioned earlier, you may not be able to deliver all the needs that the client requires. There will be times when your clients or community members necessitate care from other institutions or organizations. It is important to recognize early signs and symptoms that need referral.
Importance of referrals and networking in Home-based care
If you are a health worker then am sure you have referred a client at one time or the other. Why did you refer him or her? I am sure it was for one of the following reasons:
• When services or resources within reach are not able to meet the clients’ immediate needs;
• In cases where the acute phase of the disease has been dealt with and it is considered safe to transfer care to other caring services/organizations within the community;
• When the caregiver experiences burnout and has no access to counselling services for personal growth;
• When the caregiver has limitations in meeting certain needs of the PLWHA or client for example, based on religious beliefs;
• For better, more competent management in the next stage of referral;
• For specialized care in a hospital setting, especially if the client is deteriorating;
• For continuity of care from the health facility downwards or from family level back to the health facility
Study the following figure carefully so that you can understand the basis of a rational referral, the consequences of inappropriate referral and discharge and what is needed for an appropriate discharge and referral.
[pic]
Figure 11: The basis of rational referral. Source: DFID, Sexual Health Care: Care and Support for people with HIV/AIDS in resource-poor setting.
We hope you have noted from this figure that appropriate referrals expand capacity and improve care.
Let us now have a brief look at some of the needed resources for referral
Resources Needed for Referral
Well you need the following resources:
• Referral form that contains information on client’s personal history and the reason for referral;
• Information about where you can refer your clients to (directory);
• A record system that can track referrals;
• Resources to ensure transport;
• Necessary resources at all level of care.
How do we refer clients?
• Identify early the need for referral;
• Choose with the client appropriate referral points and make arrangements by calling in advance;
• Explain to the person why he needs to be referred;
• Make referral arrangements for example transport, what time to leave and how they will travel;
• Prepare the patient for referral. If the patient will be admitted they need to carry certain items, such as, X-ray reports, lab reports, medication and other things required by the institution or the client himself.
• Allow the client to express themselves and try to answer their concerns genuinely;
• Fill in the referral form;
• Ask your clients to give you feedback about actions taken.
Let us have a closer look at some of the appropriate referral points.
Referral Points
There are many different referral points depending on the level and type of care or service required. These include:
• Recognized health institutions: government, private or mission hospitals
• Social support groups
• Spiritual leaders
• Legal agencies and local administration, for example, for writing wills, settling property disputes, and addressing burial disputes and arrangements.
• Any other relevant agencies depending on the client’s needs.
|[pic] |
Figure 7: A simple Home-based care Referral Network: Source: National Home-based care Programme and Service guidelines, MoH, Kenya
However despite the importance of referral and networking processes, there are many constraints to their effectiveness. Let us look at some of the limitations in the context of HBC and how we can overcome them.
Constraints/Limitations in Referral and Networking
There exist a number of constraints that hinder effective referral and networking. These include:
• Competition among various organizations, so that they do not disclose what they are doing and which services are offered. They prefer to work in isolation;
• Lack of evenly distributed community home-based care programmes, with the result that some areas lack services and some are overcrowded;
• Lack of resources needed for clients to travel from one point to another;
• Lack of referral and networking guidelines as well as standardized referral procedures;
• Ignorance among family members about home-based care due to lack of awareness and proper guidance;
• Fear of breach of confidentiality;
• Stigma and discrimination associated with HIV/AIDS, which makes PLWHAs reluctant to accept referral to certain facilities;
• Poor mobilization and sensitisation of partners;
• Lack of confidence in the institution/service where referral is made;
• Lack of updated and proper directory of referral and networking;
• Lack of knowledge by people referring on how and when to refer or network;
• Cultural, social, religious and economic factors.
As a health worker, you can address the constraints we have just mentioned by taking the following steps:
• Holding collaborative meetings among various referral and networking partners;
• Giving correct/proper information on referral to the PLWHA and a proper client history to the referral point;
• Ensuring confidentiality;
• Lobbing and advocating for the rights of the client.
At a wider level, it is necessary to:
• Establish and distribute a standardized and up-to-date directory on referral and networking points;
• Establish standard referral and networking systems where they do not exist;
• Strengthen the existing referral and networking systems;
• Develop standardized referral and networking procedures involving all the components of care;
• Build national capacity in referral and networking for home-based care at all levels using standardized guidelines;
• Lobby and advocate for the rights of PLWHAs.
Summary
In this section we have described networking and referral. We have discussed the importance of networking and referral in home-based care and explained its limitations. Finally we looked at some solutions to the constraints.
Well, you have now come to the end of this unit on home-based care. In this unit you have learnt about the concept and principles of home-based care. We explained the process of community mobilization, the type of resources we need for home-based care and how to mobilise them. We also learnt about effective management of HBC clients through the provision of comprehensive care that needs to include nursing, clinical, psych-social and spiritual care. We highlighted at the end of this unit the HBC referral and networking systems.
I hope you have enjoyed reading this unit and gained the necessary knowledge about comprehensive and integrated Home-based care. In the next unit we shall discuss palliative care of PLWHA.
You can now take a well deserved rest and when you are ready, complete the attached Tutor-Marked- assignment.
Good Luck!
References
1. Clinical Subcommittee on AIDS. National Guides on Community Home-Based Care. Ministry of Health, Nairobi: Kenya,1993.
2. Kisubi, Wilson and Omondi Charles. Training home-based caregivers to take care of people living with AIDS; A curriculum for training community-based health service providers. Pathfinder International. Africa Regional Office. Nairobi ,2000.
3. WHO. AIDS Home Care Handbook. World Health Organization. Geneva,1993.
4. Republic of Kenya: Home-based care for people living with AIDS: National Home-Based Care
5. Programme and Service Guidelines, A Curriculum for training community health workers in Kenya.
6. Home Care Handbook. Home-based care: An orientation package. NASCOP Ministry of Health. Nairobi, Kenya.
7. The Republic of Uganda: Home Based Care Trainers’ guide for Health Workers. STD/AIDS Control Programme, MoH
8. DFID: Health and population occasional paper, Sexual Health and Health Care: Care and Support for people with HIV/AIDS in resource-poor settings
Care of affected and infected children
9. Masiye Camp. First Eastern and Southern Africaregional “think tank” on psychosocial support for children affected by AIDS. Masiye Camp, Zimbabwe, 20–23 August 2001.
10. SAFAIDS/UNAIDS/IFSW. The role of the social welfare sector in Africa: strengthening the capacities of vulnerable children and families in the context of HIV/AIDS. Geneva, UNAIDS, 2000 (can be obtained by writing to info@.zw or Secr.gen@).
11. UNAIDS. Investing in our future: psychosocial support for children affected by HIV/AIDS. Geneva, UNAIDS, 2001 (document UNAIDS/01.47E; UNAIDS Best Practice Collection).
12. UNAIDS. Caring for our children: Promoting community-based responses to children affected by AIDS. Geneva, UNAIDS, 2000 (can be obtained by writing to info@.zw).
13. UNAIDS. Summary booklet of best practices (issue II). Geneva, UNAIDS, 2000 (document UNAIDS/00.34).
14. UNAIDS. Comfort and hope: six case studies on mobilizing family and community care for and by people with HIV/AIDS (bestpractice/collection/types/casestudy.html). Geneva, UNAIDS, 2000 (document UNAIDS/99.10E UNAIDS/00.41F; accessed 9
15. June 2002).
16. WHO. Fact sheets on HIV/AIDS for nurses and midwives (www-nt.who.int/whosis/statistics/
17. Factsheets_hiv_nurses). Geneva, World Health Organization, 2000 (document WHO/EIP/OSD/2000.5;accessed 9 June 2002).
Community development
18. UNAIDS. Summary booklet of best practices (issue II).Geneva, UNAIDS, 2000 (document UNAIDS/00.34).
19. UNAIDS. Community mobilization and AIDS. Geneva, UNAIDS, 1997 (Technical Update UNAIDS/1997).
20. WHO. Community home-based care: action research in Kenya. Geneva, World Health Organization, 2001(document WHO/NMH/CCL/01.01).
21. WHO. Planning and implementing HIV/AIDS care programmes: a step-by-step approach. Geneva, World Health Organization, 1997 (document WHO/SEA/AIDS/106).
Community home-based care
22. International HIV/AIDS Alliance. Communities in action: factors that help or hinder scale up. Newsletter of the International HIV/AIDS Alliance, 2001, 11(August).
23. UNAIDS. Summary booklet of best practices (issue II). Geneva, UNAIDS, 2000 (document UNAIDS/00.34).
24. WHO. Lessons for long-term care policy. Geneva, World Health Organization, 2002 (document WHO/NMH/CCL/02.1).
25. WHO. Community home-based care: action research in Kenya. Geneva, World Health Organization, 2001 (document WHO/NMH/CCL/01.01).
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A word about plastic bags
The plastic paper bags worn to protect the hands may be those used for bread or by supermarkets, kiosks, vegetable sellers, etc. The bags should be large and soft enough to allow one to work easily, but they should not have any holes in them and they should be strong enough to keep the hands dry. The bags can be tied at the wrist or fastened with rubber bands so they don’t come off easily.
INTEGRATED HIV/AIDS PREVENTION, TREATMENT AND CARE
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DIRECTORATE OF LEARNING SYSTEMS
DISTANCE EDUCATION PROGRAMME
Unit 11
Home And Community Based Care Of PLWHA
|[pic] | |
| |Allan and Nesta |
| |Ferguson Trust |
Home Treatment for Pressure Sores
Some home treatments have been known to work very well in treating sores.
Papaya: This fruit contains chemicals that help make the old flesh in a pressure sore soft and easy to remove.
• Soak a piece of cloth in the “milk” that comes from the trunk or green fruit of a papaya plant
• Pack this into the sore
• Repeat it 2 or 3 times as necessary
Honey and sugar: This mixture will kill germs, help to prevent infection, and speed healing.
• Mix honey and sugar into a thick paste
• Press this deep into the sore and cover with a clean cloth. (molasses or thin pieces of raw sugar can also be used)
• [pic][?]Zc‰Š‹?×Þ h«|¦hC~)OJ[?]QJ[?]U[pic]^J[?]mH sH &h«|¦hC~)5?6?CJOJ[?]QJ[?]^J[?]aJClean out and refill the sore at least 2 times a day. If the honey or sugar becomes too filled with liquid from the sore, it will feed germs rather than kill them.
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