HOME-BASED CARE

CONCEPTS, PRINCIPLES AND COMPONENTS OF HOME-BASED CARE

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 has had to adopt a different approach to health sector
policy and health care services including Home-based care approach.

The Concept of Home-Based Care

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 and comprehensive care which relies on collaboration between the
hospital, the family of the client, and the community, in order to enhance the quality of
life of the patients and their families. The concept of Home-based care 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.

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;
 To promote family and community awareness of disease prevention and care related
to chronic illnesses;

1
 To empower the clients, the family and the community with the knowledge needed to
ensure long-term care and support;
 To raise the acceptability of terminally ill patients by the family/community, hence
reducing the stigma associated with the chronic disease;
 To streamline the patient/client referral from the institutions into the community and
from the community to appropriate health and social facilities;
 To facilitate quality community care;
 To 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.

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;
 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;

2
 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.

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. This therefore implies that these
patients require certain services. These services form the components of home-based
care.

Components of Home-Based Care

There are four components of comprehensive Home-Based care. They include;
 Clinical care
 Nursing care
 Counselling and psycho-spiritual care
 Social support
All home-based care programs must contain some combination of the four components,
although the proportion of each component is determined by local realities and needs.

Clinical Nursing
Care Care

Psychological Social
& Spiritual Support
Care

3
Fig; components of home-based care

Let us first look at the needs of home-based care patient and later we shall see how the
above components apply in management of the home–based patients.

Needs of Home Care Patients/Clients

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.

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 the disease e.g. 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

4
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. Terminally ill patients 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 terminally ill patients /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

5
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.
These needs fit into Maslow’s hierarchy of human needs. 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 patients/clients condition. Family members of
terminally ill patients will need proper education on the condition and demonstrations on
the care they will be expected to provide.

For instance, family members of PLWHAs should be educated on STIs/ HIV/AIDS and
how to care for these patients. 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.
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;

6
 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 patient/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
Orphans too have a number of needs. 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;
 Health care.

Components of home-based care and how they meet the needs of the
patients/clients

7
 1. Nursing care
Clients for HBC need nursing care to promote and maintain good health, hygiene and
nutrition. As a community health nurse, it is your responsibility 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.

What do you think happens to all those patients whom we discharge from hospital with
residual effects of diseases and complications? Somehow, their families, friends and
community 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.

Basic Home Nursing Skills

When individuals fall sick, both the body and the mind are affected. This affects their
ability to carry out routine activities. 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 can be provided to a sick person in hospital or at home.

Components of nursing care

 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:

8
 - Diarrhoea 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 patient/client to the hospital or health facility when need arises
 Reassuring the client at all times

2. Nutrition for Home-based Care Patients/Clients

It is very important to put much emphasis on the importance of good nutrition in the
management of HIV/AIDS and other chronically sick patients at all stages. Good
nutrition is essential for maintaining strength and the body’s immune system. Attention
to nutrition should begin as soon as the person is diagnosed with a disease. The
patient/client should be informed very early that eating well means more than just
having a full stomach; it means eating the right combination of foods to provide the
nutrients the body needs to function properly. Sick people have an even greater need
for a well balanced diet than healthy persons, but with proper nutrition, they can
generally stay healthier longer.

Factors that influence nutrition

People living with HIV/AIDS and chronic diseases like cancer and diabetes have many
questions about their diet. Loss of appetite or difficulty in eating can be very distressing
for the sick person, making them feel helpless and ineffective. The loss of weight can
cause much fear. All the foods the family is familiar with can be combined to meet the
nutritional requirements of the patient/client and hence allay the fears and answer their
many questions.

Several factors may influence nutrition. These include:

 Cultural beliefs, taboos and practices relating to foods;

9
 Economic status of the family and community: poverty, famine and poor access to
clean water;
 Natural climatic changes like drought and floods;
 General conditions of the clients that decreases the food intake: mouth sores, lack
of appetite, pain when swallowing, nausea, abdominal pain, diarrhoea, neurological
diseases/anorexia;
 Factors that increase the metabolic demands: fever, acute illness and HIV-infection
itself;
 Side effects of antiretroviral therapy (ART) when the treatment is initiated: GI
intolerance, nausea, dyspepsia, vomiting and diarrhoea. Major side effects like
pancreatitis and hepatitis;
 ART and dietary restrictions.

Though it is difficult to overcome some of the economical and environmental barriers,

you can take the following actions to improve the nutritional status of the clients:

 Assess the nutritional status of all clients;

 Identify clients who require more extensive nutrition management;
 Identify “high risk” signs and symptoms;
 Individualize nutrition care plans;
 Improve food intake during HIV/AIDS-related infections by diagnosing and treating
the infection;
 Counsel clients about which foods to eat;
 Educate AIDS patients on ART and drug-food interactions.

Components of a Balanced Diet

Foods can be divided into three basic categories, with each playing its important role in
nutrition. The basic food groups are:

10
 Body building: Includes animal and vegetable proteins such as meat, fish, milk,
chicken, eggs, beans of all types, soya, groundnuts, green grams, cow peas,
ndengu.
 Energy giving: Includes starchy foods like potatoes, yams, cassava, bananas,
sugar, wheat, rice, maize meal, bread, chapati, pasta, as well as fats and vegetable
oils
 Protective: Includes foods that contribute a variety of essential nutrients, such as
oranges, pineapples, pawpaw, mangoes and other fruits, as well as carrots, sukuma
wiki, spinach, tomatoes, all local green leafy vegetables.

In addition, water and minerals like iron and calcium are essential to good nutrition.
Water is necessary for bodily functions and to prevent dehydration. Minerals are
necessary elements of blood, bone, teeth, and body processes. Examples of foods that
are rich in iron are fish, meat, and dark green leafy vegetables. Calcium is derived from
milk, groundnuts, and eggs. Other important minerals like potassium, selenium, zinc,
and magnesium are vital for survival. In most cases, people with HIV/AIDS need food
supplements.

Common Nutrition Problems

The most common problems associated with poor nutrition are:
 Severe weight loss as a result of poor appetite leading to failure to meet dietary
requirements. This can be overcome by encouraging small, frequent feeds;
 Anaemia due to poor dietary intake or lack of iron in the diet. It may be as a result of
infections such as malaria, hookworm or other parasite infestations that destroy red
blood cells;
 Skin conditions due to lack of vitamins in the diet, for example, scurvy and pellagra;
 Failure to thrive or maintain a reasonably good level of health.

Common Feeding Problems in Home-based Clients/Patients

During certain illnesses, such as HIV/AIDS, patients may have extra difficulty eating or
may need to eat different types of food. The following advice needs to be given:

During diarrhoea

11
 Eat soft, mashed foods that are easy to chew and swallow.
 Eat small meals; five or more times a day.
 Drink a lot to prevent dehydration (water, tea, uji, juice, home-made rehydration
solution).
Oral Thrush
 Eat soft, mashed foods;
 Drink lemon water or suck on a lemon;
 Avoid sugary foods and milk.

Sore Mouth
 Avoid spicy and pili-pili foods;
 Avoid foods which require a lot of chewing;
 Avoid very hot food, but try cold foods to see if they will numb the mouth.
NB;
Seek help when the clients are not able to eat enough to maintain their
strength.
Nutritional Advice can be on general nutrition and also specific on the disease
conditions E.g. for Diabetic diet.

3. Clinical Care
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. This is referred to as the continuum of care. It is
collaborative care provision by the health care workers, the family members and the
community.

Clinical care comprises early diagnosis, rational and targeted treatment and planning for
the care persons suffering from chronic or terminal and debilitating illnesses. 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, the purpose and spirit of home-based care would be defeated.

12
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, cancer and other terminal
illnesses;
 Reducing the suffering from conditions associated with the HIV/AIDS infection,
cancer, diabetic, hypertension and other chronic illness;
 Protecting the client against further infections especially during a long hospital stay;
 Preventing transmission of HIV or other opportunistic infections from PLWHAs to
health workers, relatives and friends;
 Ensuring that drugs prescribed to the client by the clinician are administered at home
according to the regimen of intake.

4. 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 say HIV testing, plan for the future,
make behavioural changes, and involve sexual partner(s) in such decisions.

Counselling helps people to understand and deal with their problems and communicate
better with those around them. This requires the utilization of the knowledge, skills and
attitudes on communication and counselling to care for Home-based care patients.
Psycho-spiritual support is also 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 or
bible, etc.
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

13
 Group counselling
 Family counselling
 Supportive counselling
 Crisis counselling
 Spiritual/pastoral counselling
 Death and bereavement counselling

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 client to come to terms with the disease condition 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.
A good counsellor must have the following tools to be effective:
 Listening
 Responding
 Understanding
 Communicating
 Keeping confidential all that they learn from the patient.

In counselling, the focus is the person, not the disease. You should be able to listen
actively and respond empathetically. Because of the feelings that your patients may
have, you should be able to influence your clients to be religious. This gives rest to the

14
mind. Forgiveness and reconciliation replace anger and guilt. You can invite spiritual
persons to come and talk to the sick person.

Many illnesses cause emotional, physical, and psycho-social pain and stress. Some of
the stages of stress include;
 Shock, fear and denial;
 Accepting, withdrawal, Depression, suicide;
 Accepting help, making plans about self and family;
 Becoming ill and weak;
 Anger, despair, sadness.

While communicating, you should be aware that this is a two way process. It should
involve a response from the client. You should be able to persuade, inform and assist
the client to take action.

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.

5. 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.
What services and support institutions does a terminally ill patient who has been
discharged need?

 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 nongovernmental organizations.
 These individuals and their families may also require legal advice and material
assistance. These services compliment the care we give in our health facilities.

15
We can show our clients that we have accepted them by including them in day to
day activities if they are able. They should eat with the family, eat out 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.
Those who want to take over responsibilities should not be denied the chance.

When patients are having a terminal illness they should be assisted to prepare for their
deaths with good psycho-spiritual care and support. Many clients can live fulfilling lives
and die peacefully. Clients should be given opportunities to write their own wills.

when you provide the services that meet a client’s needs, you help them to:

 Meet material / physiological needs;

 Provide a sense of belonging;
 Reduce anxiety;
 Improve on relationships and;
 Ensure a high quality of care.

This ultimately contributes to a client’s quality of life.

In summary, the areas in which Home-based care services are provided are:
 Nursing care (Personal and general hygiene);
 Nutrition;
 Advice and promotion of positive living habits and behaviour;
 Support through counselling and other links with other services;
 Treatment of the specific disease related conditions and complications;
 Physical therapy.

Rationale for Home-based Care

I am sure you are well aware of the big problem presented by HIV/AIDS and other
terminal diseases to the health care services in our country. Demand for health

16
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 a large % of beds
occupied by people with terminal diseases.
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 e.g. HIV/AIDS need continuity of care to
prolong their productive lives and reduce their suffering;
 Health institutions have many limitations such as shortage of health workers, few
hospital beds and a shortage of other resources.
 HBC helps reduce the stigma attached to some chronic diseases, as the providers
are knowledgeable of the diseases, thus assisting them change their attitudes
towards the diseases and patients.

Advantages of Home-based Care

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.
The patient/client

The following are the advantages of HBC to the patient or 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;

17
 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.

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;
 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.

The community
 Training in home-based care helps community members to be aware of the various
illnesses affecting members of their communities. As always there are myths and
beliefs especially in relation to HIV/AIDS and other chronic diseases. An informed
community counteracts these myths and beliefs and is therefore able to actively
participate in prevention efforts;
 The costs of going to visit a person who is sick in hospital are reduced;

18
 Community cohesiveness is maintained. This ensures that the community is able
to respond to other members' needs.

The Health Care System:

 There are areas where a hospital is not accessible to some people. Imagine a
patient in a village in Turkana which is hundreds of kilometres away from the
nearest health facility. How can this person’s wound be dressed or how can he
be cleaned or lifted within the home environment? This can only be achieved
through training in home- based care;
 HBC reduces the pressure on hospital services and hence the health system.
Therefore hospitals have fewer people to attend to and thus are able to provide
quality services to those patients who require short-term care.
 It also reduces cost of outreach / mobile clinics.

Fig: Diagram of a patient being cared for at home.

Key Players / Providers of Home-based Care

The following are the key providers of home-based care:
 The patient or client
 Family members and care givers
 Home care team

19
  Health workers
 Community and community organizations
 Government
 NGOs

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.

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 illnesses
 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

20
 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.

As a community health nurse you need to provide them with education on home
nursing skills, counselling, as well as information on psychosocial and material
support, patient caregiver interaction and communication.

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 client/family on the condition and other related diseases
 Arrange spiritual/pastoral care
 Mobilize material support
 Train the caregiver on all HBC services.
 Provide supervision of the caregiver.

21
 Train the clients on how to care for themselves.

Role of Health Workers

The health facility plays a very important role in the provision of HBC. The institution-
based trained health workers include Nurses, Clinical Officers, Physiotherapists,
Nutritionists, Doctors and many others. Their role is to:

 Initiate and market the HBC process by recruiting the patients/clients to the
programme; identifying needs at various levels, and preparing the patients/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 patients/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 infections e.g. HIV
and hepatitis
 Advocate for behaviour change

Role of the Government

22
 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 patients including PLWHA

Below is a diagram of the relationship and functioning of the care team and HBC
services.

Health Worker
(Institution based)

CBHW

Patient Family/
Community
Relatives/friends

Fig: Relationship and functions of the care team and HBC Services
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.
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

23
 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
choose 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.
Self Test
1. Briefly explain the components of Home-based care
2. Explain the rationale for Home-based care
3. What are the advantages of Home-based care to:
(a) The patient
(b) The health care system.
4. Describe the tasks of the community based health worker in relation to home-based
care.
5. Describe the tools needed by a counsellor to be effective in Home-based care.
6. Describe pain management for terminal cancer patients on Home-based care.

Infection Transmission in the Home-based care setting

Infection transmission in the home-based care setting can take various forms. A Client
can transmit an infection to a Caregiver, a Caregiver can spread an infection from one
client to another, Caregivers can cross infect their family members and the community,
a Caregiver can transmit an infection to the client, and finally there can be self infection.
The CHW, care giver and client should be educated to observe infection prevention
measures which participating in HBC activities.
COMMUNITY MOBILIZATION FOR HOME BASED CARE
Everybody in the community must be involved and taught how to provide Home-based
care. This can only be achieved through mobilizing the community to embrace HBC.
What is community mobilization?

24
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 patients 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 Importance of community mobilisation is to:
 Prepare the community for participatory action;
 Create awareness about the problems that your patients are suffering from, e.g.
HIV/AIDS, causes, prevention and care required;
 Identify problems together with the community and seek means of solving them;
 Gather information about resources, persons beliefs, myths and misconceptions of
their problems etc;
 Establish relationships within the community;
 Ownership and sustainability of the programme.

In the context of home-based care, it has the following advantages:

 It helps to counter the stigma (e.g. for PLWHAs and what their families face), so that
they can live without fear or discrimination;
 It involves the patients themselves and helps them to “live positively”;
 It can increase community awareness and thus helps prevent the further spread of
infections e.g. HIV;
 It facilitates the mobilization of local resources and it brings the community together
in the care of patients, orphans, and others;
 It leads to community empowerment, ownership and sustainability of the services.

Factors that can hinder community mobilisation

25
 Lack of appropriate information;
 Lack of involvement in problem identification;
 Lack of resources and 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;
 Poor timing.

What are the possible solutions?

 Training and skills development

 Provision of relevant IEC materials
 Involvement of target group to design appropriate information
 Encourage IGA and skills development
 Identification and use of appropriate communication channels/methods
 Ensuring participation and involvement from the beginning
 Community sensitisation and education
 Putting in place mechanisms for disaster preparedness
 Proper planning monitoring and evaluation of activities

Community Mobilizers

26
Community mobilizers are resource persons or groups who you can work with in order
to promote home-based care activities.
Eg of community mobilizers include;
 Local administrative officers and leaders such as chiefs, assistant chiefs,
councillors and area members of parliament;
 Leaders of various programmes, e.g. 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;
 Other ministries workers like school teachers;
 Patients / clients themselves;

Mobilizing the community for home-based care services can be done through a variety
of ways. The following are some of the ways of mobilizing the community:
 Meeting at specific prefixed times;
 Existing committees such as village development committee;
 Home visits to groups and individuals;
 Announcements at church, mosque, temple and school;
 Group community talks.

27
Fig: Mobilizing the community for home-based care

NB: 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.

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.

1. 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:

28
- Knowing about and believing in home-based care so that you can explain it very
well to the people (community);
- Knowing the community leadership and those who can influence the acceptance
and implementation of home-based care services;
- Preparing oneself 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.

2. 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.
3. 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.

29
 4. Step 4: Monitoring the community response and making reinforcements for action.
This you do by:
 Watching for signs of acceptance of home-based care, for example;
- Community asking for more information about home-based care
- Community taking interest in supporting the activities for the patients/clients
- People volunteering to act or work with the community health workers
- People voluntarily seeking assistance to take care of the terminally ill patients

 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, the community.

Community Sensitisation and Motivation

As we mentioned earlier, the first and second steps 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.
These are the people who will act as advocates of home-based care. Community
members must clearly understand both 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 e.g. Home-based care can die out if there is no motivation. You
can work around this by:
 Identifying traditional beliefs, which are interfering with Home-based care;
 Explaining the disadvantages of not participating;
 Countering negative attitudes by some people by involving their friends and
relatives;
 Seminars and workshops for the leaders;

30
 Helping plan for trips for staff from the health facility.

Failure of activities can also occur due to problems of:

 Transport;
 Punctuality and poor management;
 Inaccurate orders for supplies and inadequate equipment;
 Long distances between facilities and communities resulting in less contact and
communication;
 Communication barriers;
 Natural calamities e.g. Bad weather and famine making some communities shift
from one area or shift their attention;
 Lack of teamwork;
 Poor referral system.

Again, you can work around these problems by:

 Planning good orders and requisitions for supplies for Home-based case
 Being punctual when required.
 Having mobile clinics and using local leaders to pass on instructions and other
correspondence.
 Having frequent meetings, discussions and involvement among health facility staff,
community members and other stakeholders;
 Establishing a well structured referral system.

Besides this, when sensitizing the community, you can give out handouts; attend
barazas, go to schools and churches, use film and other media and make public
announcements through radio programmes about the diseases to ensure adequate
knowledge and motivation.

Community Involvement, Participation, Ownership and Sustainability

When you start a programme such as home-based care in the community, you must
involve the community right from the start. If they understand you well, they will make

31
the project their own. 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.

Self Test
1. Define community mobilization.
2. Describe the importance of community mobilization.
3. List at least 5 community mobilizers who can assist you in introducing home-
based-care in your catchment area.

COMMUNITY RESOURCES
Resources needed for home-based care.
To effectively provide Home-based care, there are certain resources that we need.
These resources can be broadly classified into four categories or the 4Ms:
 Money;
 Materials;
 Minutes (Time);
 Man power.
Resources are required at every level of the home-based care continuum. The players
at each level are expected to contribute to the fullest extent possible.

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 patients with terminal illnesses. However you should

32
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 members and patients on the need for the
funds and the likely sources of the funds.

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 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 explain to your clients how they can
obtain these materials to avoid disappointment.

MINUTES (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.

33
Yet, time is one of the most essential resources known to man. To be able to
accomplish tasks, we need time. Time is essential.
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.

MANPOWER
Manpower is another important resource, which we often overlook. These are the
individuals who voluntarily spare their time to assist the clients, their families and
children.
People who can assist the client or patient in HBC 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 including students from neighbouring 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.

In the later 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

34
volunteer care provider also needs continuous support from the community, morally and
materially.

Sources of the required resources

From the Individual

 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.

Resource mobilization for home-based care

The resources that we have mentioned are not all easily available. As a community
nurse, 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. You also need to understand the process of procurement. Get to know the

35
procurement procedures and the paperwork that needs to be filled. You need to do all
you can to mobilise the resources needed at the local level. If the client needs mosquito
nets, you can link the caregivers with NGOs that give them out. Even some drug
manufacturers give out free drug samples.

People in the community can also be mobilized to assist in home-based care. These
could be trained volunteers, students or untrained community members who are willing
to be trained. As a community nurse, you must be ready to go an extra mile to mobilize
resources necessary to provide Home-based care for your clients.

Self test
1. List down four resources available in our community
2. List at least 6 sources of the community resources
3. Explain the process of mobilizing community resources in the set up in which you
work.

REFERRAL AND NETWORKING FOR HOME-BASED CARE

As you are well aware, when you work in a community you cannot work alone. The work
is too much and you may not have all the resources necessary to accomplish your
goals. In order to be effective you must network and refer your patients. Referral and
networking are essential to ensure continuity of quality care for the client at all times.

Networking For Home-Based Care

What is a network?
A network is a group of individuals or organizations that work together, undertake joint
activities, or exchange information in order to strengthen and extend their individual
capacities.
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;

36
 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.

In Home-based care, several networks exist. There are networks for individuals working
with PLWHAS, cancer patients, and so on. Several networks may also exist for people
infected and affected by, for example, HIV/AIDS.
As a community health nurse, you can facilitate networking in the community where you
work by doing the following:

 Establishing networking at different levels e.g. district, location and village. Involving
all institutions and groups working with the disease, such as HIV/AIDS;
 Facilitating the exchange of information between one group and another. This would
prevent repetition and duplication of efforts.
 Making sure referral channels exist, e.g., from one centre to another. Letting each
organization or individual be aware of the existence of the others.
 Ensuring that the basic essentials are available for the betterment of the client who
requires Home-based care.

You should never 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.

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 do all things by
yourself or indeed at the same place. There may arise a time when you need to send
your clients or community members to other institutions or people for further care.

We refer clients/patients due to the following reasons:

37
 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 patients 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

Referral to and from the family/community should be well arranged to avoid

unnecessary burdens to the patient and family.
The patient and the family should be prepared for the discharge and told what
equipment and supplies they require for HBC.
The HBC team should also inform the family that in case of a change of condition of the
patient, the patient will be referred to a health facility including what the family requires
for the referral.

38
You need the following resources for referral:
 Referral forms that contain information on the patient’s particulars, disease
condition, reasons for referral, who has referred and to whom, care which has been
provided before referral and a small note requesting for feedback; which are easy to
understand;
 Information about where you are referring your clients to;
 A record of all the referrals that have been undertaken.

How do you go about referring your patients?

 You identify those that need referral;
 Decide where to refer and make arrangements by calling in advance;
 Explain to the person being referred about the referral and the referral
arrangements i.e. what time should they will leave and how they will travel;

39
 Prepare the patient for referral. If the patient will be admitted they need to carry
certain items, such as, X-ray reports, lab reports and other things required by the
institution or the patient/client himself. Make transport arrangements for them;
 Allow the client to express themselves and try to answer their concerns genuinely;
 After that, fill in the referral form, obtain escort for the client and ask your clients to
give you feedback about actions taken. Thank them and bid them farewell;
 You should then be able to follow-up on the referral and document what happened
to the client.

Health facility

Legal services and

aid e.g. Mills Spiritual/counseling
support

Home Care Team

Communication Care for

With family orphans/Widows/
Widowers

Patient/Client

Fig: A simple home-based referral network

Constraints/Limitations in Referral and Networking
Despite the importance of referral and networking processes, there are many
constraints to their effectiveness. 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;

40
 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 some chronic illnesses like 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;
 Poor management of referral system.

Solutions to these Constraints

As a health worker, you can address these constraints by taking the following steps:
 Holding collaborative meetings among various referral and networking partners;
 Giving correct/proper information on referral to the patients with terminal illnesses
and a proper client history to the referral point;
 Ensuring confidentiality;
 Lobbing and advocating for the rights of the client.
NB: Appropriate referrals expand capacity and improve care

Self Test

1. Give 5 reasons why networking is important.

2. Describe the process of referring a client with HIV/AIDS complications to the
provincial hospital from a district hospital.

41
3. List at least 10 (ten) Referral points and organizations that you can send your
patients to.

42