HOME BASED CARE

MR. OSURU
OBJECTIVES……..
Define HBC.
Describe concepts and principles of HBC
Describe the major components of HBC
Describe the management of patients requiring
HBC
Describe the process of community mobilisation
Describe the community resources needed for
effective and sustainable HBC
Describe an effective referral and networking system
CONCEPTS & PRINCIPLES OF HBC
Definition 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.
Components of Home-based Care

 There are four (4)components of comprehensive

home-based care:
1. Clinical Care
2. Nursing Care
3. Counselling and Psychospiritual Care
4. Social Support
1. Clinical Care

Clinical care comprises early diagnosis, rational and

targeted treatment and planning for the care of persons
suffering from chronic or terminal and debilitating illnesses.
The patients who are assessed and referred for home-based
care need the continuum of care extended rationally.
Can you think of reasons why a patient may not receive good
quality home-based care? One reason is that
complications 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.
2. Nursing Care

Patients 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.
3. Counselling and Psychospiritual 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
psychospiritual care reduces stress and anxiety for
both the patients and their families. It also helps
individuals to make informed decisions on say HIV
testing, planning for the future, making behavioural
changes and involving sexual partner(s) in such
decisions
4. Social Support

On many occasions when patients are discharged from health

facilities, you fail to realise the network of social and support
services that they can benefit from. Patients with chronic and
debilitating conditions need information and referral to
support groups such as church organisations, youth groups and
other social organisations. 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 organisations.
These individuals also need to be accepted by society and get
involved in community activities depending on their
capabilities.
Rationale for Home-based
Care
 You are probably well aware of the big problem presented by HIV/AIDS to the health care services in
this country. Demand for health services has increased due to the growing numbers of individuals who
have become ill as a result of HIV infection. This has resulted in an increased workload and congestion
of health facilities.
Hospital bed occupancy rates have increased with over 55% of beds occupied by People Living With
HIV/AIDS (PLWHA). Apart from HIV/AIDS, other chronic diseases such as cancer have made people
require long-term care.
In addition 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. HBC will train HBC providers to offer continued quality services and also coordinate
services between the community and health facility after discharge.
 HBC helps reduce the stigma attached to some chronic diseases as the providers are knowledgeable of
the diseases, which assists them to change their attitudes toward the disease and the patient.
 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, few hospital beds and a
shortage of other resources.
 HBC offers support that will enable the patient to extend their productive lives for many years.
Objectives of home based care…….
 To facilitate the continuity of the patient's care from the health facility to the home
and community.
 To empower the patients, the family and the community with the knowledge
needed to ensure disease prevention, care and support-related to the
chronic illness.
 To enhance the functioning of critical system and process to enable accessible,
effective and sustainable HBC.
 To streamline an appropriate structure for the patient referral from the institutions
into the community and from the community to appropriate health and social
facilities.
 To establish appropriate structures and systems for management, coordination,
networking and resource mobilisation.
 To articulate policy and advocacy positions that yield clearly defined roles and
responsibilities, build strong leadership support and help reduce stigma.
 To establish systems to facilitate provision of a comprehensive continuum of care
that meets priority needs of infected and affected people.
Principles of Home-based care……
 Ensuring appropriate, cost-effective access to quality health care and support to
enable persons living with chronic illnesses to retain their self-sufficiency and
maintain quality of life.
 Encouraging the active participation and involvement of the patient and their family.
 Targeting social assistance to all affected families especially children.
 Caring for caregivers, in order to minimise 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 needs of persons living with chronic illnesses.
 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.
Advantages of Home-based Care

1. The Patient
 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 the patients 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 the patient 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.
 When the patient 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.
2. 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. 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.
3. 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, misconception and
beliefs especially in relation to chronic illnesses, for example,
HIV/AIDS and epilepsy. An informed community counteracts
these myths and beliefs and is therefore able to actively
participate in prevention efforts.
 It's cheap. The cost is shared as members contribute for
upkeep and the costs of going to visit a person in hospital are
reduced.
 Community cohesiveness is maintained. This ensures that the
community is able to respond to other members' needs.
4. The Health Care System

HBC reduces the pressure on hospital services and

hence the health system. Therefore hospitals have
fewer patients to attend to and thus are able to provide
quality services to those patients who require short-
term care.
Reduces cost of outreach/mobile clinics.
Disadvantages of HBC

1. Expensive especially in poor resource countries. It involves training of

the care providers, availability of equipments and supplies and
management of the systems.
2. Sustainability may be hard especially where the community does not see
the importance, where the resources are poor or there is no motivation
for the providers.
3. Requires leadership support and adequate structures at various levels,
which limits ability to achieve greater coverage, effectiveness and
sustainability.
4. It requires related systems in other areas, for example planning and
budgeting processes within MOH, technical support system, networking
to facilitate skills transfer, psychological and spiritual support.
5. Affected by other external factors like poverty, hunger, stigma, denial
and community expectations.
Who are the key players/providers in HBC?

1. The patient
2. Family members and other caregivers
3. HBC team
4. Health workers
5. Community and community organisations
6. Government
7. NGOs
1. Role of the Patient

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.
2. Role of Family Members and Caregivers

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 that could be
involved in providing the services in the family. This becomes shared
responsibility on issues of referral and networking.
 Learn to consult with the patients on matters concerning them.
 Involve the patient in all care activities and any other family activities
without discrimination.
 Encourage and help the patient to write a will.
 Remember that being present is a major support.
3. Role of Home Care Team

The home care teams should be able to:

 Manage patient's disease-related conditions.
 Provide home nursing care.
 Arrange voluntary counselling and testing services for HIV.
 Provide supportive counselling.
 Refer the patients for further specialised care such as treatment,
radiotherapy, counselling, and emotional/spiritual support.
 Educate patient/family/community on related diseases.
 Arrange spiritual/pastoral care.
 Mobilise resources for support of the programme.
 Train the caregiver on all HBC services.
 Provide facilitative supervision to the caregiver.
 Train the patients on how to care for themselves.
4. Role of Health Workers

Their role is to:

 Initiate, inform and create awareness of the HBC process by
recruiting the patients to the programme, identifying needs at
various levels, and preparing the patient 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 patient's condition and needs change.
 Care for the terminally ill depending on their wish.
5. Role of the Community

Their role is:

 Accept the situation of the patient and learn to collaborate
and work with existing agencies (such as religious groups,
women's groups, and other social and health agencies)
around to meet the needs of those infected/affected.
 Encourage the patient 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 like hepatitis and HIV.
 Advocate for behaviour change.
6. Role of the Government
The role of the government is:
Create a supportive policy environment
Develop policies and guidelines
Develop and maintain standards
Provide/coordinate training
Provide drugs, equipments and supplies
Help in the formation of support groups, which in
turn would lobby and advocate for the rights of the
patients
PATIENTS FOR HOME-BASED CARE
SERVICES
 HIV/AIDS
 Patients with Cancer
 Medical and Surgical Conditions that May Require HBC
 Spinal injuries and paralysis
 End stage chronic obstructive pulmonary disease
 Chronic renal failure
 Liver cirrhosis
 Patients with ulcerative colitis, Crohn's disease or cancer of the bowel with ostomies for faecal diversion
 Chronic hypertension
 Diabetes
 Age-related body system changes
 Patients with amputations
 Patients with mental illnesses
 Gout
 Arthritis
 Parkinson's disease
 Epilepsy
 Multiple sclerosis
HBC Nurse has to ensure:

 Comfort and pain management

 Personal and general hygiene
 Medications, their administration and safety and
management of their side effects
 Activities of daily living for the patient, for example,
elimination, eating, reproduction and others
 Alleviation of fear, anxiety, depression and general
psychological care
 Nutrition
 Physiological and spiritual integrity
 Security and safety
COMMUNITY MOBILISATION

Definition:
It is the process of getting the community incorporated
to fully participate in the programmes for the purpose of
ownership and sustainability.
HBC 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, planning, organisation,
implementation and monitoring of activities associated
with HBC.
Importance of Community Mobilisation

 Prepare the community for participatory action.

 Create awareness about their health problems, causes,
prevention and care required.
 Identify problems together with the community and seek
means of solving them.
 Gather information about the community’s beliefs’,
feelings, myths and misconception of their problems.
 Identify available resource and how the resources can be
used to solve the problems.
 Establish relationships within the community.
 Ownership and sustainability of the programme
factors that hinder community
mobilisation.
 Lack of involvement in problem identification
 Lack of appropriate information
 Lack of resources
 Resource mismanagement
 Insecurity
 Lack of social structure
 Communication barriers
 Poor health
 Lack 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
Possible solutions are:
 Training and skills development.
 Provision of relevant Information, Education and Communication
(IEC) materials.
 Involvement of target group to design appropriate information.
 Encourage Income Generating Activities (IGA) and
skills development.
 Identification and use of appropriate communication
channels/methods.
 Ensuring participation and involvement from the beginning.
 Community sensitisation and mobilisation in all activities.
 Putting in place mechanisms for disaster preparedness.
 Proper planning, monitoring and evaluation of activities
methods of mobilising the community
Some of the ways of mobilising the community are:
Meeting at specific prefixed times.
Existing committees, such as the village
development committee.
Home visits to groups and individuals.
Announcements at church, mosque, temple, and
school.
Group community talks.
The Process of Community Mobilisation
COMMUNITY RESOURCES

Resources Needed for Home-based Care

 To effectively provide HBC, there are certain resources
that are needed.
These resources can be broadly classified into four
categories or the 4Ms.
 Money
 Materials
 Minutes (Time)
 Manpower
REFERRAL AND NETWORKING FOR HOME-BASED CARE

What is a network?
A network is a group of individuals or organisations
that work together, undertake joint activities, or
exchange information in order to strengthen and
extend their individual capacities.
Networking has the following advantages:

1. It promotes unity, harmony and understanding

among the groups or individuals.
2. It provides a learning experience, people and groups
can learn from each other.
3. It can assist individuals and groups to address
complex problems by involving others.
4. It promotes peer support.
5. It reduces duplication of work.
6. It reduces the isolation of individuals or groups
working alone and provides a forum for consultation.
REFERRAL

Definition:
Referral is an effective and efficient two way process of
linking a patient from one caring service to another.
Why are patients referred
 When services or resources within reach are not able to meet the patients’
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/organisations 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 patient, for
example, based on religious beliefs.
 For better, more competent management in the next stage
of referral.
 For specialised care in a hospital setting, especially if the patient is
deteriorating.
 For continuity of care from the health facility downwards, or from family level
back to the health facility.
Constraints/Limitations in Referral and Networking

 Competition among various organisations, 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 HBC programmes, with the result that some areas
lack services and some are overcrowded.
 Lack of resources needed for patients to travel from one point to another.
 Lack of referral and networking guidelines as well as standardised referral procedures.
 Ignorance among family members about HBC 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 PLWHA reluctant to accept referral to certain facilities.
 Poor mobilisation 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.
What are the solutions to these
constraints
Holding collaborative meetings among various referral
and networking partners
Giving correct/proper information on referral to the
relevant organisations and a proper patient history to
the referral point
Ensuring confidentiality
Advocating for the rights of the patient