JARAMOGI OGINGA ODINGA
UNIVERSITY OF SCIENCE AND
TECHNOLOGY (JOOUST) BONDO
CAMPUS
HOME BASED HEALTH CARE
By Ms. WERE FLORENCE, MSc
MAY – AU6 2015
Definition of Home-Based Care
• "Home-based care includes the care given to the sick and
affected in their own homes and care extended from the
hospital or health facility to their homes through family
participation and community involvement. This is a
collaborative effort between hospital, family and
community. It includes components such as physical,
psychological and spiritual support".
• Home-based care is an approach to care provision that
combines clinical services, nursing care, counseling and
psycho-spiritual care, and social support. It represents a
continuum of care, from the health facility to the
community to the family to the individual infected with
HIV/AIDS, and back again.
Definition of Home-Based Care
• Home-based care will help us do just that, as it
helps us change attitudes towards persons living
with HIV/AIDS and towards the disease itself.
Home-based care recognizes that a diagnosis of
HIV does not necessarily mean death is at hand,
and it helps reduce the stigma attached to the
disease.
• Home-based care can provide the support that
will enable HIV-positive persons to extend their
productive lives for many years, "living positively"
in the fullest sense of the world.
Definition of Home-Based Care
• Home-based care represents a partnership in care that has
many advantages for the PLWHA, for the PLWHA's family,
for the community, and for the health-care system.
• Home-based care is not only an important mechanism for
extending the continuum of care by providing at home the
basic nursing care and treatment necessary for many of
the afflictions that strike PLWHAs.
• It also promotes community awareness of HIV/AIDS,
provides powerful examples to motivate behaviour change
and decrease the stigma attached to the disease, and
enables PLWHAs to maintain their family and community
roles.
Definition of Home-Based Care
• Home-based care is cost effective as well. It frees up
hospital beds and medical personnel for the acutely
ill and thus relieves the burden on the health care
system.
• When community members provide care to their
family members, neighbours, and colleagues, they
not only increase access to care, but become
involved in prevention activities. Everyone benefits
• The Government regards home-based care as a
viable mechanism for delivering services because it
has important benefits for everyone on that
continuum.
Rationale for Home-Based Care
The rationale for emphasizing home-based care
rests in its benefits to PLWHAs, the families of
PLWHAs, the community, and the healthcare
system:
• Home-based care allows persons living with
HIV/AIDS to take responsibility for their own
welfare and well-being; receive care in a familiar
environment; continue participating in family
affairs; retain a sense of belonging to social
groups; and accept their condition more easily.
Rationale for Home-Based Care
• Home-based care contributes to family solidarity; helps the
family accept the infected person's condition; makes it easier to
provide care/support; can reduce health care costs; and makes
it easier for family members who provide care to attend to
other responsibilities.f
• At the community level, home-based care helps reduce health
care costs; affords opportunities for community members to
confront stigma and provide support to persons living with
HIV/AIDS; contributes to community cohesiveness; and raises
awareness about the causes and impact of HIV/AIDS.
• The health care system benefits because home-based care
helps ease the demand on health care facilities; does not
require the creation of extra services where none exist; and
extends responsibility to individuals, families, and communities.
Foundational Principles of Home-Based Care
To ensure that the foregoing benefits are realized,
home-based care should be regarded as a holistic
system of care with provisions for:
• Ensuring appropriate, cost-effective access to quality
health care and support to enable persons living with
HIV/AIDS to retain their self-sufficiency and maintain
quality of life.
• Encouraging the active participation and involvement of
those most affected – the persons living with HIV/AIDS.
• Fostering the active participation and involvement of
those most able to provide support – the community at
all levels.
Foundational Principles of Home-Based Care
• 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 of PLWHAs.
• 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
Foundational Principles of Home-Based Care
• 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 all levels – household,
community, institution.
• Addressing the differential gender impact of the
HIV/AIDS epidemic and care for persons living with
HIV/AIDS.
• Monitoring and documenting activities to form the
basis for sharing lessons learned.
Objectives of Home-Based Care
The overall goal of home-based care is to ensure
a high standard of human, holistic care that
meets the physical and social needs of persons
living with HIV/AIDS.
Specific Objectives of HBC
1. To facilitate the continuity of care of the PLWHA from the health
facility to the home and community.
2. To promote family and community awareness of HIV/AIDS
prevention and care.
3. To empower the PLWHA, the family, and the community with the
knowledge needed to ensure long-term care and support.
4. To empower the PLWHA in self-care and positive living.
5. To facilitate quality community care for the infected and affected.
6. To raise the acceptability levels of PLWHAs by the family/community
in order to reduce the stigma associated with AIDS.
7. To streamline the patient/client referral from the institutions into
the community and from the community to appropriate health and
social facilities.
8. To mobilize the resources necessary for sustainability of the service.
Five Key Players and Roles
• The health facility:
Making the initial diagnosis and delivering clinical care, recruiting the
PLWHA into the program, identifying needs at various levels, preparing
the PLWHA for discharge home, preparing the family caregiver for the
caring responsibility at home, supplying simple drugs and basic home
nursing supplies, facilitating training and supervision of community
health workers in home care and the use of simple drugs and supplies,
caring for terminally ill PLWHAs depending on their wish. Some non-
clinical aspects of these functions may be filled by
non-government/community-based organizations or other responsible
entity.
• The family and other caregivers:
Caring for the PLWHA at home, collaborating with other care providers,
e.g., religious institutions, support groups, and health and social
institutions, consulting and involving the PLWHA on matters concerning
them, accepting the reality of the situation, and helping the PLWHA to
prepare for death.
Five Key Players and Roles cons..
• The community:
Accepting the situation of the PLWHA, collaborating with
existing agencies to meet the needs of those infected,
forming support groups, advocating for the rights of PLWHAs.
• The PLWHA: Identifying the primary or alternative caregiver,
participating in the care process, writing a will, identifying
own spiritual/pastoral needs, resolving to take personal
responsibility to stop the further transmission of HIV,
advocating for behavior change.
• The government: Creating a supportive policy environment,
developing policies and guidelines, developing and
maintaining standards, providing/coordinating training,
providing drugs and commodities.
Components of Home-Based Care
• Clinical Care Component
Clinical care in the context of home-based care is the continuation of
medical care in the home. The goal is to ensure the continuity of the
care and treatment the PLWHA was receiving from the health facility.
• Clinical care intends to:
• Ensure early detection and treatment of opportunistic infections and
other complications that occur as a result of HIV/AIDS.
• Reduce the suffering from conditions associated with the HIV/AIDS
infection.
• Protect the patient against further infections especially during a long
hospital stay.
• Prevent transmission of HIV or other opportunistic infections from
PLWHAs to health workers, relatives, and friends.
• Ensure that drugs prescribed by the clinician are administered at
home according to the regimen of intake
Components of Home-Based Care cons…
• Counselling/Psycho-Spiritual Care Component
Counselling is a professional helping relationship that assists people to understand
and deal with their problems. This component includes psycho-spiritual support,
anxiety reduction, promotion of positive living, and help with making informed
decisions about HIV testing, life, and living positively. The objectives of this
component 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 the PLWHA to come to terms with the infection and to adopt a
positive living attitude.
• Help the PLWHA make well informed decisions about sex and sexuality.
• Offer psychological/spiritual support to PLWHAs and their families.
• Help PLWHAs accept the need to talk to family members about their condition and
future plans.
• Strengthen the spiritual, physical, mental, and social well-being of the PLWHA and the
family.
• Help the community to avoid condemnation of the infected and affected and hence be
challenged to help when needs arise.
Components of Home-Based Care cons…
• Nursing Care Component
Nursing is "The art of assisting individuals, sick
or well, to do those things they would do if they
had the strength, knowledge, or will, or to a
peaceful death". The objectives of the nursing
care component are to:
• Alleviate physical and psychological symptoms.
• Maximize the level of function of the affected
person.
• Sytematically assess the needs of the sick.
Components of Home-Based Care cons…
• Social Support Component
Social support, for HIV infected people, is the creation of an
enabling environment for the PLWHA by all involved in
providing care. It incorporates information dissemination and
referral to support groups and welfare, economic, and legal
services. The objectives of this component are to:
• Contribute to the social and material well-being of the PLWHA.
• Involve the community in the care of the PLWHA and support
for the affected family.
• Provide relief for family caregivers from the burden of care.
• Raise awareness among community members of issues related
to the transmission of HIV.
• Develop social safety nets for affected children.
Rights and Responsibilities of PLWAS
Home-based care programming is expected to reinforce those
rights and reduce the stigma attached to HIV infection. HIV-
positive persons have the right to the following, among others:
• To be treated with respect.
• Access to appropriate health care.
• Confidentiality regarding their condition by all who know.
• A source of income/income-generating activity.
• To own, inherit, and bequeath property.
• Freedom of worship according to their faith.
• To participate in community activities and school.
• To preserve human life by not infecting others [Link]
• To inform their sexual partners of their HIV status.
• To take steps while able to provide for their families' future.
Planning and Setting up a HBC Program
• Because home-based care emphasizes community participation,
community members and representatives of community
institutions should come together to discuss these issues, compile
background information, and develop objectives and strategies
that are appropriate to their community.
• This process will be facilitated by District and Constituency AIDS
Control Committees in collaboration with District Health
Management Teams.
• Among the issues that should be taken into consideration are; the
HIV/AIDS prevalence in the community, the services that are
already available, the recognized need for home-based care
services, and mechanisms for determining the eligibility of those
to be served.
• Clear objectives, a management plan, and a strategy for
mobilizing required resources are also necessary.
The Home Care Team
• The home care team should be multi-disciplinary in order to handle the
physical, social, psychological, and spiritual needs of care recipients.
Responsibilities of the team members will include records management
and monitoring and evaluation functions as well as professional
services.
• The team leader should be a care professional – a doctor, nurse,
counselor, social worker, etc. Ideally, core team members should include
a clinician or nurse, a counselor, community health worker, and spiritual
leader, with a home care supervisor on each team appointed by the
relevant health facility or responsible non-government or community-
based organization. They should have access to information, education,
and communication expertise within the program.
• Other members of the team may be volunteers on full or part time
basis, drawn from the community and trained by the core team to
handle various responsibilities The core team members should have
requisite professional expertise and relevant experience.
The Home Care Team cons…
• The volunteers should have commitment, motivation, and
preferably some personal experience with family or friends
who are PLWHAs or who have died of AIDS-related
complications. To be effective, those selected for the home
care team must be convincing educators who will facilitate
change in attitude and behaviour.
• Local community members must be given priority in the
recruitment of team members, In addition to these
qualifications, all team members must have the following
personal characteristics:
• Commitment to the fight against HIV/AIDS.
• A caring attitude toward the afflicted.
• A lifestyle consistent with HIV prevention messages
Liaison with Public Sector Systems
• Private and non-government programmes for
home-based care will be expected to conform to
national standards and guidelines and to
collaborate with the local/district public sector
health teams and AIDS Control Committees.
Resource Mobilization
• Resource mobilization entails identifying and
using all available services or goods required to
meet the identified needs of the PLWHA, the
family, and the community. Resource mobilization
is essential to ensure that the goals at various
levels of home-based care are achieved.
Identifying the Required Resources
• Manpower: The people who assist the PLWHA or the
PLWHA's children, including health workers at all
levels, family members, relatives/friends, community
leaders, spiritual, political, and administrative
leaders, and community volunteers.
• Materials: The material resources required to assist,
including food, cooking fuel (e.g., firewood), water,
transport, or money for drugs, children's education
needs, or other expenses.
• Moments: The time required for providing care and
support for persons infected and affected by
HIV/AIDS.
Mobilizing the Required Resources
• Resources are required at every level of the
home-based care continuum. And, the players at
every level – the individual, the family, the
community, and the nation – should be expected
to contribute to the extent possible.
• The CACCs are mandated to take the lead in
identifying and mobilizing resources at the local
level. They should work closely with government
agencies, the private sector, and nongovernment
organizations in the area.
Mobilizing the Required Resources…
• The Government will to the extent possible provide the following
support:
• Political commitment and advocacy.
• Adequate financial resources for national oversight of home-based
care programmes.
• Essential drugs for opportunistic infections at the primary health
care level.
• Coordination of training and supply of drugs to strengthen the
capacity of primary health care providers to care for plwAS.
• A support structure for mobilizing resources at the community level,
• The multi-sector involvement of all government ministries to
improve land use and increase food production.
• Monitoring and evaluation of HBC activities to ensure that
programme objectives are met.
Support Services
• Depending on the stage of the illness and the needs
of the PLWHA/other terminal illnesses, any or all of
the following support services may be necessary:
• Recognized health institutions.
• Social support groups.
• Spiritual leaders.
• Legal agencies/local administration, e.g., for writing
wills, settling property disputes, addressing burial
disputes/arrangements.
• Any other relevant agencies according to the
affected needs.
Referral Mechanisms
Referral is an effective and efficient two-way process of linking the PLWHA
from one caring service to another or to other needed services . Referral and
networking are essential to ensure continuity of quality care for the PLWHA at
all times. Referring a PLWHA will be deemed necessary:
• When services or resources within reach are not able to meet the PLWHA's
immediate needs.
• For better, more competent management in the next stage of required care.
• For specialized care in a hospital setting, especially if the PLWHA is
deteriorating.
• In cases where the acute phase of the PLWHA's care has been dealt with and it
is deemed safe to transfer care to other caring services.
• When the care provider experiences burnout and has no access to counselling
services for personal growth.
• When the caregiver has limitations in meeting certain needs of the PLWHA,
e.g., based on cultural or religious beliefs.
• For continuity of care from the health facility to the family or from family level
back to the health facility.
Training and Certification
• The government will conduct, or collaborate with others to
• conduct, training and orientation in home-based care. All such
training
• and orientation must be conducted using the materials developed by
• NASCOP: National Home-Based Care Programme and Service
• Guidelines, the Curriculum for Training Community Health Workers to
• Care for People with HIV/AIDS at Home, and the Home-Based Care
• Orientation Module for Health Service Personnel and Programme
• Managers.
• At senior levels, the purpose of the orientation will be to acquaint
• personnel with management and implementation issues arising in
• home-based care programmes.
Training and Certification cons…
Training and orientation for other HBC team members will also
include the following:
• Training of trainers (TOT) training for health practitioners.
• Skills training for health practitioners and community health
workers.
• Home nursing skills training for family members.
• Counselling training for health practitioners and CHWs.
Participants in skills training programmes will be examined on their
ability to perform the required activities. For example, the
Curriculum for Training Community Health Workers to Care for
People with HIV/AIDS at Home includes standards for passing
required skill tests. Testing will be by observed demonstration of
skills for health practitioners and community health workers.
Having passed the test, trainees will be certified in home nursing
skills for community health workers.
Motivation and Incentives
• Home-based care functions will be incorporated
into the standing duties of MOH health care
practitioners.
• The community health workers who volunteer to
assist the home care teams will be motivated
through training and supportive supervision.
• Communities are encouraged to devise incentive
mechanisms for their local home-based care
volunteers.
Monitoring and Evaluation
All home-based care programmes will be expected to put in place
a comprehensive monitoring and evaluation system to:
• Ensure that guidelines in the provision of home-based care are
being adhered to.
• Assess the impact of the home-based care programme on the
affected and the infected.
• Assess the viability of the programme in order to make
alterations and substitutions for the success of the programme.
• Help identify constraints and possible solutions.
• Establish proper organizational and supervisory structures.
• Enhance accountability and transparency.
• Document programme activities and progress.
• Identify best practices with the idea of replicating them to the
extent possible.
• Steps involved in establishing
community based initiative
model
Step 1 Preparation and orientation
• Usually, a CBI is launched in a country with the
joint effort of WHO and the national
authorities.
• The Ministry of Health takes a lead role and
mobilizes the government resources, while
WHO provides technical assistance.
• The preparations for programme planning and
implementation involve a number of critical
activities described below.
• A study visit for the decision-makers and technical
personnel may be arranged to demonstrate the
advantages of the health and development approach.
• This is followed by the introduction of the programme
to political, government and intersectoral decision-
makers through formal meetings and workshops.
• This exercise is aimed at seeking the general
consensus of the national authorities, administrative
support and technical partnerships of the ministries
concerned.
Mobilization and orientation
• The WHO country office, with the support of the
Regional Office, introduces the approach initially
to the Ministry of Health authorities.
• This is carried out through a series of formal and
informal meetings highlighting the correlation
between health, development and poverty
reduction.
• Approval and planning
• Subsequent to the consensus by the country authorities, formal
approval and agreement will be required.
• In this respect, government should issue a letter and/or may sign an
agreement with WHO for implementation of the CBI in the country.
• This will provide a reference for future activities. It will be important
to fulfil all legal requirements of the country necessary for initiating
any programme supported by international agencies.
• The government may also be requested to issue a circular to the
various sectors and offices involved to proffer effective collaboration
and support during programme implementation.
• This should be followed by the preparation of a work plan and
costing of the planned activities to provide an estimate for
budgetary requirements.
• Mobilization of resources
• The Ministry of Health and WHO should jointly
explore all potential resources.
• In addition to securing sectoral resources,
partnerships can be developed with other agencies
and organizations.
• The resources available in the WHO collaborative
programme can also be replanned making sufficient
allocations for CBI.
• This should be followed by the release of the
required resources according to the plan of action.
Step 2 Organizational set-up
• Approval for programme implementation
and allocation of funds should be followed
by the formal initiation of programme
activities.
• In this respect, the foremost requirement
will be the establishment of the
organizational and management set-up.