1. Part A: Module A5 Session 2
Community Home-Based Care
Part A: Module A5
Session 2

2. Objectives
Discuss the definition, objectives and types of home-based care
Discuss the essential elements and principles that should be included in and guide home-based care programs
Describe major factors to address when assessing potential home-based care clients and families
Discuss issues of home-based care that are specific to their local situation

3. Definition
The provision of comprehensive services, including health and social services by formal and informal caregivers in the home in order to promote, restore and maintain a person’s maximal level of comfort, function and health, including care towards a dignified death.
CHBC includes physical, psychosocial, palliative, and spiritual activities and is a very important component of the continuum of care, which extends from the hospital, through different levels of the health and social welfare facilities to the home.

4. Goal of CHBC
The goal of CHBC is to provide hope through good quality and appropriate care that helps patients and families maintain their independence and have the best quality of life.

5. Models of Home-Based Care
There are different types or models of home-based care, depending on national policy or local community situations.
In determining which model is best for a given situation, it is important to take into account such factors as
cost
stigma
community resources
Sustainability
adequacy of systems available to support CHBC

6. Facility-Based or Outreach
Usually a hospital outreach program, which sends outreach health care workers or teams out to periodically visit the homes and families of PLHA
Often focus on addressing the nursing and medical needs, but have increasingly integrated psychosocial support

7. Community-Based Model
Community-driven and owned: typically relies on volunteers who reside in the communities covered by the program
Volunteers are trained to provide basic nursing care, emotional and spiritual support to the patient and family members
Volunteers instruct family members in caring for the patient and provide back-up support through regular visits
Transport costs minimal since volunteers live close to families
Challenge is to maintain and support the volunteers

8. Integrated Model
Combination of facility and community – based models: a community-based program which relies on local health facility for training, supervision, and supplies for home-care kits and ensures referrals to patients back to the facility as and when needed
Evolution into this model is a natural one in response to needs of communities, families, and patients. This can result in a continuum of care through synergistic working relations and referrals. For example, there is a need to explore linking pharmacies with HBC services.

9. Community Day Care Model
Patients come to a site for a few hours during the day and get services such as symptom monitoring, drugs, recreation, and counseling. This gives caregivers a respite.

10. Essential Elements of Home-Based Care
Preventative
Instructive
Therapeutic
ARV adherence support
Rehabilitative
Long-term maintenance
Palliative care & pain relief

11. Examples of Services that can be included in HBC

12. Provision of Care Basic physical care Recognition of symptoms
Treatment and symptom management
Referral and follow-up
Prevention for patient and caregivers, including provision of supplies such as condoms, household bleach

13. Provision of Care, continued
Basic nursing care
Positioning and mobility
Bathing
Wound cleansing
Skin care
Oral hygiene
Adequate ventilation
Guidance and support
for adequate nutrition

14. Palliative care
See Part A Module A5, Session 1 on Palliative Care

15. Psychosocial Support and Counseling
Effective psychosocial support and counseling is known to improve quality of life
Caregivers, including both the family and the CHBC team, must themselves receive support if they are to support patients
Burnout is a major risk for families and HBC team members

16. Care of Affected/Infected Children
Programs should include
advance or succession planning for surviving children and dependents
HIV/AIDS and other terminal illnesses have a profound effect on children’s lives. Psychosocial support is critical and involves an ongoing process of meeting their physical, emotional, social and spiritual needs.

17. Care of Affected/Infected Children, continued
CHBC programs can
promote an enabling environment for psychosocial support for vulnerable children
foster an expanded response by families, communities, governments, faith-based and other organizations for the promotion of psychosocial support for children.

18. Care of Affected/Infected Children, continued
Programs should include:
Information and education for patients and families
Training for family caregivers
Immediate practical support for children and families in distress
Established linkages and referral mechanisms for services such as legal support

19. Patient Assessment in the Home and Developing a Care Plan

20. Holistic Approach Use a holistic approach
Begin with a thorough assessment which addresses
Patient and family needs and current capacity for
maintenance of basic hygiene
good nutrition
comfort measures
prevention of infection transmission
symptom management
legal support
taking drugs and medical measures which require physician input
food and income security
source of psychosocial and spiritual support

21. Set Realistic Goals
With the patient, family members, and interdisciplinary team, establish a care plan based on the assessment above
Set realistic goals based on the patient’s condition, stage of the disease, care plan, and resources available

22. CHBC Linkages
CHBC volunteers can participate as DOTs monitors in programs managing HIV-infected patients with TB
Volunteers can also participate as monitors for ARV DOT patients
CHBC programs can provide mechanisms for support in PMTCT programs including documentation of inadvertent negative outcomes
CHBC plays a role in ART adherence for MTCT programs or chronic ART management

23. Basic Principles to Guide HBC Programs
It is good practice to include all sectors of society, i.e., communities, public and private institutions, traditional groups
While CHBC does not aim to shift the burden solely onto the community there should be active efforts to empower families/communities to take responsibility for their health with the community sharing responsibility for care in that community
People living with HIV/AIDS should be integral to the planning, design, monitoring and evaluation of programs

24. Basic Principles, continued
Provider services along a continuum of care that responds to prevention and care needs for the infected and affected across different stages of illness and in a variety of settings
Home-based care workers are ideally a part of a multidisciplinary team that provides access to the diverse service needs of patients and families
It is essential that there be care for the caregivers: family members, community volunteers, and health care workers

25. Basic Principles, continued
There must be an environment and local capacity (through awareness-raising and skills-building) to support shared confidentiality regarding disclosure of HIV status by patients to their families and caregivers
HBC should be an entry point to other services such as legal aid, household aid and facility-based care for patients and families
Programs must address the unique needs of orphans and vulnerable children