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

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.

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.

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

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

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

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.

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.

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

Examples of Services that can be included in HBC

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

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

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

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

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.

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.

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

Patient Assessment in the Home and Developing a Care Plan

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

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

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

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

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

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