1 Part A: Module A5 Session 2 Community Home-Based CarePart A: Module A5Session 2
2 ObjectivesDiscuss the definition, objectives and types of home-based careDiscuss the essential elements and principles that should be included in and guide home-based care programsDescribe major factors to address when assessing potential home-based care clients and familiesDiscuss issues of home-based care that are specific to their local situation
3 DefinitionThe 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 CHBCThe 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 ascoststigmacommunity resourcesSustainabilityadequacy 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 PLHAOften 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 programVolunteers are trained to provide basic nursing care, emotional and spiritual support to the patient and family membersVolunteers instruct family members in caring for the patient and provide back-up support through regular visitsTransport costs minimal since volunteers live close to familiesChallenge is to maintain and support the volunteers
8 Integrated ModelCombination 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 neededEvolution 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 PreventativeInstructiveTherapeuticARV adherence supportRehabilitativeLong-term maintenancePalliative 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 managementReferral and follow-upPrevention for patient and caregivers, including provision of supplies such as condoms, household bleach
13 Provision of Care, continued Basic nursing carePositioning and mobilityBathingWound cleansingSkin careOral hygieneAdequate ventilationGuidance and supportfor adequate nutrition
14 Palliative careSee 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 lifeCaregivers, including both the family and the CHBC team, must themselves receive support if they are to support patientsBurnout is a major risk for families and HBC team members
16 Care of Affected/Infected Children Programs should includeadvance or succession planning for surviving children and dependentsHIV/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 canpromote an enabling environment for psychosocial support for vulnerable childrenfoster 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 familiesTraining for family caregiversImmediate practical support for children and families in distressEstablished 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 addressesPatient and family needs and current capacity formaintenance of basic hygienegood nutritioncomfort measuresprevention of infection transmissionsymptom managementlegal supporttaking drugs and medical measures which require physician inputfood and income securitysource of psychosocial and spiritual support
21 Set Realistic GoalsWith the patient, family members, and interdisciplinary team, establish a care plan based on the assessment aboveSet realistic goals based on the patient’s condition, stage of the disease, care plan, and resources available
22 CHBC LinkagesCHBC volunteers can participate as DOTs monitors in programs managing HIV-infected patients with TBVolunteers can also participate as monitors for ARV DOT patientsCHBC programs can provide mechanisms for support in PMTCT programs including documentation of inadvertent negative outcomesCHBC 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 groupsWhile 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 communityPeople 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 settingsHome-based care workers are ideally a part of a multidisciplinary team that provides access to the diverse service needs of patients and familiesIt 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 caregiversHBC should be an entry point to other services such as legal aid, household aid and facility-based care for patients and familiesPrograms must address the unique needs of orphans and vulnerable children