Family Centered Care: People Living

with HIV/AIDS
Nur Azizah Indriastuti, S.Kep.,Ns.,M.Kep
School of Nursing
Medical Faculty and Health Sciences
Universitas Muhammadiyah Yogyakarta
People Living with HIV
Top 4 reasons why people living
with HIV are left behind:
1. Human rights violations,
stigma and discrimination
2. Access to treatment and
services
3. Gender-based inequalities
4. Criminalization and exclusion
How to close the gap:
1. Meaningful participation of
people living with HIV
2. Improve services, including
community-based services
3. Scale up antiretroviral therapy
and integrated health services
4. Increase treatment and rights
awareness
Elements of Comprehensive Care and Support

Human Rights and

Socioeconomic Support Legal Support
e.g.: e.g.:
•Material support •PLHA participation
•Stigma & discrimination
•Economic security
reduction
•Food support PEOPLE AND •Succession planning
FAMILIES
AFFECTED BY
Medical & Nursing HIV/AIDS
Care Psychosocial Support
e.g.: e.g.:
•VCT, Family Planning •Counseling
•Preventive therapy •Spiritual support
•OI treatment and HAART •Follow-up counseling
•Palliative care •Community support
 Family-centered Care

Family-centered care recognizes all persons who

function as family members, as identified by the
person living with HIV infection.

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Family Centered Care
• A philosophy and approach to health care that places the patient and
family at the center of institutional and professional focuses
• Patients and families are involved in all aspects of planning,
implementation and evaluation of health services
• Involves patients and families in polices, programs, facility design,
and staff day-to-day interactions
• Facilitates collaborative relationships between and among consumers
and health providers
Why Family Centered Care
Parents Concerns
• Lack of Information
• Exclusion from Decision-Making
• Overtreatment or Under-treatment
• Policies and Procedures
• Lack of Follow-up

Benefits
• Families
• client
• Staff
• Physicians
• Organizations
Family Centered Care
• Family-centered care shapes
• Organizational Culture
• Policies (HR, Patient Information)
• Patient and Family Participation in Advisory Roles
• Programs
• Facility Design
• Research
• Day-to-day interactions (among patients, families, physicians, and other
health care professionals)
Family Centered Care
Tertiary Health Facilities

Family


 District Hospital -IPC and OPD

TB
Services Lab Maternity
Pediatric

 
COMMUNITY/HOME
 
OTHER

CBOs

Adult and
Community
PLHIV Home Based Pediatric HIV
Families Care services Clinic – includes
PMTCT
PLHIV SUPPORT
GROUPS
Principles of FCC
• Principle 1: Families and professionals work together in the best
interest of the client and the family
• Practitioners are from the community or have extensive knowledge of the
community
• Structure activities compatible with the family’s availability and accessibility
• Demonstrate genuine interest in and concern for families
Principles of FCC
• Principle 2: Everyone respects the skills and expertise brought to the
relationship
• Family members know their own situation better than anyone
• Recognize and reinforce the role families play in their PLHIV’s care (ie.
caregiver)
• Families also provide valuable information about their PLHIV, including
information about their symptoms and medical histories
Principles of FCC
• Principle 3: Trust is acknowledged as fundamental
• Each visit is an opportunity for families, youth and health care providers to
partner to assure quality health care for the PLHIV and to support the family’s
needs in raising their child
• Respect for each family’s basic human dignity, their expertise, their values and
culture, and the variety of ways in which they cope serves as a foundation for
communication and relationships with families
• Maintain confidentiality, being respectful of family members and protective of
their legal rights
Principles of FCC
• Principle 4: Communication and information sharing
are open and objective
• Encourage open, honest communication
• Maintain staff who reflect the cultural and ethnic
experiences and languages of the families with whom they
work and integrate their expertise into the entire program
• Provide ongoing staff development on diversity issues
• It’s important that families have access to complete and
easy-to-understand information about their PLHIV or their
own care
• Recognize & respect different methods of coping
Principles of FCC
• Principle 5: Participants make decisions together
• All staff work as a team, modeling respectful relationships of equality
• Families are encouraged to be fully engaged in the every part of the
treatment process
• In the care of an individual, families and health care personnel collaborate, as
partners, to determine what is best for the client and family
Principles of FCC
• Principle 6: There is a willingness to negotiate
• Solicit and use family input in a meaningful way in the design or delivery of
clinical services, program planning and evaluation
• Family centered care recognizes that families are very diverse and will make
different choices for their PLHIV and themselves
• For example, some parents prefer to remain with their children during a
treatment procedure, while other will not. FCC practitioners convey respect
for the choices that families make for themselves and their PLHIV.
Elements of FCC
1. Acknowledges the family as the constant in PLHIV’s life
• Service systems and personnel within those systems fluctuate
• Talk about the range of treatment options and care choices that would best
fit
• Share unbiased and complete information with parents about their care on
an ongoing basis in an appropriate and supportive manner
Elements of FCC
2. Builds on family strengths
• Strengthen parent & staff skills to advocate for themselves with institutions &
agencies
• Recognize the families support network and role of faith/religion or other
cultural supports
Elements of FCC
3. Honors cultural diversity and family traditions
• Involve the families request for others (extended family, persons of faith,
traditional healers) to participate in the decision making process
• Recognition of family strengths and individuality and respect for different
methods of coping
Elements of FCC
4. Recognizes the importance of community based services
• Work with families to identify needed (and available) community resources
• Help families make first contact with community based services
• Follow up to see
• If a family has successfully connected with service
• If the service was useful
• If the service was respectful of the clients culture and values
Elements of FCC
5. Promotes an individual and developmental approach
• Understanding and incorporating the developmental needs of families into
the healthcare delivery system
• Reassess care approaches at key developmental milestones and transitions
Elements of FCC
6. Encourages family-to-family and peer support
• Peer to peer support showed increases in parents confidence and problem
solving. Parents noted this support could not be received in any other manner
• Actively assist in linking families with other families
• Consider language and culture when connecting families to each other
• Have a process by which families can share their strengths with other families
Elements of FCC
7. Develops policies, practices, and systems that are family-friendly and
family-centered in all settings
• Have policies to assure that financial costs do not get in the way of families
receiving records
• Help families understand and interpret their PLHIV’s medical records
• Have policies specifically about FCC that occur at all levels (family,
practitioner, organization)
Goals of Family-based Care

• Decrease morbidity and mortality

• Improve the quality-of-life for HIV-
infected women, children, and
their families
• Reduce transmission of HIV
through secondary prevention
counselling and education

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Advantages

• Access of PLHIV to HIV care and treatment

services
• Better understanding of how to manage
more complex ARV prophylaxis or
treatment regimens
• PMTCT activities and PMTCT messages
amongst all healthcare workers

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Advantages

• Reduce HIV-related stigma and

discrimination
• Improve coverage for underserved
populations
• Improve quality of care
• Enhance programme effectiveness and
efficiency

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Community

• Community-based HIV services include:

• Support groups for PLHIV
• Social activities
• Income-generating or volunteer work
• Advantages include:
• Helping families cope with stigma and isolation
• Assisting national programmes with
meeting needs of PLHIV

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Other Community
Examples of other community services:
• Faith-based programmes offering supportive
counselling to families affected by HIV
• Local and/or private businesses providing HIV
education

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 Barriers to
Comprehensive HIV Care
• The circumstances of client’s lives can affect their
ability to receive truly comprehensive care for
themselves and their family.
• Healthcare workers must continuously address
barriers to HIV care.

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Barriers to
Comprehensive HIV Care
Stigma
• Fear of status being revealed
• This can occur when HIV care and treatment are
not integrated into mainstream care (e.g., separate
HIV clinic)

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 Overlapping
Stigmas HIV-related stigma
Experienced by
People Living
with HIV
Racial-
Reproductive
desires and HIV * ethnic group
stigma
stigma

Poverty stigma

Adapted from: Logie et al, PlosMedicine 2011

Stigma from friends, family, community and
from providers
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Barriers to
Comprehensive HIV Care
Financial
• Hidden cost of “free” services
• childcare
• transportation
• Cost of specialized services
• e.g., referral to doctor in private practice

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Barriers to
Comprehensive HIV Care
Time commitment
• Multiple referrals necessary
for comprehensive care
• Different sites
• Different times
• Different purposes

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Barriers to
Comprehensive HIV Care
Healthcare workers,
lack of knowledge and time
• Lack of knowledge
about available services
• Lack of time to properly
make and monitor referral

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Strategies to
Overcome Barriers
• Strategies should be individually tailored
• Implemented by
multi-disciplinary team
• Social workers
• Physicians
• Counsellors

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Strategies to
Overcome Barriers
Disclosure counselling
• Disclosure is first step in receiving care, treatment,
and support for self, partner(s),
and children
• Disclosure is ongoing process that starts in
pre-test counselling

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Strategies to
Overcome Barriers
Incentives
• Letter to the client’s employer requesting time to
attend appointments
• Assistance with childcare
• Transportation
• Food, clothing, or prizes
• Accompanying patient to appointments
• Assistance with obtaining social welfare benefits

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Strategies to
Overcome Barriers

A warm, welcoming
non-stigmatizing clinic
environment where clients are
not singled out as HIV-infected
will promote client retention.

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Alhamdulillah
THANK YOU