Family Centered Care

Family Centered CareDecember 2, 2011Robert Lucio, PhD

Family Centered Care• An innovative approach to the planning,

delivery and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families and providers

• Applies to patients of all ages and may be

practiced in any health care setting

Institute for Family-Centered Care

FamilyFamily – 1. A basic social unit consisting of parents and their

children, considered as a group, whether dwelling together or not

2. Social unit consisting of one or more adults together with the children they care for

3. Any group of persons closely related by blood, as parents, children, uncles, aunts, and cousins

(Dictionary.com)

FamilyFamily• Enduring relationship whether biological/non-

biological, chosen or circumstantial, connecting a child/youth and parent/caregiver through culture, tradition, shared experiences, emotional commitment and mutual support

(National Center for Cultural Competence-Georgetown University Center for Child and Human Development, 2007)

Cultural Competence

• Congruent, defined set of values and principles and demonstrate behaviors, attitudes, policies, and structures that enable them to work effectively cross-culturally

• Value diversity, conduct self-assessment, manage the dynamics of difference, acquire and institutionalize cultural knowledge and adapt to the diversity and cultural contexts of communities they serve

• Cultural competence is intricately linked to the concept and practice of “family centered care”


Linguistic Competence• Capacity to communicate effectively, and

convey information in a manner that is easily understood by diverse audiences to include person of limited English proficiency, low literacy skills and with disabilities.


History• Family-centered care emerged as an important

concept in health care the second half of the 20th century

• Understanding the importance of meeting the psychosocial and developmental needs of children

• Families are essential components in promoting the health and well-being of their children

(American Academy for Pediatrics, 2003)

History• Family-centered care was given additional

impetus by consumer-led movements of the 1960s and 1970s and by professionals in education, health, and child development

• Support for families and the active participation of parents in their children’s education and healthcare gained momentum in the 1970’s and 1980’s


• PL 94-142, the Education for all Handicapped Children Act of 1975 mandated publicly supported education for children in the least restrictive environment

• Each child would have an individual education plan

• Parents of children who are disabled began to speak out about their concerns

History

• The Katie Becket waiver became available enabling states to provide services to enable children to receive services in their own homes

• The concept of the “least restrictive environment” gained strength

• In 1985 the Maternal and Child Health Bureau enabled a survey to assess the extent to which state health departments involved parents in planning services for children

1980’s

• The Institute for Family Centered Care was formed in 1992

• MCHB continued to increase funding to support family centered efforts to families of HIV affected children, parents, and youth as well as other children with special needs.

1990’s

Efforts were made to increase attention to family centered care in medical education, public health education, social work education, and other disciplines

Focus intentionally began to broaden away from children with special needs to all public health programs and the idea of including family as an integral part of planning for child health services gained acceptance

Education efforts

• Recognition of the fact that in this area practice began to develop far in advance of training of students in MCH programs

• The essential components of parent centered approaches have only recently been clearly a focus of MCH (MPH) training programs

• The MCH training grants have been an avenue for increasing attention to this issue

Public Health Education

• In family-focused care, professionals often provide care from the position of an "expert -" assessing the patient and family, recommending a treatment or intervention and creating a plan for the family to follow

• They do things to and for the patient and family, regarding the family as the "unit of intervention."

Family Focused vs Family Centered

• Family-centered care, by contrast, is characterized by a collaborative approach to caregiving and decision-making

• Each party respects the knowledge, skills, and experience that the other brings to health care encounters.

• The family and health care team collaboratively assess the needs and development of the treatment plan.

Family Focused vs Family Centered

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

(Farrar, Shaffer, McLuaghlin, & Klick, 2009)

Definition:• Family-Centered Care assures the health and

well-being of children and their families through a respectful family-professional partnership

• It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship

• Family centered care is the standard of practice which results in high quality services

Maternal and Child Health Bureau

Why Family Centered CareParents Concerns• Lack of Information• Exclusion from Decision-Making• Overtreatment or Under-treatment• Policies and Procedures• Lack of Follow-up

Benefits• Families• Children• Staff• Physicians• Organizations

(Family Voices, 2008)

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)


Principles of FCC• The foundation of family-centered care is the

partnership between families and professionals

• MCHB which is part of HRSA and which administers the Title V programs has developed a series of principles of family centered care

(Family Voices, 2008)

Principles of FCC• Principle 1: Families and professionals work

together in the best interest of the child and the family– As the child grows, s/he assumes a partnership role.– 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 1: Families and professionals work

together in the best interest of the child and the family– Create opportunities for formal and informal

feedback and act upon it; ensure that input shapes decision making

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 children’s care (ie. caregiver)– Families also provide valuable information about

their children, including information about their children’s 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 child 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 child’s 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 child, families and

health care personnel collaborate, as partners, to determine what is best for the child 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 children 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 children.

Elements of FCC1. Acknowledges the family as the constant in a

child’s life– Service systems and personnel within those

systems fluctuate– Talk about the range of treatment options and

care choices that would best fit the child/youth– Share unbiased and complete information with

parents about their child’s care on an ongoing basis in an appropriate and supportive manner

Elements of FCC2. 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 FCC3. Supports the child in learning about and participating in his/her care and decision-making– Include child in decision making in keeping with age

and development– Offer opportunities for families and youth to meet

with older youth and adults as role models for achieving future goals

Elements of FCC4. 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 FCC5. 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 FCC6. Promotes an individual and developmental approach– Understanding and incorporating the

developmental needs of infants, children, and adolescents and their families into the healthcare delivery system

– Reassess care approaches at key developmental milestones and transitions

Elements of FCC7. 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 FCC8. Supports youth as they transition to adulthood– Offer youth educational opportunities to support

self-care (making appointments, medications, insurance)

– Work to develop formal healthcare transition plans

Elements of FCC9. Develops policies, practices, and systems that are family-friendly and family-centered in all settings– Explain rights under HIPPA in a way the family can

understand– Have policies to assure that financial costs do not get

in the way of families receiving records– Help families understand and interpret their

children’s medical records– Have policies specifically about FCC that occur at all

levels (family, practitioner, organization)

Elements of FCC10. Celebrate Successes– Take time to share and document successes with

families– Share successes with each other in an agency

Benefits of Family Centered CareFamily• Improve patient and family outcomes• Increase patient and family satisfaction– Family presence during health care procedures

decreases anxiety for the child and the parents resulting in smoother treatment, quicker recovery, and discharged sooner

– Lower levels of emotional distress and increased coping in families


Benefits of Family Centered CareStaffIncrease professional satisfaction• When FCC is a cornerstone of an agencies

guiding principals, staff show more positive feelings about their jobs

• Increase providers’ sense of teamwork• Generate new, previously unknown

information from the family


Benefits of Family Centered CareCostsLead to more effective use of health care resource• Decrease of health care costs and the need for

additional services


Benefits of Family Centered CareHealth Care Professionals• Development of a strong alliance with families• Improved follow through by families when the

plan is developed in conjunction with their needs

• Greater understanding of the families strengths

• Greater family and child satisfaction with healthcare


• Flies in the face of control of health care financing by third party payers and thoughts that it may take more time

• Families and professionals are often at odds about appropriate proceedings

• May be at odds with the concept of evidence based practice

• Definitions of family are continually difficult

• Sometimes is at odds with regulations or even laws

Challenges

• Family centered care is a mandated approach for public health MCH services.

• It is based on positive research outcomes, but there is the need for much more research to really understand how best to incorporate families into practice.

• It is a very complex but critical area.

Summary

• Over the last decades the concept of family centered care has expanded into the total realm of health care

• Health care professionals should be trained in building a patient-centered rather than disease centered system of care

• Health care policy should be amended to support families

• Put health care decisions back into the hands of patients and families and less into third party payers and physicians

Summary

Where to start1. Implement a process for all senior leaders to learn about

patient- and family-centered care. Include patients, families, and staff from all disciplines in this process

2. Appoint a patient- and family-centered steering committee comprised of patients and families and formal and informal leaders of the organization

3. Assess the extent to which the concepts and principles of patient- and family-centered care are currently implemented within your hospital or health system

(Institute for Patient and Family Centered Care, 2011)

Where to start4. Set priorities and develop an action plan for

establishing patient- and family-centered care

5. Begin to incorporate patient- and family-centered concepts and strategies into the hospital’s strategic priorities. Make sure that these concepts are integrated into your organization’s mission, philosophy of care, and definition of quality


Where to start6. Invite patients and families to serve as advisors in

a variety of ways. Appoint some of these individuals to key committees and task forces.

7. Provide education and support to patients, families, and staff on patient- and family centered care and on how to collaborate effectively in quality improvement and health care redesign. – For example, provide opportunities for administrators

and clinical staff to hear patients and family members share stories of their health care experiences during orientation and continuing education programs.


Where to start8. Monitor changes made, evaluate processes,

measure the impact, continue to advance practice, and celebrate and recognize success.


Documents

Family Centered Care