Family Centered Care December 2 2011 Robert Lucio

Family Centered Care December 2, 2011 Robert Lucio, Ph. D

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

Family – 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)

Family • Enduring relationship whether biological/nonbiological, 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” (National Center for Cultural Competence-Georgetown University Center for Child and Human Development, 2007)

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

History • Family-centered care emerged as an important concept in health care the second half of the 20 th 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 1960 s and 1970 s 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 (American Academy for Pediatrics, 2003)

History • 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

1980’s • 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

1990’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.

Education efforts 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

Public Health Education • 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

Family Focused vs Family Centered • 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 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, Mc. Luaghlin, & Klick, 2009)

Maternal and Child Health Bureau 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

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 • 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) (American Academy for Pediatrics, 2003)

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 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 FCC 1. 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 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. 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 FCC 4. 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 5. 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 6. 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 FCC 7. 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 8. 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 FCC 9. 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 interpret their children’s medical records – Have policies specifically about FCC that occur at all levels (family, practitioner, organization)

Elements of FCC 10. Celebrate Successes – Take time to share and document successes with families – Share successes with each other in an agency

Benefits of Family Centered Care Family • 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 (American Academy for Pediatrics, 2003)

Benefits of Family Centered Care Staff Increase 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 (American Academy for Pediatrics, 2003)

Benefits of Family Centered Care Costs Lead to more effective use of health care resource • Decrease of health care costs and the need for additional services (American Academy for Pediatrics, 2003)

Benefits of Family Centered Care Health 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 (American Academy for Pediatrics, 2003)

Challenges • 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

Summary • 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

Where to start 1. 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 currently implemented within your hospital or health system (Institute for Patient and Family Centered Care, 2011)

Where to start 4. Set priorities and develop an action plan for establishing patient- and family-centered care 5. Begin to incorporate patient- and familycentered 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 (Institute for Patient and Family Centered Care, 2011)

Where to start 6. 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. (Institute for Patient and Family Centered Care, 2011)

Where to start 8. Monitor changes made, evaluate processes, measure the impact, continue to advance practice, and celebrate and recognize success. (Institute for Patient and Family Centered Care, 2011)