Family Centered Care and

Cultural Competency

Va-LEND Seminar 1, Class #3

September 13, 2017

Elaine Ogburn

“Film short about disabled puppy wins hearts, 59 awards,

job offers from Disney,” by Alyssa Pereira, SFGATE -

Updated 11:14 am, Thursday, May 5, 2016

http://www.sfgate.com/entertainment/article/Film-short-

about-disabled-puppy-wins-hearts-59-

7390864.php#photo-9937732

Family Centered Care (MCH)

Family-centered care ensures the health and well-being of

children and their families though a respectful family-

professional partnership that includes shared

decisionmaking. It honors the strengths, cultures,

traditions, and expertise that everyone brings to this

relationship.

Historically, in the field of MCH, the concept of family-

centered care was developed within the community of

parents, advocates and health professionals concerned for

children with special health care needs (CSHCN).

Family Centered Care Is…

Intended to meet the needs of consumers of

care by increasing involvement, choice, and

control

Based on the principle that consumers and their

families know what they need and want

Centered around increasing family knowledge

and skills, which provides for the long term

improvement and ability of the family unit

Principles of Family-Centered Care

(MCH)

Families and professionals work together in the

best interest of the child and family. As the child

grows, s/he assumes a partnership role.

Everyone respects the skills and expertise brought

to the relationship.

Trust is acknowledged as fundamental.

Communication and information sharing are open

and objective.

Participants make decisions together.

Everyone is willing to negotiate.

Based on These Principles,

Family Centered Care…

Acknowledges the family as the constant in a child’s life.

Builds on family strengths.

Supports the child in learning about and participating in his/her care and decision-making

Honors cultural diversity and family traditions

Recognizes the importance of community-based services

Promotes an individual and developmental approach

Encourages family-to-family and peer support

Supports the child as s/he transitions to adulthood

Develops policies, practices, and systems that are family-friendly and family-centered in all settings

Celebrates successes

If We Are to be Family-Centered…

What is “Family”?

A fundamental group in society

Legal vs functional definitions

Consisting of?

Living where?

Living how?

What might a family’s members have in common?

And not in common?

Some Concepts within Family

Centered Care

Valuing of and drawing upon natural supports

Promotion of parent-to-parent and other family supports

Identification and incorporation of additional community resources & service systems

Encouraging families to move further into advocacy and leadership – first on behalf of their own child (self-advocacy), then beyond (advocacy)

Family involvement in program boards, planning, implementation, and evaluation

Family life cycles – A family as a whole changes over time, and each person changes over time

Life Cycles of Individuals and Families

• Single adult – establishing life on one’s own terms

• New couple – emotional transition through

commitment to the new system; realignment of

relationships with extended families and friends to

include one’s own spouse

• Couple with children – role adjustments and

adjustments of time, energy, money

• Couple with teenagers – new focus on children’s

independence and grandparents’ frailties; new focus on

midlife marital and career issues, sandwich generation

• Launching children – exits from and entries into the

family system, renegotiation of marital system as a couple

rather than as basically parents, changing of relationships

within the family (3 generations)

• Family in later life – shifting of generational roles, shift

focus onto the middle generation who are caring for

older generation and launching their own children,

dealing with physiological decline, dealing with deaths and

own mortality

Add a Disability…

Having a child who is born with or develops a

disability can add pressures:

◦ Strains on relationships between parents and

with extended family and friends

◦ Employment changes

◦ Financial pressures

◦ New and often more separate parent roles

◦ Demands of determining diagnosis and

accessing treatment

◦ Many extra appointments with cost in time, energy, emotions

◦ Responsibility for learning about the disability, special education, insurance options, Medicaid waivers, child-rearing and discipline for the child with a disability, advocacy

◦ Uncertainty about the child’s potential, development, future, and funding for adulthood

◦ Feelings of loss, grief, and chronic sorrow as the child misses age-appropriate milestones

◦ Children may not get “launched” and parents may not have grandchildren

◦ And many more pressures over time, often life-long

Life Course (AMCHP)

Life course is a theoretical model that takes into

consideration the full spectrum of factors that impact an

individual’s health, not just at one stage of life (e.g.

adolescence), but through all stages of life (e.g. infancy,

childhood, adolescence, childbearing age, elderly age).

Life course theory shines light on health and disease

patterns – particularly health disparities – across

populations and over time.

Life course theory also points to broad social, economic

and environmental factors as underlying causes of

persistent inequalities in health for a wide range of

diseases and conditions across population groups.

Life Course Approach to Maternal and

Child Health: Core Principles (AMCHP)

A life course approach encourages a focus on health across the lifespan, and recognizes the following:

A stages of life theory.

The influence of environmental, biological, economic, behavioral, social and psychological impacts on health outcomes across the lifespan.

The potential cumulative effects of these influences on health outcomes.

That health promotion and prevention interventions can be targeted at different stages in life.

That connections exist between life stages, i.e. the relationship between adolescence and the two life stages that border it: childhood and adulthood.

That efforts should be coordinated both across life stages and across the lifespan.

Medical Home

A Medical Home is not a building, house, or hospital, but rather an approach to providing health care services in a high quality and cost-effective manner. Children and their families who have a medical home receive the care that they need from a pediatrician or physician (pediatric health care professional) whom they trust. The pediatric health care professionals and parents act as partners in a medical home to identify and access all the medical and non-medical services needed to help children and their families achieve heir maximum potential.

(American Academy of Pediatrics)

Characteristics of a Medical Home

Accessible –culturally, geographically, and financially

Care is provided in the child’s community

All insurance, including Medicaid, is accepted and changes are accommodated

Family-Centered

Recognition that the family is the principal caregiver and the center of strength and support for the children

Unbiased and complete information is shared on an ongoing basis

Continuous

The same pediatric health care professionals are

available from infancy through adolescence, and provide

support in times of wellness as well as chronic illness

Assistance is provided with transitions across levels of

care, and to school, home, community, and adult services

Comprehensive

Health care is available 24 hours a day, 7 days a week

Preventive, primary, secondary, and tertiary care needs

are addressed

Coordinated

Families are linked to support educational and

community-based services

Information is centralized and the medical home

facilitates coordination of care and services

Compassionate

Concern for the well-being of the child and family is

expressed and demonstrated

Culturally Effective

The family’s cultural background is recognized, valued

and respected

Cultural Competence (SAMHSA)

Cultural competence is the ability to interact effectively

with people of different cultures. In practice, both

individuals and organizations can be culturally competent.

Culture must be considered at every step of the Strategic

Prevention Framework (SPF). “Culture” is a term that

goes beyond just race or ethnicity. It can also refer to

such characteristics as age, gender, sexual orientation,

disability, religion, income level, education, geographical

location, or profession.

Cultural competence means to be respectful and

responsive to the health beliefs and practices—and

cultural and linguistic needs—of diverse population

groups. Developing cultural competence is also an

evolving, dynamic process that takes time and occurs

along a continuum.

Cultural Competence Requires that

Organizations:

Have a defined set of values and principles, and

demonstrate behaviors, attitudes, policies, and structures

that enable them to work effectively cross-culturally

Have the capacity to:

◦ Value diversity

◦ Conduct self-assessment

◦ Manage the dynamics of difference

◦ Acquire and institutionalize cultural knowledge

◦ Adapt to the diversity and cultural contexts of the

individuals, families, and communities they serve

When providing direct services and supports:

◦ Develop or adapt services and supports to address the needs and preferences of culturally and linguistically diverse communities

◦ Provide services and supports in locations and at times that are accessible to communities served

◦ Is knowledgeable of and works in conjunction with natural networks of support within diverse communities

◦ Ensure that services and supports comply with all relevant government mandates governing language access – e.g., foreign language interpretation, translation services, and signage

◦ Involve people with disabilities from diverse cultural and linguistic groups and their families in:

Design of services and supports

Implementation of services and supports

Evaluation of services and supports

Cultural Humility

Cultural Humility: Is proposed as a more suitable goal in multicultural medical education. Cultural humility incorporates a lifelong commitment to self-evaluation and self-critique, to redressing the power imbalances in the patient-physician dynamic, and to developing mutually beneficial and nonpaternalistic clinical and advocacy partnerships with communities on behalf of individuals and defined populations.

(CULTURAL HUMILITY VERSUS CULTURAL COMPETENCE: A CRITICAL DISTINCTION IN DEFINING PHYSICIAN TRAINING OUTCOMES IN MULTICULTURAL EDUCATION MELANIE TERVALON, MD, MPH Children's Hospital Oakland JANN MURRAY-G ARCÕ A, MD, MPH University of California, San Francisco. Journal of Health Care for the Poor and Underserved · Vol. 9,No. 2 · 1998)

Linguistic Competence

Is the capacity of an organization and its personnel to communicate effectively, and convey information in a manner that is easily understood by diverse groups, including persons of limited English proficiency, those who have low literacy skills or are not literate, individuals experiencing disabilities, and those who are deaf or hard of hearing

Linguistic competence requires organizational and provider capacity to respond effective to the health and mental health literacy needs of populations served.

The organization must have policies, structures, practices, procedures, and dedicated resources to support this capacity.

Key Terms

Culture – A system of collectively held values, beliefs, and

practices of a group which guides thinking and actions in

patterned ways

Culturally appropriate – considers multiple cultural

factors in the design and delivery of services, training,

research, collaboration/partnerships, and community

engagement, including but not limited to:

◦ Beliefs, values, norms

◦ Language

◦ Experiences, history

◦ Gender, sexual orientation, gender identity or expression

◦ Age, socioeconomic status, education

◦ Disability and differing abilities

Key Terms, cont.

Race – There is an array of different beliefs about the definition and meaning of race. ◦ Race is a social construct used to separate the world’s

peoples. There is only one race, the human race, and everyone is mostly like each other.

◦ Human Genome Project evidence indicates that the genetic code for all human beings is 99.9% identical; there are more differences within groups (or races) than between them.

◦ Race is a social and cultural construct (Institute of Medicine) – “a construct of human variability based on perceived differences in biology, physical appearance, and behavior.” In fact, natural distinctions grounded in significant biological and behavioral differences cannot be drawn between groups.

◦ A tribe people, or nation belonging to the same stock; a division of humankind possessing traits that are transmissible by descent and sufficient to characterize it as a distinctive human type.

Key Terms, cont.

Ethnicity – how one sees oneself, or is seen by others, as part of a group on the basis of presumed ancestry and sharing a common destiny – may include skin color, religion, language, customs, ancestry, occupational or regional features, and/or a unique history different from that of other ethnic groups.

Disability – That which arises at the interface between a person’s functional abilities and the environment’s accessibility

Cultural brokering – the act of bridging, linking, or mediating between groups or persons of different cultural backgrounds for the purpose of reducing conflict or producing change

Key Terms, cont.

Cultural broker – A go-between, one who advocates on behalf of another individual or group

Equity – The equal opportunity to be healthy for all population groups.

Disparity – Inequality or differences of outcome or conditions between cultural groups that are not predictable based on the number of group members present in the general population. May be in health, education, wages, etc.

Disproportionality – The underrepresentation or overrepresentation of a particular group in a program or system – can be defined in terms of racial or ethnic background but also socioeconomic status, national origin, English proficiency, gender, sexual orientation, and other variables.

What do you think about this statement?

FAMILY CENTERED CARE =

CULTURAL COMPETENCE

Sources“The Present” video by Jacob Frey and Markus Kranzler, 2014

http://www.sfgate.com/entertainment/article/Film-short-about-disabled-puppy-wins-

hearts-59-7390864.php

MCH definition of Family Centered Care

http://leadership.mchtraining.net/?page_id=128

Association of Maternal and Child Health Programs (AMCHP): Life Course

http://www.amchp.org/PROGRAMSANDTOPICS/LIFECOURSEFINAL/Pages/default.

aspx

American Academy of Pediatrics, National Center for Medical Home

Implementation

https://medicalhomeinfo.aap.org/overview/Pages/Whatisthemedicalhome.aspx

“Family Centered Care” (PowerPoint) by Annette Blancas, LCSW, BCBA,Alaska

LEND 2017 (ask Elaine for paper copy)

SAMHSA

https://www.samhsa.gov/capt/applying-strategic-prevention/cultural-competence

MCH definition of Cultural Competence

http://leadership.mchtraining.net/?page_id=126

CULTURAL HUMILITY VERSUS CULTURAL COMPETENCE: A CRITICAL DISTINCTION IN DEFINING PHYSICIAN TRAINING OUTCOMES IN MULTICULTURAL EDUCATION MELANIE TERVALON, MD, MPH Children's Hospital Oakland JANN MURRAY-G ARCÕ A, MD, MPH University of California, San Francisco. Journal of Health Care for the Poor and Underserved · Vol. 9,No. 2 · 1998

https://facweb.northseattle.edu/ccummings/Medical%20Anthropology/cultural%20humility%20versus%20cultural%20competence.pdf

National Center for Cultural Competence: Cultural and Linguistic Competence Assessment for Disability Organizations

https://nccc.georgetown.edu/documents/NCCC-CLCADO-Assessment.pdf

Skills and Tools for Culturally Competent Care by Ingrid M. Allard, MD, MSEd

https://docs.google.com/a/vcu.edu/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxmYW1pbGllc2Rpc2FiaWxpdHlhbmRjdWx0dXJlfGd4OjYwNjg5Y2M1ZDU0NGFkNjE