Core Outcome 2

Children with special health care needs will receive coordinated, ongoing, comprehensive care within a medical home.

National Center to Address Core Outcome 2

According to the American Academy of Pediatrics, a medical home is not a building, house, or hospital, but rather an approach to providing comprehensive primary care. A medical home is defined as primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. In March 2007, a consensus statement on medical home principles was developed and jointly endorsed by ACP, AAFP, AOA, and AAP. Understanding the unique needs of children and families, the Academy highlights certain critical pediatric medical home principles:

Family-centered partnership: Trusting, collaborative, working partnership with families, respecting their diversity and recognizing that they are the constant in a child’ s life
Community-based system: Family centered- coordinated network designed to promote the healthy development and well being of children and their families
Transitions: Provision of high-quality, developmentally appropriate, health care services that continue uninterrupted as the individual moves along and within systems of services and from adolescence to adulthood
Value: A high-performance health care system requires appropriate financing to support and sustain medical homes that promote system-wide quality care with optimal health outcomes, family satisfaction, and cost efficiency

In a medical home, a clinician works in partnership with the family/patient to assure that all of the medical and non-medical needs of the patient are met. Through this partnership, the pediatric clinician can help the family/patient access and coordinate specialty care, educational services, out-of-home care, family support, and other public and private community services that are important to the overall health of the child/youth and family. Each component of the medical home requires the attitudes, beliefs, knowledge, and skills inherent in cultural and linguistic competence if the goal of a medical home for all children and youth with special health care needs is to be achieved.

Click below on each component of the medical home (as described on the main website for the National Center for Medical Home Implementation, administered by the AAP) to learn about:

how cultural and linguistic competence relate to the component
current evidence for the need for cultural and linguistic competence for the component
resources to help create culturally and linguistically competent medical homes

Accessible

A medical home needs to be accessible not just financially and geographically, but also personally. AAP describes personal accessibility in terms of communication and interaction. The families or youth are able to speak directly to the pediatric clinician, when needed. In addition, families and youth have to feel comfortable and respected interacting with office staff and those who are the gatekeepers to appointments and interaction with the pediatric clinician. For families and youth from all racial, ethnic, linguistic, and cultural backgrounds to experience a personally accessible medical home the following are important:

the medical home systematically identifies demographics of the practice area and changing trends in who lives in the community;
clinicians and staff engage in personal and group efforts to examine their own values, beliefs, attitudes and behaviors in cross cultural interactions;
pediatric clinicians develop an awareness of their own values and attitudes and attain the knowledge and skills for effective cross-cultural communication and interaction;
staff in a medical home view it as their role to provide a welcoming environment and demonstrate respect for families and youth;
linguistic competence is key so that families with limited English proficiency, limited health literacy and other communication limitations can have effective direct personal communication with the pediatric clinician;
clinicians and staff have the skills to work effectively with interpreters; and
the medical home seeks ongoing and formalized input from families about their experiences with the practice and suggestions for improving personal accessibility in cross-cultural interactions

The Evidence

There is a growing body of evidence to suggest that there is a need to enhance the cultural and linguistic competence of health care providers in relation to personal accessibility. The 2005-2006 National Survey of Children with Special Health Care Needs found that children with special health care needs who are African American or Hispanic are significantly less likely that white children to have families who report that their doctors and other health providers spend enough time with them or listened carefully to them. This disparity is even greater for families whose primary language is Spanish.

Table 1. How often CSHCN's doctors and other health providers spend enough time Nationwide

Race/ethnicity of child

Child and Adolescent Health Measurement Initiative. 2005/2006 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [02/11/08] from www.cshcndata.org

Table 2. How often CYSHCN's doctors and other health providers listen carefully to parents Nationwide

Race/ethnicity of child

Table 3. How often CSHCN's doctors and other health providers spend enough time Nationwide

Primary language for Hispanic CSHCN

A number other studies echo this finding in relation to the broad health care arena. Cooper and Roter (2002) summarized studies showing that physicians deliver less information, less supportive talk, and less proficient clinical performance to black and Hispanic patients and patients of lower socioeconomic class than they do to more advantaged patients. Johnson et al. (2004) found that physicians were more verbally dominant and engaged in less patient-centered communication with African American patients than with white patients.

Cooper, Gonzales, Gallo, et.al.(2003) found that race concordant (clinician and patient of the same race) visits were longer, had higher ratings of patient positive affect, and patients in these visits were more satisfied and rated their providers as more participatory. Language concordance (provider and patient speaking the same language) has also been associated with more effective interactions, improved adherence to treatment, more interaction during the visit and better patient recall of recommendations in health care interactions (Manson, 1988; Seijo, Gomez and Friedenberg, 1991). However, at the current time, the racial, ethnic, and linguistic diversity of the health care workforce does not match that of the population. The challenge for the medical home is to develop the attitudes, behaviors, and skills that result in positive exchanges and improved communication in cross-cultural interactions.

Resources to Support Cultural and Linguistic Competence in Accessibility

Promoting Cultural Diversity and Cultural Competency Self-Assessment Checklist for Personnel Providing Services and Supports to Children with Disabilities & Special Health Needs and their Families

Cultural Competence: It All Starts at the Front Desk

Working With Linguistically Diverse Populations: Frequently Asked Questions

National Network of Libraries of Medicine Feature on Health Literacy

References

Cooper, L. A., & Roter, D. L. (2002). Patient-provider communication: The effect of race and ethnicity on process and outcomes of health care. In A. Y. S. B. D. Smedley, & A. R. Nelson (Ed.), In unequal treatment: Confronting racial and ethnic disparities in health care. (pp. 306-330). Washington, D.C.: Institute of Medicine, National Academy Press.

Cooper, L.A., Gonzales, J.J., Gallo, J.J., et al. (2003).The acceptability of treatment for depression among African-American, Hispanic, and white primary care patients. Medical Care, 41, 479-489

Cooper, L. A., & Powe, R. N.(2004). Disparities in patient experiences, health care processes, and outcomes: The role of patient-provider racial, ethnic, and language concordance. The Commonwealth Fund. Washington, DC.

Cooper-Patrick, L., Gallo, J.J., Gonzaless, J.J., et al. (1999). Race, gender and partnership in the patient-physician relationship. JAMA, 282:583-589.

Johnson, R. L., Roter, D., Powe, N. R. & Cooper, L. A. (2004). Patient race/ethnicity and quality of patient-physician communication during medical visits. American Journal of Public Health, 94(12), 2084-2090.

Manson, A. (1988). Language concordance as a determinant of patient compliance and emergency room use in patients with asthma. Medical Care, 26(12), 1119-28.

Seijo, R., Gomez, H., Freidenberg, J. (1991). Language as a communication barrier in medical care for Latino patients. Hispanic Journal of Behavioral Sciences, 13, 363.

Family-centered

Family-centered care within the medical home is described by the American Academy of Pediatrics as knowing the child or youth and family and partnering with them in a shared responsibility and shared decision-making for care. Families are provided clear, unbiased and complete information and options and are recognized as the experts on their child and family and as principle caregivers and centers of strength for their children. Cultural and linguistic competence in implementing the family-centered component of the medical home includes:

knowing how the family defines itself;
understanding who must be involved in making key decisions;
recognizing that linguistic competence is key to the dialogue needed for shared responsibility and decision-making;
eliciting, recording and incorporating information in medical records, registries, and care plans developed with the family about cultural values and preferences related to:
- health and mental health care,
- language access needs,
- definition of family,
- key decision-makers,
- complementary and alternative medicine,
- spirituality or religious practices,
- end of life decisions, or
- utilizing socially or culturally constructed support networks.

The Evidence

There is evidence that there is a need to enhance the cultural and linguistic competence of health care providers in relation to family-centered care. Responses to the 2005-2006 National Survey of Children with Special Health Care Needs indicate that Hispanic and black children are more likely than white children to have families who report that they have not received family-centered care and are not partners in decision-making.

Table 4. CSHCN without family-centered care Nationwide

Race/ethnicity of child

Table 5. CSHCN without family-centered care Nationwide
Primary language for Hispanic CSHCN

Table 6. CSHCN whose families are partners in decision-making and satisfied with services Nationwide

Race/ethnicity of child

Resources to Support Cultural and Linguistic Competence in Family-centered Care

Working With Linguistically Diverse Populations: Frequently Asked Questions

Policy Brief: Cultural and Linguistic Competence in Family Supports

Institute for Family-Centered Care’ s Cultural Competency Bibliography

From Father to Father

Continuous

The AAP describes continuous care within the Medical Home as assuring that the child has the same pediatric health care professionals available from infancy through adolescence and young adulthood and that the medical home provides assistance with transitions in the form of developmentally appropriate health assessments and counseling to the child or youth and family. Transitional changes may relate to developmental stages, critical life events in the family, changes in the broader services system (early interventions services to school services, etc.) as well as the transitions in medical care, such as from hospital to home. Cultural competence in the continuous component of the medical home includes:

knowing the cultural implications and expectations of families in relation to transitions and significant changes;
knowing how cultural and family perceptions of health, wellness, illness, and disability may impact family expectations for their child at each stage of life;
knowing that families from different cultural backgrounds may have differing expectations for developmental milestones for their children;
knowing that families’ cultural values about such concepts as independence vs. interdependence or individuality vs. communal/group focus will impact how families seek to negotiate such key transitions as early childhood to school or adolescence to adulthood;
learning from families and youth their values and expectations and providing respectful support and guidance to fulfill their visions of the next stage of life; and
understanding the cultural meaning of critical life events to families (e.g. birth of another child, death in the family, end of life decisions, change in parents’ marital status, etc.) to families.

The Evidence

Families from different cultural background may have differing expectations about the age at which developmental milestones are achieved and about what behaviors and characteristics they seek to support in their children. Community institutions such as schools and recreation programs, as well as social interaction patterns for children in the community, may be based on values that are different than those of the family. Pachter and Dworkin (1997) verbally administered a questionnaire to two hundred fifty-five mothers (90 Puerto Rican, 59, African American, 69 European American and 37 West Indian-Caribbean) asking at what age a normal child achieves standard developmental milestones. There were significant differences among groups (after controlling for age of mother, number of children, level of education and socioeconomic status) on 9 of 25 milestones. Differences were seen mainly on social and personal milestones. International studies have found similar differences among cultures. (Joshi and Maclean (1997).

There is evidence that transition to adulthood for youth with special health care needs reflects racial and ethnic disparities. Although adults with disabilities generally have poor employment outcomes, labor participation among adults with disabilities from diverse ethnic, racial and cultural groups is even worse. (Brett, 2000; Walker, Turner, Micahel, Vincent and Miles, 1995) Among the general population, the labor force participation rate of adults with disabilities is reported to be from 28% to 31%. The rate for Latinos is 21.2% to 23.2% with only 5% working full-time all year. The rate for Blacks is 17.8% to 22% with only 8.6% working full-time all year. (National Organization on Disability, 1999).

Resources to Support Cultural and Linguistic Competence in Continuous Care

Working With Linguistically Diverse Populations: Frequently Asked Questions

Understanding and Negotiating Cultural Differences Concerning Early Developmental Competence: The six raisin solution Vivian J. Carlson, M.A., Robin L. Harwood, Ph.D., School of Family Studies, University of Connecticut, Storrs, Connecticut Edited from the Zero to Three Journal, Dec 1999/Jan 2000

Perspectives on Transition: Transcript of NCCC Topical Conference Call

Cultural Reciprocity Aids Collaboration with Families– Transition

References

Brett, J. T. (2000). Working for people with disabilities. Connection, 25-27.

Joshi, M. and Maclean, M. (1997) Maternal expectations of child development in India, Japan and England. Journal of Cross-Cultural Psychology, 28(2), 219-234.

National Council on Disability (1999). Lift every voice: Modernizing disability policies and programs to serve a diverse nation. [On-Line serial].

Pachter, L. and Dworkin, P. (1997) Maternal expectations about normal child development in 4 cultural groups. Archives of Pediatrics and Adolescent Medicine, 151(11), 1144-1150.

Walker, S., Turner, K.A., Michael, M.H., Vincent, A. & Miles, M.D. (1995). Disability and diversity: New leadership for a new era. Washington D.C. Howard University Research and Training Center for Access to Rehabilitation and Economic Opportunity

Comprehensive

The AAP describes comprehensive care in the medical home as care delivered or directed by a well trained physician who is able to manage and facilitate all aspects of care. It is available 24 hours a day, 7 days a week, all year. Comprehensive care addresses preventive, primary, and tertiary care needs. The medical home helps support and advocate for the child or youth and family in obtaining comprehensive care that addresses medical, educational, developmental, psychosocial and other service needs. Cultural and linguistic competence in assuring comprehensive care within the medical home may include:

an understanding of cultural beliefs, values, and preference in family choices about care, services, and supports.
knowledge about natural and informal support networks (faith-based organizations, natural and spiritual healers, and racial-, religious- and ethnic- specific community service and advocacy organizations may all be part of the comprehensive set of services and supports for some families.)
knowledge of how community agencies and institutions are viewed by the racial, ethnic, and cultural groups they serve— are these organizations viewed as respectful, trustworthy, welcoming, and able to meet specific cultural and linguistic needs?
knowledge of any implications for families’ immigration status if referred to specific programs or services within the community.
collaboration with specialists in the medical home referral network who are effective in working cross-culturally and with children, youth and families with limited English proficiency and other literacy or communication needs.
knowledge about sources of mental health services that are effective in working cross-culturally and are acceptable to the families served.

The Evidence

There is evidence for a need to enhance the cultural and linguistic competence of health care providers in relation to comprehensive care. Responses to the 2005-2006 National Survey of Children with Special Health Care Needs indicate that Hispanic, black and multi-racial children are significantly more likely to have families who report that they had one or more unmet need for healthcare services in the year preceding the survey than white children. Significantly more Hispanic children with special health care need had difficulty getting referrals for needed specialty care than any other racial or ethnic group surveyed.

Table 7. CYSHCN with 1 or more unmet needs for health care services, past 12 months Nationwide

Race/ethnicity of child

Child and Adolescent Health Measurement Initiative. (2005) National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [09/08/2006] from www.cshcndata.org

Table 8. CYSHCN who needed specialty care and had problems getting referrals Nationwide

Race/ethnicity of child

Child and Adolescent Health Measurement Initiative. (2005) National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [09/08/2006] from www.cshcndata.org

Resources to Support Cultural Competence in Comprehensive Care in the Medical Home

Sharing a Legacy of Caring: Partnerships Between Health-Care and Faith-Based Organizations

Policy Brief: Cultural and Linguistic Competence in Family Supports

Family Perspective: Nivea’ s Life

Compassionate

The American Academy of Pediatrics describes compassionate care within the medical home as showing concern for the well-being of the child or youth and family that is expressed in verbal and non-verbal interactions. The pediatric health professional and staff within the medical home make efforts to understand and empathize with the feelings and perspectives of the child or youth and family. Cultural and linguistic competence in providing compassionate care within the medical home may include:

self-examination of one’ s own values and beliefs related to health, wellness, illness, disability, and treatment and how they may complement or conflict with those of the children, youth and families in your care;
supporting and honoring the family’ s cultural practices and beliefs that are protective or benign, and respectfully helping identify and change those beliefs and practices that have a negative health impact; and
honoring family values, beliefs and preferences related to end of life decisions.

The Evidence

There is evidence that indicates the need to improve cultural and linguistic competence in delivering compassionate care within the medical home. Responses to the 2005-2006 National Survey of Children with Special Health Care Needs indicate that children with special health care needs from all non-white and Hispanic groups were significantly more likely to have families who reported that doctors and other health professional sometimes or never were sensitive to their family’ s values than white families.

Table 8 How often CSHCN's doctors and other health care providers are sensitive to families' values and customs Nationwide

Race/ethnicity of child

This quality of compassion, however has been documented to be an important component of culturally competent care. Tucker, Herman, Pedersen, Higley, Montricahrd, et.al. (2003) interviewed low-income minority patients in primary care via focus groups, and found that their definitions of culturally competent care (care that they experienced as sensitive to their needs) included the provider having good “ people skills, ” technical competence, individualized treatment, and effective communication.

Resources to Support Cultural Competence in Compassionate Care

Curriculum Enhancement Modules: Process of Inquiry – pay special attention to section on Teaching tools, strategies and resources.

References

Tucker, C. M., Herman, K.C., Pedersen, T.R., Higley, B., Montrichard, M., & Ivery, P. (2003). Cultural sensitivity in physician-patient relationships: perspectives of an ethnically diverse sample of low-income primary care patients. Medical Care, 41(7), 859-870.

Culturally Effective

The American Academy of Pediatrics describes culturally effective care as recognizing, valuing, respecting, and incorporating into the care plan the child’ s or youth’ s and family’ s cultural background. Cultural competence as defined by the National Center for Cultural Competence looks beyond the patient/health care professional interaction to also include policies, procedures, structures, and practices of the organization within which care occurs. Thus cultural competence encompasses and supports culturally effective care

The Evidence

There is evidence in the 2005-2006 National Survey of Children with Special Health Care Needs that non-white and Hispanic families are significantly more likely to respond that their child’ s health care providers are never or only sometimes receive health care that is culturally sensitive. Almost a third of families whose primary language is Spanish report that their child’ s provider was never or only sometimes culturally sensitive.

Table 9. How often CSHCN's doctors and other health care providers are culturally sensitive Nationwide

Race/ethnicity of child

Table 10. How often CSHCN's doctors and other health care providers are culturally sensitive Nationwide

Primary language for Hispanic CSHCN

Current research indicates that cultural competence and linguistic impacts the effectiveness and quality of care for children. Cohen et al (2005) conducted a case-control study in a large, academic, regional children’s hospital in the Pacific Northwest from January 1, 1998- December 31, 2003 and found that hospitalized pediatric patients whose families had language barriers are more likely to experience serious medical errors compared to families who do not have language barriers.

Lieu et al. (2004) studied the impact of cultural competence on quality of care for children with asthma who had Medicaid insurance. A survey was used to assess practice sites policies and organizational practices, including a measure of cultural competence. The six cultural competence policies assessed included:

recruits ethnically diverse nurses and providers
recruits bilingual nurses and providers
attempts to minimize cultural barriers through printed materials
offers cross-cultural or diversity training
offers training to providers to develop communication skills
evaluates the level of cultural competence among providers

Cultural competence policies were an independent predictor of quality in the care of children with asthma, in relation to underuse of preventive medications (associated with severe episodes and higher hospitalization rates) and parents’ rating of care. When compared with sites with the lowest rating of cultural competence, sites with the highest ratings (scores of 5 or 6) had an Odds Ratio of 0.15 (p, .005) reflecting a significant decrease in underuse of preventive medications based on parent report among children with persistent asthma. There was approximately a 7% increase (P=.02) based on mean, of parents’ ratings of asthma care among sites with the highest and lowest cultural competence scores.

Resources to Support Culturally Effective Care

Communication and Culture: The Common Denominator in Improving Quality and Safety of Care for Children, Promising Strategies to Assess and Improve Quality and Safety of Hospital Care for Latino Children from Limited English Proficient (LEP) Homes

Culturally effective policy statement of the American Academy of Pediatrics

Culturally Effective Care page of the Community Pediatrics Division of the American Academy of Pediatrics

Culturally Effective Care resources from the National Center for Medical Home Initiative website

References

Cohen, AL, Rivara, F, Marcuse, EK, McPhillips, H & Davis, R. “Are language barriers associated with serious medical events in hospitalized pediatric patients?” Pediatrics 2005 116(3) 575-9.

Lieu, TA, Finkelstein, JA, Lozano, P, Capra, AM, Chi, FW, Jensvold, N, Quesenberry, CP & Farber, HJ. “Cultural competence policies and other predictors of asthma care quality for Medicaid-insured children”. Pediatrics. 2004 Jul;114(1):e102-10.