children with special health care needs: a model of care for families from diverse cultural and...

Children With Special Health Care Needs: A Model of Care for Families From Diverse Cultural and Linguistic Backgrounds

Children With Special Health Care Needs: A Model of Care for Families From Diverse Cultural and Linguistic Backgrounds

Theora A. Evans, Ph. D., MPHCollege of Social WorkUniversity of Tennessee

& Ann Garwick, Ph.D.College of Nursing

University of Minnesota

American Public Health Annual MeetingAtlanta, GA

October 22, 2001

The Maternal and Child Health Bureau grant MCJ279613 and the W. K. Kellogg Foundation supported preparation of this paper.

Impoverished and Minority Children

Impoverished and Minority Children

Poor children & youth have higher prevalence rates for moderate and severe chronic physical conditions than their non-poor peers.(Newacheck, Stoddard, & McManus, 1993; Newacheck & Halfon, 1998; Saravanabhavan & Walker, 1999)

Poor minority children have higher prevalence rates for moderate and severe chronic physical conditions than non-poor Caucasian children.(Edmunds, Marinson, Goldberg, 1990; Ing & Tewey, 1994)

Access and Utilization Issues

Poor CSHCN from culturally and linguistically diverse backgrounds use fewer outpatient services, have more hospital admissions, and are less likely to receive medication for conditions than their non-poor Caucasian peers.(Newacheck, et al., 1993; Newacheck, Huges, Hung, Wong, & Stoddard, 2000; Blendon, Aiken, Freeman, & Corey; Strogatz, 1990)

Access and Utilization Issues

Even with health insurance, poor minority children sought significantly fewer health services than did non-poor Caucasian peers(Newacheck, et al., 1993; Newacheck, et al., 2000)

With a growing population of impoverished minorities, the transactions between CSHCN, their families, and health care delivery systems warrant exploration

Method

Three Ethnic-Specific Conferences:Theme: Building on Cultural StrengthsTargeted Ethnic Groups: African Americans/Blacks; Native Americans/Alaskan Natives; and Hispanic/Latino Americans

Two and a half day meetings for each conference to discuss:

Prevalence; interactions between ethnicity, family, and health; and the development of local caring communities.

Method (Cont’d)

Commissioned papers facilitated large and small group discussions

Participants included:Parent-advocates, academic/clinicians; allied health researchers/practitioners (nursing, psychology, public health, and social work); and policymakers.

Data Collection and Analysis

Recorders collected qualitative data during large and small group activities

Working groups developed recommendations in the domains of policy, research, and direct service for improving utilization, access, and quality of care

Content analysis generated core elements of a health care model for CSHCN and their families from diverse cultural and linguistic backgrounds.

Participants’ Comments

Community-Based

When formulating research questions, collecting data and implementing research projects in Black and African American Communities, collaborate with family and community members to incorporate their interests and concerns into the project.

Black/African American Conference

Policies need to be developed at the community level—emerge from Hispanic families’ perceived needs and preferences for meeting those needs.

Latino/Hispanic Conference


Health-Oriented Provide condition specific information using language, concepts and formats well

understood and accessible to families. Native American/Alaskan Native Conference Promote the coordination of services for children with complex medical, social, and

psychological needs by interdisciplinary training regarding team /collaboration skills that will improve the quality of care…



Cultural Competence

Indian families tend to be adult-centered and are based on extended kinship

relations. What is best for the family often has greater salience than what is best for the individual child. Children with disabilities are usually integrated into their families and have a role within the family, the clan, and the community. Each family member is accorded respect because each person, even children with disabilities, fulfill critical functions in the community.

Native American/Alaskan Native Conference


Cultural Competence …Information concerning the values and beliefs of other cultural groups must be

incorporated into attitudes and applied in practice along with the understanding that cultural competence is an ongoing process. After learning information about particular groups, providers must practice and refine their skills through working together with families and community members to develop new ways of talking and interacting that bridge different ways of thinking and knowing….

…Create partnerships between American Indian parents or other family members and

mainstream providers to develop models that blend knowledge about mainstream services with the cultural and symbolic meanings and understandings for Indian families and providers.


Cultural Competence

Providers need to understand within group diversity. There is some variation among persons who identify themselves as Black versus African American. A family’s knowledge about the health care system and insurance issues are influenced by a multitude of factors including country of origin and length of time since immigration, urban or rural location, socio-economic status, racial heritage, religion, communication style, and concepts of health/healing, well being, and illness. Tribes vary in size, resources and land ownership. It is also important to recognize the general difference among family constructs in American Indian Families across tribal groups.



Cultural Competence

Conduct qualitative research to investigate aspects of interpersonal health care and professional-patient relationship so as to improve patient and family satisfaction as well as to document the impact of that relationship on perceptions of healing of the consumer, and increase knowledge with regard to cultural protective factors of the practitioner.



Family - Centered

Changes in the health care service delivery must occur from the top-down, from the bottom up, and sideways (lateral movement among peers at all levels) in order to improve services for Black and African American CSHCN and their families. The process of change and empowerment should be dynamic and interactive as a means to create more effective coalitions. Skill building needs to occur at all levels: for families to learn about legislation, rights, entitlements and how to work with people in power, for professionals to integrate service and treatment decisions with family needs and perspectives, and for funders and policymakers to be educated about the effectiveness of providing culturally competent services that are family-centered and community-based.



Family – Centered

Indian families tend to be adult-centered and are based on extended kinship relations. What is best for the family often has greater salience than what is best for the individual child. Children with disabilities are usually integrated into their families and have a role within the family, the clan, and the community. Each family member is accorded respect because each person, even children with disabilities, fulfill critical functions in the community.


Participants’ Comments Family-Centered

Changes in the health care service delivery must occur from the top-down, from the bottom up, and sideways (lateral movement among peers at all levels) in order to improve services for Black and African American CSHCN and their families. The process of change and empowerment should be dynamic and interactive as a means to create more effective coalitions. Skill building needs to occur at all levels: for families to learn about legislation, rights, entitlements and how to work with people in power, for professionals to integrate service and treatment decisions with family needs and perspectives, and for funders and policymakers to be educated about the effectiveness of providing culturally competent services that are family-centered and community-based.



Resilience-Focused …Tribal members receive services through a patchwork of agencies and organizations

that often overlap, have limited funds, are not accessible, and may also have frequent turnover of providers…Children and youth may receive additional services from the educational system, social service agencies, or the justice system…

…Maintaining harmony and balance between the role of the child in the family, in the

community, and in ritual and religious life is traditionally reinforced in all domains of life. Native American/Alaskan Native Conference


Strengths-Based Strive for harmony and balance within the context of the concerns, issues, and

service needs raised by the family. In other words: build on individual and family strengths; develop strategies for resolving conflicts, and be accountable.

Support the work of traditional and bicultural tribal members to bridge the differences between traditional healing and spiritual practices and mainstream practices.

Cultivate self-knowledge and self-assessment in training [medical and allied health

fields] programs to create self-understanding that fosters the ability to listen, learn from stories, and make decisions in partnership with family members.


Health Implications

The inability or failure to access and utilize health care services leads to discontinuity of care that can negatively affect bio-psychosocial functioning(Halfon, Inkelas, & Wood, 1995)

Implications for Practice

Competency requirements for health providers and administrators:

In the provision of family-centered and culturally competent service delivery

– Cultural self-assessment– Knowledge of non-western health beliefs– Communication skills– Use of interpreters– Assessment of staffing patterns– Utilization of alternative decision-making models

Implications for Practice

Innovative Funding Strategies:

to facilitate seamless collaboration among medical, health, and educational providers.

Non-Hierarchical Relationship

Policy Evaluation Funding Evidence-Based Training Service(Health, Social , Research Delivery Systems& Mental Health)

Family Centered

Community-Based

Culturally Competent

Health Oriented

ResiliencyFocused

Interdisciplinary Team

Strengths-Based

Ethical Decision-Making

Child

Siblings

Parents

Extended Family

Specialty Care

Administration

Primary Care

children with special health care needs: a model of care for families from diverse cultural and...

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