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Core Outcome 1

Families of children with special health care needs will partner in decision making at all levels, and be satisfied with the services they receive.

 

National Center to Address Core Outcome 1
National Center to Address Outcome 2

Family participation in the health care of their children with special health care needs and disabilities is essential. A strong partnership, with shared decision making between a child’s family and provider is the foundation of care and a marker for satisfaction with services. Research informs us that both parents and professionals partially define collaborative partnerships in terms of the quality of their person-to-person relationships with each other (McWilliam, Tocci & Harbin, 1998). Trust, respect, communication, shared vision, and cultural competence are among the factors deemed critical for collaboration and partnership (Parette, Brotherson, & Huer, 2000; Sodak, & Erwin, 2000; and Park, & Turnbull, 2002).

Cultural and linguistic competence in assuring that families of children and youth with special health care needs partner in decision-making at all levels and are satisfied with services received will be demonstrated by providers in the following ways.

Partnership

Providers, families and youth come to the healthcare relationship with a set of culturally based expectations about what partnership means. These expectations may change over time as the family and youth mature and gain more knowledge and experience about partnering with providers and shared decision-making or navigating health systems. Changes in health status, school, and other life circumstances can also lead to changed perspectives about partnerships with providers. As the field of health care and medicine is moving towards addressing the historical power imbalance in the patient-provider relationship, providers who demonstrate cultural and linguistic competence will:

  1. Ask how the family defines itself;
  2. Ask who the family wants to have involved in making key decisions and make a way for those individuals to be included (e.g. extended family, clergy or spiritual advisors, community or tribal leaders, or friends);
  3. Explore the cultural understanding of partnerships and expectations within the context of the family-provider relationship;
  4. Engage in self-reflection to check for biases that may influence the family-provider partnership such as race, ethnicity, language, communication style, socioeconomic status, literacy, or disability status;
  5. Elicit information about gender roles and expectations in decision-making;
  6. Respond to the diverse communication preferences and needs of children, youth and their families in the health care encounter (e.g. sign language , interpretation and translation services, verbal and nonverbal communication styles);
  7. Provide information that families and youth need to make knowledgeable decisions and provide informed consent;
  8. Attend to the impact of literacy and health literacy on the family-provider partnership; and
  9. Elicit and honor cultural values and beliefs about end-of-life decision-making.

Family-Centered Care

Family-centered care “assures the health and well-being of children and families through a respectful, partnership that honors the strengths, cultures, traditions, and expertise that everyone brings to this relationship” (Bishop, Woll, and Arango, 2004). Family-centered care is the standard of care that results in high quality services for all children and recognizes the family as the principle care giver and center of strength and support for the child and youth (National Center for Family-Centered Care, 1989). Until recently, much of the family-centered care literature was silent on the need for cultural competence. Family-entered care and cultural and linguistic competence are integrally linked. Yet many within health and mental health communities struggle to integrate these approaches to care. The movement to advance family-centered care and cultural and linguistic competence has often evolved along parallel tracks. This fact is well documented in the early definitions of family-centered care in the literature (Bishop, Woll, & Arango, n.d.). Although these definitions reference “honoring cultures, cultural diversity, and family traditions,” little emphasis was placed on policies and structures necessary to translate this philosophy into family-centered practice. A pervading perception within the movement was that if an organization was family-centered, then by default it must be culturally competent. Moreover, much of this literature did not tend to draw upon and integrate the rich body of knowledge related to cultural and linguistic competence. A recent literature review commissioned by the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA), U.S. Department of Health and Humans Services (DHHS), draws this conclusion. Bishop, Woll, and Arango (2003) conducted a broad review of the literature and other sources of information on family-centered care. This review encompassed the period of 1993-2003 and included 250 journal and other articles, books, chapters, videos, monographs, Web sites, training manuals, resource catalogs and guides, block grants, and display posters. The authors found that “little mention of cultural competence was made in family-centered care materials” (Arango & McPherson, 2005).

Providers who deliver family-centered and culturally and linguistically competent care will:

  1. Elicit the health beliefs and practices of families and youth. Use these beliefs and practices to inform the plan of care and approaches for services and supports. This may include, but is not limited to cultural definition of health, mental health, wellness, illness and disability; stigma associated with mental health diagnosis and treatment, complementary and alternative medicine; the role of religion, faith and spirituality; diet and exercise.
  2. Inquire about gender roles and expectations in the provision of care (e.g. cultural norms about interacting with the opposite sex, modesty, matriarchal or patriarchal family structure or clan.)
  3. Refer families to family-support services that address their cultural and linguistic preferences and needs.
  4. Ask about or become knowledgeable of the natural networks of supports that families use to help them care for their child and youth with special health care needs
  5. Respect the potential strengths and protective factors inherent in families’ cultural beliefs, values and practices.
  6. Recognize that all families (no matter their level of English proficiency, literacy, education or socio-economic status) have unique and important knowledge about their children and youth that is essential for providers to know.
  7. Address sexual orientation, and gender identity and expression of children and youth in the provision of care, services and supports. Be aware of and attend to the potential for discord that may arise in families when addressing these issues.
  8. Elicit and address family and youth cultural values and beliefs about independence and adult roles when planning for transition to adulthood. Be aware of and attend to potential for discord that may arise in families when addressing these issues.
  9. Elicit and document information about primary language and need for interpretation and translation services in the medical record.
  10. Identify and pursue formal and informal opportunities for learning about the intersection of culture, language and health (i.e. health and health care, disparities, culture-specific evidence based practices, cross cultural communication, and health literacy.
  11. Reflect upon their own cultural belief systems, including the culture of medicine and how these beliefs influence interactions with children, youth and their families.

Organizations and practices need to support health and mental health care providers to integrate cultural and linguistic competence in family-professional partnerships and in family-centered care. Organizational policies, structures, practices and procedures that reflect cultural and linguistic competence will:

  1. Involve families from diverse racial, cultural, ethnic, linguistic, geographic, religious, and other backgrounds in the development and implementation of policies, programming, professional development and the delivery of care (Institute for Patient and Family Centered Care, 2007) and supportive services.
  2. Recruit family members who reflect the cultural diversity of the communities and geographic areas served to participate in leadership and advisory positions.
  3. Support professional development and training related to cultural and linguistic competence from the front desk to clinical settings and extending to community partners.
  4. Ensure adequate funding for the provision of translation and interpretation services (foreign and sign language).

The Evidence

The Maternal and Child Health Bureau, (2007) identified five characteristics of family-centered care, stating that, “to ensure that care is family-centered, providers must: (1) spend enough time with the family;(2) ensure that they have the information they need; (3) listen to the family’s concerns; (4) be sensitive to the family’s values and customs; and (5) make the parents feel like partners in their children’s care.”

Racial/Ethnic Disparities in Family-Professional Partnerships and Satisfaction with Services

Responses to the 2005/2006 National Survey of Children with Special Health Care Needs provide evidence that slightly less than half (42.6%) of all families with children and youth with special health care needs reported that they did not partner in decision-making and were not satisfied with services received. Data indicate a significant disparity in the area of partnerships and shared decision-making, suggesting that providers and systems serving children and youth with special health care needs still have a long way to go to achieve this outcome.

This finding is in keeping with prior research that indicate that racially and ethnically diverse adults, and parents of children with and without special health care needs are more likely than whites to be dissatisfied with their care (Ngui and Flores, 2006; Halfon, Inkelas, Mistry, Olson, 2004; Forrest, Riley, Vivier, Gordon, Starfield, 2004; Flores, Olson, Tomany-Korman, 2005) and are less likely to report feeling like a partner with their children’s health provider (Knapp, Madden, & Marcu, 2009).

When race and ethnicity are accounted for, 61.1% of Non-Hispanic white children with special health care needs had families who reported the highest levels of feeling like a partner with their child/children’s providers. Data from the 2005/2006 National Survey of Children with Special Health Care Needs indicate that a significant disparity exists for Hispanic and Non-Hispanic Other children and youth – with less than half (46.6%, and 47.2% respectively) of families reporting being partners in decision-making and being satisfied with services. Non-Hispanic Black families also experienced disparities in partnership in decision-making and satisfaction with slightly more than half (53.5%) reporting this outcome as being met.

Outcome #1: CSHCN whose families are partners in decision-making and satisfied with services Nationwide

Race/ethnicity of child
Outcome #1: CSHCN whose families are partners in decision-making and satisfied with services Nationwide
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 [10/20/10] from www.cshcndata.org

 

Race, Ethnicity, and Relationships that Impact Parent-Provider Partnership

Studies including African American, Hispanic and Asian families indicate that relationships with providers and interpersonal care are critical aspects of feeling like partners in their own and their children’s care (Johnson, Roter, Powe & Cooper, 2004; Collins, Hughes, Ives, Edwards & Tenney, 2002) and that the quality of interpersonal care is of equal importance (Cooper-Patrick, Gallo & Gonzales, Vu, Powe, Nelson & Ford, 1999).

Most families want to have rapport with their health care provider and to feel that the person responsible for the care of their child is truly interested in the child and family’s health and well being. For families of children with special health care needs, this extends to having a partnership with a trusted health care professional or team that: (1) spends time with them, (2) listens to concerns and provides information critical to their child’s development, care, and treatment, (3) communicates effectively, (4) considers families to be critical partners in the care and well-being of their child and (5) demonstrates understanding of and sensitivity to the family’s unique cultural values, preferences and needs.

Cooper-Patrick et. al. conducted a study with 32 primary care practices with sizeable culturally diverse patient populations to assess how patient and provider race and ethnicity impact ratings of participatory decision-making style and partnerships between patients, families, and providers. In this study the authors found that when compared to white patients, African American, Asian, and Latino patients had less participatory visits and viewed their providers as less likely to use a participatory decision-making style. In the Cooper-Patrick et al. study participants also reported not feeling like partners with their providers and reported lower satisfaction with care received. Such results are in keeping with prior research that documents that racially and ethnically diverse patient populations rate the quality of interpersonal care by providers and within the health care system in general more negatively than whites (Hargraves, Cunningham, & Hughes, 2001; Weech-Maldonado, Morales, Spritzer, Elliott, & Hays, 2001).

A key aspect of interpersonal care is the use of participatory decision-making, or a process by which patients, families and providers strive to find common ground and health care options and solutions that are acceptable to all. Interpersonal care emphasizes provider-patient and/or family communication with equal contributions to questions and conversation. Provider use of participatory decision-making style has been linked to higher levels of patient satisfaction and improved outcomes (Greenfield, Kaplan, Ware, 1985; Bertakis, Roter, Putnam, 1991; Roter, Stewart, Putnam, Lipkin, Stiles, Inui, 1997).

A similar study conducted by Johnson, Roter, Neil and Cooper (2004) explored patient race/ethnicity and the quality of patient-physician communication during medical visits. This study looked at verbal dominance, positive affect as conveyed through voice tone on the part of both patients and providers and patient-centered visits (characterized by active patient participation in medical dialog). Study findings indicate that with African American patients, providers were more verbally dominant and tended to be less patient-centered in their approach than with white patients. In addition, patients and providers both showed less positive affect during visits than with white patients. This study suggests that when providers dominate conversations during medical visits that patient and family engagement and participation are hindered and adversely impact communication and relationships, and may contribute to disparities in health and health care.

Respect, Bias, Cultural Sensitivity, and the Impact on Patient Provider Relationships

A study conducted by Blanchard and Lurie (2004) investigating patient reports of disrespect in the health setting revealed that 14% of black, 19% of Hispanic, and 20% of Asians reported having been treated disrespectfully by their doctor. Black, Hispanic and Asian respondents were “more likely than whites to report being treated unfairly due to their race, or language and believed that they would have received better care had they belonged to a different race” (p.75). Individuals with limited English proficiency or for whom English was not their primary language were also more likely to say that they had been treated with disrespect and that had they been of a different race or ethnicity, they would have received better care.

All patients and families deserve relationships with physicians and other providers that are based upon mutual respect and cultural understanding. Patients and families that perceive disrespect or unfair treatment in health related encounters are less likely to feel like partners and to be less satisfied with services. Perceived discrimination has also been associated with lower levels of satisfaction with the health care system (LaVeist, Nickerson, and Bowie, 2000; Bird & Bogart, 2001).

In terms of cultural sensitivity, 2005/2006 data from the National Survey of Children with Special Health Care Needs indicate that 20% of Hispanic children with special health care needs had families who reported a lack of provider cultural sensitivity. In addition, other non-white, non-Hispanic respondents also reported this lack of provider cultural sensitivity--(17% of both black children and children from other races with special health care needs). When the data is compared to 7.7% of Non-Hispanic white children with special health care needs whose families reported a lack of provider cultural sensitivity, a statistically significant disparity is apparent.

Family-centered care and care coordination-How often CSHCN's doctors and other health care providers are culturally sensitive Nationwide

Race/ethnicity of child
Family-centered care and care coordination-How often CSHCN's doctors and other health care providers are culturally sensitive Nationwide
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 [10/20/10] from www.cshcndata.org

The preceding data suggests that for families from racial and ethnic groups other than Non-Hispanic white, the absence of cultural sensitivity may be a factor that contributes to lack of satisfaction and feelings of not being a partner in decision-making. Other sources also suggest that this lack of sensitivity is a factor in low satisfaction and sense of partnership. Flores, Abreu, Olivar and Kastner (1998) researched barriers to health care access for Latino children. Study results revealed that when asked to name a particular barrier that had caused them not to bring their children in for care, 11% of Hispanic families identified office staff and provider’s lack of cultural understanding as a critical barrier. Flores, Olson, and Tomany-Korman (2005) analyzed data sets from the National Survey of Early Childhood Health (NSECH) in order to research data on family interactions with health care providers.

Findings from the NSECH indicate that parents from cultural and ethnic groups other than Non-Hispanic white more frequently reported than their white counterparts that providers never/only sometimes respected them as the expert on their child, and never/only sometimes understood their child-rearing preferences. Hispanic parents were more likely to report that providers never/only sometimes understood their child’s needs. An additional finding of this data review revealed that Non-Hispanic black and Hispanic parents were twice as likely to be asked about violence, smoking, drinking, and drug use during office visits as their white counterparts. The authors suggest that “over discussion” of certain topics with racially and ethnically diverse families other than Non-Hispanic white and under discussion of the same topics with white families raises concerns about potential stereotyping.

In light of the caution presented in the textbox above, it would be conceivable that parents from racial and ethnic groups other than Non-Hispanic white could interpret stereotyping as a form of discrimination, leading to feelings of lack of partnership, impaired patient-provider communication, and dissatisfaction with services. Furthermore, there is evidence that provider bias and stereotyping of families from racial and ethnic backgrounds other than Non-Hispanic white, may contribute to racial and ethnic disparities in perceptions of quality of care and satisfaction with services (Smedley, Stith, and Nelson, 2003). Additional evidence suggests that strategies that respond to the unique concerns faced by families from racial and ethnic backgrounds other than Non-Hispanic white can assist in improving family sense of feeling like partners and satisfaction with services. For example, providers that take the time to better understand sociocultural influences and preferences and who use culturally and linguistically competent approaches in their primary care practices report an increase in patient satisfaction, improved health outcomes, and greater provision of preventive care (Denboba, McPherson, Kenney, Strickland and Newacheck, 2006).

The Importance of Linguistic Competence and Language Access

High quality patient-provider communication is a necessary ingredient for the delivery of patient and family-centered care. Reciprocal communication can result in higher ratings for family/patient provider relationships - a cornerstone of partnerships in decision-making. The absence of interpretation services makes it virtually impossible for parents and family members with limited English proficiency to understand, communicate, make informed decisions, give consent for procedures, follow medication regimens, and partner in the health and treatment of their child with special health care needs. It is imperative for clinicians and health care organizations to use available regulation and standards (such as Title VI of the Civil Rights Act of 1964 and the CLAS standards) to guide them in the provision of culturally and linguistically competent care to patients and families.

Language barriers have been documented to have a significant impact on the health care of children and families from diverse racial and ethnic backgrounds, especially for Spanish speaking Hispanics (Flores, Abreu, Olivar and Kastner, 1998; Flores, Abreu, Schwartz, and Hill, 2000; Weech-Maldonado, Morales, Spritzer, Elliott & Hays, 2001; Moreno, and Morales, 2009). In particular, Spanish-speaking Hispanics tend to be less satisfied with provider communication than Hispanic families who use English as their primary language (Moreno and Morales, 2010). Data from the 2005/2006 National Survey of Children with Special Health Care Needs demonstrates particular disparities for Hispanics whose primary language is Spanish. Survey data indicate that 64.8% of Hispanic families whose primary language is Spanish reported not feeling like a partner in decision-making and dissatisfaction with health care services, while 48.1% of Hispanic families with English as their primary language reported similarly. When family partnership and satisfaction with services are assessed using the five domains of family-centered care, the following disparities for Hispanic children with special health care needs whose family’s primary language is Spanish or English are documented:

  • Adequacy of time spent — 51.5% of Spanish speaking families vs. 30% of English speaking Hispanic families reported that providers spent inadequate time with them.
  • Cultural Sensitivity — When comparing ratings for cultural sensitivity between Spanish and English speaking Hispanic families, 32.5% and 14.8% respectively, indicated that their child’s provider was sometimes or never culturally sensitive.
  • Parents feel like partners in caring for their child — Among Spanish and English speaking Hispanics, 24% and 17.9% respectively, indicated that providers never or sometimes made them feel like partners in caring for their child.
  • Flores et al. (1998) found that 26% of Hispanic parents indicated that language problems were the greatest barrier to getting health care for their child, and 11% cited a lack of interpreters as a significant barrier to care. In the same study, some parents with limitations in English speaking ability reported that “medical staff not speaking Spanish had led to adverse health consequences for their children”, such as poor medical care (8%), misdiagnosis (6%), and inappropriate medicines (5%). Moreno and Morales (2010) found that in environments where families had access to interpreter services, they were more likely to report increased satisfaction with health care and doctor and office staff communication, both of which provide the potential for families to feel like partners in decision-making.
    Providers listened carefully to them — Across language groups, 23.5% of Hispanic families whose primary language is Spanish and 14.9% of families whose primary language is English reported that providers sometimes/never listened carefully to them.
  • Provided needed information — 31.2% of Spanish speaking families and 23.1% of English speaking Hispanic families stated that their provider never or sometimes provided needed information.

Families whose primary language is not English face a number of challenges during health care encounters which can be mitigated through the use of interpreters. A review of data from the 2005/2006 National Survey of Children with Special Health Care Needs revealed that a significant number of families from varied language backgrounds, with limited English proficiency reported not having access to interpreters during health care visits when they needed them. Of children with special health care needs, whose families primary language is not English, 65% of Non-Hispanic Other families, 56% percent of Non-Hispanic white families, and 46.1% of Hispanic families reported never/sometimes getting language assistance from an interpreter.

How often CSHCN able to get an interpreter during health care visits -- group needing this service only Nationwide

Race/ethnicity of child
How often CSHCN able to get an interpreter during health care visits -- group needing this service only Nationwide
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 [10/20/10] from www.cshcndata.org

Research indicates that families who need and do not always get an interpreter, perceive their care to be of lower quality and are less satisfied with communication with providers and office staff (Moreno and Morales, 2010). Ensuring language access is a meaningful first step on the journey to guaranteeing that families partner in decision-making and are satisfied with the services they receive.

Resources

Resources on Cultural and Linguistic Competency in achieving the outcome of families of children with special health care needs will partner in decision making at all levels, and be satisfied with the services they receive.

A Guide for Advancing Family-Centered and Culturally and Linguistically Competent Care

Cultural Competence Linked to Patient and Family-Centered Care

Family-Professional Partnerships

Health Care Language Services Implementation Guide

The Role of Cultural Competence in Family-Centered Care

Working with Family, Culture, and Disability

Family-Centered, Culturally and Linguistically Competent Care: Essential Components of the Medical Home

Helping Families Support their Lesbian, Gay, Bisexual, and Transgender (LGBT) Children

Providing Services and Supports for Youth Who Are Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex, or Two-Spirit

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