Urban American Indian Family Caregivers' Perceptions of the Quality of Family-Centered Care

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Urban American Indian FamilyCaregivers' Perceptions of theQuality of Family-CenteredCareAnn Garwick , Jennifer M. Jennings & Darcy TheisenPublished online: 07 Jun 2010.

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Urban American Indian FamilyCaregivers’ Perceptions of the Quality of

Family-Centered Care

Ann Garwick, Jennifer M. Jennings, and Darcy TheisenSchool of Nursing

University of Minnesota

A community-based needs assessment was conducted to identify urban American In-dian family caregivers’ perceptions of the quality of care they received for their chil-dren with chronic conditions. Thirty family caregivers in a large midwestern citycompleted the What Do You Think? Survey. One third of the participants thoughttheir child’s providers believed things about their backgrounds that were not true andthat they were treated less well because of their ethnic or cultural background. Onefourth of the caregivers reported that providers were not sensitive to family needs oradequately informed about their child’s condition. To ensure the delivery of fam-ily-centered care that is culturally appropriate, we recommend that providers respect-fully inquire about the family’s particular needs, cultural beliefs, and practices andplan care in partnership with family caregivers.

A major goal of Healthy People 2010 is to eliminate ethnic disparities in health out-comes. Research related to the quality of care for American Indian children withchronic conditions is needed to reduce adverse health outcomes in this population.Health disparities in the American Indian population include higher rates of con-genital anomalies, infant mortality, and shortened life expectancy compared to thegeneral U.S. population (Brenneman, 1997; U.S. Department of Health and HumanServices, 1997a, 1997b). Fetal alcohol syndrome, bacterial meningitis, and otitismedia contribute to higher rates of disabilities among American Indian childrenand youth, including seizure disorders, quadriplegia, developmental delay, lan-guage and speech delay, mental retardation, and vision and hearing problems

CHILDREN’S HEALTH CARE, 31(3), 209–222Copyright © 2002, Lawrence Erlbaum Associates, Inc.

Requests for reprints should be sent to Ann Garwick, 6–101 Weaver–Densford Hall, University ofMinnesota, 308 Harvard Street S.E., Minneapolis, MN 55455. E-mail: [email protected]

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(Hodge, 1989). Barriers to health care contribute to these disparities as well as theincreased risk of some children developing disabilities from acute conditions suchas otitis media and meningitis. The disproportionate number of American Indianchildren who live in poverty also places them at risk for adverse outcomes.

A number of studies have demonstrated disparities in health outcomes and ac-cess to basic health services for ethnic minority children, particularly those whoare poor and uninsured (Newacheck, Stoddard, & McManus, 1993; Newacheck etal., 1998). Although American Indian and Alaskan Native children have been in-cluded in these national surveys, the numbers have been too small to determine theprevalence of chronic conditions or access issues for this particular group of chil-dren. In addition, access data on American Indian and Alaskan Native childrenwith chronic conditions have not been systematically collected or tracked in a co-ordinated way by the various health care systems that provide care for these chil-dren (Brenneman, 1997; Joe, 1997).

In order to reduce health disparities, there is a critical need to ensure the avail-ability of health care providers who can provide family-centered, culturally com-petent care to American Indian children and their families. Meanwhile, little isknown about how urban American Indian families, in particular, view the carethey receive for children with chronic conditions (Garwick & Auger, 2000). In or-der to ensure that care is culturally appropriate, we need to learn what familiesthink about the quality of care provided. Thus, our goals were to identify familycaregivers’ satisfaction with the way health care providers informed them abouttheir child’s condition and their perceptions of how sensitive health care providerswere to their needs and how well they were treated.

According to the U.S. Census Bureau, the population of American Indians isyoung and growing more rapidly than the U.S. population as a whole. This popula-tion is approximately 2.4 million and comprises 0.9% of the total U.S. populationwith projections of growth to 4.4 million by 2050 (U.S. Census Bureau, 2000).There are more than 500 federally recognized tribal groups in the United Statesthat are characterized by different languages and historical and cultural traditions.More than half of American Indians and Alaskan Natives live off reservations, yetfew data sets are available to study their health outcomes (Sugarman, Brenneman,Laroque, Warren, & Goldberg, 1994).

To date, the limited amount of research about American Indian children withchronic conditions has been conducted on reservations (Joe, 1997). Because overhalf of the American Indian population lives in urban settings, the decision wasmade to conduct this needs assessment in an urban community. The literature indi-cates that a large number of urban-residing American Indians use traditional In-dian medicine, yet they are often reluctant to disclose this information to theirhealth care provider (Hollow, 1999).

The national model of care for children with special health care needs calls forcare to be comprehensive, community based, family centered, culturally compe-

210 GARWICK, JENNINGS, THEISEN

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tent, and coordinated (Hutchins & McPherson, 1991). In order to assure the imple-mentation of this standard of care, health care providers and agencies need todevelop evaluation strategies for determining how families in particular communi-ties view the care they receive.

Providing culturally competent care is essential to ensuring access and qualityof care for American Indian children with chronic conditions. Cultural compe-tence is needed at the individual provider level as well as at the program or institu-tional level. This project builds on Cross’s definition of cultural competence,defined as “a set of congruent behaviors, attitudes, and policies that come togetherin a system, agency or among professionals that enable that system, agency orthose professions to work effectively in cross-cultural situations” (Cross, Bazron,Dennis, & Isaacs, 1989, p. 13). At the Consensus Building Conference on“Children With Special Health Care Needs and Their Families: Building on Cul-tural Strengths,” family and provider representatives from three ethnic groups(American Indian and Alaskan Native, Hispanic, and African American) devel-oped a national action plan for improving care for children with special needs fromdiverse cultural backgrounds (Evans, Garwick, & Rinehart, 1999). Two of the top10 recommendations for improving care specifically addressed the importance ofgaining input from families by (a) building mechanisms to ensure true family andcommunity participation in the design, implementation, and evaluation of pro-grams and services, and (b) developing needs assessments and satisfaction evalua-tions with stakeholders and families. Similar recommendations are found in achecklist for policymakers and administrators developed by the National Centerfor Cultural Competence in response to the “One Hundred Percent Access andZero Disparities” campaign launched by the U.S. Department of Health and Hu-man Services, Health Resources and Services Administration (Goode, 1999).

There is a growing body of evidence to suggest that the cultural competence ofproviders and organizations makes a difference in health care utilization and out-comes; however, few studies have focused on American Indian family caregivers’perceptions of the quality of care provided to children with chronic conditions(Joe, 1997; Sanchez, Plawecki, & Plawecki, 1996). Malach and Segal (1990) inter-viewed American Indian parents of children with special needs in New Mexicoand their service providers to identify obstacles to care as well as recommenda-tions for improving services. Ineffective communication, lack of commu-nity-based services, and problems with agency policies were the three majorfactors that limited families’ access to care. Both parents and providers identifiedmore effective communication between families and providers as the key factor toimproving the availability of services. Parents stressed that providers need to beculturally aware and that services need to be culturally appropriate. The lack ofculturally appropriate services and providers who do not understand or respect thefamily’s particular cultural beliefs and practices are factors that contribute to lackof follow-up with providers and poor treatment adherence (Sanchez et al., 1996).

PERCEPTIONS OF QUALITY OF CARE 211

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Cultural conflicts can also delay or hamper the child’s treatment plan (Joe, 1997).This article addresses a gap in the literature by investigating the quality of carefrom the standpoint of urban American Indian family caregivers.

METHOD

The following questions guided this investigation: (a) Do urban American In-dian family caregivers think that their health care providers are sensitive to theirneeds? (b) Do urban American Indian family caregivers think that their chil-dren’s doctors treat them respectfully? and (c) How satisfied are urban Ameri-can Indian family caregivers with the way health care providers inform themabout their child’s condition?

Research Design

The data for this article were drawn from the Indian Family Stories Project, a com-munity-based research project that was developed in collaboration with families,community leaders, and providers using a participatory action research (PAR) ap-proach (Travers, 1997). The PAR framework involves research that is (a) commu-nity based, (b) action oriented, and (c) collaborative. PAR focuses on developingpartnerships and collaborations to increase the relevance of research for the re-searchers, consumers, and stakeholders. This approach also provides understand-ing about an issue within the context of the community and increases the commu-nity’s understanding of the issue. To implement this PAR approach, leaders fromcommunity organizations that serve American Indian children and families wereactively involved in the design, recruitment, and implementation of the IndianFamily Stories Project. Because the literature indicates that families from minoritybackgrounds often have difficulty accessing medical services (Newacheck et al.,1993) and that traditional American Indian families often use native healing prac-tices (Joe, 1997), families were recruited through informal community networksrather than the conventional method of recruiting through medical institutions.

Recruitment

A snowball sampling technique (where participants were nominated by communityleaders or referred by other participants) was used to recruit American Indian fami-lies who have children with chronic conditions. A chronic condition was defined asan ongoing health condition that has a biological, anatomical, or physiological ba-sis with long-term sequelae (Stein, Bauman, Westbrook, Coupey, & Ireys, 1993).


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Families were recruited from the Phillips neighborhood in Minneapolis, Min-nesota, which is the city with the largest American Indian population in the state(Minnesota State Demographic Center, 2001). In keeping with the participatoryaction framework, community leaders in a variety of settings were informed aboutthe study and invited to tell families about the project. For example, project staffworked closely with the Little Earth Residents Association in planning and imple-menting the project. Little Earth of United Tribes, Inc. is a housing project in thePhillips neighborhood, which includes approximately 700 American Indian resi-dents, the majority of whom are children. Information about the project was alsoplaced in community newspapers, and flyers were posted in community agenciesthat serve American Indian families. A limitation of this recruitment strategy isthat the actual number of families who were informed about the project is un-known. An incentive of $25 per family was offered for participation.

Potential participants contacted the project coordinator who informed themabout the project in more detail and conducted a screening interview to ensure thatthey met the following inclusion criteria: (a) the child had a chronic illness or dis-ability for at least 1 year, (b) the child was between 3 and 12 years of age, and (c)the child was living at home at the time of the family interview. All of the eligibleparticipants who contacted the project coordinator agreed to participate in thestudy. Informed written consent was obtained from the family caregivers prior totheir participation in the interview.

Participants

This community-based sample included 30 family caregivers (27 Ojibwa, 2Lakota, and 1 Dakota) who care for children with a variety of chronic conditions.Seventy percent of the children lived in single-parent-, aunt-, or grandpar-ent-headed households (16 mother-headed, 3 father-headed, 1 aunt-headed, and 2grandmother-headed households). Thirty percent of the children lived in two-par-ent- (n = 8) or two-grandparent- (n = 1) headed households. Total family incomesranged from less than $10,000 to $70,000 per year, with a modal income categorylevel of less than $10,000. Seventy percent of the families (n = 21) also receivedneed-based assistance, such as Aid to Families with Dependent Children (AFDC),or food stamps, or both, and two of the families received Medicaid benefits.Twenty-three percent of the children (n = 7) received Social Security Insurance(SSI). Despite efforts to recruit families with a range of socioeconomic back-grounds, the majority of participants were from low-income families, reflecting thedisproportionately high number of American Indian children living in poverty inMinneapolis. In 1989 the poverty rate for American Indian children in Minneapoliswas 66.3% (Urban Coalition, 1994).


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A variety of chronic conditions were represented in this sample. Primary diag-noses included asthma, autism, chronic migraines, Cornelia de Lange syndrome,developmental disability, Down syndrome, esophageal atresia, Hirschsprung’sdisease, juvenile rheumatoid arthritis, lead poisoning with cognitive impairment,microcephaly, seizure disorder, and spina bifida. One third (n = 10) of the childrenhad more than one chronic condition (e.g., asthma and fetal alcohol syndrome,spina bifida and asthma).

Half of the children were boys (n = 15), and half were girls (n = 15). The chil-dren ranged in age from 3 to 11 years (mean age 6 years 9 months). All the childrenin the sample had been living with their chronic condition for at least 1 year (range1 to 9 years).

Twenty-seven (90%) of the family primary caregivers were women and 3(10%) were men. The age range of family caregivers was 21 to 49 years (M = 32.8,SD = 7.2). The educational level of primary caregivers ranged from less than sev-enth grade to graduate or professional degrees. Ten caregivers (33.3%) had lessthan a high school degree, 7 (23.3%) had a high school diploma, 11 (36.7%) hadsome vocational or technical education or college education, and 2 (6.7%) hadcompleted a college education.

Procedure

In-home interviews, which lasted about an hour and a half, were conducted by theproject coordinator who is a social worker and an Abenaki Indian. The protocol in-cluded an open-ended interview and three questionnaires. This report relies on datacollected from the 100-item needs assessment What Do You Think? Survey. Thesurvey was completed by the family-identified primary caregiver of the child with achronic condition.

Measure

The 100-item What Do You Think? Survey was developed to assess the needs andissues facing families of children with chronic conditions from diverse culturalbackgrounds. Items for the original survey were generated from the content analy-sis of 63 family interviews conducted with Hispanic, African American, andEuro-American families who participated in an earlier cross-cultural project(Garwick, Kohrman, Wolman, & Blum, 1998). The content validity was initiallyestablished by the systematic review of all items by the cross-cultural researchteam, consisting of experts in the area of childhood chronic conditions, and by cul-tural representatives who work with children from diverse cultural backgrounds. Inorder to determine the content validity and cultural relevance of the What Do You


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Think? Survey for American Indian families, an expert panel of 2 nurses and 1 so-cial worker, who have extensive experience working with American Indian fami-lies, was convened. This panel agreed that all of the original items were relevant toAmerican Indian families who care for children with chronic conditions, so all ofthe original items were retained. However, 3 items were added to assess the utiliza-tion and need for traditional healing services.

Specifically, this report focuses on participants’ responses to 16Likert-type-scale items from 3 subscales of the What Do You Think? Survey,which were designed to assess family caregivers’ perceptions of (a) the sensitivityof health care providers (5 items), (b) how they were treated by their child’s doc-tors (7 items), and (c) their satisfaction with the way health care providers in-formed them about their child’s condition (4 items). Health care providers weredefined as doctors, nurses, therapists, and social workers on the survey. Interitemcorrelations were run with Statistical Package for the Social Sciences (SPSS; Ver-sion 10 for Macintosh, Chicago, IL) to assess the internal consistency of the 3subscales that were theoretically constructed. The alpha reliability coefficient forthe sensitivity of health care providers subscale was � = .71, treatment by child’sdoctors was � = .78, and satisfaction with information from health care providerswas � = .76. Because the psychometrics for this survey are in the developmentalstage, and the purpose of this survey is to understand particular family needs, re-sponses to individual items within the subscales are reported.

RESULTS

Because the primary goal of the analysis was to compare the degree to which familycaregivers either agreed or disagreed with particular items, the “strongly agree” and“agree” responses were combined and contrasted with the combined “strongly dis-agree” and “disagree” responses. The results are described in terms of these com-bined responses to specific questions.

Sensitivity of Health Care Providers

Most of the family caregivers surveyed thought that their health care providerswere sensitive to their feelings at the time of diagnosis (76.7%) and at the time ofthe interview when they had been living with the diagnosis for at least 1 year (80%).Although the majority (83.4%) of family caregivers thought that their child’s doc-tors took their concerns seriously, approximately one third of the participants didnot think that the child’s doctors understood their family needs (31%) or what mat-tered to them as a family (33.3%). See Table 1 for a summary of family caregivers’perceptions of sensitivity of health care providers.


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Treatment by Providers

The majority of family caregivers thought that their child’s doctors listened to themin a respectful way and did not think that they were treated less well because of theirethnic or cultural background, religion, race, and economic status. However, 37.9thought their child’s doctors believed things about their backgrounds that were nottrue, and 36.7 thought that they were treated less well because of their ethnic or cul-tural background. See Table 2 for a summary of the family caregivers’ perceptionsof how well they were treated by their child’s doctors.

Satisfaction With Information Provided byHealth Care Providers

Overall, most family caregivers were satisfied with the way that health care providersinformed themabout their child’scondition.Themajorityofparticipants reported thatthey liked the way their child’s doctors informed them about their child’s condition(80%)andanswered theirquestions (83.3%)at the timeofdiagnosis.At the timeof theinterview, the majority of family caregivers indicated that they liked how most healthcare providers kept them informed about their child’s condition (70%) and answeredtheir questions (73.3%). See Table 3 for a summary of family caregivers’ satisfactionwith the way health care providers informed them about their child’s condition.


TABLE 1Family Caregivers’ Perceptions of the Sensitivity of Health Care Providers

SA A D SD NA

Family Caregivers’ Perceptions n % n % n % n % n %

At the time of diagnosisMost providers were sensitive to

my feelings2 6.7 21 70.0 3 10.0 3 10.0 1 3.3

CurrentlyMost providers are sensitive to

my feelings4 13.3 20 66.7 5 16.7 1 3.3 0 0

My child’s doctors take myconcerns seriously

8 26.7 17 56.7 4 13.3 1 3.3 0 0

My child’s doctors understandwhat matters to my family

6 20.0 14 46.7 9 30.0 1 3.3 0 0

My child’s doctors understandmy family’s needsa

6 20.7 13 44.8 7 24.1 2 6.9 1 3.4

Note. N = 30 family caregivers. SA = strongly agree; A = agree; D = disagree; SD = stronglydisagree; NA = does not apply.

an = 29 family caregivers.

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DISCUSSION

The results of this study need to be interpreted with consideration of the design, thepilot nature of the survey instrument, and limitations in the scope of the study interms of its small size and specific geographic location. Consistent with the goals ofconducting a needs assessment using a participatory action research framework,the findings also need to be interpreted within the community and cultural context.We first shared our findings with participating families at a feast held in the LittleEarth community. Families underscored the importance of improving the culturalcompetence of health care providers who work with American Indian children andrequested that we share their stories with health care providers. The goal of thisstudy was not to generalize to other American Indian families who have childrenwith chronic conditions but, instead, to illustrate the importance and utility of as-sessing family caregivers’ perceptions of the quality of care provided to AmericanIndian children with chronic conditions who live in urban areas. Evaluative feed-back from families is needed to ensure that the delivery of family-centered care isculturally competent.

Overall, the majority of participants thought that health care providers weresensitive to their needs and that they were treated well by their children’s doctorsand satisfied with the information they received. However, a number of partici-pants indicated problems in these areas, which suggests the need for improvementin the delivery of health care. Traditionally, American Indians hold healers in highregard; because of this respect they may be less likely to negatively evaluate healthcare providers. It is also important to note that these ratings represent average rat-


TABLE 2Family Caregivers’ Perceptions of Treatment by Health Care Providers

SA A D SD NA

My Child’s Doctors n % n % n % n % n %

Listen to me in a respectful way 8 26.7 18 60.0 3 10.0 1 3.3 0 0Think I’m educated enough to

understand my child’s condition7 23.3 15 50.0 6 20.0 2 6.7 0 0

Believe things about my backgroundthat aren’t really truea

4 13.8 7 24.1 11 37.9 5 17.2 2 6.9

Treat me less well because of my:Ethnic or cultural background 5 16.7 6 20.0 10 33.3 8 26.7 1 3.3Religious background 2 6.7 2 6.7 13 43.3 9 30.0 4 13.3Race 3 10.0 5 16.7 13 43.3 8 2.67 1 3.3Income 4 13.3 4 13.3 13 43.3 8 26.7 1 3.3


an = 29 family caregivers.

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ings of experiences with a variety of providers over time. In future studies, it wouldbe helpful to have more specific information about particular providers and thecontexts in which care was provided. It is possible that health-care-setting factors(i.e., environment, policies, and procedures) contributed to family caregivers’ per-ceptions of the quality of care received from health care providers.

The findings that approximately one third of the family caregivers did not thinkthat their child’s providers understood their family needs or what mattered to themas a family suggest gaps in the delivery of culturally sensitive, family-centeredcare. To provide family-centered care that is culturally appropriate, the providerfundamentally needs to be aware of the family’s needs. Sensitivity to family needsis an essential component of family-centered care, yet the findings indicate thatone fourth of the participants experienced problems at the time of diagnosis as wellas during the chronic phase of the condition. These results suggest the need to con-duct family needs assessments at periodic intervals and to specifically inquireabout how the condition is impacting the family.

One of the major findings in this study was that almost two fifths of the partici-pants thought that their child’s doctors believed things about their backgroundsthat were not true. More than one third of the participants thought that they weretreated less well because of their ethnic or cultural background. The results fromthe What Do You Think? Survey were consistent with the themes emphasized bythe same participants during semistructured interviews conducted as part of the In-dian Family Stories Project protocol (Garwick & Auger, 2000). In their storiesabout their experiences caring for their children with chronic conditions, severalfamily caregivers talked about how some health care providers misinterpreted


TABLE 3Satisfaction With the Way Health Care Providers Informed Family Caregivers

SA A D SD NA

Family Caregivers’ Perceptions n % n % n % n % n %

At the time of diagnosisLiked how my child’s doctors told

me about my child’s condition5 16.7 19 63.3 3 10.0 3 10.0 0 0

Liked how my child’s doctorsanswered my questions

9 30.0 16 53.3 5 16.7 0 0 0 0

CurrentlyLike how most health care

providers keep me informedabout my child’s condition

4 13.3 17 56.7 4 13.3 5 16.7 0 0

Like how health care providersanswer my questions

3 10.0 19 63.3 7 23.3 1 3.3 0 0


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their indirect eye contact and quiet communication patterns as disinterest, disre-spect, or as a sign of inadequate educational background, although their intent wasto show respect to the provider. They also indicated that some providers did not re-spect their traditional values and beliefs or understand the role of the extendedfamily in caring for children. In order to avoid stereotyping and providing inappro-priate care, health care providers need to know more about traditional health be-liefs and healing practices, the importance of extended families, and culturalcommunication patterns of American Indian families (Garwick & Auger, 2000).Despite the recent emphasis on cultural competence and the fact that cultural mis-understandings have been reported in the literature for several decades, many ofthe participants in this study reported receiving biased care. This biased care maybe due in part to the providers’ lack of knowledge about American Indian cultureand stereotypes or assumptions about American Indians.

Many negative ideas and stereotypes are evident in the limited literature aboutAmerican Indian families. These stereotypes may limit the health care provider’sability to provide culturally sensitive care to American Indian family caregivers.McCubbin, Thompson, Thompson, McCubbin, & Kaston (1993) explained thatstereotypes of minority populations may be strengthened due to the lack of re-search and the ability to understand culturally diverse groups. Further research andeducation about American Indian families’ cultural backgrounds, values, and be-liefs is needed to counter these stereotypes.

Although the majority of the participants were satisfied with the way theirchild’s doctors informed them about their child’s condition and answered theirquestions at the time of diagnosis, there was more variability in their satisfactionwith how they were kept informed about their child’s condition after they had beenliving with the condition for at least a year. These findings point to the ongoingneeds that family caregivers have for information to care for their children withchronic conditions. The finding that the percentage of participants who liked howtheir providers answered their questions decreased from the time of diagnosis tothe time of the interview suggests that families experienced barriers in accessinginformation. It is possible that misunderstandings about the family’s cultural back-ground and encounters with a variety of providers influenced the lower satisfac-tion ratings during the chronic phase of the condition.

IMPLICATIONS FOR PRACTICE

In order to provide family-centered care that is culturally competent, it is essentialthat health care providers not make unfounded assumptions about the family’s cul-tural background, religion, or income. To avoid misunderstandings, we recom-mend that health care providers listen respectfully to individual family needs andinquire about the family’s cultural beliefs and practices. Providers also need to be


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aware of their own personal biases to avoid providing biased care to persons fromother cultural backgrounds. Professional training programs need to continue to de-velop and evaluate the efficacy of cultural competency education for professionalsin training and continuing education opportunities for practicing clinicians.

Because the research literature on urban families who care for children withchronic conditions is scarce, health care professionals need to critically review ex-isting literature about American Indians for biased statements. The findings alsosuggest the importance of asking family caregivers about their health beliefs andpractices, rather than assuming that all American Indian families hold particularbeliefs. Health care providers must be aware of the diversity of beliefs and prac-tices within the American Indian population and consider the cultural backgroundand preferences of the individual child and his or her family as they develop a planof care. To avoid biased care, health care professionals also need to be aware of thefamily’s particular socioeconomic background, rather than assuming the educa-tional or economic status of the family. Knowledge of the family’s socioeconomicand cultural background is recommended for linking families to appropriate re-sources and decreasing health disparities.

Health care providers need to learn about the community in which the childwith a chronic condition lives and how it relates to his or her health status andthe type of care he or she receives. Providers must also be conscious of culturalbeliefs, values, and perspectives on illness and disability that have a major influ-ence on the perceptions of families who care for children with chronic condi-tions (McCubbin et al., 1993).

Reliable, trusting relationships and respect are highly valued in American In-dian culture (American Indian Research and Policy Institute, 1999). To be effec-tive and sensitive to family needs, health care providers need to build trustworthyrelationships and communicate effectively with families who care for childrenwith chronic conditions. Community involvement can also help build trust and anetwork of support for these families. For example, health care providers can par-ticipate in activities within the community where they serve to build relationshipsand to increase their own understanding of the community and cultural context.Health care providers can also contribute to the community by presenting cultur-ally appropriate educational forums and providing health information to AmericanIndian families in the community.

In order to provide culturally appropriate care, health care providers shouldhave a basic understanding of the health issues facing the American Indian com-munity as well as the range of health beliefs and healing practices used by Ameri-can Indian families in their community. Providers need to seek and acquireknowledge about the cultural and ethnic groups they serve. Then, knowledge ofthe culture needs to be incorporated into all facets of practice, such as history tak-ing and referral of families to appropriate resources. Providers also need to elicitfeedback from families to determine their understanding of information provided.


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In clinical encounters, providers should respectfully ask about the use of nativehealing practices and traditional medicines and plan care in partnership with fami-lies.

Providers need to keep family caregivers updated about the child’s conditionand address concerns that arise throughout the course of the condition. Providerscan support families by providing information about the child’s condition andtreatment to all of the family members involved in the child’s care. When provid-ing information, the health care provider must be aware of the family’s culturalbackground, as differences in cultural perspectives often inhibit positive relation-ships between health care providers and families (Nelkin & Malach, 1996).

In conclusion, implementation of the principles of family-centered care in-creases the likelihood that the needs of American Indian families who care for chil-dren with chronic conditions will be addressed appropriately. Further work shouldbe done to investigate the needs of American Indian family caregivers who live inurban as well as rural settings in different regions of the country. Given the culturalvariation in health beliefs and practices among American Indian people, thegrowth and development of the child, and the changing course of the chronic con-dition, we recommend that providers focus on identifying and addressing the spe-cific needs of individual families who care for children with chronic conditions ateach clinical encounter.

ACKNOWLEDGMENTS

This study was funded by the National Institute on Disability and Rehabilitation(H133B40019).

We acknowledge the contributions that Sally Auger, Diane Rose, and JeanUmezu have made to this project.

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Documents

Urban American Indian Family Caregivers' Perceptions of the Quality of Family-Centered Care