Healthy Start Program Participation: The Consumers' Perspective

Abstract

In 1991, the federal Maternal and Child Health Bureau developed the Healthy Start Initiative as a comprehensive community-based program to eliminate the high rates of poor pregnancy outcomes among women of color. To date, few studies of the programmatic outcomes of this Initiative have examined the views of Healthy Start consumers. To understand the benefits of Healthy Start from their consumers' perspective, the Pittsburgh Allegheny County Healthy Start project conducted a survey of 202 of their Healthy Start participants in 2003. The participants completing the survey reported benefits of participating in the program including stress reduction, receiving resources and referrals, and consistent social support of program staff. According to the project's annual statistics, Healthy Start has improved pregnancy outcomes among African American women participants in the Pittsburgh community. However, and according to these participants, the quality of staff and consumer connectedness, availability and consistency of material resources, and social support are as critical as more traditional health interventions to their satisfaction, motivation to participate, and willingness to refer others to the program. Women of color will often forego health services perceived as intimidating and/or culturally insensitive, but programs such as the Healthy Start Initiative offer a critical link that encourages participation and, as a result, improves maternal and child health status.

KEYWORDS:

• Healthy Start Initiative
• consumer perspective
• African American women
• health disparities
• prenatal care

INTRODUCTION

The rate of low birth weight among African American infants (Centers for Disease Control and Prevention [CDC], 2005) rivals that of children from countries characterized by long-standing poverty and frequent civil unrest such as Honduras, El Salvador, and Uganda (United Nations, 2004). African American women are twice as likely to have a preterm birth as white Americans (U. S. Department of Health and Human Services [DHHS], 2005). This disparity is not anomalous but rather the norm wherein many significant health conditions are concerned. African Americans experience a health risk double that of their White counterparts for illnesses such as diabetes, cardiac disease, and HIV/AIDS, among others (CDC, 2005; Copeland, 2005). The isolation and poverty of the low-income communities in which many African American families live are often the political, economic, and social products of racism and discrimination. These communities, geographic and social “islands” with persistent poverty, less access to education, employment, and health care than the majority population are in many respects like those less of economically developed nations that also have high rates of poor infant health (United Nations, 2004).

LITERATURE REVIEW

As Hogan and Ferre (2001) reflect, to eliminate disparities in infant mortality, we must first understand the social context of the lives of African American women. First, low-income African American women often begin pregnancies in health conditions much worse than other groups (Geronimus, 1996); for example, they have higher rates of many chronic health diseases including, hypertension, obesity, and diabetes. These conditions that adversely affect both maternal and infant health (CDC, 2005) are more likely to precipitate potentially avoidable maternity complications (e.g., prenatal hospitalizations; Laditka et al., 2005) and are risk factors for African American women having the worst maternal outcomes of all U.S. populations (Shen, Tymkow, & MacMullen, 2005). Second, low income African American women have often had inadequate health care throughout their lives owing to their higher risk of being uninsured (American College of Obstetricians and Gynecologists [ACOG], 2004) and lacking a usual source of health care. Health insurance coverage provides access to care in general but, during pregnancy, adequate prenatal care is critical to positive pregnancy outcomes (Vintzileos et al., 2002). Third, the cumulative impact of the “life course” of many African American women has the net result of fewer material resources, worse housing, less education, and poorer health status during pregnancy (Lu & Halfon, 2003) and their reproductive years. The psychological impact of the cumulative effects of socioeconomic status, racial discrimination, stress, housing, and neighborhood conditions also contributes to poor pregnancy outcomes (deWeerth & Buitelaar, 2005; Dominguez, Schetter, Mancuso, Rini, & Hobel, 2005; Mancuso et al., 2004). Finally, racism and discrimination create environmental disparities and the need for “environmental justice” for communities with high crime, increased exposure to chemicals and toxic substances, and low access to transportation, food stores, and health and education services (Gee & Payne-Sturges, 2004). Recognizing that eliminating racial disparities in infant mortality required developing a more innovative approach using an ecological model, in 1991 the federal government developed the National Healthy Start Initiative to

•	recognize the community and environmental impact on poor pregnancy outcomes;
•	address the inaccessibility of health care systems for low income African American pregnant women;
•	acknowledge the short-term and fragmented services for pediatric and prenatal care;
•	serve the more extensive health care needs of a prenatal population with a “high risk” for adverse pregnancy outcomes owing to unrecognized and/or untreated health problems; and
•	involve community members and program participants in a collaborative effort to improve health services for low income pregnant women and their infants (de la Cruz & Badura 2003).

When Healthy Start was initiated, infant death rates in the African American community were twice the rate of white infants (CDC, 1993). This national program was a strategy designed to intervene by having communities themselves develop appropriate strategies to attack the causes of infant mortality and low birth weight among high risk populations (Thompson, Minkler, Bell, Rose, & Butler, 2003). The Healthy Start program offers an opportunity for community members to have a voice, provide leadership, and develop collaborative relationships between participants and community leaders. This initiative empowered communities through their leadership and development of competencies for a system-wide effort that promotes equity in access and availability of maternal and child health services. From an organizational perspective, the program reduced barriers to care that were brought on by culturally insensitive health care system; low rates of insurance coverage; inadequate education and knowledge of services available in the community; patient-provider communication problems; and untreated behavioral health problems such as anxiety and depression. The Healthy Start program intervention consists of multi-level community and case management strategies with a long-term approach toward community building and empowerment as the key guiding principles.

THE HEALTHY START MODEL

In 1991, the Health Resources and Services Administration (HRSA) of the U. S. Department of Health and Human Services (DHHS) began the Healthy Start Initiative by funding 15 urban and rural sites in communities with infant mortality rates 1.5 to 2.5 times the national average. For example, the rates for African American (AA) infant mortality in 1986 and 1993 as compared to white (W) infants in 1986 were 8.9 (W) and 18.0 (AA) deaths per 1,000 live births and, in 1993, were 8.4 (W) as compared to 16.5 (AA) deaths per 1,000 live births (CDC, 1993, 1986). The program began with a 5-year demonstration phase to identify and develop community-based approaches to reduce infant mortality by 50% over the 5-year period and to improve the health and well-being of women, infants, children, and their families (de la Cruz and Badura, 2003). Presently, there are 96 federally funded Healthy Start projects in 37 states and the District of Columbia and Puerto Rico. The primary focus of Healthy Start now is to eliminate perinatal health disparities.

The fact that low-income women of color continue to have enormously disparate rates of infant mortality and preterm births continues to pose a major public health issue for the United States. The rate of low-birth-weight infants born to poor African American women can be decreased through health education and health promotion strategies that can facilitate behavior change in women who are at risk for poor pregnancy outcomes (Korenbrot, Wong, & Stewart, 2005; Willis et al., 2004). Primary and secondary intervention strategies at the community level can make a difference (Howell et al., 2005). As the major federally funded community-based infant mortality reduction program, Healthy Start is in a position to foster these changes.

The common principles underlying the Healthy Start Initiative are innovations in service delivery, community commitment and involvement, personal responsibility, integration of health and social services, multi-agency participation, increased access to health care services, and public education. The program address multiple issues, such as providing adequate prenatal care, promoting positive prenatal health behaviors, meeting basic needs (e.g., nutrition, housing, psychosocial support), reducing barriers to access, and enabling participant empowerment (National Healthy Start Association, 2005).

The Pittsburgh Allegheny County Healthy Start project has operated since 1991 as one of the original Healthy Start Initiative grantees and is community-driven with services for families in the poorest neighborhoods in Allegheny County. More than 85% of all Healthy Start families in Pittsburgh Allegheny County Healthy Start project are African American. The “typical” Pittsburgh Allegheny County Healthy Start project pregnant or postpartum participant according to the 2003 project data was African American, never married, enrolled in Medicaid, a high school dropout, unemployed, or had not been in the labor force. Women enrolled in Healthy Start typically had two or more children and previously experienced a poor pregnancy outcome (e.g., low birth weight, preterm birth).

The case management model in Healthy Start begins with an initial assessment of participants' health and social service needs, interests, and risk factors. The participant and Healthy Start staff collaboratively developed a plan of care. The plan of care serves as a guide to achieving a high sense of self-worth for participants and the ability to take personal responsibility for their own well-being. The plan of care also involves assessment of participant problems with housing, transportation, nutrition, and child care; case management includes referrals for community resources that deliver these services. Case management includes regularly scheduled reassessments of the participant's needs and progress. Healthy Start's outreach and home visiting model are the most effective strategies for reaching the most at-risk women. Healthy Start also uses the approach of recruiting and employing qualified community residents as outreach workers and home visitors to facilitate the delivery of culturally competent services and, simultaneously reduce social barriers to care. A primary mission of Healthy Start is assisting women so that they receive prenatal care as early in the pregnancy as possible, as it is generally accepted by the medical and research community that early entrance into prenatal care is a critical factor in improving birth outcomes (see for example, Laditka et al., 2005; Nason, Alexander, Pass, & Bolland, 2003; Vintzileos et al., 2002). Having community residents in the role of outreach workers makes it easier to introduce participants to the effectiveness of early prenatal care for their pregnancy and the health of their unborn infant. Every Healthy Start project must have a consortium composed of neighborhood residents, consumers, participants, medical providers, social service agencies, clergy, business representatives, and other key community leaders. This facilitates a collaborative process whereby both the Healthy Start project and the whole community are committed to the fight to reduce infant mortality.

The objective of all Healthy Start service projects is to continuously enhance participant self-efficacy with the goal of social and economic independence. The Healthy Start program model has been effective in achieving many positive health status outcomes including increased early entry into prenatal care with a reduction in the number of preterm births. However, participation in the program is voluntary; therefore, perceptions of the possible benefits of enrollment in Healthy Start by potential participants are critical to determining the most effective and consumer-friendly approaches to case management.

The aim of this study was to describe the perceptions of participants in the Pittsburgh Allegheny County Healthy Start project as they defined and viewed the benefits of the services received. Although the federal Healthy Start Initiative has been operational for more than 15 years and has been effective in reducing infant mortality among those families using its services, the research studies have described the program model, services, and outcomes (see, for example, Lane et al., 2001; McCormick et al., 2001; Pistella & Synkewecz, 1999; Thompson et al., 2003). However, there is a critical need to hear the voices of families who use Healthy Start; to our knowledge, no previous publications address the perceptions of participants regarding the benefits of Healthy Start services and their reasons for participating and referring other families to the program. This study uses a mixed-methods design of both quantitative and qualitative data to report the perceptions from the participants.

METHODS

The purpose of the survey was to assess participant satisfaction with the Pittsburgh Allegheny County Healthy Start project services. The Pittsburgh Allegheny County Healthy Start project evaluation team, which included social workers (including the senior author) and Healthy Start staff, used a four-tiered approach to complete the study. First, the Healthy Start Board of Directors, which is community-driven and includes representatives and consumers, requested that a survey of consumer satisfaction and suggestions be developed and administered to the Healthy Start project participants. Second, the evaluators, Healthy Start case managers, and administrators worked together as a team and developed a draft set of items and determined the length and general format of the questionnaire and the data collection methods. The guidelines for the evaluators were to create a questionnaire that

•	used words and terms familiar to the participants,
•	would be a brief instrument,
•	requested the minimum amount of personal information, and
•	would be appropriate for all respondents including those who were adolescents or functional at a low literacy level. (Note: More than 95% of the Pittsburgh/Allegheny County community is English-speaking, so language barriers are handled on a case-by-case basis for families.)

After several meetings, the evaluators, Healthy Start case managers, and administrators reached a consensus on the draft questionnaire and data collection strategies. The third step was most crucial as the evaluation team met frequently with both the Healthy Start project staff providing direct services and the residents of the Healthy Start project communities. As a result, participants and the staff spent several hours with the evaluators suggesting changes in language, additional items, further clarification, and simplification of the questionnaire. After the suggested changes were in place, the questionnaire was reviewed and approved by the Quality Assurance Committee of the Pittsburgh Allegheny County Healthy Start Board of Directors for distribution to the participants.

The survey questionnaire covered the following areas:

1.	Use of Healthy Start project services (yes/no) and satisfaction (excellent, good, fair, poor)
2.	Use of referrals (yes/no) and satisfaction (excellent, good, fair, poor)
3.	Benefits of Healthy Start (list and open-ended option)
4.	Refer others to Healthy Start (yes/no)
5.	Reasons for referral to Healthy Start (open-ended; Tables 1 to 3).

As Healthy Start requested maximum anonymity for the participants, demographic items were limited to age (younger than 18 and 18 and older); race/ethnicity; zip-code; and neighborhood. The sample was composed of the 2003 program year participants, and data were collected from October to December 2003. The survey was anonymous, with no tracking or individual identifying information for follow-up. A packet comprising a letter requesting completion of survey, the questionnaire, and a self-addressed stamped envelope was mailed to the 1,000 persons in the sample. An evaluation staff person was available to assist with completing the questionnaire. Follow-up methods involved phone calls and general announcements to staff to encourage participation. All questionnaires were returned to the local health department office. The analysis consisted of a review of the descriptive statistics for the quantitative variables using the SPSS package. The authors completed an analysis of the qualitative data consisting of a review of the open-ended responses and comments and grouping them according to the themes of the benefits of participation.

TABLE 1 Use and Satisfaction of Healthy Start Participants With Selected Services (n = 202)

Service	Use of service (%)	Users (n)	Users rating services “excellent/good” (%)
Home visiting	92	185	90
Helpline	47	95	84
Breastfeeding helpline	36	73	81
Male programs	24	48	63

TABLE 2 Use and Satisfaction of Healthy Start Participants With Selected Referral Services (n = 202)

Referral source	Use of service (%)	Users (n)	Users rating referral source as “excellent/good” (%)
Parenting education	59	119	91
Family planning	52	105	94
Child care	35	71	86
WIC/nutrition	68	137	99
Emergency assistance	64	129	88
Transportation	54	109	83
Housing	41	83	79
GED/education	27	55	83
Job training/employment	24	48	78
Smoking cessation	29	58	77
Postpartum depression	32	65	83

RESULTS

Participants

The response rate was 20%, with a total of 202 respondents. Seventy-four percent identified themselves as African American, 18% White, and an additional 8% identifying being of two or more racial or ethnic groups, including American Indian, African American, Hispanic, and White. The majority (74%) were adults 18 years and older. A review of the zip codes and neighborhoods that were reported by respondents showed that all service areas of the Healthy Start project were represented by the respondent data. The demographic characteristics of the respondent participant group were comparable to the 2003 Healthy Start project total participant data for age group, race, and neighborhood/zip code.

TABLE 3 Healthy Start Participant Reporting of Program Benefits: “Which of the following do you believe were the benefits of the Healthy Start services?” (n = 202)

Benefit	Participants selecting benefit (n)	Participants selecting benefit (%)
Reduce my stress and worries	103	51
Reduce my financial hardships	51	25
Help me with my family problems	73	36
Help me with my baby	133	66
I learned more about services for me and for my baby.	129	64
I learned more about taking care of my baby and other children and me.	95	47

Use of and Satisfaction With Healthy Start Services

The case management services are delivered with a home-visiting program and by phone contacts. Home visits offer health education, social support, counseling, identification of day-to-day problems, and referrals to community services agencies and/or the Healthy Start project. As shown in Table 1, 94% of the respondents had used home visiting services. The majority of the respondents rated their satisfaction with services as “excellent” or “good.” Healthy Start respondents also used a wide array of referral services, as noted in Table 2, with 50% or more stating that they had used five referral sources: parenting education, family planning, WIC/nutrition services, emergency assistance, and transportation. Satisfaction with these services was very high, ranging from 99% (WIC) to 83% (transportation).

Referrals to the Healthy Start program of friends, family, and other pregnant women by currently enrolled participants are benchmarks of consumer satisfaction. Fifty-four percent of the women participating in the survey reported that they had referred a family member, friend, or neighbor to the Pittsburgh Allegheny County Healthy Start project. Ninety-five percent reported that they would refer someone to the Pittsburgh Allegheny County Healthy Start project. Of the 202 respondents, 141 also completed open-ended responses for reasons for referral; 8% of these responses suggested that the reason for referral was the access to a positive support system for mothers, families, and parents offered by the Healthy Start staff; 17% described the referrals and emergency assistance; and 12% reported the education on child care, women's health, and parenting as a reason to refer to the Healthy Start project.

Benefits of Healthy Start Services

As shown in Table 3, the majority of the respondents also reported that the principal benefits of Healthy Start services were social support (“reduce my stress and worries” and “help me with my baby”) and resources (“learned more about services”). The following comments were provided by the participants in this study.

Social support

The majority (51%) of the participants reported that reducing stress and worries was a program benefit of Healthy Start. Several participants referred to their pregnancy and postpartum periods as their “time of need”:

They were there in my time of need. They helped ease my mind when my baby was in the hospital. They helped me to have peace of mind when the odds were against her (African American adult).

They are very helpful with my needs that I cannot do on my own (AA adult).

Other mothers described their social isolation and the benefit of being a Healthy Start participant:

Healthy Start was good for someone to talk to when no one else is around for you after your baby is born (AA adult).

I enjoyed having someone to talk to that understood what I was going through (AA adult).

Younger mothers described their fears and the help of Healthy Start staff:

Healthy Start is very helpful to teen mothers. Being a mother is scary sometimes and they helped lessen my fears (AA teenager).

Most important to me is how my (Healthy Start) worker is always there for me to talk to. She helps me with my baby issues and encourages me to finish high school and go to college (AA teenager).

The benefit of the ongoing support of the Healthy Start program was summarized as follows:

Just having someone to talk to and listen to your problem (AA adult).

They are there when you need them (AA teenager).

Healthy Start was very helpful,answered my questions and relieves normal stress (AA teenager).

Home visiting and child development

Sixty-six percent reported the help with their baby as a benefit of the Healthy Start program:

I love the way they [Healthy Start] come to the house (AA adult).

It's a very good program. If you cannot get out, they will come to your home. I got a new crib and they also help me with a lot of questions about my baby and me (AA adult).

The sense of being able to depend on the support of the staff was described as follows:

They (Healthy Start) did very good with me and my children (AA adult).

The mothers also discussed the concern and patience they attribute to the Healthy Start staff:

Having my first child there were a lot things I did not know and they helped me to understand (AA adult).

They (Healthy Start) were really concerned about me and my newborn baby and I really like that about services (AA teenager).

Nearly half of the respondents (47%) reported learning how to take care of their child and themselves as a benefit of the Healthy Start program. Education for younger mothers and those with their first child were specifically described:

Healthy Start helps a lot of young mothers that never had to deal with babies learn things they need to know (AA adult).

I think it is a good program for young mothers to know what to do with young kids (AA teenager).

Having someone to explain and discuss the basic issues of child development and the skills needed to care for a new baby was important:

It's (Healthy Start) a good way to learn why your baby needs so much attention and care they need (AA adult).

They showed me a lot like waking up in the middle of the night to feed your child (AA adult).

Parents also described the value of the support they received for their child's health services and parenting skills:

It (Healthy Start) shows how to be a better parent to your child, helps with your problems (AA adult).

It (Healthy Start) helped me out a lot and I have learned to be a better caregiver for my children (AA adult).

Healthy Start I believe is a crucial service to raising happy healthy kids (AA adult).

According to 64%, learning about resources and obtaining services for themselves and their children was an important program benefit:

They were very helpful with my needs that cannot do on my own (AA adult).

I learned how to spot the programs with the best help for moms (AA adult).

Financial stress and family problems

More than one-third (36%) also identified help with their family problems:

If people need help with their families and their children they (Healthy Start) are the best people to come to for help (AA, White adult).

I think anyone who is having a baby or has kids should join the program (Healthy Start). It's helpful and they are always there for you (AA teenager).

They described the benefits of participation for the entire family:

They help (put) your family on a positive path (AA adult).

Healthy Start is a wonderful program for mother and baby as well as the fathers. They have a program for the fathers; they may need a little push (AA adult).

The program every family will benefit from; if you need someone to talk to, if you need help, if you have concern, etc. (AA adult).

Although the Healthy Start project does not provide financial support, offering the array of services in the home and information and referrals to community resources are benefits for families with financial hardships:

They (Healthy Start) get involved with your family when it's hard times (AA adult).

They (Healthy Start) are a good help when you don't have anything (AA adult).

Healthy Start helps women in need. They provide things that you can't get on your own (AA teenager).

Parents appreciated Healthy Start's assistance in getting resources for their baby:

Having a child is quite expensive. They help you get everything you can at low or no cost (AA adult).

It (Healthy Start) helps you and your baby and they help you get stuff for your baby (AA teenager).

One parent described the importance of receiving assistance when the family was having financial problems:

Everyone should get all the help they need and never be ashamed that things are hard because everyone has hard times and always get the help they need (AA adult).

DISCUSSION

The Pittsburgh Allegheny County Healthy Start project is a comprehensive maternal and child health community-based program that facilitates positive health outcomes for pregnant and postpartum women and their babies from birth to the second birthday. The community-based case management model in Pittsburgh provides services with a multidimensional assessment for an array of health and health-related needs. These services address both the instrumental and material supportive needs of women and their infants. The need for support services, information about, and referrals to appropriate community programs are extensive for women eligible for the Healthy Start program.

The primary benefit of the program, according to these women, was not consistent with the initial design for the national/overall Healthy Start Initiative. As a national initiative, Healthy Start was designed to decrease infant mortality rates that were at least 1.5 times the national average in the original 15 demonstration sites (Thompson et al., 2003). Instead, the process by which support services were provided was viewed as the primary benefit for our participants. From one perspective, the women in this program identified the means by which the services were provided as a benefit of the program. However, the process of care and the “connectedness” that women expressed as a benefit were pivotal to families seeking services, accepting and utilizing case management, and referring other families to Healthy Start. The positive outcomes in reduced preterm birth and early entry into prenatal care have helped to reduce infant mortality for women living in Pittsburgh communities that are at risk for poor pregnancy outcomes.

Participants in this study identified the relationships and connectedness with the Healthy Start program staff as the primary support network for their immediate family. These women felt empowered from the practical knowledge they acquired in the program. From their perspective, acquiring knowledge about (1) community resources for their infant, (2) parenting skills, and (3) child development were the benefits of their participation. The knowledge acquired about child development was especially important for first-time and/or young adolescent mothers.

The preceding findings support the importance of a social ecological or “multi-level” (Hogan & Ferre, 2001) perspective emphasizing social support (Korenbrot et al., 2005), cultural competency, and attention to the process by which care is provided (Copeland, Scholle, & Binko, 2003) as appropriate when working with African American women. Understanding and addressing the social, psychological, and health care needs of young mothers with children was identified as extremely important by the Healthy Start project participants.

Programs such as the Pittsburgh Allegheny County Healthy Start project, which focus on the whole person and provide comprehensive social and behavioral health services, appear to meet the needs as expressed by the consumers/program participants. As shown by the findings in this study, participants value the duration and consistency of social support, access to a primary advocate, and an interdisciplinary team of experts to provide the array of services, information, and material goods for their family, as needed. A comprehensive maternal and child health program such as Healthy Start can facilitate and ensure access to needed health, education, and support services for young families. These services are integral to the health care system in most “developed” nations of the world, and such programs are noted by their low infant mortality and preterm birth rates (United Nations, 2004).

Implications for Social Work Practice

Social workers have an important role to play in reducing the racial disparities in infant health. The health status of pregnant women who are at risk for poor pregnancy outcomes and who meet the eligibility standard for Healthy Start is influenced by a range of social and economic barriers to health care services. Social work is dedicated to both micro- and macro-level interventions required when examining the health of populations at risk. To help families navigate the fragmented systems of health and human services, practice roles such as advocacy, case management, system development, education, and coordination of services are essential. Although designed for participating mother and infant, the interpersonal support for mother, father, and family during pregnancy and after birth by Healthy Start staff, according to the women surveyed, was crucial.

The interpersonal consistency of the Healthy Start staff is a key benefit of the Pittsburgh program. The participants' personal growth, which is facilitated by the interpersonal relationship between the Healthy Start interdisciplinary team and the Healthy Start participants, was noted by the participants themselves. They felt that the Healthy Start staff listened, provided ongoing support for their parenting needs, and created learning opportunities for teaching young mothers about infant care and parenting. The working relationship between the women participating in the project and the staff is a collaborative effort.

The Healthy Start staff's response to participants' needs, from the participants' perspective, is a priority. A genuine partnership between the women and their team of workers is observable. Clearly, the process by which care is provided was central to participation in the program and utilization of services provided by the program (Copeland & Scholle, 2000). Both direct and indirect interventions are required for effective intervention when working with this community-based program. The case management aims to be comprehensive for behavioral and physical health, housing, child care, health promotion, and other needs.

Limitations of Study

This study was not conducted to be generalizable to all Healthy Start projects within the national Healthy Start Initiative. The Healthy Start Initiative is based on the premise that “communities themselves could best develop the strategies necessary to attack the causes of infant mortality and low birth weight, especially among high risk populations” (Badura, 1999, p. 263, as cited in Thompson et al., 2003, p. 186). The organizations that administer Healthy Start projects as community-based programs attempt to address the unique needs of the individual communities they serve. Therefore, generalizability is not appropriate for research conducted on a single Healthy Start project. This study represents a single Healthy Start project and the access and availability of health services care for pregnant women and infants and children within the community of study. The aim of this study was to provide a consumer perspective of the extent to which the local Healthy Start project is meeting their needs.

These findings reflect the attributes of a single centralized Healthy Start project that uses its own employees to provide case management, including direct services offered within the home and community. The Pittsburgh Allegheny County Healthy Start project model promotes continuity of care from pregnancy until the second birthday of the infant. It involves uniform staff supervision, training, and education and a common set of performance standards and protocols for case management for all participants. Although all grantees receiving federal Healthy Start funds must provide the same array of services to pregnant and postpartum women, partners, and infants, projects are able to use the organizational structure that is most feasible for their community with different service delivery models than the ones used by the Pittsburgh Allegheny County Healthy Start project. Having available access to medical services within the Pittsburgh community did not appear to be the primary reason for the women participating in the Health Start project. In most cases, there is ready access to services for prenatal, postpartum, and pediatric care for lower-income families in the study community. The instrumental support that occurred through the informality of the professional relationships was a major reason for continual participation. As with other consumer-based research studies that address issues of satisfaction with services, the work represents consumers who remained in the program, and the response rate of 20% also limits the generalizability of the findings.

CONCLUSIONS

Though many communities have an array of medical and social services for pregnant women and their infants, families must want to enroll in these programs, stay in them, and refer others. The findings show that many women of color are likely to avoid these services rather than to introduce themselves into what they perceive as a culturally foreign or intimidating environment of mainstream and conventional health care. As such, a community-based program operated by outreach workers of a similar demographic background may be one of the most critical factors in encouraging at-risk women to participate in health care programs and experience the benefits of maternal and child health (de la Cruz & Badura, 2003; National Healthy Start Association, 2005). The community-based health care process produces secondary effects (referrals, spread of knowledge throughout the community, increased trust of health care providers, and increased independence and empowerment of the consumer) that may not be immediately realized but are evident over time and are much greater than the sum of the objective results of the reduction in infant mortality and preterm births as they impact the health of several generations.

Though trends in maternal and infant health for African Americans are showing some improvements (Anath, Joseph, Oyelese, Demissie, & Vintzileos, 2005; Howell, Pettie, & Kingsley, 2005) and comprehensive programs to address the racial disparities in prenatal and infant health are effective (Nason et al., 2003; Willis et al., 2004), health disparities remain high. To make an effective contribution to eliminating disparities in infant mortality, social workers need to continue to increase their community outreach efforts, connect with warmth and respect when delivering culturally sensitive services that meet the unique needs of each family, and “stay the course” with African American women as they become pregnant and parent their children.

Notes

Healthy Start, Inc. is supported in part by CFDA Grant Number 93.926E from the Healthy Start Initiative; the Division of Perinatal Systems and Women's Health; the Maternal and Child Health Bureau; the Health Resources and Services Administration; and the U. S. Department of Health and Human Services. We acknowledge support from the EXPORT Health Project at the Center for Minority Health, Graduate School of Public Health, University of Pittsburgh, NIH/NCMHD Grant No. P60 MD-000-207-02.