Objective: In the emergent restructuring of maternal child health care in the U.S.A., it is imperative to examine marginalized consumers’ experience with health care related costs so that the process begins to meet the health care needs of diverse communities. Families of color and poor families disproportionately experience newborn intensive care. Extant research in the U.S.A. about employment and income changes and nonmedical out-of-pocket costs related to newborn intensive care has overwhelmingly reflected the experiences of primarily low-income, urban African American families and affluent Euro-American families in the Northeastern U.S.A. The purpose of this pilot study was to describe the impact of employment and income changes and nonmedical out-of-pocket costs related to newborn intensive care for Latino families in the Northwestern U.S.A. from the standpoint of the families. This information is vital to designing a transformative system of effective, comprehensive, culturally competent newborn intensive care for Latino families. Specific study aims were to identify: (1) the actual employment and income changes and nonmedical out-of-pocket costs and (2) families’ perceptions of the impact of actual employment and income changes and nonmedical out-of-pocket costs.
Design: A descriptive, exploratory design was selected for this pilot study.
Population, Sample, Setting, Years: A convenience sample of 20 Latino families was recruited from one tertiary level newborn intensive care nursery (NICU) in the Northwestern U.S.A. Mothers were the primary family informants. The majority of mothers and fathers were Spanish-speaking-only and reported varying levels of literacy in Spanish and/or English. Nativity of the parents was diverse with the majority from Mexico. A heterogeneous sample of twelve babies hospitalized for prematurity and eight full-term babies hospitalized for problems such as sepsis facilitated examination of the plurality of the phenomena under study. The babies’ mean length of stay in the study NICU was 24 days (SD=24.5). The period of data collection was March 1997 through March 1998.
Concepts: The three specific economic factors studied were employment, income, and nonreimbursable, nonmedical out-of-pocket costs which included parents’ perceptions of the impact of these factors. Parental employment included employment status, job title, and number of actual hours worked during the NICU hospitalization. Family income included all sources of parental income. Nonmedical out-of-pocket NICU costs included means and cost for transportation, food, child care, telephone and guest housing. Parental perceptions were conceptualized as mothers’ evaluations of how the economic changes resulting from having a baby requiring newborn intensive care affected their NICU experience and family.
Methods: Mothers participated in face-to-face interviews at the end of their babies’ NICU hospitalization. An open-ended interview guide was developed for this study. Health care professionals of Hispanic heritage specializing in working with populations of Spanish-speaking-only families verified the cultural appropriateness of the interview guide. Interviews were conducted in Spanish by a research assistant whose primary language was Spanish. Participant responses were written verbatim by the research assistant. Training and debriefing sessions conducted between the primary researcher and research assistant throughout the study ensured reliability and consistency and accuracy in data collection procedures. Descriptive statistics and qualitative analysis were used to analyze the data.
Findings: The majority of mothers (N=15) and fathers (N=11) were employed prior to the pregnancy and/or NICU hospitalization. Many mothers described the lost employment and income and nonmedical out-of-pocket costs during the NICU hospitalization as an extension of a downward spiraling of lost economic resources during the pregnancy which averaged 19% of their annual income. Families’ total nonreimbursable, nonmedical, out-of-pocket costs during the NICU hospitalization varied widely, with an average cost of $368.00 (SD=370.00). Transportation was the major expense; however, food vouchers provided by the NICU offset food costs. Four themes predominated in mothers’ perceptions of the impact of the economic factors on their NICU experience and family: (1) compromised access to their babies resulting from families’ limited financial and transportation resources; (2) limited social support due to geographic dislocation from family and friends; (3) inadequate availability of interpreters in the NICU which prevented utilization of nursery-based support services; and (4) compromised maternal nutrition because of increased food costs.
Conclusions: Gaps in health care services were identified for these Latino families who had diverse economic resources.
Implications: Data on employment and income changes and nonmedical out-of-pocket costs are vital to developing and implementing comprehensive newborn intensive care services that facilitate families' access to their babies and promote family health in concert with minimizing families’ cost burdens. Such data needs to be an integral component of family assessments. Further research in this area from the standpoint of the families is needed.
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