latino foster parent health perceptions of chronic conditions: a qualitative exploration

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  • ORIGINAL PAPER

    Latino Foster Parent Health Perceptions of Chronic Conditions:A Qualitative Exploration

    Sandra H. Jee Mary Del Balso Salter

    Jacquelyn Gonka Nancy P. Chin

    Springer Science+Business Media New York 2013

    Abstract Prior work using nationally representative data

    of children in the child welfare system suggested that

    Latino foster parents were less likely to identify children in

    their care as having chronic conditions. Hispanics comprise

    over one-fifth of children in foster care, the majority of

    whom have special health care needs, and there is a

    growing need to recruit qualified Latino families into the

    child welfare system. Little is known about Latino parents

    health perceptions regarding chronic conditions, and

    potential reasons for differing identification rates of chil-

    dren with special health care needs. We conducted 17

    home-based, in-depth interviews with Latino foster parents

    to explore health perceptions and cultural beliefs for chil-

    dren in their care around the concept of chronic illness. We

    found that Latino foster parents understanding of condi-

    tions that occurred over and over again related to emo-

    tional and behavioral health problems. In contrast, their

    perception of chronic was associated with terminal,

    biological conditions that had limited treatment options,

    such as cancer, HIV, and hepatitis. Latino foster parents did

    not interpret the survey question on chronic illness as it was

    intended, and their view of recurrent conditions did not

    reflect chronic health conditions. Developing survey

    questions that are culturally sensitive should improve

    accuracy in assessing chronic health conditions for this

    high-risk population. Sensitivity to cultural interpretation

    for this high-needs population is vital to enhancing com-

    munication between families and health providers caring

    for children in foster care.

    Keywords Foster care Latino Foster parents Chronichealth condition Culture

    Introduction

    There are approximately 400,540 children in the foster care

    system (U.S. Department of Health and Human Services

    2011), the majority of whom have been neglected and/or

    abused prior to entering the system (Simms et al. 2000;

    Szilagyi 1998). Prior work has demonstrated that children

    in foster care have a high prevalence of chronic health

    issues, developmental delays, and psychiatric disorders

    (Almgren and Marcenko 2001; Chernoff et al. 1994;

    Hansen et al. 2004; Halfon et al. 1995, 2002; Pasztor et al.

    2006). Previous local and state-level analyses have esti-

    mated the prevalence of chronic conditions among children

    in foster care to be between 44 and 82 % (Jee et al.

    2006).To assess the prevalence of chronic health conditions

    of children in foster care using the first nationally repre-

    sentative sample of children in the child welfare system,

    our research group used the NSCAW (National Survey of

    Child and Adolescent Well- Being) (Jee et al. 2006). One

    key finding of this study was that compared to other ethnic

    groups Latino caregivers were significantly less likely to

    S. H. Jee (&)Division of General Pediatrics, Department of Pediatrics,

    University of Rochester, Rochester, NY 14642, USA

    e-mail: sandra_jee@urmc.rochester.edu

    M. D. B. Salter

    Solid Organ Transplant Division, Department of Surgery,

    University of Rochester, Rochester, NY 14642, USA

    J. Gonka

    Stony Brook Medical Center, Stony Brook, NY, USA

    N. P. Chin

    Department of Public Health Sciences, University of Rochester,

    Rochester, NY 14642, USA

    123

    J Child Fam Stud

    DOI 10.1007/s10826-013-9719-0

  • report caring for a child with a chronic illness. This was a

    provocative finding that received both local and national

    attention. We believe there are two possible explanations

    for this finding: (1) the NSCAW question did not correctly

    assess the presence of chronic illness among Latino

    families which the survey described as illness which

    occurred over and over again; and/or (2) Latino specific

    health perceptions and practices have a positive impact on

    the management of chronic conditions in foster children so

    they did not occur over and over again. To our knowledge,

    there was no previous published work that had examined

    Latino health perceptions and practices for this at-risk

    population of children in foster care.

    It is important to understand Latino health perceptions

    and practices, especially with respect to children in foster

    care. Latinos are not only one of the largest and fastest

    growing minority populations in the U.S., but Latino

    families have also markedly increased their rates of adop-

    tion of children in foster care (Mikhail 1994; Riche 2000;

    Flores et al. 2002). In 2004, the U.S. Department of Health

    and Human Services Administration for Children and

    Families reported that Latino families adopted nearly 5,300

    children from foster care, a jump of almost 20 % in 5 years

    (U.S. Department of Health and Human Services 2007).

    Most recent data indicates that Hispanics comprise 21 % of

    children who entered foster care in 2011, and public

    agency adoptions of Hispanic children has increased to

    15.5 % over the past decade (U.S. Department of Human

    Services 2011). The need in our current child welfare

    system for qualified Latino families who share cultural

    identity and language is exceeded by the number of Latino

    children in the system; hence, ongoing campaigns are

    actively recruiting more Latino families to become foster

    parents (Casey Foundation Leadership Group 2012).

    Latino foster parents represent a rapidly growing subset of

    caregivers in the child welfare system who have unique,

    culturally informed health perspectives that may impact their

    interpretation and management of chronic illness by seeking

    traditional methods of care (Rogers 2010). Prior work

    examining foster parent perspectives has demonstrated that

    transcultural foster care placements may impact the family

    relationships and cultural identity (Brown et al. 2009);

    moreover, the presence of disabilities or special health needs

    for children in foster care affects service needs (Brown et al.

    2005; Brown and Rodger 2009; Lauver 2008). Our goal in

    this study was to understand why Latino foster parents might

    have reported caring for fewer children with chronic diseases

    by creating a provisional explanatory model of chronic dis-

    ease management for Latino foster families. Specifically we

    sought: (1) to explore Latino foster parents perceptions of

    health; (2) to understand the Latino concept of chronic

    conditions; and 3) to assess the validity of the NSCAW

    question within the Latino population.

    Method

    Recruitment to Study

    We received a list of all Latino foster parents (n = 18) in

    our county population from our county Department of

    Human Services. We mailed recruitment letters to all

    potential participants, and then used follow up telephone

    calls to schedule home-based interviews. Latino caregivers

    who participated in the project received a $20 gift card.

    Two investigators with expertise in qualitative data

    research and Spanish language and culture, conducted the

    home interviews for this study.

    Interview Procedure

    Our research team developed a semi-structured interview

    guide to collect demographic information and to explore

    beliefs and perceptions regarding personal and foster care

    related health conditions and health management. The

    interview script covered three main domains using open-

    ended questions: (1) The caregivers personal health, (2)

    The caregivers experience and perceptions of their foster

    childrens health, and (3) The caregivers belief about

    chronic conditions. Interviews were conducted in subjects

    homes, lasted approximately 60 min, and were audio-taped

    for verbatim transcription. Researchers also took field notes

    during the interviews and asked unscripted follow-up

    probes as needed to clarify subject responses. All inter-

    views were conducted in English, although researchers

    were able to speak Spanish; if there were language barriers,

    a dictionary was available to assist the participant.

    Data Analysis

    The analytic team was comprised of two research-experi-

    enced individuals (M.A.D. and S.H.J.), with a third

    supervisory qualitative methods mentor (N.P.C.). We used

    the framework approach, using a matrix based method,

    (Ritchie and Lewis 2003), to develop open-ended questions

    for our interview guide. All data were analyzed using the

    thematic framework approach, in which analysts looked for

    common themes or patterns that fit into three domains: (1)

    Caregivers personal health; (2) Caregivers perception of

    foster child health; and (3) Caregivers understanding of

    what comprises a chronic illness. Interviews were analyzed

    separately by two independent readers (M.A.D. and S.H.J.)

    who then met together to determine themes and categorize

    data. Readers listened to audio-tapes as needed to verify

    emphasis of speech in the transcribed interviews. Dis-

    agreements were corrected through debate and review

    with the supervisory qualitative methods mentor (N.P.C.)

    to ensure reliability