Transcript

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 � Chronic

health 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: [email protected]

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 Service’s 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 caregiver’s personal health, (2)

The caregiver’s experience and perceptions of their foster

children’s health, and (3) The caregiver’s 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)

Caregiver’s personal health; (2) Caregiver’s perception of

foster child health; and (3) Caregiver’s 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 of analyses. We used constant

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comparison to check that each coded item. (Pope et al.

2000). New sub-domains were added to the above frame-

work as a result of several validation meetings. Some

disagreements in domain categorization brought up the

issue of inappropriate categorization for certain themes.

New themes were established, which allowed for the

addition of two new domains; role of religious faith and

cultural practices related to home remedies impacting

health perceptions.

A cross classification matrix, using a thematic frame-

work approach (Ritchie and Lewis 2003), allowed for

further examination of how all five domains relate, and

helped to organize the data into key themes, concepts, and

emergent categories. It was determined that many domains

were interrelated and potentially sequential. For example,

view of health and wellness can be understood in terms of

its influence on behavioral health status and holistic view

of the child, and chronic health conditions can be under-

stood in terms of a foster parent’s past experience with

managing complex health problems for themselves and for

others. Closer examination of domains called for re-cate-

gorization that would better reflect these main themes and

the interdependent process. As a result, all new domains

were identified to reflect the themes that became evident

after the initial coding and analysis of data. We recoded all

the transcripts according to these new themes. The fol-

lowing analysis reflects this final coding.

Results

Participant Demographics

We contacted the entire population of registered Latino

foster parents who were in the Monroe County’s foster

system at the time of the study. Our study sample included

17 out of the 18 Latino foster parents in the county. The

home interviews lasted approximately 60 min each. Study

participants (see Table 1) ranged in age from 30 to

66 years old. The majority of the parents were female, born

in Puerto Rico, and many contained a high school educa-

tion or less. The length of time of being a foster parent

ranged from 9 months to 26 years.

Results from these interviews can be classified into the

following domains: (1) View of health status for self and

child; (2) Holistic view of health, including behavioral

health status; (3) View of a chronic condition as a health

problem that is incurable; (4) Divine power impact on

health and cultural influences on health; and, (5) Latino

emphasis on creating a nurturing family environment. An

explanatory model of chronic disease management for

Latino families is noted in Figure 1. Select quotes from

transcripts are noted in Table 2.

View of Health Status for Self and Child Related

to a Symbiotic Experience of Maintaining Health

Many Latino foster parents who were mature in age, and

who had already raised their own birth children, expressed

that having children in their care had a positive impact on

their own health status, because having young children kept

Table 1 Study participant demographics

Average age 47.6 years

Ethnicity

Dominicans 2

Cubans 3

Puerto Ricans 12

Gender

Males 3

Females 14

Average number of years in U.S. 28 years

Education

High school or below 12

Some college or higher 5

Marital status

Single 3

Divorced 4

Married 10

Average number of years as a foster parent 7 years

Average number of biological children 2

Latino Culture Health Belief

Perception of Health and WellnessCaregiver

Personal Health

Caregiver Experience and Perception of Foster Children’s Health

Belief and Understanding of Chronic Conditions Perspectives on Behavioral Health

Holistic View of the ChildDesire to Nurture Child

Role of Religious FaithHome Remedies

Fig. 1 Explanatory model of chronic disease management for Latino

foster families

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them young and active. (‘‘I take care of myself and I can

have many years healthy … Really I take care of myself I

always watch what I eat…I want to stay healthy and strong

for the children.’’ Marisol, a 53 year-old Puerto Rican).

Holistic View of Health, Including Behavioral Health

for Children who had Experienced Trauma and Abuse

We sought to understand Latino foster parents’ perceptions

of what comprised a healthy child, and they categorized

this into three main categories: physical appearance,

child’s behavior, and child’s emotional well-being. Physi-

cal assessments of a healthy child were mostly based on the

skin’s appearance and the relative weight of the child.

Children who are healthy are considered to ‘‘glow’’ or have

‘‘shiny skin’’ and are ‘‘not skinny, not fat, not overweight.’’

(See Table 2) Further, Latino foster parents valued positive

child behavior and emotional stability as key components

of health. They praised children who were affectionate,

personable, and respectful of family rules and expectations.

These foster parents defined healthy children as those who

were emotionally stable, free from depressive symptoms,

and those who were not impaired by family dysfunction.

View of Chronic Condition as a Health Problem that is

Incurable or Terminal

We asked two questions to elicit a deeper understanding of

foster parents’ perceptions of chronic conditions. We used

the NSCAW question (‘‘Has your child experienced a

health condition that kept coming back again and again?’’)

to test Latino responses to this survey question, and we

followed this with our own interview questions whether

their child had experienced a chronic condition or health

problem. Results yielded dramatically different findings,

demonstrating that there may be some differences in

interpretation of the survey question versus in-depth

exploration of chronic conditions. The NSCAW survey

question elicited responses that centered on emotional and

behavioral issues such as ‘‘bedwetting,’’ ‘‘lying’’ and

Table 2 Qualitative responses about Latino foster parent perceptions of health, chronic conditions, and cultural influences

A healthy child manifests physical signs of wellness, positive prosocial behavior, and emotional stability

Physical appearance 51 year old Puerto Rican: ‘‘A healthy child you can tell by the glow, children that are not healthy are just

like, there is nothing there…so I think the glow and if I go by my kids, I like how they interact with

other people, stuff like that…to me that’s healthy … social skills … it all connects together’’

65 year old Puerto Rican: ‘‘Healthy means proportionate weight… Health can be seen in the reflection of

the face’’

Healthy child behavior 35 year old Cuban: ‘‘A healthy child don’t get lonely, plays a lot laughs a lot, listens well’’

34 year old Puerto Rican: ‘‘You can tell if a child is healthy or not, by the way they act’’ and if they are

playful, rambunctious, and spirited

Emotional well-being 35 year old Cuban: ‘‘A healthy kid don’t feel depression or scared of somebody’’

55 year old Puerto Rican: ‘‘Personally, a happy child is a healthy child’’

A chronic condition is incurable, a terminal illness, and requires medication

View of medical condition 35 year old Cuban: ‘‘is something that don’t heal you live with it… Things like asthma, diabetes,

thyroid’’

41 year old Puerto Rican: ‘‘is something along the lines of cancer, hepatitis, tuberculosis’’

Medication 30 year old Cuban: ‘‘Chronic illness is like cancer that needs care… needs much medication’’

Chronicity 51 year old Puerto Rican: ‘‘Something chronic is something that keeps repeating… And I guess diabetes

would be, but I don’t know, it’s hard to describe… I think I’m over thinking this because I’m thinking

it’s more terminal instead of repetitive… Because chronic really means repetitive’’

Divine influence and cultural influences on health perspectives

Role of faith in caregiver’s

perception of health

52 year old Dominican: ‘‘If I feel okay, praise the Lord’’

49 year old Puerto Rican: ‘‘I don’t know, it depends on God’’

Use of home remedies 34 year old Cuban: ‘‘I don’t know the whole history from when they was a baby, I don’t know if they are

going to have allergy or something… in our country, we give medication in the home, and it helped a

lot, but I don’t know how they will respond {to the home remedy}’’

49 year old Puerto Rican: ‘‘I continue to use home remedies and don’t tell the doctors because they won’t

understand me’’

Motivation to provide a nurturing family environment

Desire to nurture 35 year old Cuban: ‘‘A child needs love, affection, and attention and I want to help and give those

sentiments to them.’’

60 year old Puerto Rican: ‘‘wants to give back to the community and wanted to be caring mother’’

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‘‘depression.’’ Our interview question using the word

‘‘chronic’’ brought forth answers that defined ‘‘cancer,’’

‘‘HIV,’’ and ‘‘tuberculosis’’ as chronic conditions. Within

this category three themes emerged, (1) types of specific

medical conditions, (2) medication and treatment, and (3)

chronicity of symptoms. (see Table 2). Foster parents dif-

ferentiated between health conditions or states that were

recurrent (asthma) versus conditions that were more clearly

defined diagnoses (HIV, Hepatitis), which were viewed as

‘‘chronic.’’ ‘‘Chronic’’ health conditions were considered

more serious, or less amenable to treatment.

Divine Power Impact on Health and Cultural Influences

on Health Perspectives

Within this domain, which was inter-related to the concepts

of a healthy child and health status, we found that many

Latino caregivers mentioned divine influence on health

outcomes. While answering other open-ended questions,

many foster parents casually mentioned how religious

influences impacted their own health: ‘‘Thanks to God I am

healthy’’, ‘‘God decides my future health’’, or ‘‘If I feel

okay, praise the Lord’’. Of note, these foster parents

independently mentioned divine influence on health with-

out any prompting from our interview guides.

One subtheme that was related to cultural influence on

health and management of illness was use of home reme-

dies. Most of the Latino caregivers reported that when they

were children their parents had used home remedies for

minor ailments (i.e. use of alcohol on the forehead) and

herbal medications on them. Although all subjects inter-

viewed were parents of children who had ready access to

medical care in our health clinic, many parents still

reported relying on cultural home remedies for minor ail-

ments such as headaches and fevers.

Latino Influence on Creating a Nurturing Family

Environment

When asked to explain why they became foster parents,

most caregivers expressed their fondness for caring for

children, a desire to contribute to the community, and a

wish to feel a sense of purpose. Also, the sentiment of

‘‘treat them like your own’’ appeared in several interviews.

Most importantly, there was a these caregivers expressed a

general feeling of pride because they were able to improve

their child’s health. They appreciated the opportunity to

provide a nurturing supportive home for children in their

care. (‘‘A child needs love, affection, and attention, and I

want to help and give those sentiments to them.’’ Cary,

35 year old Cuban) These feelings of having contributed

something positive for the child, however, occasionally

created a tension between biological and foster parent

relationships. This was especially relevant when children

returned from a visit with biological parents and had

exacerbating behavioral and health problems. For instance

some foster parents noted an aggravation of a child’s

asthma symptoms after a home visit that included exposure

to secondhand smoke. Hence, foster parents felt they had

limited control over their child’s health, but prioritized the

opportunity to create a nurturing home environment.

Discussion

Based on prior work investigating prevalence of chronic

conditions among children in foster care, we explored

Latino caregivers’ perceptions of chronic conditions. The

findings from this qualitative evaluation suggest that Latino

respondents did not interpret the NSCAW question about

chronic illness in the way it was intended. Our results

suggest that the NSCAW question elicited responses

relating to emotional and behavioral health issues rather

than the biological issues it was designed to address. Fur-

thermore, when our research question was given, which

replaced the NSCAW wording of ‘‘over and over again’’

with ‘‘chronic’’, responses elicited more serious conditions

such as, HIV and cancer, which are more likely or often

‘‘terminal.’’ We surmise that this discrepancy may be

attributable to having a cultural barrier, as well as under-

lying differences in what constitutes a chronic condition.

Our findings suggest that Latino foster parents may

dichotomize chronic conditions into those that are terminal

and those that are amenable to treatment. Most Latino

caregivers recognized asthma to be a categorically defined

chronic condition, but moved it to this category only if the

child did not respond to treatment. This variation is due to

the fact that many of these Latino caregivers report that

they have been able to ‘‘cure’’ and ‘‘heal’’ children in foster

care with asthma issues. Foster parents who feel that their

care has resulted in managing conditions such as asthma

effectively, may not uniformly identify asthma as a chronic

illness. A previous study by Becker et al. (1998), which

conducted a 5 year qualitative study on 61 Latino elders,

further proves this notion of ‘‘symptom remission’’ as a

cure to a chronic condition. However, the curing of the

illness was, ‘‘contingent on the continued taking of medi-

cation’’ (Becker et al. 1998). This is consistent with find-

ings from a study with Latinos who initially did not

perceive diabetes to be a chronic condition because they

were able to control symptoms with medication. Many

participants initially viewed diabetes as an acute illness,

and only defined it as a chronic condition after having the

disease for many years (Heuer and Lausch 2006). Simi-

larly, we found that participants identified terminal ill-

nesses, especially those that were incurable and required

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ongoing care, such as HIV, as a chronic condition. Simi-

larly, health conditions with limited treatment options were

considered chronic. This is consistent with the World

Health Organization definition of a chronic illness or

condition as a health issue that persists over a long period

of time that often requires comprehensive health services

(Epping-Jordan et al. 2004). Our study findings supported

that the perceived ability to manage or control a chronic

health condition affected Latino foster parents’ concept of

chronic conditions.

Ongoing management and symptom remission were

important components of what defined a chronic illness;

however, other important themes related to the intertwined

relationship of child and caregiver health, and divine

influences on health. Some foster parents noted that they

felt younger and healthier while caring for healthy children

(i.e., synergistic effect of health and child health), and

others made references to a divine power having control

over their health. Many stated that the status of their future

health conditions would be determined by God. Other work

have suggested that Latinos may perceive the cause of their

chronic illnesses to be a result of ‘‘God’s will’’ or ‘‘pun-

ishment from God’’ (Brown et al. 2009b; Quatromoni et al.

1994; Zaldı́var and Smolowitz 1994). Many perceived that

their illness was the result of doing something wrong, of

which God disapproved, and that therefore their illness is

the punishment for their crimes. We are unsure how this

might impact the day-to-day management of a child’s

chronic condition, but believe this warrants further study.

Another important finding relates to the cultural asso-

ciation of Latinos being a nurturing population, which

supports previous literature (Kolobe 2004; Wong 2006).

Latinos have ranked high on the nurturing scale, when

tested using the Parent Behavioral Checklist (Wong 2006).

Caregivers within our study population stated that they

treated their foster children, ‘‘like their own’’, and were

‘‘praised’’ for their care. Strong family cohesion, and a

nurturing environment, has proven to have a positive cor-

relation on a child’s health (Kolobe 2004). Perhaps the

nurturing environment of the Latino community and

extended kinship care translates into methods of care that

truly reduce, if not eliminate the presence of a chronic

illness.

It is important to recognize the relative strengths of this

research study. Our study contained the entire population of

Latino caregivers within Monroe County, which allowed for

a wide range of opinions and a highly representative sample.

The general Latino population in Monroe County accounts

for about 5 % of the population (Department of Human

Services, personal communication). In addition, the nature of

this qualitative research provided an opportunity to explore

the quantitative NSCAW data on a personal level, using an

open-ended approach, which resulted in many robust

findings. Nonetheless, the broader applicability of our

research findings is limited by several factors. Data were

collected from a single county population, and it is possible,

although unlikely, that some foster parents had limited

experience with children who have chronic health conditions.

All participants were able to speak in English, but the occa-

sional use of a Spanish dictionary to assist with translation

may have affected some subtle nuance of their opinions.

Prior work has shown that Latino health perceptions are

affected by cultural orientations that differ from the

mainstream, which may not be rooted in the biomedical

model (Arcia 1998; Garcia et al. 2007, Becker et al. 1998).

This may be attributed to the profound effect that cultural

beliefs have in the use of home remedies and on how

certain ailments are treated (Becker et al. 1998; Hatcher

and Whittemore 2007; Riche 2000). Latinos may interpret

an illness as a consequence of experiencing strong emo-

tions, or having spiritual significance (Hatcher and Whit-

temore 2007).Moreover, the use of alternative medicine

and home remedies is higher within the Latino population,

as compared to other ethnic groups (Bearison et al. 2002;

Mikhail 1994; Schoenberg et al. 2004). Becker’s et al.

study revealed that Latino’s possess lower levels of

knowledge about chronic illnesses (Becker et al. 1998). All

of these factors may impact Latino foster parent health

perceptions around chronic conditions. Further, Latino

foster parents who are caring for children under the aus-

pices of the social services may be less likely to admit to

using cultural practices, or less comfortable with applying

non-traditional remedies that they might otherwise use with

their own biological children.

Conclusion

Major implications from this project relates to enhancing

cultural awareness and competency. More effective

research tools are needed to understand how culture and

foster care health intersect. If Latinos are truly improving

the health status of children in foster care, we should

identify the factors that contribute to this method of care.

If, however, Latinos are misinterpreting standardized sur-

vey questions on chronic conditions, and have a unique

cultural view of chronic health conditions, then researchers

need to rephrase standardized questions and use follow-up

probes to ensure that survey respondents understand the

questions. Further, health care providers need to expand

educational efforts around chronic condition identification

and management, and reframe chronic conditions as ill-

nesses that will require ongoing intervention, and not just

acute symptom management. For the foster care system, it

is vital to identify children in foster care with chronic

conditions, (Jee et al. 2006) and those who may benefit

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123

from active case management to avoid unnecessary emer-

gency department visits, (Jee et al. 2005) and apply stan-

dardized screening measures (Jee et al. 2010a, b, c, 2011a,

b). Foster parent training programs, which can impact

access to care, should take into account unique cultural

aspects that can impact health beliefs and behaviors.

Acknowledgments We gratefully acknowledge the support of the

Monroe County Department of Human Services and especially Susan

McClean in assisting with this project. Supported in part by the

Robert Wood Johnson Physician Faculty Scholars Program (S.H.J.).

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