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School of Medicine
January 2020
Trust And Healthcare: A Qualitative Analysis Of Trust In Spanish
Trust And Healthcare: A Qualitative Analysis Of Trust In Spanish
And English Language Group Well-Child Care
And English Language Group Well-Child Care
Nicolas Muñoz
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Recommended Citation
Recommended Citation
Muñoz, Nicolas, “Trust And Healthcare: A Qualitative Analysis Of Trust In Spanish And English Language
Group Well-Child Care” (2020). Yale Medicine Thesis Digital Library. 3936.
https://elischolar.library.yale.edu/ymtdl/3936
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Trust and Healthcare: A Qualitative analysis of Trust in Spanish and English language
Group Well-Child Care
A Thesis Submitted to the Yale University School of Medicine
in Partial Fulfillment of the Requirements for the
Degree of Doctor of Medicine
by
Nicolas Muñoz
2020
ABSTRACT
Trust and healthcare: a qualitative analysis of trust in Spanish and English language
group well-child care
Nicolas Muñoz, Patricia Nogelo, Benjamin Oldfield, Ada Fenick, Marjorie Rosenthal
Yale Pediatric Primary Care Center and Yale Clinic for Hispanic Children,
Department of Pediatrics
Yale University School of Medicine, New Haven, CT
Background: Trust, in the healthcare setting, is defined as the optimistic belief that
providers and systems serve patient’s best interest. It is a multidimensional concept
including competence, and value congruence, and exists due to patient vulnerability.
Trust has been demonstrated to impact healthcare utilization. In pediatric patients, trust
is key for strong and effective provider-patient relationships though Black and Latinx
parents of children have lower trust in their physicians when compared to non-Hispanic
white parents. Group well-child care (GWCC) is a model of care redesign that has been
associated with increased trust among participants, and has demonstrated efficacy in
serving black and Latinx as well as low socioeconomic families. This study aimed to
describe themes related to trust among parents who participated in both English and
Spanish language GWCC.
Methods: GWCC includes a 90-minute health care visit in the first year of life that takes
place instead of traditional well-child care. We performed purposeful interview
sampling of parents who participated in either Spanish or English Language GWCC at the
Yale Primary Care Center from 2016-2017 using a semi-structured interview guide.
Directed content analysis was performed using a theoretical framework for trust in
healthcare.
Results: Twenty interviews were performed in total with half being parents in each
Spanish and English GWCC. A majority of parents participating were mothers (81%),
hispanic/latinx (56%) and 39% participated with their first liveborn child. Three themes
related to trust and GWCC emerged: 1) group dynamic flattens traditional hierarchies in
care, 2) opportunity for cross-validation and triangulation of information, and 3)
structural competency from providers and the healthcare system is associated with
trust.
Conclusions: As healthcare is redesigned strategies to increase trust in healthcare for
minority patients is important to achieve the triple aim of less per capita cost, greater
population health and better patient experience. In this study we characterize how trust
works in the GWCC setting, and facilitates structurally competent care for families.
Acknowledgements:
To my mentors: Ben Oldfield, Patricia Nogelo, Ada Fenick, and Marjorie Rosenthal.
Thank you for your enthusiasm and support of my perusal of this timely topic that has
given me the opportunity to learn the immense texture and context that comes from
qualitative work. For your passion in what you all do, and for the countless hours spent
working with me on this project and giving me advice for my future career as a clinician,
researcher, and human.
To my peers: for those that came before me and made spaces like Yale welcoming to
work towards social justice, such as Robert Rock. I also thank those who made this
journey through medical school special, and unlike anything I will be able to experience
again, Dervin Cunningham, and my roomates and close friends—you keep me grounded.
To my family: Sebastian and Tomás, for keeping me humble regardless of the
accomplishments and successes that I have, to you two I am just your brother and you
know all of my flaws. To my mom, Angela Duque, who left one career but found a
passion in teaching bilingual second grade science to children primarily from Latin
America. You carry their stories, and teach me the impact we can have on youth through
the impact you’ve had on your students who are going on to do great things. To my dad,
Rodolfo Muñoz, who’s self-sacrifice and tireless work ethic pushes me every day to learn
and succeed through the opportunities you’ve afforded me.
“People, as being ‘in a situation,’ find themselves rooted in temporal-spatial
conditions which mark them and which they also mark. They will tend to reflect on their
own ‘situationality’ to the extent that they are challenged by it to act upon it. Human
beings are because they are in a situation. And they will be more the more they not only
critically reflect upon their existence but critically act upon it.
Reflection upon situationality is reflection about the very condition of existence:
critical thinking by means of which people discover each other to be “in a situation.” Only
as this situation ceases to present itself as a dense, enveloping reality or a tormenting
blind alley, and they can come to perceive it as an objective-problematic situation—only
then can commitment exist. Humankind emerge from their submersion and acquire the
ability to intervene in reality as it is unveiled. Intervention in reality—historical awareness
itself—thus represents a step forward from emergence, and results from the
conscientização of the situation. Conscientização is the deepening of the attitude of
awareness characteristic of all emergence.”
Paulo Freire
Pedagogy of the Oppressed
Table of Contents:
INTRODUCTION ……………………………………………………………………………………………………….
1
Theoretical framework for Trust in Healthcare ……………………………………………… 1
Trust and Vulnerability ………………………………………………………………………………. 2
Structural Vulnerability and Structural Competency
………………………………………. 3
Distrust in Healthcare ………………………………………………………………………………… 4
Association of Trust and healthcare utilization in the pediatric population ……….. 6
The Study of Attitudes and Factors Effecting Infant care Practices (SAFE) ……… 7
Well-child care redesign and the triple aim …………………………………………………… 9
Group well-child care as a clinical redesign to serve minority populations ……… 10
METHODS ……………………………………………………………………………………………………………..
12
Setting ……………………………………………………………………………………………………. 13
Participants
……………………………………………………………………………………………… 14
Measures ………………………………………………………………………………………………… 14
Procedures
………………………………………………………………………………………………. 15
Bilingual analyses ……………………………………………………………………………………. 15
RESULTS
………………………………………………………………………………………………………………..
17
Participant characteristics …………………………………………………………………………. 17
Theme 1: Group dynamic flattens traditional hierarchies in care
……………………. 18
Theme 2: “The best of both worlds” Cross-validation and triangulation of
information
……………………………………………………………………………………………… 21
Theme 3: Structural competency and Trust …………………………………………………. 26
1: Development of trusting and open space in GWCC
……………………….. 27
2 and 3: Providers elicit social barriers faced by families, and provide
support and resources when able …………………………………………………….. 29
DISCUSSION
…………………………………………………………………………………………………………..
33
Theme 1: Group dynamic flattens traditional hierarchies in care
……………………. 33
Theme 2: “The best of both worlds” Cross-validation and triangulation of
information
……………………………………………………………………………………………… 35
Theme 3: Structural competency and Trust …………………………………………………. 38
Table 1. Social vulnerabilities identified in the group
………………………… 45
Figure 1. Bronfenbrenner’s ecological model adapted for structures of
Immigration and health ………………………………………………………………….. 48
CONCLUSION
…………………………………………………………………………………………………………
49
Strengths and Limitations …………………………………………………………………………. 50
Future work:
……………………………………………………………………………………………. 52
REFERENCES ………………………………………………………………………………………………………….
54
Introduction
Theoretical framework for Trust in Healthcare
The evaluation and understanding of trust and distrust in healthcare have been
rooted in a sociological, theoretical framework of trust that defines dimensions key to
development of trust. Within healthcare, trust in providers has been most broadly
defined as the belief that the provider will act in the patient’s best interest.1 Hovland,
Janis, and Kelly first described a paradigm of trust with two dimensions, perception of
values congruence and perception of competence.2 Perceived value congruence means
that the patient believes that the provider shares a similar value structure to the patient
that will guide decisions in care. Perceptions of competence rely on the belief that a
provider has the knowledge, skill set, and credentials to deliver appropriate care. This 2-
dimensional paradigm has been used to understand trust in healthcare settings, and has
formed the basis for quantitative tools used to measure trust in healthcare.3,4
More specifically, a systematic review of the literature identified 32 articles that
discussed trust in the healthcare field, including the development of trust scales.
Methodology for development of these scales in the majority of studies used qualitative
methods, pilot surveying, and validation testing.5 Across these studies, the dimensions
of trust identified included: honesty, confidentiality, dependability, communication,
competency, fiduciary responsibility, fidelity, agency, respect, caring, privacy, and global
trust.
2
Trust and Vulnerability
Trust forms a critical component of societal interactions and is especially
important in healthcare. Mark Hall, JD and Director of Health Law and Policy at
Wakeforest is among the first to thoroughly explore the importance of trust in
Healthcare. In their primary work, he and his team stated that, in healthcare, trust is
necessary due to patients’ vulnerability.6 In the framework they suggest, trust in the
provider-patient relationship is contingent on the unavoidable vulnerability of the
patient. Illness is a source of vulnerability that requires trust in the provider’s knowledge
and skill-set to engage in a beneficial relationship. The greater the vulnerability and risk
involved in the relationship, the greater the potential for trust.
Hall et al., in their discussion of trust and vulnerability, focus on vulnerability of
the patient with regards to their illness. In this next section, we expand upon this
limited view of patients’ vulnerability and argue that the provider-patient relationship
should also take into consideration how social, political, and environmental
vulnerabilities significantly impact patients’ health. This view of vulnerability and trust
should consider the holistic view of the patient within their social context. Provider
understanding of the structural vulnerabilities patients face when engaging with care is
critical to the development of a more trusting relationship, and particularly important
when serving vulnerable patient populations.
3
Structural Vulnerability and Structural Competency
In the last decades, public health and health care professionals have put increasing
emphasis on the need to address the social factors, social vulnerabilities, that affect
people’s health. The “social determinants of health” are recognized to have a role in the
health inequities faced in the United States such as those rooted in race, ethnicity,
socioeconomic status, and gender.7,8 Cultural competency has been promoted as a way
to address racial and ethnic disparities in care that have been attributed to difference in
cultural beliefs and values, but in recent years has been critiqued for its’s reinforcement
of stereotyping individuals from different cultural and ethnic backgrounds.9 One of the
main criticisms has been that focusing on cultural barriers misattributes health
outcomes to cultural practice instead of understanding the multifactorial effects of
social inequality stemming from political, social, and economic roots.10 This evolving
criticism in the social science literature reframes cultural competency under the
emerging concept of structural competency. 11,12,13,14,15 Encompassing the social
determinants of health, the concept of structural vulnerability emphasizes the effects
that social context has on the individual, and recognizes the limited agency individuals
have within these greater structures.
The current work on structural competency emphasizes the need to train
clinicians to understand how clinical symptoms, attitudes, and diseases represent
downstream effects from a system of decisions beyond the individual in areas such as
“health care and food delivery systems, zoning laws, urban and rural infrastructures,
4
medicalization, or even the very definitions of illness and health”.11 Structural
competency has been operationalized to re-structure the social history, in order to
provide a framework for providers to better recognize, understand, and intervene on
the factors that affect patients’ health.14 In 2018, The New England Journal of Medicine
began publication of “Case Studies in Social Medicine” that highlight “the importance of
social concept and context to clinical medicine.”13 Further, structural competency is
being embraced as an educational focus in premedical and medical school curricula,
aligned with the eight competency domains for health professions as outlined by the
Association of American Medical Colleges.12,16 Emphasizing provider competency in
understanding the language and impact structural vulnerabilities will promote better
provider-patient relationships and empower advocacy for institutional and structural
interventions on a system.11
Distrust in Healthcare
Equally important in the healthcare setting is the idea of distrust, which is
distinct from the absence of trust and is defined as a belief that providers/organization
may act against an individual’s interest. Several theoretical frameworks of trust and
distrust suggest that the two lie on opposite sides of a linear scale, with trust being in
the positive direction, distrust being negative, and no trust being neutral at ‘zero’.4
Among racial and ethnic minorities, concern about distrust is important given the
history of structural racism, the repercussions of which have impacted generations of
individuals. Historically, the U.S. Health Service Corp Syphilis Study (also knowns as the
5
Tuskegee syphilis experiments) serve as only one example of the medical mistreatment
of the Black community that has been linked as a contributing factor in the increased
distrust in the medical system among Black communities, and to increased health
disparities.17,18
Similarly, eugenic sterilization laws in the 20th century disproportionately
affected minorities, such as Latinxs.19 These are two specific historical examples of how
medical institutions have violated minority groups, however they are by no means
unique examples. The extensive historical violation of Black Americans by medical
institutions from pre-colonial times through the present has been detailed in Dr. Harriet
A. Washington’s book, Medical Apartheid.20 Both Blacks and Latinxs have demonstrated
lower institutional trust, and while relatively few people distrust their personal
physician, there is significant distrust among Blacks with regards to shared values.21,22,23
In evaluation of the significant racial disparity in cardiac disease, Black patients perceive
existent racism in health care settings and have higher health care distrust.24 This
distrust has been justified by work that illuminates significant implicit bias of providers,
who were less likely to offer black patients thrombolysis for management of infarction
compared to white patients with the same clinical presentation.25 Similarly, Latina
women have higher medical mistrust surrounding breast cancer screening, with
Spanish-interviewed participants having higher mistrust scores compared to other
studied groups.26 Consideration of the historical trauma of medical mistreatment and
6
abuse of trust by providers and the healthcare system as well as continued systematized
racism and structural barriers in part explains minority distrust of healthcare.
Association of Trust and healthcare utilization in the pediatric population
Trust and distrust have emerged as fundamentally important elements of the
interaction with healthcare, both in the interpersonal patient-physician relationship and
in the healthcare system.27 Trust and distrust have both been demonstrated to impact
healthcare utilization, including seeking of appropriate care, and treatment
adherence.28,29,30 Importantly, distrust in the health care system is associated with lower
self-reported health.29
In parents of pediatric patients, trust in providers has been shown to be an
important factor in development of a strong and effective provider-patient
relationship.31,32 Parental trust in providers within a medical home has been associated
with behavior change to improve newborn safety in the home, and be a factor in the
decision-making process to vaccinate ones child.31,33 In the United States, the proportion
of children from racial minorities is growing at a rapid pace, and predicted to become a
majority-minority population by the 2020s.34 In the greater New Haven area, the
population <18 years old is already more than 50% minority, and has been growing.35
Considering the changing demographics of the pediatric population it is important to
consider existing disparities related to trust that have been described among racial
minorities.
7
Black and Latinx populations have repeatedly demonstrated lower levels of trust,
and higher levels of distrust in healthcare.21,22,36,37 Lack of trust in health care has been
associated with prior experiences of racism and discrimination in the healthcare setting,
perceptions of less supportive physician communication, and lack of continuity of
care.32,38 A study in the pediatric emergency department found that Hispanic and
Spanish speaking parents of patients had lower trust in their physicians than did non-
Hispanic and English speaking parents.39 Studies that used the Pediatric Trust in
Physicians Scale found that African American parents and those that self-designated
race as “other” were found to have lower trust when compared to non-hispanic white
parents.40 The ‘other’ category in this study would likely include Latinx individuals as the
study did not differentiate Hispanic ethnicity in their analysis, and studies show that
people of Hispanic ethnicity often select other when self-selecting for race.41 These
trends suggest that differences in trust exist among parents of pediatric patients that
reflect the environments and interactions experienced by these populations in
approaching medical care.
The Study of Attitudes and Factors Effecting Infant care Practices (SAFE)
The Study of Attitudes and Factors Effecting Infant Care Practices (SAFE), a large
nationally representative study that aimed to identify mother’s decision-making related
to infant care practices, reveals both the differences in trust in healthcare and a
potential solution. Results from the study demonstrate that non-Hispanic Black mothers
were significantly less likely to trust health care providers when compared to non-
8
Hispanic white mothers.42,43 In a separate study, black mothers have been shown to
have higher trust in providers with which they have a continuing relationship.32 In
comparison, Hispanic mothers in the SAFE study reported comparable levels of trust in
providers when compared to non-Hispanic whites; these same Hispanic mothers had
significantly higher trust of media sources for infant care practices, suggesting a possible
opportunity for outreach for this population.42
In the SAFE study, mothers with higher levels of education consistently had more
trust in physicians about all infant care practices. Mothers with lower levels of education
had lower trust; lower education may be associated with lower health literacy and
feeling a greater gap between themselves and the provider, affecting rapport.43 Analysis
of maternal trust in providers was also examined as a part of the same SAFE study.
Characteristics associated with higher maternal trust included reporting that the doctor
asked their opinion, belief in the provider’s qualification, and if their child was usually
seen by one provider.43
Kilbourne et. al.’s framework for advancing health disparities research suggests
a three phase approach, staring with detection of disparities, moving to understanding
why these disparities exist, and lastly in developing, implementing, and evaluating
interventions that address these health care disparities. 44With regards to trust, several
studies have detected and described the disparity that exists in regards to trust in the
healthcare setting for minority pediatric populations. While there is some limited
understanding of factors that influence trust, understanding the reasons for differences
9
in trust requires continued effort, and will be addressed in part by this thesis work.
Lastly, in implementation and evaluation there is little work that has specifically looked
at specific ways to improve trust in Black and Latinx patient populations specifically. One
area that has been explored and will be explored in this study is the well-child visit and
clinical redesign through the group well-child care model.
Well-child care redesign and the triple aim
As healthcare is redesigned with the triple aim of less per capita cost, greater
population health, and better patient experience, models of care redesign should
consider improving trust of minority pediatric populations to improve these three
aims.45 Well-child care is a central component of pediatric US health care services.
Guidelines on well-child care visits include recommendations on physical exam,
developmental/behavioral screening, immunization, and anticipatory guidance.46 Yet,
evaluation of services actually received reveals a range in receipt of guideline-
consistent, quality care in these areas and a majority of parents feel they have unmet
needs.47,48 Barriers in achieving these standards reveals structural barriers and
vulnerabilities that include race/ethnicity, socioeconomic status, and English language
proficiency.
For example, in the National Ambulatory Medical Care Survey data, well-child
visits were 10% shorter for Latinx children than either White or Black children. Further,
Black and Latinx children were, respectively, 32% and 37% less likely to receive
preventive counseling.49 In evaluation of parent perceptions of pediatric primary care
10
quality, limited English-language ability and less potential access to care are associated
with lower perceived quality of care.50 While one study found that half of limited-English
proficient Latina mothers expressed satisfaction with their child’s pediatric primary care,
this same study identified that limited English skill among families and limited Spanish
skills among providers and clinics results in misinformation and frustration for parents.51
Currently, over 1/5th of the United States speaks a language other than English at
home, and by 2050 the US population is expected to be over 25% Hispanic.52 The rapid
growth of this population and the existing disparity in pediatric primary care
experienced by Latino and limited English-proficient pediatric primary care patients
presents a case for research and programmatic efforts for improvement in primary care
practice for this population.
Group well-child care as a clinical redesign to serve minority populations
Group well-child visits is a model of care redesign of caregiver-infant groups that
meet at regular periods with a consistent interdisciplinary provider team, with emphasis
on group discussion and facilitating caregiver social support.53 When engaged in
conversations about care redesign, low-income and primarily Spanish speaking parents
have previously endorsed positive attitudes towards GWCC.54 Additionally, the group
setting may promote building of community, which has been associated with lower
distrust in healthcare systems in sociologic studies.55 In addition to positive attitudes
around GWCC, comparisons between group and individual well-child care have shown
more robust perceived benefits among GWCC participants.
11
In a mixed-methods study of caregiver participants in English-language individual
and group well-child care in an urban setting in Philadelphia, there was no significant
difference in trust between the two groups using the Trust in Physicians Scale. However,
GWCC participants scored significantly higher in the domain of global trust in physicians.
While the quantitative evaluation of trust in this study showed no overall difference
between the individual and group visits, the group participants scored significantly
higher in the domain of overall trust.56 In the qualitative aspect of this study dimensions
of trust were not evaluated, and as the authors of the study note, further study on trust
and GWCC care is warranted. In the current study, domains of trust will be examined as
they arose with empirical, qualitative interviews with parents.
In addition to participant perceptions, GWCC has been associated with lower
rates of obesity, greater attendance and more timely immunizations, and has been
shown to be cost-effective or cost neutral.57,58,59 GWCC among low-income and Spanish
speaking parents enhances collective efficacy, and discovery of inherent expertise
within the group. Further, these groups may have an effect on health care utilization
through peer-to-peer triage.60 As such, GWCC has demonstrated efficacy as an
alternative treatment model to serve minority and low socio-economic families. With
increasing interest in improving patient trust and the need to improve trust among
marginalized populations, there remains a need for closer evaluation of trust within the
GWCC setting.
12
Together, these findings suggest that trust is an important component of the
parent-provider relationship in pediatric care, and is an issue of equity with regard to a
parent’s race and ethnicity. This study of GWCC was informed by the importance of
trust in the parent-provider relationship and recognition of the differences in trust
among different populations, noting in particular the limited research on trust in limited
English-proficient populations.61 Accordingly, our specific aim and research question are
as follows.
Specific Aim:
The aim of this study is to characterize the perceptions and experiences of trust in
providers and healthcare systems among caregivers of infants who participated in either
English or Spanish language concordant group well-child visits at Yale’s Pediatric Primary
Care Center.
Research Question:
Among caregivers of infants receiving group well-child that predominantly serves a low
income and minority population, what are the themes of trust in providers and trust in
health systems that emerge?
Methods
The current study was guided by the Consolidated Criteria for Reporting
Qualitative Research, and used a deductive approach for qualitative methods to
characterize parent perspectives on interactions within the group associated with trust
13
and distrust utilizing previously existent interviews from the original study.62 A
deductive approach was used based on a theoretical framework for trust that
categorizes multiple dimensions of trust.63 All members of our research team were
bilingual (English and Spanish), in aggregate were multinational (of Eastern United
States, Colombian, and Venezuelan descent), and included pediatricians and a pediatric
social worker with experience in qualitative methods and group well-child care.60,64,65
Our methods were underpinned by directed content analysis, a qualitative research
strategy whose goal is to extend an existing theoretical framework (in our case, the
multi-dimensional model of trust).66 The Yale School of Medicine Human Investigation
Committee previously approved all study procedures.
Setting
GWCC is offered in the Yale Primary Care Center, an urban hospital-based clinic
that is the medical home for approximately 7,500 children, serves primarily families who
receive public health insurance (97%), about 45% of whom identify as Black and about
45% as Hispanic or Latinx. GWCC is offered to all families electing for infant care at the
Primary Care Center for which the mother has the infant in her care and if she reports
that she is able to participate in visits in English or Spanish.
This model of GWCC includes 90-minute health maintenance appointments in
either English or Spanish (participants choose), in place of traditional well-child care,
throughout the first year of life. For the first 30 minutes, four to eight families cycle
through: anthropometric measurements by the nurse, physical exam by the resident
14
and pre-visit questionnaires with the child-life specialist or social worker. During the
next 45 minutes, the resident, supported by a nurse, attending pediatrician, and child-
life specialist or clinical social worker, facilitates a discussion about anticipatory
guidance and parenting strategies. The last 15 minutes are for vaccine administration
and follow-up on families’ individual needs.
Participants
The original study design sampled purposefully from parents electing for GWCC
at the Yale Primary Care Center from 2016 through 2017, seeking to be inclusive of
heterogeneity in age, language spoken (English or Spanish), number of children, and
parental role (mother, father, grandparent). This included parents who had completed
at least three GWCC visits to ensure a lower limit of information-richness among
participants, 40 of whom existed during the study timeframe. Recruitment continued
until achievement of thematic saturation: when no new themes emerged with
subsequent interviews.67
Measures
The authors of the initial study developed conceptually identical interview guides
in English and Spanish that were agreed upon by all research team members to be
culturally and structurally competent 67. Open-ended questions encouraged participants
to address predisposing factors, enabling factors, and needs for health services
utilization according to the Andersen model of healthcare utilization (see Text Box).68
Text box. Grand tour questions from interview guide.
15
• Tell me about your experiences with group well child care.
• Can you describe one thing you’ve taught others in group well-child care? And one
thing you’ve learned from others in group well-child care?
• What is it like to share in a group with other parents who are different from you
(according to age, first child or not, having a partner or not)?
• Are there experts in the group? Who “runs” the group?
• What is your relationship like with the facilitators of the group? What is your
relationship like with the other parents?
• What do you think you offer the group?
Procedures
The original study used an interview strategy to optimize privacy and welcome
participants to discuss their care experiences.69 Depending on the participant’s
preference, the interview occurred in either English or Spanish, in either a private office
in the clinic (not connected to a GWCC visit) or in the patient’s home by Benjamin
Oldfield, who did not provide GWCC. With verbal informed consent, we digitally
recorded all interviews, and a professional transcriptionist transcribed the recordings.
Those who agreed to participate received a $10 gift card.
Bilingual analyses
Although standards of rigor exist for the conduct of qualitative research (Tong et
al., 2007), to our knowledge, no standards exist for the transformation of source to
target language or the integration of multiple source languages. After consulting the
literature (Santos, Black, & Sandelowski, 2015; Tong et al., 2007) and qualitative
research experts, we decided to retain data in the source language to preserve
participants’ narratives through all steps of analysis.62,70 Translation was performed only
16
upon dissemination of findings with the agreement of at least two analysis team
members.
In the first stage of analysis, all members of the research team created
conceptually identical codes in English and Spanish in consensus as concepts emerged
from the data; initial code book was developed using the dimensions of trust outlined by
the theoretical framework of trust, but codes were not limited to concepts the existent
theoretical framework, and analyses were not conducted separately by language.69 We
compared coded text to identify novel themes and expand upon existing themes until
no new concepts emerged in subsequent transcripts. Four transcripts were
independently coded by the four member of the team (BJO, NM, PN, MR) followed by
discussion to reach agreement on code definition and coding consistency within the
transcripts. The first author then used the final code structure to recode all transcripts.
We used qualitative analysis software (Dedoose 8.3.10, SocioCultural Research
Consultants, LLC) to facilitate data organization.
The above research methods come from previous work by Benjamin Oldfield,
Patricia Nogelo, and Marjorie Rosenthal. Using existing transcripts, a deductive
qualitative analysis targeted to identifying discussion trust was developed in order to
characterize dimensions of trust discussed. Development and refinement of the
codebook, and final coding was developed performed primarily by the author of the
thesis.
17
RESULTS
Participant characteristics
From March through August 2017, the authors of the original study approached
23 parental caregivers and interviewed 22; one caregiver declined to participate. Half of
the interviews occurred in the home of the family and half in an office in the Primary
Care Center. Half were conducted in English and half in Spanish. The mean duration of
the interviews was 33 minutes. Most (81%) participants were mothers but we also
interviewed fathers and grandparents who were active participants in GWCC. The age of
the mother at the child’s birth ranged from 18 to 44. The sample was racially and
ethnically diverse and most (94%) were insured by Medicaid (Table).
Table. Interview participant characteristics (n = 22).
Characteristic
n (%) or mean [range]
Interviewee relationship to child
Mother
Father
Maternal grandmother
Paternal grandmother
18 (81)
2 (9)
1 (5)
1 (5)
Mother’s age at child’s birth (years)
31 [18 – 44]
Child’s age at interview (months)
6 [3 – 12]
First liveborn child
7 (39)
Race/ethnicity of child
Black/African American
Hispanic/Latino/a
White
6 (33)
10 (56)
2 (11)
Insurance of child
Medicaid
Commercial
17 (94)
1 (6)
Participant’s preferred language
Spanish
English
11 (50)
11 (50)