Nurse-Focused Cultural Competency Education for Patients ...

DIFFERENCES OF SEX DEVELOPMENT NURSING EDUCATION 1

Nurse-Focused Cultural Competency Education for Patients with Differences of Sex

Development

Tracy Lynn Pfeifer Hall

An evidence-based doctoral project presented to the Department of Nursing at

Mount St. Joseph University

In partial fulfillment of the degree

Doctor of Nursing Practice

April 19, 2021

________________________________________________

Dr. Nancy Hinzman, DNP Advisor


Table of Contents

ABSTRACT .................................................................................................................................. 5

PROBLEM .................................................................................................................................... 9

Nomenclature ........................................................................................................................... 10

Incidence .................................................................................................................................. 12

Political Group Inclusions ......................................................................................................... 13

History of Care ......................................................................................................................... 15

Cultural Milieu/Life Experiences ............................................................................................... 17

PICOT QUESTION ...................................................................................................................... 19

REVIEW OF EVIDENCE ................................................................................................................ 19

Level of Evidence Results (LOE) ................................................................................................. 20

Evidence Table/Matrix .............................................................................................................. 21

SUMMARY OF LITERATURE ........................................................................................................ 21

Identifying needs ...................................................................................................................... 22

Cultural Competency ................................................................................................................ 26

Education, Evaluation, Outcomes.............................................................................................. 28

FRAMEWORKS ........................................................................................................................... 30

Evidence-Based Model.............................................................................................................. 31

Theoretical Framework ............................................................................................................. 32

Cultural Competency Framework .............................................................................................. 33

PROJECT PROPOSAL .................................................................................................................. 34

Population and Setting ............................................................................................................. 35


Intervention .............................................................................................................................. 36

Classroom Education ............................................................................................................ 36

PowerPoint. .......................................................................................................................... 38

Video. ................................................................................................................................... 38

Organization. ....................................................................................................................... 39

Data Collection Tools ........................................................................................................... 42

STRATEGIC PLANNING .............................................................................................................. 46

Ethical considerations .............................................................................................................. 46

Stakeholders ............................................................................................................................ 47

Driving Forces .......................................................................................................................... 47

Budget ...................................................................................................................................... 49

Milestone Timeline ................................................................................................................... 50

EVALUATION OF EVIDENCE-BASED PROJECT ............................................................................. 50

Clinical Knowledge Questionnaire ............................................................................................ 52

Health Belief Attitudes Survey Instrument (HBAS) Questionnaire ............................................... 54

SIGNIFICANCE AND IMPLICATIONS ............................................................................................ 56

PROJECT FUTURE ...................................................................................................................... 59

CONCLUSION ............................................................................................................................ 59

REFERENCES ............................................................................................................................. 62

APPENDIX A .............................................................................................................................. 71

APPENDIX B .............................................................................................................................. 72

APPENDIX C .............................................................................................................................. 73

APPENDIX D .............................................................................................................................. 74


APPENDIX E .............................................................................................................................. 75

APPENDIX F............................................................................................................................... 76

APPENDIX G .............................................................................................................................. 77

APPENDIX H .............................................................................................................................. 78

APPENDIX I ............................................................................................................................... 79

APPENDIX J ............................................................................................................................... 80

APPENDIX K .............................................................................................................................. 81

APPENDIX L............................................................................................................................... 82

APPENDIX M ............................................................................................................................. 83

APPENDIX N .............................................................................................................................. 84

APPENDIX O .............................................................................................................................. 85

APPENDIX P .............................................................................................................................. 86

APPENDIX Q .............................................................................................................................. 87

APPENDIX R .............................................................................................................................. 88

APPENDIX S............................................................................................................................... 89

APPENDIX T .............................................................................................................................. 90

APPENDIX U .............................................................................................................................. 91

APPENDIX V .............................................................................................................................. 92


Abstract

Hospitals are collecting Sexual Orientation and Gender Identity (SO/GI) data through the

Electronic Health Record (EHR). Although the SO/GI data is aimed at the lesbian, gay, bisexual,

and transgender (LGBT) patient (CDC, 2019), intersex (I) is also an option in the EHR. While

healthcare training exists for the LGBT population, nurses lack focused clinical training and

cultural competency for the intersex/Differences of Sex Development (DSD) patient. Nurse

education was implemented using a PowerPoint during Lunch-and-Learn sessions. Two

questionnaires were administered pre-and post-education, a clinical knowledge survey, and a

validated Health Belief Attitudes Instrument Survey (HBAS). Nineteen nurses attended the

education sessions. A Wilcoxon signed-rank test was used to compare survey data. Before

receiving education, 53% of healthcare workers surveyed for this project reported never having

heard the term DSD and 58% didn’t know intersex was not the same thing as transgender.

There were significantly improved knowledge scores after the education (median = 3 correct)

compared to before the education (median = 1 correct), Z=-3.62, p=0.0003. The percent of

nurses who had heard the term DSD increased from 47% pre-education to 100% post-

education. Nurses' scores on a DSD/intersex knowledge assessment increased from 33% pre-

education to 100% post-education. Finally, nurses’ Health Belief Attitudes Instrument scores

significantly increased from pre-education (M = 4.65, SD = 0.68) to post-education (M = 4.94,

SD = 0.66), p = .017. Qualitative feedback supported the need for this project. This work will

complement the existing SO/GI material in the hospital with the goal of enhancing patient

outcomes for patients with DSDs/intersex conditions.


Keywords: Disorders of Sex Development, Differences of Sex Development, intersex,

sexual orientation and gender identity (SO/GI), nursing, cultural competency, attitudes, nursing

continuing education.


Nurse-Focused Cultural Competency Education for Patients with Differences of Sex

Development

People with Disorders or Differences of Sex Development (DSD) have always existed.

Historically, they were called hermaphrodites or pseudohermaphrodites. The term intersex

began in the early twentieth century to replace older options (Dreger & Herndon, 2009). In

2005, the term Disorders of Sex Development (DSD) was created via the 2005 Chicago

Consensus Conference to replace intersex (Lee et al., 2016). The word differences, versus

disorders, is sometimes preferred to avoid pathologic stigma and is still called DSDs (Lee et al.,

2016). In addition to the terms intersex, and DSDs, some people prefer a karyotype-phenotype

in descriptive terms, such as Xy-female, but this requires users' knowledge (Barthold, 2011).

Others may prefer the actual condition name (Cools et al., 2018). DSD is an umbrella term

representing "congenital conditions within which the development of chromosomal, gonadal,

and anatomic sex is atypical" (Lee et al., 2016, p. 159). Terminology preferences remain

debated.

Having a DSD does not mandate having genital ambiguity. It may involve variations

involving chromosomes, hormone levels, gonads, and/or phenotype. Embryonic development is

still orderly but relying on a cascade of events not usually taught to nurses. Bygone cultures

attributed birth anomalies to an array of theories ranging from God’s will, size of the womb,

hereditary, illness, or even a demonic presence, to name a few (Bates, 2005). History

demonstrates cultural influence over babies born with birth anomalies when they referred to

them as monstrous births (Bates, 2005). Old nomenclature uses fit past eras that lacked basic


genetics. The knowledge of the double-helix deoxyribonucleic acid (DNA) strand did not exist

until the 1950s, which allowed for the explanation of human development. Atypical embryonic

events were no longer a mystery or curse, as doctors scientifically understood fetal

development. Specialty fields that did not exist came into being, fields like genetics, genetic

counseling, endocrinology, embryology, and molecular biology. Scientific terminology now had

the endless potential for redefining birth anomalies that were ever-present. People are not just

born into a world; they are born into social systems where cultures ascribe meaning onto them

from birth. Societal norms have always existed, as have people with DSDs. As science and

medicine continue to evolve, so must the civilization to which patients reside, which is the

essence of cultural competency.

People with DSDs have a painful history within the field of medicine (Dreger & Herndon,

2009). Optimistically, there have been changes to care approaches, but medical students are

still not receiving adequate attention for these patients (Liang et al., 2017). There is an ethical

burden to do better for this population. The nursing curriculum is finally recognizing this void

as well (Brennan et al., 2012). As hospitals continue to collect the Sexual Orientation and

Gender Identity (SO/GI) data as part of a government initiative for hospitals using the Electronic

Health Record (EHR), the unintentional confusion of transgender and DSD/intersex exists.

Nurses need to know what intersex is if it is an option in the EHR. It is timely to offer education

about what a DSD/intersex condition is, and is not, so nurses can provide appropriate care.

Patients with DSDs remain a vulnerable population (Liang et al., 2017).


Cultural awareness is a process of continuous improvement (Mitchell et al., 2018). It is

achieved gradually by educational interventions, like planting a seed that continues to receive

nourishment to grow. This DNP project aims to support better patient outcomes by adding

DSD/intersex cultural competency to nursing continuing education. Desired patient outcomes

are improved access and utilization of health care, patient satisfaction and perceptions of care,

better patient-provider relationships, health equity, bias-free care, and improved health

behaviors (Butler, 2016). Improving the patient experience is a goal nurses can impact. This

project will support nursing education for those caring for the patient with a DSD and expand

on the lifelong growth of becoming culturally competent nurses. Cultural competence includes

awareness, skill, knowledge, encounters, and desire (Campinha-Bacote, 2002). It complements

the SO/GI initiative. This project will focus on clinical knowledge, beliefs, and attitudes (aspects

of cultural competency) for caring for patients with DSDs. Nurses are gaining greater

responsibility to advocate for patients with DSDs/intersex conditions.

Problem

People with differences of sex development have clinical and cultural needs as patients.

The typical nursing curriculum lacks a core education on this subject matter (Brennan et al.,

2012). The burden of educating on DSDs/intersex is that it is complicated. Patients require

proper recognition (clinical knowledge) and understanding of life experiences that shape a

cultural context. For nurses to become literate of this population, they must be educated on

human development, current nomenclature options, history of care, incidence/perceived rarity,

lifespan milestones and experiences, and individualization of care. Educating nurses on this


topic is an arduous process comparable to using building blocks to form a structure, and each

layer of blocks is necessary for nurses to understand it. Even the selection of terminology for

literature searches requires a nurse to be familiar with the topic. The paucity of research

specific to the DSD/intersex patient is a barrier (Liang et al., 2017; Neff & Kingery, 2016). The

hospital-wide sexual orientation and gender identity (SO/GI) data collection has prompted

awareness that nurses lack discernment between transgender and DSD/intersex differences.

Medical students report knowing less about the patient with a DSD or transgender than the gay,

lesbian, or bisexual patient (Liang et al., 2017). While there are a growing number of capstone

projects on cultural competency for the lesbian, gay, bisexual, transgender patient, there is a

void for the DSD/intersex population. The following categories are common areas in which

nurses require education to shape culturally competent care.

Nomenclature

Nomenclature use is important legally and culturally, and nurses need to be aware of

currently acceptable terms. By definition, DSD/intersex are umbrella terms representing

"congenital conditions within which the development of chromosomal, gonadal, and anatomic

sex is atypical" (Lee et al., 2016, p. 159). Transgender is a term for “people who are born with

typical male or female anatomies but feel as though they’ve been born into the ‘wrong body’”

(Intersex Society of North America, 1993-2008). Although some individuals use these terms

interchangeably, they are not the same thing. Terminology is essential for correct

documentation and medical accuracy in the EHR as well as appropriate care. Terminology

ownership creates a boundary. Having a legal genetic basis of a condition and proper use of it


promotes access to insurance coverage, medical accuracy, and lack of confusion (Lee et al.,

2006).

The SO/GI data collection will impact future outcomes, which means there must be

integrity to the input. The target group for SO/GI data is the lesbian, gay, bisexual, and

transgender population (CDC, 2019). There is an option in the EHR to select transgender or

intersex as options (DSD verbiage is not an option at this particular hospital, and the diversity

team was not familiar with it). Terminology selection requires nurses to know the difference

between intersex and transgender. How this information is collected varies amongst hospital

systems. There are inherent challenges to this data collection, including if/how the patient

divulges the information and clinical knowledge of healthcare staff. This project can aid in

meaningful data entry into the EHR, which has long-term implications for several patient

groups. Patient outcomes could be understood through this data collection if gathered

correctly. Terminology use changes amongst specialties, impacting the patient (Miller et al.,

2018). Children’s hospitals have developed DSD clinics with multidisciplinary care teams, but

those specialized clinics cease to exist as patients enter adult care hospitals. When nurses have

insufficient knowledge of the pediatric setting's terminology options, it creates an immediate

communication barrier in the adult setting. Although the DSD nomenclature remains a

medicalized term over clinics, it is not without controversy with patients. Medical personnel

have generally adopted the DSD verbiage, while patients may still choose the word intersex

(Johnson et al., 2017). Friction remains on which term to use, with individuals often preferring

the condition's specific names instead of the DSD or intersex term (Cools et al., 2018). This use


requires that the nurse receive some clinical education on conditions under the DSD/intersex

label. Nurses should be aware of these options and allow the patient to guide the terminology

used. Involving the patient to provide tailored care is different than having the burden of fully

educating staff on DSDs/intersex to receive healthcare (Braun et al., 2017). The literate nurse

will be a nurse who has been exposed to this content and can distinguish the difference

between DSD/intersex and transgender and provide personalized nomenclature use.

Incidence

There is a perceived rarity to DSDs, which could make this nursing education seem easy

to dismiss. Perceived scarcity tends to be a stumbling block for recognition. Inclusion criteria

for what qualifies an individual as having a DSD, and estimates, can vary in the literature (Jones,

2016; Rosenwohl-Mack et al., 2020). A rule for health research is somatic variations, not

political identification (Jones, 2016). One broad method in which DSDs may be categorized can

be 46, Xy-DSDs, sex chromosome DSDs, and 46-XX-DSDs (Rothkopf & John, 2014). The

incidence of DSDs/intersex is not known, and inclusion criteria are a necessary discussion;

however, estimations exist (Lee et al., 2016). Sax (2002) challenged a statistic by Anne Fausto-

Sterling in her article The Five Sexes, which estimated intersex to occur at 1.7% of the

population (Fausto-Sterling, 1993), by arguing that some conditions should not be included in

this statistic (Klinefelter’s Syndrome and Turner’s Syndrome, for example) making the incidence

around 0.018%. Jones (2018) discussed DSD incidence rates’ estimates to range from 1.7% to

4% of the population, but calculations could be minimized since they require tests to diagnose

them. In the Consensus Statement of Global Disorders of Sex Development Update since 2006:


Perceptions, Approach, and Care, a statistical discussion is offered, endorsed by seven global

pediatric and endocrinology governing bodies (Lee et al., 2016), the following incidence rates

are provided: individual incidence of ambiguous genitalia is 1: 4,500 -5,500 live births, 46 Xy

DSDs are 1: 20,000, Ovo testicular DSDs 1:100,000 live births, testicular or mixed gonadal

dysgenesis is 1:10,000, 46, XX (mostly congenital adrenal hyperplasia [CAH]) is 1:14,000-

15,000 live births but can vary by geographic location (Lee et al., 2016). Males with CAH may

not even be included in the DSD category since sex differentiation is not an issue in this

scenario (Lee et al., 2016). Klinefelter’s Syndrome estimates are 1:500/1000 live births, and

Turner’s Syndrome to be 1:2,500 live births (Lee et al., 2016). They also offered that when

proximal hypospadias with cryptorchidism, Klinefelter’s Syndrome, and Turner’s Syndrome are

included, the overall incidence rate could be 1:200/300 (Lee et al., 2016). Jones (2018) added

that some researchers suggest that hormone-related disorders, such as polycystic ovarian

syndrome (PCOS), could qualify as a DSD. As a curriculum goal, all nurses require some

educational exposure to the conditions under DSD's umbrella term, not expertise. DSDs can be

diagnosed at all stages of life (Jones, 2018). This consensus statement will guide nurse literacy

on the topic and also demonstrates how complex this can be.

Political Group Inclusions

The framework to which patients are presented is something to be cognizant of (Jones,

2018). Aside from terminology confusion, it can be challenging to know how to approach

political group inclusions. Political classifications can also confuse the nurse from researching

the topic successfully when self-educating.


The theoretical lens (patient, expert, theory, group) chosen in a study for patients can

impact health research (Jones, 2018). Media and research have a growing inclusion of the DSD

population among the lesbian, gay, bisexual, transgender communities by adding an I for

intersex and a "+" as an open-ended representation for advocacy (GLBTI+). The LGBTI+ is a

group construction and inclusion that requires consideration (Jones, 2018). Jones, 2018, states

that a less discussed political strain is that people with DSDs may not choose to be in this

group construction, which may distract from blurred goals. Jones (2018) articulates a sensitive

yet prominent undercurrent on this – indicating that adding intersex to the LGBT group should

not be assumed and that objectives need to align. Societal norms that are heteronormative can

create minority stress and stigma if a person has atypical sexual characteristics. Understanding

the root causes of health inequalities requires consideration, which can be political or cultural.

On the one hand, there may be political objectives to agree upon by LGBT inclusion. It is

feasible that the “+” can represent a broad ethical inclusion to which the DSD population can

find support (ANA Center for Ethics and Human Rights, 2019). Laws and ethics that determine

rights (marriage, adoption, vocation, etc.) may overlap with the LGBT community goals. On the

other hand, other advocates argue that inclusion could be political gain by inclusion (referred to

as pinkwashing) and can place added intolerance onto the DSD person (Jones, 2018). There is a

recommendation to ask permission to engage in such inclusion, emphasizing patient-centered

care (Jones, 2018). It is imperative to clarify that a person with a DSD could identify in many

ways, as anyone else in society can, because individuality still exists. Some people with DSDs

identify as gay, while others identify as heterosexual or bisexual. Gender identity may not be an


issue for some patients, while others may require more flexibility. Individualizing care is

recommended due to the assortment of phenotypic and psychosocial variances (Lee et al.,

2020). Nurses should be aware of political group construction but allow the patient to explain

what their perspective is on this topic.

It is also necessary for the nurse to be discriminating about research that includes the

intersex person. There are vague references to the LGBT+ or LGBTI+ titles in articles that imply

the patient deemed intersex is in a study, but not including them, which could be considered

exploitive (Jones, 2018). For nursing, it could mean the information is not-applicable. Newer

nomenclatures such as gender non-conforming and non-binary are catch-all terms that could

include DSDs or transgender. Growing vernacular and gender identities can sometimes appear

chaotic, with one study citing 13 genders/sexual orientations chosen by participants (Ross &

Setchell, 2019), making proficiency difficult and possibly creating learner fatigue. It is not easy

material to teach, nor is it done quickly. A call for discernment on this topic is in order, as

patients may not be accurately represented in research that has included them in the title. The

nursing implication is to become judicious about assessing research literature.

History of Care

The history of care is an essential part of the understanding of patient culture and

clinical knowledge. Approach to care since the 1950s involved picking a gender (psychologically

and/or physically) for babies with DSDs that often-included surgery (Thyen et al., 2014;

Rosenwohl-Mack et al., 2020). The purported evidence-based-practice for managing intersex

babies, which generally meant feminizing patients, primarily derived from the John/Joan case


involving the Reimer twins (Colapinto, 2004). The John/Joan case was the research used to

manage patients with intersex conditions and was eventually discredited at the twins' expense

and countless people with DSDs (Colapinto, 2004). During this era, medical records were often

concealed from patients (Dreger & Herndon, 2009). The ethical oath of not harming patients

was camouflaged in professional training that it was moral to lie to patients (Dreger & Herndon,

2009). In more recent decades, old care models have slowly been challenged, ushering in well-

intentioned replacement verbiage, multidisciplinary clinics, and increased visibility of

DSDs/intersex people through national support groups. Informed consent remains a critical

topic for patient care (Cools et al., 2018). Many patients have felt wronged by healthcare

professionals (Cools et al., 2018). A newer revelation has emerged that healthcare providers,

parents, and individuals with DSDs/intersex conditions differ in what is considered a priority of

care (Rosenwohl-Mack et al., 2020).

The DSD term remains an unsettled reference, but the initial goal was to distinguish

patients (Dreger & Herndon, 2009). This area of scientific expertise is still evolving (Lee et al.,

2016). Patients with DSDs can have health care needs related to sexual functioning, poor body

image, discontent with nomenclature, and social remoteness (Lee et al., 2016). Patients can and

should be offered the same mental health interventions as any other patient, including peer

support (Lee et al., 2016). The digital age has ushered in new opportunities for support group

opportunities that didn’t exist twenty years ago. There is still a lot of work that needs to be

done in DSDs/intersex care. In a 2020 study involving DSD/intersex adults, 179 individuals

completing the entire survey, 53% self-reported their mental health as fair or poor, and


diversified by age (p = 0.001), with younger people fairing worse than older individuals

(Rosenwohl-Mack et al., 2020). Approximately one-third of these individuals had prior suicide

attempts (Rosenwohl-Mack et al., 2020). The risk factors for suicidality are unknown but

speculated to be societal discrimination and possibly healthcare treatment (Rosenwohl-Mack et

al., 2020). When nurses are provided with some of the histories of care, it allows them to

empathize with current healthcare choices that might otherwise seem peculiar – such as

choosing not to have gender normalizing surgeries or the quest to retain sex organs that don’t

match phenotype. It also allows an understanding of generational differences nurses may

encounter between patients. Knowing the patient’s age (to understand the era of care they

received), history of care, supportive/cultural milieu, and perspective on their DSD/intersex will

help nurses offer personalized care.

Cultural Milieu/Life Experiences

Cultural challenges can impact someone with a DSD in ways not understood by those

who do not have DSDs. No two people with DSDs have precisely the same life experience; yet,

shared experiences often exist. Sex/gender impacts the entire life span– infancy, childhood,

adolescent milestones and development, marital rights, fertility and ability to adopt, military

eligibility/vocational options, religious participation, inheritance, discrimination laws, etc.

People with DSDs/intersex grow up conceptualizing how they fit into all of these scenarios.

People who are intersex grow up with a never-ending barrage of social conditioning. Pediatrics

can involve care decisions with surgery and gender assignment. Formative years generate self-

concept and self-esteem, choice of dress, and playmates. Classroom coursework usually does


not include them, such as an introductory biology class where two options for karyotypes and

sex/gender are often taught (which can even be at a collegiate level). Puberty may accompany

unintended changes differing from peers, such as unwanted virilization or lack of menses.

Adolescence may involve surgeries and transitional hormone replacement experimentation.

Dating and pair-bonding is another societal norm that people with DSDs navigate with

childbearing issues to follow. The cultural pressures never go away with age; they change

settings. Not having a menstrual cycle is revisited every time a nurse asks a phenotypic female

patient when their last menstrual cycle was. A milestone vaccination for the human

papillomavirus marketed to girls with cervixes creates new critical thinking for application with

a DSD/intersex condition where a cervix may be lacking. While brief examples of medical

scenarios can be given, the lifetime list of experiences can be exhaustive for someone with a

DSD/intersex condition.

Campinha-Bacote (2002) defines cultural competence as “the process in which the

healthcare professional continually strives to achieve the ability and availability to effectively

work within the cultural context of a client.” A compelling alternative label is diversity

competence (Butler, 2016). The need for education about the patient with a DSD/intersex

cannot be overstated (Alpert et al., 2017; Barthold, 2011; Braun et al., 2017; Brennan et al.,

2012; Cools et al., 2018; Jones, 2018; Kruse et al., 2018; Liang et al., 2017; Lindsay et al.,

2019; Rothkopf & John, 2014; Santori, 2018; Sherriff et al., 2019). This project aimed to

identify the problem statement as a lack of clinical education and nurses' cultural competency

with DSDs/intersex conditions. The advocacy of patients with DSDs, both culturally and


clinically, is resting in the fields of medicine. Nurse leaders are needed as DSD advocates in

legislation, hospital policy, hospital/unit education competencies, and caregivers. Although this

project cannot do this topic justice by covering every point that needs to be made, this

education will increase nurse literacy for patients with DSDs/intersex conditions. Nurses are not

equipped with DSD/intersex knowledge because it is generally missing from nursing and

hospital curricula.

PICOT Question

For registered nurses on a medical-surgical unit (P), how does an education module to

clarify the patient with a Disorders/Differences of Sex Development (DSD) condition (I),

compared to no education (C), effect clinical understanding and cultural competency (O) within

one month (T)?

Review of Evidence

A literature review was conducted to determine the evidence for support of this project

using five databases. An evidence matrix was implemented as a tool to organize research

information. The evidence matrix categorized the reference, purpose of the study, sample size

when applicable, independent and dependent variables if appropriate, the study's design, level

of evidence, critical results of the research, and a category to organize each article.


Description of the Search

A literature review was completed in the Spring and Fall of 2020 to examine

DSDs/intersex, cultural competency, and nursing education. Five databases were utilized for

this review: Medline, Cochrane, Ovid, Cumulative Index of Nursing and Allied Health Literature

(CINAHL), and Academic Search. Search terms were intersex, disorders of sex development,

differences of sex development, nursing, genetics, diagnosis, nursing education, the attitude of

health personnel, clinical competence, cultural competence, gender, sex, health disparities,

education and patient outcomes, curriculum, evaluation or assessment. Inclusion and exclusion

criteria were 2010-2020, peer-reviewed, scholarly journals, references available, English

language, and academic journals. Search terms were combined using the options unique to

each database. A summary of this table is in Appendix A.

Level of Evidence Results (LOE)

The studies' levels of evidence vary on the topics for the problem, intervention, cultural

competency, and outcomes (nurse/healthcare provider and patient). Due to the emerging

research on DSDs, qualitative and expert opinions are prevalent and valuable.

After review of five databases, seven systematic studies were chosen (Butler, 2016;

Horvat et al., 2014; Jones, 2018; Lindsay et al., 2019; Reeves et al., 2013; Sani et al., 2019;

Sherriff et al., 2019), one randomized controlled trial (Carpenter et al., 2015); one prospective

study (Haider et al., 2018), six cross-sectional studies (Liang et al., 2017; Maragh-Bass et al.,

2017; Miller et al., 2018; 2018; Purnell et al., 2018; Ross & Setchell, 2019; Sanders et al.,

2017), two qualitative studies (Braun et al., 2017; Thyen et al., 2014), and fourteen expert


opinions (Amies-Oelschlager et al., 2015; Barthold, 2011; Beale & Creighton, 2016; Bomalaski,

2005; Brennan et al., 2012; Carpenter, 2018; Johnson et al., 2017; Kano et al., 2020; Kruse et

al., 2018; Lee et al., 2016; Lee et al., 2020; Mitchell et al., 2018; Rothkopf & John, 2014;

(Tamar-Mattis et al., 2014). A level of evidence table is in Appendix B.

Categories for the literature review were developed based on fundamental concepts;

however, many studies overlapped in subject areas. When synthesized, they support educating

nurses to strengthen nurses' cultural competency, such as beliefs and attitudes.

Evidence Table/Matrix

An Excel evidence table/matrix was used to organize the study, purpose, sample,

independent and dependent variables, level of evidence, design, results, reference, and what

category the research supports. The matrix was divided into two sections, one with the formal

literature search results and the other with resources used outside of inclusion/exclusion

criteria that included Google, textbooks, and websites for governing bodies. Thirty-one articles

were obtained from the formal literature search in Spring and Fall 2020 and placed in the Excel

matrix. The Excel table is used as a standardized method for organizing the research for this

project and allows for easy retrieval of information.

Summary of Literature

The literature summary provides a synopsis of how the research supports this project. It

was organized into three general content areas, though many research articles overlap on

topics. The summary threads critical concepts for this project, such as identifying this patient

population's needs and experiences that shape the cultural context. Cultural competencies of


awareness, knowledge, skill, encounter, and desire are intertwined within studies. The

intervention to educate staff is the universal recommendation to enhance the patient

experience/outcomes and impact nursing attitudes.

Identifying needs

Perceiving the patient’s life experience is the foundation of becoming conscious of

cultural sensitivity. The introduction of the patient to adult care begins as a person utilizes the

hospital system for healthcare. Amies-Oelschlager et al. (2015) offered expert opinions about

the challenges of transitioning from pediatric care to adult gynecology, reinforcing that a

congenitally-based condition will require an inevitable transition to adult management with

consideration. The relationship during pediatric care is vital to consider, and the transition goal

is for it to be as seamless as possible, but this requires preparation (Beale & Creighton, 2016).

Initial adult care appointments are litmus tests for ongoing services (Beale & Creighton, 2016)

and are considered a vulnerable time for them (Cools et al., 2018). Some of the long-term

health issues should be conceptualized, such as bone health, fertility issues, risk of

malignancies, endocrine management, cardiovascular health, and psychological well-being

(Beale & Creighton, 2016). Transitioning from pediatrics to adult care is not emphasized a lot in

literature and finding adult expertise is difficult (Cools et al., 2018). This period of time is also

when sexual orientation and gender identity discussions may occur (Cools et al., 2018).

Circularly, this links back to the original discussion of the SO/GI data collection. Being culturally

competent begins with awareness of the patient’s life experience, including a likely gap from a

specialized care team in pediatrics to the adult hospital setting in which this project was aimed.


Terminology use is a prevalent topic of many studies (Barthold, 2011; Beale et al., 2016;

Braun et al., 2017; Carpenter, 2018; Johnson et al., 2017; Jones, 2018; Kano et al., 2020; Lee et

al., 2016; Lindsay et al., 2019; Miller et al., 2018). Some prefer intersex as a term, yet others

regard this term as too sensationalistic and confusing with the term transgender (Johnson et al.,

2017). Miller et al. (2018) highlighted the problem of discordant use of terminology, comparing

286 clinicians in different specialties regarding inconsistent uptake of nomenclature. They

examined frequency, comfort, why one term was used over another, and what words were

heard as urban language versus in a medical setting. Surveys asked what specific terms were

most comfortable to least comfortable. The term hermaphrodite was heard 68.2% in media by

provider users, but only 2.8% report using it to explain a patient’s condition to family. DSD

verbiage was the most often used term 60.9% of the time. The reasons for verbiage selection

were comfort, knowledge, confusion for patients/families, guidelines were lacking, or negative

branding with a term, all of which validate a barrier to communication exists for patients with

DSDs when they utilize different healthcare services. Johnson et al. (2017) recommended that

terminology use be approached with flexibility, as attitudes varied on existing options. They

interviewed 202 of 580 members of a national United States support group (AIS-DSDSG) and

found predominantly negative notions towards the term Disorders of Sex Development. Being

aware of current options and allowing the patient to guide the healthcare worker individualizes

care. While the DSD term was intended to create one term that was not offensive and assist in

medical legitimacy, it became unwittingly a possibly new offensive term (Johnson et al., 2017).

Medical personnel have had a quicker uptake to the DSD terminology (Johnson et al., 2017).


DSD is a formalized term used in literature and pediatric multidisciplinary clinics; therefore,

whether this term's uptake is agreed upon or not, nurses have to be familiar with it. The

selection of terms remains case-based to avoid unintentional psychological harm or deterrents

to care.

Sani et al. (2019) emphasized how preferred terminology use boosts confidence for a

patient. Sanders et al. (2017) considered interprofessional team members’ experiences,

utilizing 105 participants (professionals, pediatric patients, and parents) from 47 appointments.

Pertinent to this project, the questionnaires asked the name of the health condition and the

clinic's name. Participants, including team members, had inconsistent terminology for a DSD

clinic, using intersex, DSD, and specialists for sex disorders. Only 8% of professionals used

local or national guidelines even though they reported knowing them. Thyen et al. (2014) found

that a lack of care coordination was a problem for patients with DSDs. An updated consensus

statement supported by seven international governing bodies on DSD care provides occurrence

statistics, analysis of nomenclature use, and the importance of patient-centered care (Lee et al.,

2016).

To know the patient requires an approach and rationalization for why information is

sought. Maragh-Bass et al. (2017) discussed barriers to receiving care related to understanding

what the patient prefers when eliciting patient information. In another study, providers and

patients were surveyed, and eighty percent of providers thought the collection of sexual

orientation or gender identity would distress patients; eleven percent of patients reported it as

bothersome. In contrast, patients felt that providing this would provide personalized care,


whereas providers perceived enhanced patient-provider synergy as a benefit. This study has

implications for patient-focused care because the patients' feedback was different from what

the providers assumed, drawing on the fact that nurses must know their patients. Patients rated

sexual orientation and gender identity data as an essential topic to know (41.3% vs. 31.6%; p

<.001). Haider et al. (2018) also provided a patient-centered lens when they compared

approaches for how to best collect sexual orientation and gender identity data for sexual

gender minority patients verbally or nonverbally. The nonverbal collection was the preferred

method for sexual gender minority patients (mean [SD], 95.6 [11.9] vs. 89.5 [20.5]; p =.03),

which has implications for how to elicit information on sensitive topics with patients with DSDs

and provide patient-centered care.

Jones (2018) produced a unique collection on international intersex/DSD studies from

61 sources that examined nomenclature use, political group construction, and insight on the

lens through which patients are viewed, especially in research. Jones encouraged the

prioritization of patient-centered care, including terminology used (Jones, 2018). Regardless of

how one sees the inclusion of intersex in the LGBT political group, literature searches produced

some research articles with intersex included. Ross & Setchell (2019) examined LGBTI patients'

experiences while participating in physiotherapy, with 108 respondents. Surveys had themes to

them, such as feeling assumptions were made about them, unease with the observation and

proximity of their bodies, and lack of knowledge about their health issues. People with DSDs

can experience a lifelong focus of medical attention on genitals, sexuality, and genetics, which

requires some sensitivity training to consider the patient experience. Lindsay et al. (2019)


provided a review of 29 studies on gender-sensitive care, which involves training to alter

gender-based health inequalities, fourteen studies targeted gender-sensitivity, and 15 were

related to lesbian, gay, bisexual, transgender patients. The results did demonstrate that 37% of

the studies in review showed significant improvement in gender-understanding care. The

training content was terminology use, understanding gender issues, stigma, discrimination, and

increasing communication skills. Lee et al. (2016) emphasized the role of peer support and a

growing recognition of support groups as collaborative partners to healthcare professionals. It

is also essential to understand the ever-increasing legality of patient autonomy (Tamar-Mattis

et al., 2014).

Cultural Competency

According to the U.S. Health & Human Services, culturally competent nursing care

includes “personal attitudes, beliefs, biases, and behaviors” (Culturally Competent Nursing Care,

n.d., a). Cultural ingredients can impact family decisions for a patient with a DSD, including a

collaborative approach to gender (Ernst et al., 2020). Part of cultural competency is assessing a

patient’s unique cultural milieu in which they reside. A patient’s culture is vital in understanding

how a patient views having a DSD. The symbiotic relationship to this is realizing that nurses

need to become aware of their own attitudes to DSDs as patients are being assessed for how

they view having a DSD. Sanders et al. (2017) emphasized that attitudes are shaped by

education and experiences. Brennan et al. (2012) asked the nursing field to include LGBTI

patients in the definition of diversity and talk about attitudes and cultural awareness of these

populations. Butler et al. (2016) reviewed 56 studies, reporting that educational guidance was


the most common intervention to impact cultural competencies and that attitude towards a

population was most often measured.

Horvat et al. (2014) assessed cultural competence education effects, examining five

studies with 337 healthcare professionals and 8,400 patients. The studies focused on training

and outcomes. This project is useful because health behaviors improved (RR 1.53, 95% CI 1.03

to 2.27). Patient interpretation of healthcare workers was improved in the intervention group

(SMD 1.60 9%, CI 1.05 to 2.15), supporting training staff to increase patient satisfaction.

Zeeman et al. (2019) demonstrated, from reviewing 57 articles, that the LGBTI populations were

more likely to experience heteronormativity-related stressors and discriminations. The

recommendations were focused on improving the education and training of professionals and

reducing barriers to access care. Peer support is now considered a vital part of care yet not fully

developed for patient use (Lee et al., 2020). Whereas people with DSDs were once purposely

isolated in the belief that maintaining a secretive nature to the diagnosis was preferable, part of

culturally competent care is to extend the same supportive services to these patients as any

other patient would receive. Psychological support includes understanding the patient’s

response to care, procedures, or healthcare professionals. Nurses can assess the patient’s

support system – cultural norms, support groups, family, friends, and religion, to understand

what promotes resilience (Lee et al., 2020). The coping skills, attitudes, and socio-economics

should also be assessed (Cools et al., 2018). Care decisions are urged to be tailored because of

individual variations and cultural environments (Lee et al., 2020). Nurses are on the frontline of

patient advocacy and can support this by providing support group information to patients. Peer


support is an integral part of mental health, usually obtained through medical support groups,

which are quite visible today and can be located via the internet. Purnell et al. (2018) examined

1,220 physicians in ten departments at Johns Hopkins University School of Medicine for

perceptions of organizational cultural competence and teamwork for at-risk patients. Structural

workplace issues impacted the ability to recognize patient distrust, comparing major versus

moderate structural problems (OR: 2.01; 95% CI: 1.23-3.28, p <.0), and less than 50%

addressed cultural barriers (Purnell et al., 2018). Understanding workplace organization lends

itself to promoting workplace policies (structure) and educational training for cultural

competencies. Cultural competency is regarded as a virtuous cycle (Kruse et al., 2018), a

lifelong deconstruction and reconstruction (Mitchell et al., 2018), which challenges biases and

discriminatory tendencies.

Education, Evaluation, Outcomes

The need for education was a universal recommendation addressing this population.

Liang et al. (2017) demonstrated a critical vantage point looking at comparing knowledge and

training for medical students on transgender and intersex topics compared to lesbian, gay,

bisexual (LGB) curriculums. Knowledge and comfort with intersex health versus LGB health were

assessed. Of 713 students, 341 students answered one of two surveys that were offered. The

comfort with intersex health remained lower than LGB health for all four years. Self-reported

knowledge of LGB versus intersex was p < 0.001; self-reported comfort of LGB versus intersex

was p < .001. The conclusion was that knowledge of intersex health falls behind that of the LGB

population (Liang et al., 2017). Of the five patient categories, the intersex patient was most


requested to learn more about from free responses on the survey options: 25 for the intersex

patient compared to 6 for lesbian, 3 for gay, 1 for bisexual, and 22 for transgender patients

(Liang et al., 2017). This gap supports the need to offer focused education for the DSD/intersex

population.

Rothkopf & John (2014) provided nursing with a thorough DSD educational summary

and clarified the nurse's role as an advocate. Bomalaski (2005) provided clinical education to

urology nurses about DSDs with an evaluation tool. Braun et al. (2017) addressed educational

reform by considering a new approach to educating LGBTI. This study utilized four medical

schools, with 550 participants using Likert scales, to evaluate the course structure's impact and

effect. Results were that participants had improved comfort interacting with LGBTI (p <.01),

knowing where to find information (p <.01), and confidence in gathering medical history (p

<.01). Reeves et al. (2013) reviewed 15 studies and summarized that interprofessional

educational interventions produced positive outcomes in seven articles, including workplace

culture and patient satisfaction. Butler (2014) cited that provider education is a common

intervention for developing cultural competence and changing provider attitudes. Other

benefits were staff readiness to provide care (Braun et al., 2017), improved patient-provider

relationships, and improved health behaviors (Buter, 2014). Thyen et al. (2014) studied several

topics specific to a patient with a DSD, one of which was understanding patient satisfaction.

They studied 110 adults from Germany, Austria, and Switzerland using a Likert scale and the

type of DSD the patient had, which correlated to satisfaction. The Xy-females had less

satisfaction than women with congenital adrenal hyperplasia. Half of the women reported a low


quality of care. Poor patient satisfaction was reported as correlational to the rarest conditions.

As previously stated, initial appointments in adult care are an early indication of the utilization

of ongoing care and endocrine management (Beale & Creighton, 2016).

Carpenter et al. (2015) conducted a randomized controlled study to use the Health

Beliefs Attitudes Survey with 180 medical students in a 2010 class in two formats: traditional

lecture or web-based. The results demonstrated the importance of asking the patients’

perspectives, beliefs, cultural context, and the concept of good health, which resonates with

application to the DSD population for this project. Student opinions and beliefs improved,

respectively (4.88, 5.10 p <.01; 4.49, 5.08, p <.001). This study aligns with patient-centered

care and provides an applicable survey to use for this project.

In summary, while the research on DSDs/Intersex has been maturing over the last 20

years, there are studies and expert opinions to guide advocacy for this vulnerable population.

By gathering the myriad research and synthesizing it to shape cultural experiences, nurses can

better understand their role in caring for patients. Workforce development is common

throughout articles; yet, few have focused solely on the DSD/intersex patient.

Frameworks

The frameworks for this project include The Iowa Model of Evidence-Based Practice to

Promote Quality of Care by Marita G. Title (Melnyk & Fineout, 2015), a nursing theory called

Twenty-One Nursing Problems by Faye Abdellah (Pitripin, 2016), and a cultural competency

model by Dr. Campinha-Bacote called Cultural Competence in Healthcare Delivery (Campinha-

Bacote, 2002). Each framework will guide different parts of the project. The evidence-based


model generates the basis for identifying the need for this intervention (an educational need),

and research was gathered to support this project. The nursing theory aligns with the approach

to care. There is a recommendation to know the patient and individualize care in research (Lee

et al., 2020). The cultural competency model guides the definition of culture in this context,

stating that it is a process of development (Campinha-Bacote, 2002). Each of the chosen

models is operational to this project.

Evidence-Based Model

The Iowa Model of Evidence-Based Practice to Promote Quality Care developed by Marita

G. Titler was applied to this project (Melnyk & Fineout-Overholt, 2015). A model provides a

guide to evaluating appropriateness to change in practice, implementing the change, evaluating

and monitoring the process, and gathering outcome data then disseminating results (Melnyk &

Fineout-Overholt, 2015). Titler’s model requires identifying a trigger, in this case, a

knowledge-focused trigger (Melnyk & Fineout-Overholt, 2015). Whether this is a priority for the

organization must be considered. Intersex was included in the SO/GI training for the LGBT

patient population but only given minimal reference; therefore, this additional training

complements the stakeholders' current educational aim. It supports accurate SO/GI data entry.

It strengthens and clarifies clinical and cultural knowledge to provide comprehensive care,

which could enhance outcomes for patients with intersex/DSD conditions. This model formed a

team to gather, develop, evaluate, and implement change. This model, as applied to this

proposed DNP project, is shown in Appendix C.


Theoretical Framework

Faye Glenn Abdellah's conceptual framework, called Twenty-One Nursing Problems, is

applied to this project (Petripin, 2016). This theory was chosen to emphasize patient-centered

care and combine nursing's art and science (Petiprin, 2016). The physical, emotional, and

psychological needs of patients and interpersonal relationships between the nurse and patient

are accentuated (Petiprin, 2016). The model allows for individualized care, recognizing physical,

emotional, and sociological nursing care goals. It has a ten-point explanation of nursing as a

service and steps to identify the 21 nursing problems, which begin by learning to know the

patient (Petiprin, 2016). This theory recognizes poverty, race, pollution, education, and other

things influencing health care (Petiprin, 2016). It urges the development of nurse leaders to

advocate for underserved patients and to alter nursing education for these needs (Petiprin,

2016). This model is applied to the care of the DSD patient because it guides recognizing the

patient's nursing problems, sorting out relevant patient data, utilizing available research about

patients with DSDs, and identifying a therapeutic plan. It aims to reduce discomfort for the

patient, validates the patient’s conclusions about their health issues, and assesses the patient’s

attitudes and beliefs. It encourages nurses to know the patient, includes the patient/family in

care decisions, examines their attitudes and beliefs about the patient’s problems, and develops

a patient-centered nursing care plan.

The theory guides nurses to assess how the patient is responding emotionally to issues

of medical care. It includes cultural awareness principles, such as socioeconomics, education,

race, and miscellaneous things to influence care, gender, and sexuality. Most importantly, the


nurse is encouraged to know the patient and to include the patient and family in the care

(Petiprin, 2016). The model for this theory is shown in Appendix D.

Cultural Competency Framework

The cultural competency model chosen to guide this project is by Dr. Campinha-Bacote,

called The Process of Cultural Competence in the Delivery of Healthcare Services, (2002). It has

five domains - knowledge (educational base), awareness (of self), skill (to perform an

assessment), encounters (direct engagement), and desire to change (Campinha-Bacote, 2002).

An essential emphasis of this model is that cultural competence is a process (Camphina-Bacote,

2002). It is an applicable model to use with any number of validated tools. It includes one’s

attitudes, prejudices, biases, and stereotypes. The Health Belief Attitudes Instrument Survey

(HBAS) tool is operational to this project and is congruent with this conceptual framework and

patient-centered care plan. The nurse must have the desire to advocate for this patient

population and be driven to provide excellent care. Knowledge comes from educational training

and encounters, such as this project. Awareness and attitudes come from learning more and

doing self-examination. Skills are the focus of tactfully knowing the patient and finding out

what their definition of patient-centered care is, and demonstrating the art and science of

nursing for patients with DSDs. The history of care in this project is of western medicine in the

United States. Patients with DSDs are worldwide. Immigrants with different homeland norms

may require additional cultural awareness of how DSDs/intersex conditions are perceived within

a non-western context. All of the cultural implications of ethnicity, linguistics, folk medicine or

home remedies, and socioeconomics associated with cultural competency coursework still apply


but not the focus of this specialized training; instead, they would be additional layers of

consideration per patient.

Project Proposal

The project proposal was to educate registered nurses on a medical-surgical urology

unit about DSDs/intersex conditions and apply cultural competency concepts to be

incorporated into care of this patient population. Nursing beliefs and attitudes, as aspects of

cultural competency, will be evaluated. While nurses are often familiar with generalized cultural

competency coursework related to ethnic differences, linguistics, and religious beliefs, this

expands generalized coursework directly applied to the DSD/intersex population. The nursing

education consisted of (a) familiarizing staff to the SO/GI data collection; (b) recognition of

patients with DSDs/intersex and differences between DSDs/intersex versus transgender

patients (Lee et al., 2016; Liang et al., 2017), (c) identity politics (Jones, 2018), (d) history of

care and evolution of terminology (Barthold, 2011; Braun et al., 2017; Carpenter, 2018; Jones,

2018; Kano et al., 2020; Lee et al., 2016; Lindsay et al., 2019), (e) essential knowledge of

embryonic development and sex differentiation (Bomalaski, 2005; Rothkopf & John, 2014), (f)

incidence (Lee et al., 2016), (g) transition of care from pediatric to adult care (Amies-

Oelschlager et al., 2015, Beale & Creighton, 2016), (h) individuality of people with DSDs (Jones,

2018), and (i) patient-centered care (Maragh-Bass et al., 2017). There will be a video for a

simulated patient encounter (Quinn, 2016). The tenants of cultural competency are knowledge,

awareness, skill, encounters, and desire (Campina-Bacote, 2002). Knowledge involves clinical

training on DSDs, terminology inconsistencies, identity politics, occurrence rates, history of


care, and patient-centered approaches to care. Knowledge and cultural competency require

understanding the life experiences of this population. Awareness requires nurses to self-

analyze biases, incorrect assumptions, attitudes, and beliefs. Skill includes the ability to provide

tailored care and assessments. A skill could include knowing terminology but allowing the

patient to guide the preference to what is used, for example. Patient encounters are direct

engagement experiences with patients and will be simulated with the video of a person with a

DSD. Personal encounters challenge existing nursing beliefs. Desire means the nurse wants to

become becoming culturally sensitive and literate.

Nurses were educated on clinical information about DSDs/intersex conditions to clarify

this patient population. Nurses were provided with a broad overview of patients' life

experiences with DSDs/intersex to promote aspects of cultural competency (nursing beliefs and

attitudes) when caring for them. Pre-and post-evaluation was done using a validated tool called

the Health Belief Attitudes Instrument Survey (HBAS) and the Clinical Knowledge DSD/Intersex

Questionnaire. Evaluation sessions were provided at three intervals, pre-education, post-

education, and one-month post educations to measure knowledge retention. The evaluation

results were summarized to assess the effectiveness of the program.

Population and Setting

The setting was a large midwestern hospital in Cincinnati, Ohio. The population of

participants was 19 adult healthcare workers. Three participants were registered nurse

educators, six were medical-surgical registered nurses, one licensed practice nurse, seven were

senior nursing students, and two were personal-care-attendants (PCA). The setting was a


medical-surgical urology unit with a 22-patient accommodation. People with DSDs can have

urogenital anomalies and receive care on such a unit, which lends itself to this location's

appropriateness. An educator on the unit offered support for this project. The site was chosen

because of its applicability, support, and availability. The classroom to teach is in the same unit,

close to the staff nurses. A Lunch-and-Learn educational opportunity was offered in three

back-to-back sessions to allow for flexibility with the nursing workflow and comply with the

COVID-19 pandemic policies for gathering sizes. Incentives were provided for staff

participation (a meal and gifts) using personal funds. The unit educator posted advertisements

for the Lunch-and-Learn on the unit.

Intervention

Classroom Education. There are many pedagogical approaches considered in providing

education to this population of learners. There are lectures, simulations, online learning, role-

playing, case studies, discussion/debating, and problem-based learning methods to consider

(Xu, 2016). Patient panels are also an effective method to promote empathy (Brennan et al.,

2012). Selig (2006) demonstrated that discussion and interactive exercises had more impact on

participants in learning cultural competence Movies/videos and lectures were also useful

methods. The knowledge of andragogy implies that adult nurses will be inwardly motivated to

learn. This project was trialed with a small group of nurses in a classroom setting, and the aim

is a future expansion to an e-LEARN hospital-wide module and publication. There are

advantages and disadvantages to virtual and live classroom teaching. Virtual learning allows

nurses to do coursework at their own time and pace, reach more learners, and provide optimum


tracking and evaluation. One significant disadvantage of online learning is the lack of

interaction with learners. This pilot project used a live classroom setting with a PowerPoint that

guided the course. A live class allowed assessment of the program and feedback from

participants, allowing them to make changes before reaching a broader audience (such as an E-

LEARN). For example, at the beginning of the education, participants were asked to participate

by answering what they thought intersex was, whether it was the same thing as transgender,

and what they thought of when they thought of the word intersex. This spontaneous dialogue

allowed the educator insight into what the participants thought, and it demonstrated the need

for this project in real-time. An advantage of the live classroom session is elaborating on parts

of a topic and answering questions.

The body language of the instructor can be a useful classroom tool to emphasize

emotion. Non-verbal skills in instructors have influenced students' moods (Bambaeeroo &

Shokrpour, 2017). Students can receive non-verbal influences without even realizing it

(Bambaeeroo & Shokrpour, 2017). Speaking gives the instructor freedom for instinctual verbal

fluctuations or body language changes to inspire the learner (Bambaeeroo & Shokrpour, 2017).

It also allows the instructor to assess the learners’ body language, make adjustments, and

evaluate learner comprehension. This spontaneity cannot be achieved virtually. This project

aimed to teach new layers of scientific knowledge on DSDs/intersex. It was intended to inspire

nursing beliefs and attitudes for a vulnerable population who deserve advocacy. Teaching

cultural competency principles beckons a relationship to form between the instructor and the

learner. As Dr. Campinha-Bacote’s model for cultural competency depicts, desire must exist in


the process of becoming competent. Desire generates the will to provide better care to impact

the patient experience. The challenges or disadvantages to a live Lunch-and-Learn program

were minimal attendants and disjointed listening by nurses entering and exiting the room.

However, this was a minimal issue for all three sessions.

PowerPoint. A 30-minute PowerPoint with discussion guided the Lunch-and-Learn. The

PowerPoint topics that were covered were defining what DSD/intersex is, why it is a relevant

topic, introduction to SO/GI data collection and the electronic health record (EHR), the evolution

of terminology and why it matters, types of DSDs/intersex, essential embryonic development,

discussion of a few specific DSDs/intersex conditions, history of care, pediatric to adult care

gaps, political group inclusions, assessing a patient’s cultural milieu and nursing impact on

patient care, hospital policy, and legislation. The video of Emily Quinn, who has a DSD/intersex

condition, was embedded in the PowerPoint (Quinn, 2016). The closing portion was applying

the Campinha-Bacote model to the care of patients with DSDs/intersex conditions. The

discussion with the PowerPoint began after each participant turned in the initial pre-education

survey. The gender identity EHR screenshot used to collect SO/GI data that this hospital is

currently using can be found in Appendix E. The outline of the PowerPoint is in Appendix F.

Video. In collaboration with Emily Quinn, a woman with a DSD/intersex condition called

Androgen Insensitivity Syndrome (AIS), an online video was retrieved and used with permission

for the educational PowerPoint (Quinn, 2016). This short video was embedded in the PowerPoint

to serve as a simulated patient encounter. Dr. Campinha-Bacote’s cultural competency model

includes patient encounters as a tenant of the model. Since a patient encounter could not be


produced at whim for nurses, this served as a patient encounter. A video allowed for

DSD/intersex advocacy by providing a genuine experience for this stakeholder. The YouTube

video can be found at https://www.youtube.com/watch?v=5vDVUPjBJiM (Quinn, 2016).

Organization. In collaboration with the unit educator, preparation for the educational site and

method was planned for approximately six months. Planning including COVID-19 pandemic

policy-related adjustments. The following were organizational components: the date and time

frame for the room reservation, length of each session, incentives to use and obtaining them,

creation of an advertisement and a sign-in sheet for participants’ name and email, large manilla

envelopes to store the completed pre-and post-education surveys, food order and delivery

plans related to COVID-19 restrictions, creation of a Checkbox web-based survey and

preparation of the final email with instructions for the last survey with the link, one month after

the Lunch-and-Learn.

Due to emergent policy changes related to the COVID-19 pandemic, adjustments were

made. Training rooms were restricted to 50% of maximum occupancy, so classrooms hosted

about eight people at a time. This restriction required three back-to-back Lunch-and-Learn

sessions, with each being approximately 45-minute time blocks and 15 minutes between each

course to clean. The PowerPoint discussion was around 30 minutes, and the pre-and post-

education surveys, sign-in, and gift entries were allotted for about 10 - 15 minutes. Due to

COVID-19 policy, face masks were required, and individual pens were provided for sign-in and

survey completion. Hand sanitizers were in the room, and surfaces were disinfected between

users. The food was planned and ordered the day before the course for approximately 30


attendees. The food delivery was limited to the hospital lobby due to COVID-19 restrictions. A

medical assistant on the unit volunteered to transport it to the classroom. Drinks and desserts

were brought in with the rest of the supplies. The location of the classroom was located in the

medical-surgical urology unit. The course was scheduled for October 28, 2020, and the

classroom was reserved for that day. The classroom was small, and a projector was not

available, so a personal laptop computer using hospital wireless internet was utilized for

sharing the PowerPoint. The room was arranged to accommodate COVID-19 policy spacing,

create flow for signing in, entering their name for a prize, and viewing the PowerPoint. The

large whiteboard had the presentation's title, as attendants had no prior information on the

Lunch-and-Learn contents. Instructions were also located on the whiteboard to sign in, provide

an email address, and be aware that three surveys were being requested to complete this

program. Advertisements for the Lunch-and-Learn were posted on the unit walls with the date

and three available times. The educator actively recruited available nurses, medical assistants,

managers, and educators to attend in real-time. Participants used their meal breaks and/or

personal time without added cost to the hospital.

Incentives were offered for attendance. Lunch and individually wrapped cookies were

provided. Each participant was given the opportunity to enter their name into nine gift

drawings. Nurses were allowed one entry per gift package. The winning names were selected

after the last session, and gifts were distributed. Participants were instructed to sign in for

attendance upon coming to the classroom and providing an email. The email was required as a

means to contact them for the one-month final post-education questionnaire. Although


participant names are on a master list, the coding-maintained anonymity. They continued to

use the same coding for all three surveys. The project team researcher created a Checkbox

web-based survey (Checkbox Survey Incorporated, 2002-2020) that learners utilized for the

third survey. This option was chosen due to convenience for all and because some participants

were nursing students who would be more challenging to track down. The final survey one

month after the Lunch-and-Learn was used to measure retention, although there were risks of

a ceiling effect (Carpenter et al., 2015) or non-participation altogether.

One month after the Lunch-and-Learn, an email was sent to participants with

instructions and the link to the Checkbox web-based survey. They were offered a final $5

Starbucks gift card upon completing the last survey by replying with their mailing address, then

mailing the gift card to them.

The pre-and post-education questionnaires consisted of the clinical knowledge

questions created for this project and the validated HBAS tool. The only difference with the

post-education clinical education tool is the final question asking if the education changed

their knowledge and understanding regarding individuals born with Disorders or Differences of

Sex Development/Intersex. If the answer was yes, they were to explain how it changed their

knowledge and understanding with a space to write in whatever they wanted to. The

participants took the pre-education survey immediately after signing in to be efficient and

manage the time. After the PowerPoint presentation, they took the post-education survey.

The completed surveys were placed in manilla envelopes marked pre-and post-surveys.

The completed surveys were faxed to the project team researcher for scoring. The details of


this are found in the evaluation section of this paper. Upon completing the Lunch-and-Learn, a

$100 gift- thank-you card was provided to the educator for her assistance. An additional $100

gift card was provided to the team researcher upon completion of the survey scoring. The

advertisement for the Lunch-and-Learn is in Appendix G.

Data Collection Tools

The data collection tools included the following: (a) a validated cultural competency tool

called the Health Belief Attitude Survey (HBAS) (Dobbie et al., 2002) and (b) a brief questionnaire

measuring Clinical Knowledge DSD/intersex-specific content, with one open-ended question.

The two survey questionnaires are coded to track the same learner for all three submissions

while maintaining anonymity. The coding for the questionnaires is explained in the evaluation

section of this paper.

Cultural Competency – Health Beliefs Attitudes Instrument Survey Questionnaire Tool

(HBAS). The HBAS tool was chosen due to its operational fit for this project, the number of

questions it possesses, and its accuracy. It examines nursing beliefs and attitudes. It has

rigorous psychometric measures, with excellent reliability and validity, and is of an ideal length

for a 30-45 minutes allotment of time, consisting of 15 questions (Medrano & Dobbie, 2002;

Corley et al., 2015). While many cultural competency/attitude tools exist, other tools can have

25-100 questions. This project's tool had to be generalizable, operational, have validity, and

have a user-friendly number of questions. This scale has four domains to measure cultural

competency beliefs and attitudes: (a) opinion, getting to know the patient’s views, (b) belief,

knowing the patient’s belief toward treatment, (c) context, understanding the patient’s


psychosocial culture, (d) quality, knowing the patient’s perspective for what appropriate care is

(Carpenter et al., 2015). This tool aligns with the patient-centered care that is woven

throughout this project. It focuses on nurses' desired change: their beliefs/attitudes when

caring for patients and, in this case, applied to patients with DSDs/intersex conditions. Due to

the broadness of cultural competency and the expectation that cultural growth continues over

the nurse's life, this narrows the focus on changing nursing beliefs and attitudes and is

expected to be part of ongoing lifelong training. It was administered as a pre-and post-

education questionnaire, then again one month after the education via email to measure

retention. Each person had a coding system to thread their three evaluations together with

anonymity. This tool's 15 questions were scored using a 6-point Likert scale, one being the

lowest confidence score and six being the highest confidence score. The outcomes compared

the pre-and post-educational questionnaires to demonstrate whether nursing beliefs and

attitudes had changed. Final data collection compared the pre-and two post-education

questionnaires with summarization. The explanation of the evaluation technique is discussed in

the Evaluation section of this paper. The HBAS questionnaire is located in Appendix H.

Clinical Knowledge-DSD/Intersex Questionnaire. A brief clinical knowledge of the

DSD/Intersex questionnaire was created for pre-and post-evaluation using a Likert scale, with

an open-ended question added to the post-evaluations. The pre-education has four questions,

and the post-education has five questions. The goal of this set of questions goes back to the

original PICOT question of being able to clarify the patient with a DSD/intersex condition. The

questions are as follows: (1) Intersex is the same thing as transgender (True, False, I don’t


know, as answer options), (2) Disorders, or Differences of Sex Development (DSD) are the same

as transgender (Yes, No, as answer options), (3) I have heard of the term Disorders or

Differences of Sex Development (Yes, No, I don’t know, as answer options), (4) All patients with

a DSD/Intersex condition identify as members of the Lesbian, Gay, Bisexual, Transgender

(LGBT) political group (True, False, I don’t know, as answer options), and (5) Did this education

change your knowledge and understanding regarding individuals born with Disorders or

Difference of Sex Development (DSD)/Intersex? (Yes, No, If yes, explain how with blank lines to

free-write in an answer. The questionnaires are identical until the last question on the two

post-education surveys, which allows the participant to personalize a response regarding how

the education did or didn’t change their knowledge of DSDs/intersex. Immediately after the

education session, the first post-education questionnaire was provided. Approximately one

month later, the final post-education questionnaire was sent to participants. The email

provided a link to the Checkbox online survey tool, with the same coding technique, and an

incentive gift provided to the learner upon completing it. Evaluations compared pre-and post-

education clinical knowledge to clarify the patient with a DSD/intersex content. The pre-

education questionnaire is in Appendix I. The post-education questionnaire is in Appendix J.

This project aimed to educate nurses and healthcare workers about DSDs/intersex and

introduce cultural competency applications for this patient population, focusing on nurses'

beliefs/attitudes. A newly developed educational PowerPoint (PPT) guided the teaching sessions.

Hospitals care for a growingly diverse community of people. Shifting societal norms and

scientific discoveries continually challenge the nurse’s personal beliefs and attitudes. Due to the


time constraints of this intervention, the essential points were summarized. The PowerPoint

included a definition of DSD/Intersex, Sexual Orientation/Gender Identity (SO/GI) introduction,

political group inclusions, examples of DSDs/intersex, history of care, cultural milieu/life

experiences, the transition from pediatrics to adult care hospitals, a simulated patient

encounter and cultural competency model with the application. A video of Emily Quinn, an

individual with Androgen Insensitivity Syndrome, was provided as a patient simulation (Quinn,

2016). Nurses were challenged to become self-aware of biases, beliefs, and attitudes. The

process of becoming competent begins with self-analysis. In this context, nurses were

challenged with the concept of ethnocentricity by realizing their life experiences are not

everyone’s life experiences. Awareness involves an awakening, realizing the cultural

attributions that others experience with having a DSD/intersex condition. A post-presentation

discussion to answer questions and offer additional resources concluded the teaching session.

The cultural competency model tenants were reinforced in the presentation – awareness,

knowledge, skill, encounters, and desire. The emphasis was on individualized care, becoming

literate on DSD/intersex conditions clinically and culturally, allowing the patient to guide the

medical visit, and being aware of nursing beliefs and attitudes.

Research shows that educating staff is an essential intervention to support patients with

DSDs/intersex conditions (Alpert et al., 2017; Barthold, 2011; Braun et al., 2017; Brennan et al.,

2012; Jones, 2018; Rothkopf& John, 2014; Kruse et al., 2018; Lee et al., 2020, Liang et al.,

2017; Lindsay et al., 2019; Santori, 2018; Sherriff et al., 2019). Education provides enhanced

readiness for patient care (Braun et al., 2017).


Strategic Planning

Upon analysis of strengths, weaknesses, obstacles, and threats to this project, strategic

planning was considered. The project planning required ethical considerations such as

obtaining the designation of this as a quality improvement project versus a research project by

Mt. St. Joseph University and the hospital where this project was conducted. The stakeholders

who would be involved in this project were identified. Driving forces were recognized, and

restraining forces that would hinder this project's progression needed to be addressed. This

project was active amid the COVID-19 pandemic.

Ethical considerations

Ethical considerations for this project included the nurses as the participants. The

Institutional Review Board (IRB) determination was sought through Mount Saint Joseph

University (MSJ) and hospital IRB, both of which were obtained and categorized as a quality

improvement project. Due to the rare patient population that this education is designed for,

patients will not be directly involved in any data collected in this project. The pre and post-test

questionnaires for the nurses do not have any identifiers on the forms to protect anonymity and

were voluntary, but with incentives, as already outlined. Nurses/staff were invited through

flyers posted on the unit walls. Team members for this project are the team leader, a research

nurse with a Ph.D., a unit educator with a DNP, and a student of this project, all of whom have

current Human Subject Protection (HSP) per training Citi Training. As mentioned, there were

incentives for meals and door prizes for attending the education class.


The Citi Training certificate is located in Appendix K. The Mt. St. Joseph University IRB

letter stating this as a quality improvement project is in Appendix L. The hospital IRB letter

displaying this as a quality improvement project is in Appendix M.

Stakeholders

Key Stakeholders in this quality improvement project were those with interest or

influence with its success. The most important stakeholder is the patient with a DSD. Patients

are consumers, with many hospital choices in this midwestern area, and they will go where they

are most satisfied. This project's primary focus is to improve the patient experience by

educating and enhancing nurses' and staff members' cultural competency about DSDs/intersex

conditions. Additional stakeholders were the nurses on the unit where the education will occur,

senior nursing, and organizational leadership, including the diversity and inclusion team. This

project took place on a medical-surgical urology floor where adults with DSDs may be receiving

care; therefore, it supports physicians and hospitals' work to have educated staff. There were

governing bodies to consider as stakeholders. Accrediting bodies such as the Joint Commission

include cultural competency as a standard of quality (The Joint Commission, 2020). On a

national level, the United States Health and Human Services Office of Minority Health considers

cultural competency a national standard (National CLAS Standards, n.d., b).

Driving Forces

Several driving forces to this project existed - the ethical nature of advocating for a

vulnerable population, current work by the diversity team for SO/GI education, SO/GI data

collection, and cultural shifts with LGBTQI political activism. The project was designed to


complement the SO/GI education implemented by the hospital in 2020. Due to the pandemic,

the diversity team experienced job furloughs, and email correspondences ceased, but the

project was able to continue due to the support of the unit educator on the medical-surgical

unit where the project took place.

Restraining Forces

Restraining forces for this project have been the unplanned COVID-19 pandemic, with

the government placed restrictions on facilities that halted practicum hours. The diversity team

of the hospital experienced a lengthy work furlough and became unresponsive to inquiries. The

COVID-19 guidelines changed how the classes had to be conducted – room occupancy was

restricted to 50%, which meant multiple teaching sessions were required. Additional measures

were mandated, such as having individual pens, hand sanitizers, desks required disinfection

between users, and meal delivery required someone to retrieve the food from the lobby. The

national support group meeting was offered virtually this year due to the COVID-19 pandemic.

The IRB determination process required several explanations to obtain authorization to proceed

as a quality improvement project. The nature of the voluntary Lunch-and-Learn training risked

a fragmented learning session and a possible low turnout. Unfortunately, the school-based

grant funds that would generally support food and incentive gifts were denied due to a COVID-

19 rule pertaining to in-person meetings, which required personal funding. Despite obstacles,

none of them proved to be detrimental to the completion of this project.


Budget

This project's budget involved nurse attendance incentives - nine gift packages

(toiletries from Bath and Body Works, including unisex items), a box of ink pens, a meal

estimated to be about $100, and thank you gifts for team members who helped with this

project which were $200 total. The meal was pizza, cookies, and drinks. Due to COVID-19

restrictions, the school presentation required a digital poster. The poster for display on the unit

and future conferences cost about $100.00. Using the adult learning theory of andragogy,

nurses who attended would show willingness and interest to participate in this program.

Personal drive is also part of the Campinha-Bacote model of having a desire to become better

(Campinha-Bacote, 2002). Nurses attended using their own time with no added cost to the

hospital. The educational flyers and questionnaire surveys were approximately $35.00 in

printing costs. The gift cards for the third survey were $5 each for 19 participants, with ten

participants. The remaining cards were gifted to the educators on the units for support of this

project. Two conference opportunities arose through the Sigma Theta Tau International Honor

Society, nationally and internationally. The national conference in November, 2021, was

supported by hospital funding costing $679.00. The cost to drive from to and from Cincinnati

to Indianapolis is approximately $60.00, food costs for the weekend are approximately $100.00

and one night at the conference hotel is approximately $180.00, which will be out-of-pocket

costs. The international (virtual) conference in Singapore in July, 2021, was funded by Mt. St.

Joseph University costing $300. The budget summary table is located in Appendix N.


Milestone Timeline

The timeline of this project outlines requirements for milestone accountability. It began

in January 2020 and ends in April 2021. During Spring and Fall 2020, a literature review was

conducted. Faculty approval for the project and the IRB determination by Mt. St. Joseph

University and the hospital were also obtained in Spring 2020. Permission to use the Health

Belief Attitude Instrument Survey was obtained in Spring/Summer 2020. The approval to

proceed with the PowerPoint for the education session was obtained in Fall 2020. The Lunch-

and-Learn education on nursing cultural competency and DSD/intersex knowledge was

conducted in October 2020. Pre- and post-education questionnaires three intervals, before the

instruction and one immediately after the Lunch-and-Learn (October 2020) and a one-month-

after education evaluation (November 2020), with data collection completing fall 2020. The

final paper submission and poster/podium presentation will be in Spring 2021. The summary

timeline is in Appendix N.

Evaluation of Evidence-Based Project

The program's evaluation utilized two questionnaires, the Health Belief Attitudes

Instrument Survey (Dobbie et al., 2002) and the Clinical knowledge of DSD-specific

questionnaires. As stated, they were offered a total of three times as a pre-evaluation, post-

evaluation, and a one-month follow-up. The evaluations were anonymous, and a five-digit code

tracks each participant’s knowledge before and after the training session. It comprised the

following: the day of the learner’s birthday and the first three letters of their mother’s first

name. An example might be January 15, 1970, and a mother’s birthday is Catherine = 15cat. If


they chose not to use the mother’s name, they could use the letters ABC, but the code had to

remain consistent on all three evaluations. The emails were sent to all 19 participants with

instructions and the link for Checkbox web-based data management survey tool. The survey

collected the nurses’ five-digit code, answers to the four post-education knowledge questions,

and answers to the 15 HBAS questions. The purpose of tracking all three survey results was to

measure participants’ changes in knowledge, attitudes, and beliefs.

The scores were entered into a spreadsheet, one row per learner. The subject

identification had the code that the learner created. Each learner’s answers to the pre-and

post-question were entered in their identified row. The spreadsheet was scored after all three

completed surveys were collected. Reverse code scoring was used for questions that are

negatively worded (questions 3, 5, 7, 15). The overall average scores were calculated and

averaged for the four components of the scale: a. importance of assessing patients’

perspectives and opinions (opinions, questions 1,3,6,10,13); b. importance of determining

patients’ beliefs for history taking and treatment (belief, questions 2,4,8,11); c. importance of

assessing patients’ psychosocial and cultural contexts (context, questions 9,12,14); d.

importance of knowing patients’ perspectives for providing good health care (quality, 5,7,15).

A Wilcoxon Signed Ranks Test was used to determine any significant differences pre versus

post educations in the overall mean score or the mean score of any of the scale's four

components.

There were nineteen participants in the three sessions for the Lunch-and-Learn who

completed the pre-and post-evaluations. Ten of the learners were registered nurses (RN’s) – 3


were nurse educators, seven were nursing students, and two were personal care attendants

(PCA’s). A total of ten participants completed the survey one month after the education.

Clinical Knowledge Questionnaire

The clinical knowledge questions were to gauge what learners knew about terminology and

political group assumptions before and after the education. It also aimed to elicit what/if an

educational change of knowledge and understanding they gained from this in-service with a

chance to free-write an explanation. The question, “Have you heard of the term Disorders or

Differences of Sex Development (DSD)?” 47% (9 learners) answered yes, and 53% (10 learners)

marked no as a baseline before the education. After the instruction, 100% (19 learners) said

yes. One month later, the results were that 100% (ten learners) marked yes. The result was a

statistically significant increase in the percent of nurses who have heard of DSD after the

education (100%) compared to before the teaching (47%), Fisher’s Exact p=0.0004. The graph

for this is in Appendix P.

Three questions that offered true/false/I-don’t-know options were asked as a baseline

before, immediately after, and one month after the education. The questions were, “Intersex is

the same thing as transgender; Disorders or Differences of Sex Development (DSD) is the same

thing as transgender; and all patients with a DSD/Intersex condition identify as members of the

Lesbian, Gay, Bisexual, Transgender political group”. Before receiving education, 53% of

healthcare workers surveyed for this project reported never having heard the term DSD. Fifty-

eight percent of learners didn’t know intersex was not the same thing as transgender. The

baseline pre-education results were 32% (6) had none correct, 37% (7) had one right, 21% (4)


had two correct, and 11% (2) had all three correct. The post-education results were that 21% (4)

had two correct and 79% (15) had all three correct. A Wilcoxon signed-rank test was used to

compare the paired data. There were significantly improved knowledge scores after the

education (median = 1 correct) compared to before the education (median = 3 correct),

Z=3.62, p=0.0003. The graph for the clinical knowledge baseline, pre-and-post education

comparison is in Appendix Q.

Immediately after the education and at one-month after the education, 100% of the

respondents answered yes to whether this seminar changed their knowledge and understanding

of DSDs. Learners were given an option to free-write how their knowledge and understanding

had changed. The following were their responses:

• I better understand the make-up of someone with DSD and how I can help with their

care

• I learned things I didn't know before coming today

• I didn't realize all the different information and type of conditions

• Differences in the androgens/how they change to estrogens

• I had heard of DSD from LPN school, but this definitely expanded on the knowledge I

had on this subject

• A new topic for me gave me an insight on what they are… and what they go through

• Learned more about how hormones work in these conditions that I did not know of prior

• Yes, I never heard of intersex

• I had never heard of DSD before this education

• I had no idea this was something that even existed

• It's very interesting to learn about intersex. I never knew there was a term for it. I just

wonder how they learned about their differences

• I had no knowledge of this. I greatly appreciate this education as I want to be more

sensitive to all patients we care for.

• I didn’t really know what it was, and now I do and understand it now

• I was familiar with outdated terminology. I also did not realize the I individuals were

grouped with the LGBTQ community which could be difficult for some individuals based

on their individual values and beliefs

• I have a better understanding and awareness

• I was completely clueless on this topic and didn't know it existed


• Understand the physiology

Learners provided the following feedback at 1-month Post-Education:

• I didn't even know the definition of intersex, so yes.

• I learned something new. I had never heard of the term DSD.

• I now know that it is such a more complex diagnosing process than I originally believed.

• Yes, traditionally it has gay, lesbian, and bisexual, and now there is an alphabet soup

for the way individuals identify. When caring for patients I set the soup aside and ask

patients to help me understand how they identify. While this can be important with

intersex individuals it’s also important to know the biology taking place within their

body to fully understand the type of individualized care the patient needs. It is hard to

keep up with terminology that constantly changes and evolves, this presentation was

very beneficial in understanding individuals with disorders of sex development and how

important it is to understand the differences of all the letters in the alphabet soup.

• Very informative educational offering. Great education on androgen insensitivity and

how that affects development of sex organs.

It is worthwhile to point out that while this part of the assessment was for clinical

knowledge, within the feedback from learners were an array of cultural competency concepts

such as awareness, knowledge, skill, encounters and desire. When learners stated they wanted

to be more sensitive to patients, desire was illustrated. Learners said they gained knowledge

and awareness on topics, as other examples. This portion of the evaluation provided strong

support for this project.

Health Belief Attitudes Survey Instrument (HBAS) Questionnaire

The HBAS survey was administered to nurses at baseline, immediately post-education, and

at 1-month post-education. The researcher reverse-coded the questions that were negatively

worded (questions 3,5,7,15). Next, the researcher calculated the overall average score for each

participant at each time point (adding scores for all items and then dividing by the number of


items). The baseline mean (SD) was 4.65 (0.68), post-education was 4.94 (0.66), and the 1-

month post-education was 4.92 (0.78).

A Wilcoxon signed ranks test found that the post-education HBAS score (M-4.94, SD-0.66)

is significantly higher than the baseline HBAS score (M=4.65, SD-0.68), Z=2.39, p=0.017.

There is no significant difference between the post-education and the 1-month post-education

HBAS Score, W=15, p>0.05. The graph for this is in Appendix R.

The four subscales in the scale were averaged. The Opinion Subscale, which measured the

importance of assessing patients’ perspectives and opinions (questions 1,3,6,10,13) had a

baseline mean (SD) of 4.91 (0.69), post-education 5.12 (0.48), 1-month post-education 5.38

(0.67). The trendline shows improvement in the opinion subscale but not a statistically

significant difference using the Wilcoxon signed ranks test, W=39.5, p=0.05. The graph for this

is in Appendix S.

The Belief Subscale, which measured the importance of determining patients’ beliefs for

history taking and treatment (questions, 2,8,11), showed a baseline mean (SD) of 4.30 (1.03),

post-education 5.05 (0.98), and 1-month post-education 4.63 (1.28). A Wilcoxon signed ranks

test found that the post-education Belief Subscale score (M=5.05, SD-0.98) is significantly

higher than the baseline Belief Subscale score (M=4.30, SD=1.03), W-11, p=0.05. There is no

significant difference between the Post-education and the 1-month post-education Belief

Subscale, W=8.5, p>0.05. The graph for this is in Appendix T.

The Context Subscale, which measured the importance of assessing patients’ psychosocial

and cultural contexts (questions 9,12,14), showed a baseline mean (SD) of 5.40 (0.69), post-


education 5.70 (0.50), and 1-month post-education 5.77 (0.35). The trendline shows

improvement in the Context Subscale score, and the Wilcoxon signed ranks test found the

differences between time points were not statistically significant, W=27.5, p>0.05. The graph

for this is in Appendix U.

The Quality Subscale, which demonstrates the importance of knowing patients’ perspectives

for providing good health care (questions 5,7,15), had a baseline mean (SD) of 3.81 (1.64),

post-education 3.77 (1.81), and 1-month post-education 4.13 (1.77). The trendline shows an

improvement in the Quality Subscale score, and the Wilcoxon signed ranks test found the

differences between time points were not statistically significant, W-58, p>0.05. The graph for

this is in Appendix V.

The results of the questionnaires demonstrate improvement in clinical knowledge as well as

beliefs and attitudes of participants. For future programs, efforts would be to obtain a larger

pool of participants and consider methods to increase post-education participation when

learners are less engaged in doing the survey. Participants verbalized insightful concepts of

what they gained from the education via the surveys' free-written space, validating the course.

Survey results were placed into a graph for a formal display poster to satisfy the Mt. St.

Joseph University curriculum and the hospital as a quality improvement project.

Significance and Implications

This project has the potential to grow to utilize a hospital-wide e-Learn format based on the

optimistic results. Classroom engagement became more focused as learners started to grasp

the content and the ethical implications of not being prepared to care for this patient


population. While it was challenging to obtain a commitment from voluntary participation one

month later, the overall scores demonstrated an increase in clinical knowledge and changed

attitudes. The qualitative feedback and results were the most revealing. Limitations were a

small number of participants and a limited set of participants one-month later. The HBAS

scores decreased one month later, in part, to less participation and retention; therefore, it is

fair to recommend future work to layer further information they received. The hope is that

education will enhance patient outcomes. This course is a lesson in preparedness for the

intersex/DSD patient. As Cools et al., 2018, articulated so well, medical care could be deficient,

impacting outcomes. Patients need to feel comfortable seeking healthcare services, and if they

don’t, they aren’t going to want to utilize the care. Identifying problem areas allows attention to

be given to change those areas. Patients must have trust to use health services (Cools et al.,

2018). Young adults find it difficult to find subspecialty experts to help treat them, which can

cause cessation of medical care (Cools et al., 2018). Negative experiences with medical care

throughout pediatrics and adulthood make avoidance of care conceivable (Cools et al., 2018).

The perceived rarity and lack of understanding can undoubtedly work against this patient

population. Any potential adverse sequelae could result. Nurses need to receive exposure to

this content so that their time with patients is constructive.

This project's significance can be recognized on an individual patient level or a national

level. To attain a broader audience - through conferences, poster-presentations, publication,

and a hospital-system engagement - there is a potential to change the society in which the

patient resides. For it to be effective on any level, it needs to be relentless in effort. Education


of nursing staff could support patient empowerment. Patients need to be able to trust

healthcare personnel and utilize appointments. Patients could ask for and receive psychological

support. Families of patients could receive help to support the cultural milieu surrounding the

patient. Patient comorbidities could be treated. Healthcare decisions would involve shared-

decision-making. When the LGBT population is represented, the intersex/DSD population

should receive equal, yet distinct, support.

The timeline was successful, despite the COVID-19 pandemic restrictions. The budget

demonstrated added self-pay costs (food, incentive gifts, paper, ink). Future work may benefit

from grant opportunities when the pandemic is no longer impacting in-person meeting

regulations.

This project implies that the nursing workforce will be better prepared for patients with

DSDs/intersex conditions. Nurses who participated in the course stated that they had little to

no knowledge before the Lunch-and-Learn and understood how the knowledge gap could

adversely affect patient outcomes. The qualitative feedback from learners demonstrated that

intersex/DSD education was clarifying to them. Stakeholders (diversity team, hospital

leadership, patients, etc.) will benefit from this project's supportive and complementary work.

The primary stakeholder is ultimately the patient. An additional pursuit of measuring patient

outcomes would be to utilize patient satisfaction scores, verbal feedback of providers and

patients, and data from the EHR.


Project Future

Current scientific knowledge and political activism imply long sustainability and the need

for this project to grow and continue. As hospitals advance the nursing curriculum on LGBT, the

intersex/DSD patient should also be distinguished and given equal attention. This curriculum

could be generated through ongoing in-person learning sessions, digital e-Learn, conferences,

and published articles. Publishing would allow the broadest advocacy, allowing a trickle-down

effect within hospital systems. Resources for this project are unit educators in the hospital,

hospital researchers, support groups, staff diversity leaders, specialty physicians, and

knowledgeable team members. Future projects could explore other validated tools for

measuring attitudes.

Dissemination of this project was through a formal poster presentation. The poster was

provided to the unit educator for display on the unit where the education took place.

Dissemination through publishing via credible sources is a long-term goal by submitting

abstracts for conferences and submitting proposals to nursing publications. The Sigma Theta

Tau Nursing Honor Society accepted an abstract of this work for their 2021 conferences, both

nationally and internationally. This project will continue to be disseminated as opportunities

present themselves.

Conclusion

Nurses are required to care for diverse patients appropriately. People with DSDs/intersex

conditions remain a vulnerable population, often confused with transgender patients and not

recognized because of lack of representation in the nursing curriculum. Hospitals are a visiting


place for people throughout the lifespan. There isn’t an area of the hospital system where this

education isn’t needed – from labor-and-delivery units, medical-surgical floors, primary care,

outpatient services, to hospice. They can be burdened with others’ discomfort and judgment

about their sexual orientation or gender identity. While SO/GI may not be an issue for some

people with intersex/DSD conditions, for others, it may be a process of human development

given the variables they are sorting out. How to elicit that information is a separate quality

improvement area. Terminology is inconsistently used in society and within healthcare which

impacts the clarity of the patient. Incorrect understanding of intersex/DSDs can mean that

detrimental biases and ignorance can negatively impact patient outcomes. Incorrect EHR

documentation, and therefore inaccurate SO/GI data collection, can also mean wrong

conclusions could be formed about people with transgender or intersex/DSD conditions.

Conversely, the correct use of the EHR can also serve to collect useful information on patient

outcomes, making this a cyclic discussion.

Focused cultural competency awareness applied to patients with DSDs/intersex

conditions has been lacking in nursing. Advocacy requires a workplace champion for the

DSD/intersex population to promote optimum care, both clinically and culturally. This project

intended to further the rudimentary nursing work on DSDs/intersex conditions, ignite ethical

conviction to advocate for this population, generate self-awareness and examination of

personal attitudes, and enhance skills for patient encounters. It is a national standard to be

culturally competent for all patients, but there has been little modeling of what this entails for

patients with DSDs/intersex conditions. This training clarified intersex/DSD patients from LGBT


and provided clinical knowledge as a means to advocate for them. This project is by no means

all-encompassing. Given the complexity of the topic and limitations of a single Lunch-and-

Learn session, a goal would be to implement this project in a digital e-Learn format to all

hospital staff with mandatory participation for a broader audience. It would also be far more

significant to educate nationally by submitting abstracts to conferences and authoring journals

for reputable nursing organizations. Gratefully, this project’s abstract has been selected for the

Sigma International Honor Society national conference in Indianapolis, Indiana and international

conference in Singapore, 2021. One of the values of this hospital is respect for people, and this

educational intervention exemplified this. With fervent hope, nurses will lead in amending gaps

in care and positively impact healthcare experiences and outcomes for these valued patients.


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Appendix A

Evidence Search Strategy

Summary of the Search Strategy

Note. Table structure adapted from Polit & Beck (2017)


Appendix B

Levels of Evidence (LOE)

Summary of Levels of Evidence Support

Note. *N is the total number of articles used. Levels of evidence are based on the hierarchy

pyramid by Polit & Beck (2017).

Type of Evidence

Level of

Evidence

Number of

Articles per

Level

(N=31)

Percentage of

Articles per

Level

(N=100)

Systematic Review I N=7 22.6%

Single Randomized Control

Trial

II N=1 3.2%

Single Non-Randomized

Trial

III N=0 0%

Single Prospective/Cohort

Study

IV N=1 3.2%

Single Case-Control Study V N=0 0%

Single Cross-Sectional Study

(e.g., survey)

VI N=7 22.6%

Single In-Depth Qualitative

Study

VII N=2 6.5%

Expert Opinion Case

Reports, etc.

VIII N=13 41.9%


Appendix C

Evidence-Based Model

Flowchart using the Iowa model for evidence-based practice.

Note: “Adapted with permission from the University of Iowa Hospitals and Clinics, Copyright

2015. For permission to use or reproduce the Iowa Model, please contact the University of Iowa

Hospitals and Clinics at 319-384-9098 or [email protected].”

Citation: Iowa Model Collaboration. (2017). Iowa Model of evidence-based practice: Revisions

and validation. Worldviews on Evidence-Based Nursing, 14(3), 175-182.

https://doi:10.1111/wvn.12223.


Appendix D

Nursing Theory

Nursing theory diagram applied to the care of patients with DSDs

Note. This diagram is based on F. G. Abdellah’s ten steps to identifying the patient’s problem,

summarized by Petripin, A. (2016). The model has been adapted to the proposed PICO

questions for a patient with a DSD for nursing care. Available at: https://nursing-

theory.org/theories-and-models/abdellah-twenty-one-nursing-problems.php.

Know the Patient,

Patient-Centered Care

Recognize the nursing problems for patients

with DSDs. Sort out relevant data.

Use nursing principles to decide appropriate

course of care for patients with DSDs Use available data from research for similar scenarios

Identify a therapeutic plan for the total

needs of the patient with a DSD.

Provide care to reduce discomfort and

provide security for the patient. Test

generalizations but individualize care.

Validate the patient's conclusions of their

health issues. Do not make assumptions

about DSDs.

Observe and evaluate the patient for

attitudes and cues affecting health

behaviors

Know the patient. Include the patient

and family in the care plan. Let the patiient

help define the medical visit.

Examine and identify the nurse's attitudes about the patient's

problems.

Develop a nursing care plan that includes

patient-centered care.


Appendix E

Hospital EPIC Gender Identity Documentation

EPIC Gender Identity Documentation

Note. The screenshot is of the gender identity options within the hospital EPIC documentation

as of Spring 2020. (Hospital EHR, 2020).


Appendix F

Nursing Cultural Competency for the Patient with a Difference of Sex Differentiation

(DSD)/Intersex Education

Outline of PowerPoint for Lunch and Learn for Nurses

Note: This outline depicts the main topics of the PowerPoint used in the Lunch-and-Learn.


Appendix G

Advertisement for the Lunch-and-Learn

Promotional advertisement for the Lunch-and-Learn

Note: This was the promotional advertisement posted on the medical-surgical unit to alert

nurses to an educational opportunity that included food and gifts.


Appendix H

Health Belief Attitudes Instrument Survey (HBAS)

Health Belief Instrument Attitude Survey (HBAS), with adaptation

Note: An adapted version of the Health Belief Instrument Attitudes Survey, by Dobbie, Medrano,

University of Texas Health Science Center at San Antonio, Copyright 2002. The word physician

has been replaced with healthcare worker. Permission received to use this tool, Meyer, C. on

behalf of Dr. Dobbie, April 29, 2020; Medrano, M., personal communication, May 22, 2020.


Appendix I

Clinical Knowledge DSD/Intersex Pre-Education Questionnaire

Pre-Education Questionnaires for Clinical Knowledge of DSD/Intersex

Note: This is a newly created knowledge-based DSD/intersex-specific Likert scale to assess this

nurse's clarification. It will provide anonymous coding to thread all three surveys to one person.


Appendix J

Clinical Knowledge DSD/Intersex Post-Education Questionnaire

Post-Education Questionnaires for Clinical Knowledge of DSD/Intersex

Note: This is the four post-education questionnaire that will be given immediately after the

education session and one-month later via email and Checkbox. There is one additional

question compared to the pre-education questionnaire.


Appendix K

Citi Training Collaborative Institutional Training Initiative

Citi Training Certificate of Completion

Note: Certificate of completion of Citi Training Program course GVARHC-AAFP-(MARKED OUT)

Refresher Course, which expires April 2022.

https://www.citiprogram.org/members/index.cfm?pageID=50


Appendix L

Mt. St. Joseph University IRB Determination

Mt. St. Joseph University IRB Determination Record

Note: This is the IRB determination letter from Mt. St. Joseph University IRB, stating it is a

quality improvement project and not a research project. McDonough, T., personal

communication, April 1, 2020.


Appendix M

Hospital Institutional Review Board (IRB) Determination

Hospital IRB Determination of Project as a Quality Improvement Project

Note: This is a formal letter from the hospital IRB designating this as a quality improvement

project and is not a research project. (Gonzales, Y., personal communication, March 27, 2020).


Appendix N

Budget Summary/Estimations

Budget table

Budget Item Cost to me In-kind-cost Award funds

Food (pizza, cupcakes) $100.00

Door prizes/Thank you

gifts

$400.00 (estimate)

One ream of paper and

printer ink

$ 35.00

Poster Production $100.00

Sigma Theta Tau

International Honor Society

National Conference

(Indianapolis)

$679.00

Sigma Theta Tau

International Honor Society

Congress/International

Conference (Singapore,

virtual)

$300.00

Hotel - 1 night

Food

Gas to and from Cincinnati

to Indianapolis

$180.

$100.

$ 60.

Total $975.00 $979.00

Note. Table of the estimated budget summary for costs for this project.


Appendix O

Timeline Summary

Project Timeline Summary

Note. Table contents are the summary of dated tasks for this project.

Task Timeline

Literature review Spring and Fall,

2020

Approval for the project by faculty Spring, 2020

IRB designation by Mt. St. Joseph University Spring, 2020

IRB designation by TriHealth Spring, 2020

Cultural competency tool and DSD-specific tool Spring, 2020

PowerPoint approval Fall, 2020

Two teaching sessions, with pre and first post-test survey Fall, 2020

One-month posttest survey Fall, 2020

Data collection and project review Fall, 2020

Completion of the final paper and digital poster Spring, 2021

Dissemination of DNP project results to unit educator Spring, 2021

Poster/Podium presentation at MSJ, provide poster to unit

educator

Spring, 2021

Dissemination of project at Sigma Theta Tau Honor Society

International/Singapore conference

July, 2021

Dissemination of project at Sigma Theta Tau Honor Society

National conference

Fall, 2021


Appendix P

Results of the Survey Question on DSD Terminology

Graph Results of the Survey Question “Have You Heard of the Term Disorders or Differences of

Sex Development (DSD)?”

Note: The two graphs shown above depict results from the survey question whether they heard

of the terms Disorders or Differences of Sex Development (DSD). There was a statistically

significant increase in the percent of nurses who have heard of DSD after the education (100%)

compared to before the education (47%), Fisher’s Exact p=0.0004.


Appendix Q

Clinical Knowledge Results for Baseline, Pre-and-Post Education

Results with correct answers on the Clinical Knowledge Questions

Note: This graph depicts the results of the knowledge question results before, immediately

after, and one month after the education. A Wilcoxon signed-rank test was used to compare the

paired data. There were significantly improved knowledge scores after the education (median =

3 correct) compared to before the education (median = 1 correct), Z=-3.62, p=0.0003.


Appendix R

The Health Belief Attitudes Scale (HBAS) Results

HBAS Survey Results

Note: This graph depicts the HBAS score results at baseline (pre-education), post-education,

and one-month post-education (10 of the 19 participants did the one-month post education).

A Wilcoxon signed ranks test found that the post-education HBAS score (M=4.94, SD=0.66) is

significantly higher than the baseline HBAS score (M=4.65, SD=0.68), Z=-2.39, p=0.017. There

is no significant difference between the post-education and the one-month post-education

HBAS score, W=15, p>0.05.


Appendix S

Health Belief Attitudes Survey (HBAS) Opinion Subscale

Results of the HBAS Opinion Subscale Questions

Note: This graph depicts the opinion subscale of the HBAS survey at baseline (pre-education),

post-education, and one-month post-education (10 of the 19 participants took the one-month

post-education survey). While the trendline shows an improvement in Opinion Subscale score,

the Wilcoxon signed ranks test found the differences between time points were not statistically

significant, W=39.5, p>0.05.


Appendix T

Health Belief Attitudes Scale (HBAS) Subscale, Belief Subscale

Graph Results of the HBAS Belief Subscale Questions

Note: This graph depicts the HBAS belief subscale at Baseline (pre-education), post-education,

and one-month post-education (10 of 19 participants took the one-month post-education

survey). A Wilcoxon signed ranks test found that the post-education Belief Subscale score

(M=5.05, SD=0.98) is significantly higher than the baseline Belief Subscale score (M=4.30,

SD=1.03), W=11, p<0.05. There is no significant difference between the post-education and

the One-Month Post-Education Belief Subscale score, W=8.5, p>0.05.


Appendix U

Health Belief Attitudes Survey (HBAS) Context Subscale Results

Results of the HBAS Context Subscale Questions

Note: Results of the Context Subscale at Baseline (pre-education), post-education, and one-

month post-education (10 of 19 participants did the one-month post-education survey). While

the trendline shows an improvement in Context Subscale score, the Wilcoxon signed ranks test

found the differences between time points were not statistically significant, W=27.5, p>0.05.


Appendix V

Health Belief Attitudes Survey (HBAS) Quality Subscale Results

Results of the HBAS Quality Subscale Questions

Note: Results of the HBAS Quality Subscale questions at Baseline (pre-education), post-

education, and one-month post-education (10 of 19 participants did the one-month post-

education survey). While the trendline shows an improvement in the Quality Subscale score, the

Wilcoxon signed ranks test found the differences between time points were not statistically

significant, W=58, p>0.05.

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