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4.1 Formulación de la Propuesta

4.1.2 Necesidad de la implementación de un Sistema de Evaluación de 360°

4.1.3.1 Diccionario de competencias

Target: By 2030, end the epidemics of AIDS, tuberculosis and malaria and neglected tropical diseases, and combat hepatitis, water-borne diseases and other communicable diseases.

For all peoples, understanding culture care needs and using that data to provide culturally

congruent care encourages continued engagement in care and adherence to medication regimens.

By remaining active in care and adherent to antiretroviral (ARV) medications people can achieve

and maintain undetectable viral loads; and, reduce transmission of HIV to others, including sex

implementation of this study. Giving NPs, other nurses and other providers the culture care

information they need to engage Puerto Rican women in NYC in care, increases the probability

of adherence to ARVs; consequently, reduces viral loads to improve health and wellbeing of

women; and, reduces transmission to sexual or drug use partners and unborn children.

Culture Care Theory (CCT) and the Ethnonursing Research Method (ERM)

Dr. Madeleine Leininger (1991, 2002b, 2006; McFarland, & Wehbe-Alamah, 2015)

developed the CCT and the ERM to discover, explain and predict the phenomenon of care, the

essence of nursing, through a cultural perspective. In her work, she noted that differences and

similarities in how people responded to illness and the nursing care they received were grounded

in their cultures. She maintained that by exploring the worldview, lifeways, social structure,

cultural values, language, and ethnohistory of different cultures nurses can provide culturally

congruent nursing care. When providing culturally congruent nursing care, the three modes of

culture care decision and action modes incorporate both emic (client/insider) and etic

(professional nurse/outsider) perspectives (Leininger, 2006a; McFarland & Wehbe-Alamah,

2015). By integrating the CCT, the nurse co-participates with the client (individual, family,

group, community and/or institution) to create a plan of care that is preferred by the client for

health and wellbeing.

The discovery of the culture care practices and needs of any cultural group can be

achieved using the ERM, a people-centered, inductive, open inquiry qualitative research method

utilizing interviews, participant experiences, direct naturalistic observations, reflection, on-going

data analysis and confirmability of findings with the informants. The use of enablers, or research

guides, to assist the researcher in the collection of data and ground its interpretation in emic

perspectives, is a technique specific to the ERM and necessary for the discovery of the cultural

about various cultures. The researcher can adapt the enablers to focus more specifically on the

DOI (Leininger, 2006b; Wehbe-Alamah & McFarland, 2015a). Integrated use of the enablers

and the steps of the method promote revelation through people’s stories of their perceptions and

experiences of care, wellbeing, health, and illness that are embedded in the worldview, social

structures, cultural values, ethnohistory and language of cultures (Leininger, 1991; Wehbe-

Alamah & McFarland, 2015b).

The disparities in HIV and AIDS in the Puerto Rican community required further

research and the impact of this disease on women was and continues to be particularly salient.

The CCT and the ERM provided a paradigm that permitted a full exploration of the cultural

aspects of this health condition. Having this information will assist in the provision of culturally

congruent nursing care resulting in a plan of care that incorporates culture care preservation

and/or maintenance, culture care accommodation and/or negotiation and culture care repatterning

and/or restructuring (Eipperle, 2015). The ultimate goal of the study was to integrate both

generic (folk, lay, or traditional) emic caring practices of the culture, and professional etic caring

practices of HIV care, as best meets the needs of the Puerto Rican woman with HIV to enhance

wellbeing in health, disability, illness, dying and death through the delivery of culturally

congruent care.

Research Questions

The following research questions guided this ethnonursing research study conceptualized

within the CCT:

1. What are the culture care beliefs, values, expressions, practices, and needs of Puerto Rican

2. In what ways do social structure factors, environmental context, ethnohistorical dimensions,

and language influence health and wellbeing for Puerto Rican women with HIV?

3. What are the cultural perceptions of care of Puerto Rican women receiving HIV care from

NPs and other providers?

4. What are the generic care beliefs and practices of Puerto Rican women living with HIV and

how do they compare to the professional care they receive from NPs and other providers?

5. In what ways can nurses, nurse practitioners and other providers use Leininger’s three culture

care decision and action modes to offer care that is meaningful and congruent with the culture

care needs of Puerto Rican women with HIV?

Orientational Definitions

Consistent with the CCT and the ERM, orientational definitions were used instead of

operational definitions to facilitate discovery of data of a more qualitative nature (Leininger,

2006a; Wehbe-Alamah & McFarland, 2015b). The following orientational definitions guided

this qualitative inquiry:

1. Culture – “the learned and shared beliefs, values, and lifeways of a designated or

particular group that are generally transmitted intergenerationally and influence one’s thinking

and actions” (Leininger, 2006a, p. 13).

2. Culture care – “cognitively learned and transmitted professional and indigenous folk

values, beliefs and patterned lifeways that are used to assist, facilitate, or enable another

individual or group to maintain their wellbeing or health to improve a human condition or

lifeway” (Leininger, 2002a, p. 57).

3. Culturally congruent care – “culturally based care knowledge, acts and decisions used

beliefs, and lifeways of clients for their health and wellbeing or to prevent illness, disabilities, or

death” (Leininger, 2006a, p. 15; McFarland & Wehbe-Alamah, 2015, p.14).

4. Culture care preservation and/or maintenance – “assistive, supporting, facilitative, or

enabling professional decisions and actions that help people of a particular culture to retain and

/or preserve relevant care values so that they can maintain their wellbeing, recover from illness,

or face handicaps and /or death” (Wehbe-Alamah & McFarland, October 31, 2015).

5. Culture care accommodation and/or negotiation – “assistive, supporting, facilitative, or

enabling creative professional decisions and actions that help people of a designated culture to

adapt to, or to negotiate with others for a beneficial or satisfying health outcome with

professional care providers” (Wehbe-Alamah & McFarland, October 31, 2015).

6. Culture care repatterning and/or restructuring – “assistive, supporting, facilitative, or

enabling professional decisions and actions that help a client(s) reorder, change, or greatly

modify their lifeways for new, different, and beneficial health care patterns while respecting the

client(s) cultural views and beliefs and still providing a beneficial or healthier lifeway before the

changes were coestablished with the client(s)” (Wehbe-Alamah & McFarland, October 31,

2015).

7. Acculturation – “process by which an individual or group from one culture learns how

to take on many, but not all, of the values, behaviors, norms and lifeways of another culture”

(Leininger, 2002a, p. 56).

8. Emic – “the local, indigenous, or insider’s cultural knowledge and view of specific

9. Etic – “outsider’s or stranger’s views and often health professional views and

institutional knowledge of phenomena” (Leininger, 2006a, p. 14; McFarland & Wehbe-Alamah,

2015, p. 14).

10. HIV infection – laboratory confirmed HIV infection either by positive result of an

HIV antibody test, or detection of HIV particles by nucleic acid detection, p24 antigen, or viral

culture. Case classification includes a combination of CD4+ T-lymphocyte count or percentage

and documentation of an AIDS defining condition. [Stage 1: CD4 T-lymphocyte >500 cells/μl or > 29%; Stage 2: CD4 T-lymphocyte 200-499 cells/μl or 14-28%; Stage 3: CD4 T-lymphocyte

<200 cells/μl or <14% or documentation of an AIDS defining condition; Stage Unknown: no

documentation of CD4 T-lymphocyte count or percentage and no documentation of an AIDS

defining condition] (CDC, 2008).

11. Antiretrovirals (ARVs) – medications used to treat retroviral infections, specifically

for the purposes of this study, the human immunodeficiency virus. These medications are

classified according to their action to disrupt the life cycle of the virus and are prescribed in

combinations to act on the virus in multiple ways thereby reducing viral load in blood and body

fluids.

12. Adherence – “the persistence in practice and maintenance of desired health behaviors

and is the result of active participation and agreement” (Cohen, 2009, p.33). Regarding HIV,

adherence is measured quantitatively by self-report of taking each prescribed dose. It is

recommended that 95% adherence is necessary to achieve viral suppression in HIV infection

(Patterson, et al, 2000, Lima, et al, 2009).

13. Nurse practitioner –nurse practitioners (NPs) are registered nurses who are prepared,

acute health care services to individuals of all ages (American College of Nurse Practitioners,

n.d.). Nurse practitioners may diagnose, treat, and prescribe for a patient’s condition that falls

within their specialty area of practice (Office of the Professions, New York State Education

Department, 2014, August 13).

14. Puerto Rican – an individual who self-identifies as being of Puerto Rican origin

(background) and as being a member of the Puerto Rican culture.

15. Code-switch – “defining feature of bilingualism,” “alternation and mixing of different

languages in the same episode of speech production” (Kharkhurrin & Wei, 2015, p. 153).

Assumptions

There were several assumptions underlying this study.

1. Puerto Rican women living with HIV and currently receiving HIV care would be

willing to candidly share their perceptions of the care patterns of their NP and other providers.

2. Applying Leininger’s CCT and the ERM was the most appropriate approach to

understand and explain the desired nursing and culture care of Puerto Rican women receiving

HIV care.

3. HIV care is a process that is affected by the care patterns that exist between the NP and

other providers and client.

4. Puerto Rican women have culture-specific preferences for the professional nursing

care that they receive from NP and other providers.

Significance to Nursing and other Health Care Professions

The findings of this study provided data on the culture care needs of Puerto Rican women

receiving HIV care. Many studies aggregate quantitative and sometimes qualitative data

countries of origin. There are many, and varied differences amongst them, including language,

customs, religious beliefs, economic experiences and culture care needs. While many

researchers may wish to consolidate the data, they have collected on the varied Latino

communities to achieve statistical levels of significance; they lose the richness of the data and its

full applicability to specific groups. The experience of Puerto Rican women with HIV is unique

and needed to be understood to provide culturally congruent, patient-centered nursing, and

primary care, by NPs and other providers. This ethnonursing study also supported the use of a

qualitative research method to discover culturally congruent ways to address health disparities as

directed by the National HIV/AIDS Strategy for the United States, the Healthy People 2020

goals and objectives, and the Department of Health and Human Services Action Plan strategies;

and the UN’s Sustainable Development Goals regarding HIV disease.

Limitations and Facilitators

This study was centered on Puerto Rican women living in NYC who were engaged in

HIV care from NPs and other providers in NYC. Limitations of this study were focused on the

methods of data collection and the specific emphasis on a small subset of the population of

interest. The data was gathered through interviews and self-reported information (laboratory

values; dates of HIV or AIDS diagnosis) were not confirmable by the researcher through other

means, such as chart review. The interactions with the informants were confined to the interview

setting, limiting opportunities for other data gathering opportunities. The Puerto Rican women

participating in this ERM study were current or former clients of an AIDS service organization

which could limit the diversity of the data collected, potentially limiting the breadth of the

Facilitators of this study included unique attributes of the researcher. The researcher is a

bilingual second-generation Puerto Rican, born and raised in NYC, with limited ties to the island

of Puerto Rico. The researcher worked with an ethnonursing research mentor and an expert on

the CCT and ERM and used other recommended methods to address the potential for bias,

bracketing and journaling (Leininger, 2006b; Wehbe-Alamah & McFarland, 2015b). The

researcher conducted the interviews in English and/or Spanish, using code-switching, as the

informants so desired. It was expected that this flexibility in language would open the study to

more informants, and the nuances of the perceptions of care, and therefore provide richer data.

It was expected that the findings would inspire similar studies to explore culturally

congruent care in other groups further developing beginning data sources about vulnerable

populations living with chronic illness; and this study would bridge significant gaps in

knowledge about the experiences of living with HIV and receiving care for HIV in these

vulnerable populations, building nursing and inter-professional knowledge bases in theory,

research, practice, education and collaboration, as well as healthcare administration and

healthcare policy.

Organization of the Study

This research study is presented in five chapters. The first chapter introduced the HIV

epidemic in the US Latino population in general and the Puerto Rican community more

specifically. Statistical data; select ethnohistorical and cultural data; HIV care, nursing care and

research concerns; and, national and international goals to reduce health disparities further

supported the rationale for a study focused on Puerto Rican women receiving HIV care from NPs

and other providers. The purpose, DOI, goals and research questions framing the study and the

(McFarland & Wehbe-Alamah, 2015) and the ERM (Wehbe-Alamah & McFarland, 2015b) were

introduced as the theoretical framework and research methodology guiding the study. The

assumptions of the researcher, the limitations and the significance of this ethnonursing study to

nursing and HIV care were also discussed. The second chapter further describes the theoretical

framework of this study and the review of literature supporting the need for this study. This

literature review is specific to the ethnohistory and culture of Puerto Rico; the literature on HIV

care and HIV research focused on Puerto Ricans and Latinos; and ethnonursing research focused

on Puerto Ricans and ethnonursing research exploring transcultural care needs of people living

with HIV disease. The third chapter provides the details on the implementation of the study

using the ERM, including study inclusion criteria; human subject considerations; use of enablers;

and, data collection, data storage and data analysis methods. The fourth chapter presents the

findings of this study with supporting quotations from the informants and the identification of

culture care patterns and themes. The final chapter includes a discussion of the findings and

culture care patterns and themes with supporting quotations; corresponding culture care decision

and action modes for NPs and other providers to use when delivering HIV care across continuum

to Puerto Rican women living with HIV; the implications for this study for CCT theory,

research, HIV care practice, nursing and interprofessional education, healthcare administration

Chapter II

Review of the Literature Chapter Introduction

This chapter provides a discussion of the Puerto Rican experience of the global HIV

epidemic. This discussion is framed by Leininger’s Culture Care Theory (CCT) (McFarland &

Wehbe-Alamah, 2015). The Puerto Rican culture is presented using Leininger’s Sunrise Enabler

to Discover Culture Care (Leininger, 1991, 2002b & 2006a; Wehbe-Alamah & McFarland,

2015a; Wehbe-Alamah & McFarland, 2015, October 31) to review the ethnohistory of Puerto

Rico; political and legal factors; economic factors; spiritual, and religious factors; cultural

values, beliefs, and lifeways; kinship and social factors; language of Puerto Ricans; biological

factors; educational factors; technological factors; and, environmental contexts. Next, the history

of the HIV epidemic in the Puerto Rican community is explored; followed by a presentation of

health research issues regarding the Hispanic community in the US. A brief synopsis of select

HIV-related research that has included Puerto Rican women is offered. Previous research using

the CCT to discover the culture care needs of Puerto Ricans and culture care related to HIV

disease are discussed. A summary of the literature review concludes the chapter.

Leininger’s Sunrise Enabler to Discover Culture Care

Leininger’s Sunrise Enabler to Discover Culture Care is a guide to any study grounded in

the CCT. It represents the comprehensive nature of culture and need for ethnonursing

researchers to explore various dimensions to discover the foundations of culture care beliefs,

values, expressions, practices, and needs regarding a domain of inquiry. In this study, the

domain of inquiry is Puerto Rican women receiving HIV care from nurse practitioners and other

and Leininger’s Sunrise Enabler to Discover Culture Care, Figure 1 (Appendix C) has been used

to organize the collection and presentation of the data discovered by this researcher. The enabler

depicts the inter-connected nature of various factors that represent the worldview and cultural

and social structure dimensions of culture. No factor is considered to have a greater weight than

any of the others, and together, they are meant to be studied as a whole. The rising sun metaphor

represents the light shining on all aspects of culture yet also implies that not everything can be

known at once (Leininger, 2002b; Wehbe-Alamah & McFarland, 2015, October 31);

consequently, reminding ethnonursing researchers that there will always be something new to

discover. The organization of the order used to present the factors for this study is intended to

support the data shared in subsequent sections, building understanding of the unique experiences

of the Puerto Rican community.

Ethnohistory of the island of Puerto Rico

Taíno Indians. The island of Puerto Rico (Figure 2, Appendix D), the smallest of the

four Greater Antilles Islands in the Caribbean Sea, had been inhabited by three groups of

indigenous peoples by the end of the 15th century, when Christopher Columbus and his crew first

ventured into the area. Like all indigenous peoples of the Americas, current theory proposes that

they migrated from Asia by crossing on foot over land that once existed in what is now the

Bering Straits between the most Eastern point of Asia and the most Western point of North

America.

The Archaics were the first group to reach Puerto Rico, arriving in the Antilles via boat

from South America circa 5,000 BCE. These people were hunter-gatherers, mostly of fish, and

they lived in caves. The next known indigenous group, the Igneri, also came via boat from the

agricultural community, who settled in areas near rivers, produced ceramics and jewelry, and had

a well-developed religious and cultural tradition. The Archaics and Igneri coexisted on the

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