IHS2215 CSCC Week 3 Global Environment And Public Health summary elect one of the articles you were provided with for this week and write a brief summary o

IHS2215 CSCC Week 3 Global Environment And Public Health summary elect one of the articles you were provided with for this week and write a brief summary of the main ideas presented (200 words).

A summary is a concise paraphrase of all the main ideas in an essay or article. See more information on summarizing in these links https://public.wsu.edu/~mejia/Summary.htm, https://writing.colostate.edu/comparchive/rst/resource9.cfm
Following the summary of the article you selected formulate an open-ended question that would generate a discussion on the topics covered this week. The questions should lead discussions and not answered in a yes or no format. Your classmates will a short response essay to your question.

Here are examples of open ended questions from the Module 1 Readings:

As a health provider, physician, nurse how can learning (reading/writing) narratives influence their work in providing health care?
What is the significance of narrative medicine?
How long should a health provider spend with a patient to listen to their stories. Explain your response
How does narrative medicine affect the sick, or people with health issues?

IHS 2215_Article Summary Rubric.pdf

The Discussion Board is located under the “Group – Discussion Boards” tab. NIH Public Access
Author Manuscript
ANS Adv Nurs Sci. Author manuscript; available in PMC 2013 August 29.
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Published in final edited form as:
ANS Adv Nurs Sci. 2012 ; 35(1): 64–76. doi:10.1097/ANS.0b013e318244555a.
The Influence of the Culture of Care on Informal Caregivers’
Experiences
Janice Penrod, PhD, RN, FGSA, FAAN, Brenda Baney, MS, Susan J. Loeb, PhD, RN, Gwen
McGhan, MN, RN, and Peggy Z. Shipley, MSN, RN
School of Nursing, The Pennsylvania State University, University Park
Abstract
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The environment of care can have a profound impact on caregiving experiences of families caring
for loved ones with a life-limiting illness. Care is often delivered through disease-specific
specialty clinics that are shaped by the illness trajectory. In this study, the following 3 distinct
cultures of care were identified: interdisciplinary, provider dominant, and cooperative network.
Each of these cultures was found to express unique values and beliefs through 5 key
characteristics: acknowledgment of the certainty of death, role of the formal caregiver, perception
of the patient system, focus of the patient visit across the trajectory, and continuum of care across
the trajectory.
Keywords
culture of care; informal caregiver; life-limiting illness; specialty clinics; supportive care
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Modern health care delivery systems have developed in response to the need for short-term
health care.1,2 While this care delivery system has advanced exemplary episodic and urgent
care, there is a persistent discrepancy in focus between short- and long-term care. Seventy
percent of all deaths in the United States are attributed to chronic conditions,3 and 75% of all
health care expenditures in the United States are related to their management.4 The current
environment of health care delivery often fails to address the complex care demands of
living with chronic, life-limiting illnesses, especially during the prolonged non–short-term
phases.5 The purpose of this article is to compare and contrast key characteristics of the
culture of care in care delivery environments serving patients with life-limiting chronic
conditions.
Care for patients with complex life-limiting chronic illness is often delivered through
disease-specific, specialty outpatient clinics.5–7 Not to be confused with end-of-life specialty
clinics, these outpatient clinics serve patients and families for nonacute illnesses. The impact
of this system of specialty care delivery has been well documented, including improved
quality of care and health status,8 decreased hospital admissions,9 prevention of clinical
deterioration, and avoidance of acute health crises.10,11 Clearly, this organization of services
is effective in providing clinical expertise targeted at a specific illness12; however, there is a
Copyright © 2012 Wolters Kluwer Health | Lippincott Williams & Wilkins
Correspondence: Janice Penrod, PhD, RN, FGSA, FAAN, Center for Nursing Research, Penn State School of Nursing,129E Health
and Human Development East, University Park, PA 16802 (jlp198@psu.edu).
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of
Nursing Research or the National Institutes of Health.
The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies
pertaining to this article.
Penrod et al.
Page 2
range of services designed to support families living through the illness experience that are
underutilized.
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The service menu of many specialty clinics typifies a dominant biomedical paradigm13 with
a focus on monitoring pathology, treatment, and management of symptoms. Far fewer
clinics focus on the provision of care that addresses not only physical needs but also the
psychosocial concerns of living with a life-limiting chronic condition.14,15 Considering that
the chronic illness experience permeates everyday life, accessibility of specialty care is often
an issue. While some specialty clinics offer services on a daily basis in a fully staffed clinic,
far more offer more limited access on an intermittent weekly or monthly schedule.5
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This degree of variability in the environment of care for life-limiting chronic illnesses can
have a profound impact on the experiences of patients and families living each day under the
specter of a serious, incurable illness. In the various environments, health care providers are
challenged to effectively communicate treatment options, provide patient education, deliver
follow-up care, and aid in decision making from diagnosis through end of life.16 For
example, a critical consideration in the care of those with chronic conditions would be
advanced care planning; however, this is not always the case in the specialty clinic setting.
End-of-life discussions can be emotionally difficult for the patient, family, and the health
care provider who must constantly determine the best ways to communicate with patients
and caregivers about the illness experience.17 As a result, end-of-life discussions often do
not occur until the final hours, days, or minutes of life.
Specialty clinics provide health care that is largely administered through teams to achieve
common goals18 and outcomes19 that are influenced by shared understandings, ideas, and
values.20 The beliefs and values that are embraced by a culture such as a specialty clinic
provide the underlying rationale for how members of the culture think and behave as well as
influence perceptions about the types of useful treatments, probable outcomes of health
behaviors associated with the prevention and control of illness, as well as the meaning of the
illness experience.21 Thus, these cultural elements comprising health care providers’ beliefs
and belief systems about the total delivery of health service for patients as well as their
caregivers influence care delivery.22
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Culture is composed of both explicit and implicit shared values and beliefs that are manifest
in acquired patterns of behaviors. Different types of health care cultures have been linked to
performance outcomes such as quality improvement,23 functioning of teams,24 and
evidence-based practice.25 Shared values and beliefs are observable at multiple levels
including institutional frameworks that influence decision making and patient-provider
interactions; distinct work flow procedures; and defined roles for health care providers,
support staff, patients, and family caregivers.25 From structural and process components of
the delivery system to the more abstract level of ideas,20 cultural influences shape patterns
of behavior in care delivery. Thus, implicit or explicit values and beliefs of the
organizational unit of the specialty clinic shape the culture of care in that practice
environment.
In turn, translation of that culture of care into ongoing care interactions has a tremendous
impact not only on patients but also on the informal caregivers who share the illness
experience. Informal caregivers (defined as persons who provide direct care or supportive
care without compensation) are instrumental partners in the care delivery system. In 2009,
the economic value associated with informal caregiver services in the United States was
conservatively estimated to be $450 billion per year.26 Informal caregiving is difficult work
with a well-documented physical, social, financial, and emotional toll.27–30 Especially in the
context of life-limiting chronic illness, the duration of informal caregiving often extends
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over years, beginning when the patient is diagnosed, continuing through treatment until the
death of the patient. Because of the profound impact of informal care-giving, it is crucial
that these partners in care not be viewed merely as coproviders of care to patients but also
considered as care recipients with their own unique needs.31
The protracted trajectory of caregiving through the end-of-life has been modeled by Penrod
and colleagues.32,33 The unifying theme of the theory is “seeking normal,” a process
through which informal caregivers strive to achieve a steady state (or sense of normal)
amidst ever-changing demands in their care-giving role. The theory delineates 4 phases of
caregiving from diagnosis through bereavement marked by key transitions when the
progression of illness challenges an established “steady state” of the caregiver. Transitions
prompt a disruption, predisposing the informal caregiver to once again seek a new state of
normal by building new patterns integrating care demands into everyday life.
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The progression and duration of the care-giving phases are reflective of the course of the
illness and the acknowledgment that the end of life is approaching. Using classic models of
death trajectories as a foundation,34,35 Penrod and colleagues36 have further described
theoretical variations in the caregiving experience in an expected trajectory (eg, the
“terminal” diagnosis of amyotrophic lateral sclerosis [ALS]), an unexpected trajectory (eg,
the “serious” diagnosis of heart failure [HF]), and a mixed trajectory featuring intensive
curative attempts followed by a period of comfort care (eg, lung cancer). As indicated by the
trajectory labels, perceptions of the likelihood of death from the life-limiting illness range
from an expected, anticipated outcome to a surprising turn of events preceding an
unexpected death. However, it is important to note that the life expectancy of persons with
these life-limiting illnesses is very similar; death from ALS is likely to ensue within 2 to 5
years of diagnosis,37 less than 10% of individuals with advanced lung cancer survive 5
years,38 and more than half of those with HF die within 5 years.39
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Interactions with health care providers in specialty clinics provide critical evidence through
which informal caregivers interpret progression of disease and prognosis. These interactions
shape their acknowledgment of the probability of death and perceptions of the future. The
practice environment of the specialty clinic is fraught with implicit and explicit shared
values. This value-laden context sets the frame for the nexus of caregiving systems through
which informal caregivers build their understanding of the unfolding scene. Understanding
the culture within these care environments is critical in development and evaluation of
supportive strategies for informal caregivers. In this article, the key characteristics of the
culture of care manifest in specialty clinics serving patient systems (patient and family) with
life-limiting illnesses exemplifying 3 distinct caregiving trajectories are described,
compared, and contrasted.
METHODS
Informal caregivers interact with health care providers during brief office visits over the
course of their charge’s illness. To understand how the experience of the informal caregiver
is influenced by these visits, it is necessary to understand the culture of care in outpatient
clinical settings. Therefore, ethnographic methods were undertaken to explore and
understand the culture that is learned and shared among members of the culture of care in
the outpatient specialty clinics. The exploration concentrated on the interaction between
health care providers (formal care-givers) and the informal caregiver to identify and
interpret patterns of behaviors that reveal implicit and explicit shared values and beliefs.40
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PROCEDURE
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Approval was obtained from the medical center–based institutional review board for the
protection of human participants. Formal caregivers (n = 32) provided written informed
consent under principles of full disclosure prior to engagement in the research. Formal
caregivers included physicians (n = 7), nurses (n = 18), social worker (n = 1), counselors (n
= 2), occupational and physical therapists (n = 3), and administrative staff (n = 3). The
majority of the formal caregivers were female (81%). Verbal consent for observation was
obtained from informal caregivers (n = 601) and patients prior to the start of the visit.
Similar to the formal caregivers, the majority of the informal caregivers were female (79%).
The informal caregiving experience varies in course and duration over various death
trajectories.36 To capture the experience of informal caregivers with varied experiences, data
were collected in 3 outpatient specialty clinics treating patients and families transversing 3
distinct trajectories: expected (ALS), unexpected (HF), and mixed (lung cancer). These
clinics were located in the United States within a quaternary medical center with a large
geographic catchment area.
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Data collectors (n = 9) for the study were active members of the research team. The team
consisted of 2 senior researchers with extensive experience in qualitative research methods
and 7 junior researchers who underwent extensive training in observational data collection
techniques and completed a university-based graduate-level course in qualitative methods.
Although data collectors’ primary assignments were in a specific clinic, they observed
interactions in all clinics to increase validity of clinic comparisons and contrasts.
Researchers remained nonintrusive and nonparticipatory during 12 months of immersion in
the clinics. Naturalistic visual and auditory observations of 601 office visits were made
during clinic hours. Observations focused on verbal and nonverbal interactions between
formal and informal caregivers. Examples of observed interactions included communication
extending from discussion of patient symptom management and availability of caregiver
respite services to comforting behaviors offered to informal caregivers by their formal
caregiver counterparts. To enrich the observational data, formal caregivers were interviewed
briefly to provide information regarding the meaning behind their actions during these
interactions. To fully capture influences upon the observed interactions, data such as general
clinic observations, support group observations, and educational/support materials were
collected. Observations and formal caregiver responses to brief interviews were recorded
digitally as field notes. The recordings were then transcribed verbatim and verified for
accuracy. To protect the participants’ confidentiality, all personally identifying information
was replaced with generic identifiers (eg, physician).
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ANALYSIS
Analytic methods described by LeCompte and Schensul40 were used in this study. Analysis
began upon researcher immersion in the field with inscription, description, and transcription.
Researchers recorded field notes after formal and informal caregiver interactions, brief
interviews with the formal caregivers, and informal caregiver support group meetings.
Researchers utilized these inscriptions immediately following the observation to digitally
record thick description. These recordings were later transcribed verbatim and verified for
accuracy by reading the transcribed text, while listening to the audio recording.
The verified transcripts as well as the collection of educational/support materials were then
organized and stored within the analytic software platform ATLAS.ti (version 5.7.1, Atlasti, GmbH, Berlin, Germany) for data management. Within 3 months of initial data
collection, content analysis began within each clinic and then expanded across the clinics.
Data were analyzed inductively through a cyclical, iterative process that progressed from
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independent item-level analysis to pattern analysis and category codes. Inductive category
coding was done simultaneously with comparison to the ongoing observational data
collection permitting testing and refinement of early hypotheses as well as the development
of relationships.41 Through this process, a large amount of raw data was compressed into a
manageable form permitting exposure of patterns and themes.42 Conceptual insights derived
through ongoing analyses were used to focus subsequent data collection.40 Analysis
continued for 1 year as data collection continued.
Patterns and themes were interpreted by the team through shared insights during weekly
team meetings. Consensus was reached on the emergent interpretation of data. Instances of
divergent interpretations were resolved by the team’s close examination of the data or
continued data collection to clarify interpretation. All research team analysis meetings were
digitally recorded to retain accurate records of the decisional audit trail used in analysis.
The rigorous execution of this study is demonstrated with the immersion of the researchers
within the clinical setting for 12 months during all hours of clinic operation. Observations
were recorded digitally immediately following the interaction to ensure reliability. In
addition, all researchers observed in all 3 clinics to verify, confirm, or refute the reliability
of inscriptions by other researchers. Finally, findings were presented to key informants in a
form of member checking.
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FINDINGS
A clinical outpatient setting is a sociocultural organization possessing a culture of care
composed of shared values and beliefs. The culture of care as viewed from the lens of the
informal caregiver differed in each of the 3 clinical settings that were explored in this study.
Within these clinics, culture of care is shaped by the context of the illness. Formal caregivers
have expectations regarding the trajectory of an illness and this influences their values and
beliefs. These values and beliefs are expressed explicitly and implicitly through the care
delivery model, shaping the expectations and thus molding the experience of informal
caregivers.
Values and beliefs within each culture of care are expressed through 5 key characteristics:
acknowledgment of the probability of death, role of the formal caregiver, perception of the
patient system, focus of the patient visit across the trajectory, and continuum of care across
the trajectory (Figure). The key characteristics are co-occurring, interdependent spheres of
influence that are shaped by the context of the illness. As the spheres do not exist in
isolation of one another, if the values and beliefs expressed in one-sphere shifts, there is a
corresponding shift in the remaining spheres.
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In this study, exploration of 3 distinct models of delivery (interdisciplinary, provider
dominant, and cooperative network) in the clinics revealed distinct values and beliefs or
cultures of care. In the Interdisciplinary care delivery model, health care providers had
shared power and dynamically care for patients and families based upon expressed needs. In
the provider-dominant model, there is a lead provider and the role of the remaining staff is to
solely support that provider. In the Cooperative Network model of care delivery, there is a
lead provider; however, other interdisciplinary formal caregivers step in to support patients
and families (rather than the lead provider). In each of these care delivery models, unique
values and beliefs were expressed through the 5 key characteristics.
Exemplar 1: The culture of care in an interdisciplinary care delivery model
Acknowledgment of the probability of death—The most prominent characteristic
within each culture of care is the acknowledgment of probability of death. In this cult…
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