AHS 301 Exam 3 Flashcards
(61 cards)
1
Q
Qualitative Research
A
- looking for patterns of association as a way to understand underlying meaning and dimensionality of phenomena (event)
- involves triangulation
- merging together of various data collection strategies
- is flexible & elastic, capable of adjusting to what is being learned during the course of data collection
- tends to be holistic, striving for an understanding of the whole
- requires researchers to become inversely involved
- often remaining in the field for lengthy periods of time
- requires ongoing analysis of the data to formulate subsequent strategies and to determine when fieldwork is done
2
Q
Activities in a qualitative study (planning the study)
A
- identifying the research problem
- doing a literature review
- developing an overall approach
- selecting and gaining entry into research sites
- developing methods to safeguard participants
3
Q
Activities in a qualitative studies (developing data collection strategies)
A
- deciding what type of data to gather & how to gather them
- deciding from whom to collect data
- deciding how to enhance trustworthiness
4
Q
Activities in a qualitative study (gathering and analyzing data)
A
- collecting data
- organizing and analyzing data
- evaluating data: making modifications to data collection strategies, if necessary
- evaluating data: determining if saturation has been achieved
5
Q
Activities in a qualitative study (disseminating findings)
A
- communicating findings
- utilizing (or making recommendations for utilizing) findings in proactive and future research
6
Q
Grounded Theory Studies
A
- rooted in sociology
- describe & understand the key social, psychological & structural processes that occur in a social setting
- social & psychological stages & phases that characterize a particular event or episode
- based on the social experience of a group of individuals
- goal is to discover a core variable that is central in explaining what is going on in that social scene
- involves in-depth interviews & observation
7
Q
Phenomenology Studies
A
- rooted in philosophy & psychology
- exploring & understanding people’s everyday life experiences
- examining the meaning of lived experiences of humans
- 4 aspects of lived experiences
- lived space
- lived body
- lived time
- lived human relation
- 4 aspects of lived experiences
- goal is to determine what is the essence of a particular event as experienced by those undergoing the experience
- researchers and informants are co-participants
8
Q
Ethnography Studies (part 1)
A
- rooted in anthropology
- description & interpretation of cultural behavior
- study cultural patterns & experiences in a holistic fashion
- culture is inferred from the words, actions & products
- goal is to learn from (rather than to study) members of a cultural group to understand their world view as they perceive and live it
- involves extensive fieldwork
- participate to the extent possible in the life of the culture under study
9
Q
Ethnography Studies (part 2)
A
- seek to learn from members of a cultural group to understand their world view
- emic perspective:
- way members of the culture envision their world (insiders view)
- emic is the local language, concepts, and means of expression that are used by the members of the group under study to characterize their experiences
- etic perspective:
- outsiders interpretation of the experiences of that culture
- language used by those doing the research to refer to the same phenomena
10
Q
Ethnography Studies (part 3)
A
Types of information obtained:
-cultural behavior (what members of the culture do)
-cultural artifacts (what members of the culture make & use)
-cultural speech (what people say)
Participant Observation
-researcher makes observations of the culture under study while
participating in its activities
-data sources used include observations, in-depth interviews, records, charts, & other types of physical evidence (photographs, letters, diaries)
-make interpretations of the culture, describing normative behavioral and social patterns
11
Q
Ethnomethodology Studies
A
- discover how people make sense of their everyday activities & interpret their social words so as to behave in socially acceptable ways
- researchers attempt to understand a social groups norms & assumptions that are so deeply ingrained that the members no longer think about the underlying reasons for their behaviors
12
Q
Data collection - emergent design
A
- design emerges during the course of data collection
- researcher makes ongoing decisions reflection on what has already been learned
- talk with or observe a few people that have had 1st-hand experience with even under study
- loosely structured process
- allows for the expression of a full range of beliefs, feelings & behaviors
13
Q
Data Collection - unstructured reviews
A
- start with some general questions or topics and allow respondents to tell their stories in a conversational fashion
- respondents guide the discussion & identify/elaborate on what is most relevant to them
- not guided by a researchers a priori w/little interruption
- may start w/ a grand tour question
- “what happened when you first learned you had AIDS.”
14
Q
Data Collection - semi-structured interviews
A
- researchers know what they want to ask, but cannot predict what the answers will be
- prepare in advance a written topic guide
- list of areas or questions to be covered w/each participant
- encourage participants to talk freely about all the topics on the list & to tell stories in their own words
- designed to elicit more detailed information
- “what happened next?”
- “when that happened, how did you feel?”
- goal is to ask questions that give respondents an opportunity to provide rich, detailed information about the phenomenon under study
15
Q
Data Collection - focus groups interview
A
- a group of 4 or more people is assembled for a discussion
- interviewer (moderator) guides the discussion according to a written set of questions or topics to be covered
- carefully planned discussions
- takes advantage of group dynamics
- those selected tend to be fairly homogenous
- setting should be one that is comfortable, not intimidating, accessible & easy to find
- researchers other than the moderator should be present to take detailed notes about each session
- limitations:
- may be uncomfortable expressing ones views in front of group
- group thinking can take over
- group culture that inhibits individual expression
16
Q
Characteristics of good interviews
A
- usually congenial, friendly people who have the capacity to see the situation from the respondents perspective
- nonverbal communication can be critical in conveying concern and interest (facial expressions, postures, nods)
- study participants will not share much information if they don’t trust the interviewer
- interviewers need to be a good listener
- not to interrupt respondents, to “lead” them, to offer advice or opinions, to counsel them or to share personal experiences
17
Q
Post - interview procedures
A
Tape-recorded interviews
- listened to & checked for audibility & completeness
- identify any problems with the recording
- may suggest possible follow-up questions if respondents are re-contacted
- transcription of interviews need to be done with rigors
- needs to be transcribed word for word
- need to enter information about pauses, laughter, crying, or volume of respondents speech
- need to listen to the recording while double-checking transcript
- 3hours of transcription time for every hour of interviewing
18
Q
Observations
A
Participant observation:
-observations occur within the group under study
-participate in the functioning of the social group under investigation and strive to observe, ask questions, and record information within the contexts, structures, and symbols that are relevant to group members
Unstructured Observations
-watching and recording unfolding behaviors
-observers do not interact w/participants in activities
19
Q
Observers role
A
4-phase sequence/continuum
-primarily observation with active listening (learning the ropes)
-primarily observation wit limited participation
-primarily participation with continued observation
-primary reflection and reconfirmation of findings w/informants
Continuum that does not assume and evolving process
-complete participant
-participant observer
-observer as participant
-complete observer
-gaining entry into the social group it culture under study
-establishing rapport & developing trust within social group
20
Q
Field Notes
A
-observers efforts to record information and synthesize & understand the data
-narrative account of what is happening in the field
-usually lengthy and time-consuming to prepare
Observational notes:
-objective descriptions of observed events & conversations
-information about actions, dialogue, and context are recorded as completely & objectively as possible
Reflective notes:
-document the researchers personal experiences, reflections, & progress while in the field
21
Q
Data Analysis and Interpretation
A
- ongoing
- who to sample next
- types of questions to ask
- observations to be made
- begin to identify themes & categories that describe event under study
22
Q
Data issues to consider
A
Data saturation
-when themes and categories in the data become repetitive and redundant
-no new information can be obtained by further data collection
Trustworthiness of data
-while in the field, findings accurately reflect the experiences & viewpoints of participants
-NOT the perception of the researcher
23
Q
Tuskegee syphilis study
A
- US public health system
- 1932-1972
- black sharecroppers in Macon County, AL
- 399 cases
- 201 controls
- study the effects of untreated syphilis — “bad blood”
24
Q
Tuskegee syphilis study
A
1940-efforts made to prevent men from getting treatment under the military draft
1945-penicillin became standard treatment for syphilis
1946-judiciary council of the AMA
-ethics of experiments involving human subjects
-based on the Nuremberg Code
3 requirements for participation in research studies:
1. The voluntary consent of the person on who, the experiment is to be performed must be obtained
2. The danger of each experiment must be previously investigated by animal experimentation
3. The experiment must be performed under proper medical protection and management
25
Tuskegee Syphilis Study
- story 1st broke in the Washington Star on July 25, 1972
- Peter buxtun
- ended on November 16, 1972
- 28 study participants died directly from syphilis
- 100 study participants died of syphilis related complications
- 40 wives were infected with syphilis
- 19 children were born with congenital syphilis
26
Jewish chronic disease hospital, Brooklyn, 1963
- elderly, disabled patients with compromised immune systems were injected with live cancer cells under the skin to study immunologic response
- patients not informed of cancer cells
- told that doctors were conducting a "harmless skin test"
- investigators did not want to frighten unnecessarily
- investigators justified this because they were reasonably certain that the cancer cells would be rejected
27
Willowbrook State School (1963-1966)
- NYS institution for mentally retarded children
- residents were deliberately infected with hepatitis virus
- follow the course of viral hepatitis
- study the effectiveness of an agent for inoculating against hepatitis
- consent was obtained from parents
- procedures were presented as vaccinations
- only children enrolled in the study were admitted to the school (coercion)
28
Stanford Prison Experiment, 1971
- planned two-week investigation into the psychology of prison life
- ended prematurely after only 6 days
- students acting as guards became sadistic
- students acting as prisoners became depressed and showed signs of extreme psychological stress
29
San Antonio Contraceptive Study, 1970s
- 76 impoverished Mexican-American women with previous multiple pregnancies who had gone to a public clinic seeking contraceptive assistance
- randomized, double-blind, placebo controlled trial
- all women were instructed to use vaginal cream as contraceptive during the study
- 11 women became pregnant during, 10 were using placebo
- none of them were told study involved placebo
30
US National Research Act (1974)
Established national commission for protection of human subjects
The Belmont Report, 1979
Code of federal regulations, 1974, 1981
-institutional review boards (IRBs)
Common Rule, 1991
Public Law 104-191, 1996
-HIPPA-health insurance portability & accountability act
31
Belmont Report (1979)
Ethical principles & guidelines for the protection of human subjects of research
Distinguished clinical practice vs. research
Three guiding principles of ethical research
1. Respect for individuals
2. Beneficence
3. Justice
32
Clinical practice vs. research
Clinical practice:
-interventions designed solely to enhance well-being of an individual patient that have a reasonable expectation of success
Research:
-an activity to test a hypothesis
-permits conclusions to be drawn
-contributes to generalizable knowledge
-usually described in formal protocol that sets forth an objective and procedure to reach that objective
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Respect for individuals
- individual's act as autonomous agents
- right to self-determination
- individual's who are not capable of acting as autonomous agents are entitled to special protections
- fetuses and neonate a
- pregnant women & human in vitro fertilization
- minors
- prisoners
- mentally incapacitated persons
- demands that subjects enter into research
- voluntarily
- with enough information to make a decision
34
Beneficence
- guided by 2 basic principles:
1. Do not harm
2. Maximize benefits & minimize potential harms
- risks should be in proportion to potential benefits
- risks include emotional, psychological, physical, social, legal & financial
- research design should ensure valid results
35
Justice
-benefits & risk of human research should be fairly distributed
-fairness in distribution
Social justice:
-distinctions be drawn btw classes that ought and ought not to participate in research based on ability of that class to bear burdens
-adults before children
Individual justice:
-researchers must select subjects fairly
-must not select only potentially beneficial research to some subjects in their favor
-must not select only "undesirable" persons for risky research
36
Application of the Belmont report
1. Informed consent
- information
- comprehension
- voluntariness
2. Assessment of risk & benefits
3. Selection of subjects
4. Establishment of IRBs
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Informed Consent
Information:
-research procedure, purpose of study, risk and anticipated benefits, alternative procedures, statement offering participant opportunity to withdraw at any time.
Comprehension:
-must present information in a way subject can understand
-must not be disorganized, too rapid, above educational level
-recommendation for writing to be at an 8th grade level
Voluntariness:
-consent must be given voluntarily
-persons in positions of authority cannot urge course of action
38
Role of IRBs
- work with investigators to be sure that the rights of participants are protected
- reviews grant proposals with regard to ethics and they decide whether additional components are required to assure safety and protect the rights of participants
- IRBs aim to protect the patient, but also the researcher and the institution against potential legal implications if important ethical issues are not addressed
- educate research community and public about ethical conduct of research
- resource centers for information about federal guidelines
39
Human protection check list
- does the research involve human subjects?
- does the research involve risk to participating human subjects?
- do the potential benefits of research justify the risk involved?
- has the protocol been designed to minimize risk to participants?
40
What is research misconduct?
"The fabrication, falsification, or plagiarism in proposing, performing, or reviewing research or in reporting research results."
-does not include honest error or difference of opinion.
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Fabrication
Making up data or results and recording or reporting them
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Falsification
Manipulating research materials, equipment, or processes, or changing or omitting data or results such that the research is not accurately represented in the research record
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Plagiarism
The appropriation of another persons ideas, processes, results, or words without giving appropriate credit
44
Research misconduct: why does it happen?
Most researchers have good intentions
-pressures and competition can lead to vulnerabilities in integrity
For example:
-deadlines and the rush to produce and publish results
-funding & financial incentives
-prestige and fame
-inadequate work environments
-general frustrations and personal issues
-fear and anxieties related to all of the above
45
Research misconduct procedures
- allegation
- preliminary inquiry
- formal inquiry
- deciding official
- investigation
- deciding official
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Research misconduct can result in a variety of actions by the government
- department from federal funding or advisory relationships with federal agencies
- involvement of other federal/local agencies
- payment of restitution
- retraction of publications
- imprisonment
- when ORI reaches a conclusion of research misconduct, the findings can become public
47
Evidence-based practice
"The conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individuals patients"
-goal-ability to make informed clinical decisions ---improve patient outcomes
48
Client - centered approach
-respect a clients needs, goals, values & expectations
-involve client in the decision-making process
-client is able to make informed choices/decisions
Outcomes:
-increased patient satisfaction
-increased patient quality of life
-improved adherence to long-term medication use
-reduced patient anxiety
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Shared Decision Making
-shared understanding of treatment and goal plans
-understanding of the risks, benefits, and trade-offs
-between the client & health care provider
Less likely to participate:
-patients in poor health
-males
-patients older than 45 years of age
-patients with fewer yrs of education
Outcomes:
-improved patient outcomes
-improved compliance
-greater family satisfaction w/communication
-improved emotional status
-reduced visits to EDs
-reduced use of medications
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Strategies to facilitate shared decision making
- take into account clients expectations, feelings & ideas
- value clients contributions (life experiences and values)
- provide clear, honest & unbiased information
- assess the degree to which your clients understand the information
- assess the degree to which your clients want to be involved in decision making
- provide a caring, respectful & empowering context in which clients can be enabled to participate in decision making
- be well informed about the most current evidence, particularly regarding issues such as diagnosis & intervention
- do not assume that your clients will make the same directions as you just because the evidence has been provided to them in a manner that they can understand
51
Effective Communication (part1)
Individualize education
-how does the patient prefer to receive information?
-what is the patients ability to understand the information?
Outcomes:
-improved self-efficacy to manage chronic conditions
-assist in short-term behavior change
-improved quality of life
-reduced medical errors
-reduced morbidity
-reduced healthcare utilization
---builds trust btw patient & health care provider
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Effective Communication (part2)
Written materials:
-5th to 6th grade reading levels (readability)
-material content
-usage of language
-organization of content
-layout and typography throughout the materials
-illustrations within the materials
-incorporation of learning & motivation features into content
Best if tailored to the individual client
-more likely to influence change in health behaviors
-greater client satisfaction
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Effective Communication (part3)
Use of Internet resources
| Negative experiences were common:
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Effective Communication - health literacy
The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions
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Health Literacy
Requires:
- reading & writing (print literacy)
- quantitative information (numeracy)
- speaking & listening effectively (oral literacy)
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Health literacy (part2)
Affects an individuals ability to:
- share personal information w/providers
- engage in self-care & chronic dx management
- understand mathematical concepts
- probability & risk
- navigate the healthcare system
- filling out complex forms
- locating providers and services
57
Limited Health Literacy
- having basic or below basic health literacy skills
- affects over 1/3rd of adult population
- 14% of adults have below basic literacy
- 22% had only basic literacy
- approximately 90 million people
- difficulty with common health tasks
- following directions on a prescription drug label
- adhering to childhood immunization schedule using a standard chart
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Limited Health Literacy (part2)
- cannot be distinguished from those with adequate health literacy skills
- diverse group of individuals
- completed high school or college
- are well spoken
- look over written materials and say they understand
- sense of shame about their skill level
- may hide reading or vocabulary difficulties to maintain dignity
- hold white collar or health care jobs
- function well when not under stress
59
Limited Health Literacy (part3)
Most prevalent in specific populations
- older adults
- racial & ethnic minorities
- may be associated with cultural differences
- individual's with less than HS education or GED
- individual's with low income levels
- may be associated with limited access to resources
- non-native speakers of English
- individual's with compromised health status
60
Implications of Limited Health Literacy
- less frequent use of preventive services
- more likely to skip preventive measures such as mammograms, Pap smears, and flu shots
- enter healthcare system when they are sicker
- more likely to use emergency services
- increase in preventable hospital visits & admissions
- higher rates of hospitalization
61
Implications of Limited Health Literacy (part2)
- inadequate knowledge and care for chronic health conditions
- more likely to have chronic conditions
- less able to manage them effectively
- less likely to have knowledge regarding their illness
- increased medication errors
- increased health care costs
- poor health outcomes
