Research and Evaluation for Social Work Practice -- #132
Fall Semester 2001
Leslie Alexander (lalexand)
Judith McCoyd (jmccoyd) BMC ext. 2645 or (610) 284-2287
Sandy Schram ( sschram)
Pamela Gessert (pgessert)
Roland Stahl (rstahl)
Ana Lisa Yoder (ayoder)
The general goal of this course is to make social work research an active rather than a passive component of the practice of each graduate. As social workers, we have a professional obligation to contribute to knowledge in our field. This course facilitates the development of an understanding of the scientific method as a systematic, rigorous approach to professional knowledge building and to evaluating and extending existing knowledge and practice at the client, program, community, and national levels. Explicit links are made between sound research and effective practice. The ultimate goals of such research are to enhance human well-being, alleviate poverty and oppression, and promote social and economic justice. The fact that all research involves often complex ethical and value choices is continuously stressed. Explicit procedures for assuring the ethical conduct of research are demonstrated, critiqued in assigned readings, and required in student projects, including the necessity of obtaining informed consent; inclusion of safeguards to insure confidentiality of research data; assurance of voluntariness in subject participation; and appreciation for not using vulnerable populations as research subjects, just because they may be more readily available. Existing research and student projects are also critiqued in terms of their relevance and generalizability, particularly to women, racial, ethnic, and other minority groups, and to those from different socioeconomic backgrounds. Course work is further reinforced by the ongoing requirement that students expand their technological skills, using the computer resources at the School and at the College.
Students will develop understanding of basic concepts and steps in the research process, which are implemented in the development of a research proposal that relates to either their work site or another human service agency with which they are familiar. Along with the course in Data Analysis (#131), this course enables students to incorporate research methods into all aspects of social work practice.
Students will develop the research skills necesssary to evaluate interventions designed to bring about change at any system level. More specifically, students will develop the knowledge and skills necessary to:
(1) promote critical analytic skills for developing, implementing, and critiquing research problems and questions appropriate to all levels of practice, including practice at student field placements or work sites;
(2) select appropriate quantitative and qualitative approaches to guide research on a particular topic, including the use of available data, experimental and quasi-experimental designs, surveys, intensive interviewing, and participant observation;
(3) implement procedures for assuring the ethical conduct of research, including the necessity of obtaining informed consent; inclusion of safeguards to insure the confidentiality of research data; assurance of voluntariness in research participation; and an appreciation for not using vulnerable populations as research subjects, just because they may be more available;
(4) use current technology, including the Internet, and a variety of existing social science and social work databases for understanding specific human conditions and biopsychosocial interventions;
(5) design studies that contribute to knowledge about social work clients, practice, and policy;
(6) critique existing research in terms of its ability to rule out other possible explanations for findings;
(7) critique existing research in terms of its relevance and generalizability, particularly to women, racial, ethnic, other minority groups, and people from different socioeconomic classes;
(8) develop procedures for coping with organizational and sociopolitical issues in agency-based research concerning such issues as how research projects get framed to how data access can be affected.
Students are expected to complete assigned readings in advance of class meetings. In addition to assigned readings in the text, there are required journal articles, which raise important issues about the topic in question. You should be prepared to discuss these articles for the week that they are assigned.
Class attendance is a routine expectation and it is assumed that students will take an active role in class discussions. If you not able to attend a class, please let the instructor know ahead of time.
Grades for this course are "Satisfactory" and "Unsatisfactory" in accordance with School policy. In order to achieve the intended outcomes for the course, the student must complete all work with an evaluation of Satisfactory and conform to APA style guidelines. Satisfactory on the Final Exam will be a 70 or above. Late submission of assignments must be negotiated in advance with the instructor. It is assumed that all written work will be completed independently, unless otherwise specified.
All written work must be produced with a word processing program (e.g., MS Word, Word Perfect). Students who are not already familiar with such programs should see the Teaching Assistant and make use of her help in the School's computer lab at the very beginning of the semester. The College's Computer Center also has equipment and services available for all students' use.
In addition to required readings, class participation, and a final exam, there are the following written assignments:
Assignment #1 -- Problem
Identification and Formulation of Research Questions.
DUE: Week 5: Oct. 1-2
Assignment #2 – Research Proposal: This assignment will be completed in three (3) stages.
Stage 1 -- Problem
Statement, Research Question, Conceptualization, Operationalization, Hypotheses,
and Literature Review.
DUE: Week 8: Oct. 29, 30
Stage 2 -- Methodology
and Survey Instrument.
DUE: Week 10: Nov. 12-13
Stage 3 -- Final
Research Proposal, includes Stages 1 & 2, plus Proposal Abstract, Consent
Form, Timeline, and Budget.
DUE: Week 13: Dec. 3, 4
Final Exam -- During Exam Week -- Dec. 17-18
Publication Manual of the American Psychological Association.
(2001). 5th Ed. Washington, DC: American Psychological Association.
(You may also use these two brief on-line guides to APA format--one for
citing electronic formats, the other for citing print formats.)
Liebow, E. (1995). Tell them who I am: The lives of homeless women . Boston, MA: Little, Brown & Co.
Rubin, A., & Babbie, E. (2001). Research methods in social work (4th ed.). Pacific Grove, CA: Brooks/Cole Publishing Co.
BMC Library WEBPAGE for Social Work Resources (i.e. PsycInfo, Sociological Abstracts, Social Work Abstracts, Ageline, etc.)
George Warren Brown School of Social Work Webpage.
NYU – World Wide Web for Social Workers.
Additional readings are on reserve in the Canaday library and are also accessible via e-reserves .
INTRODUCTION AND OVERVIEW OF THE COURSE
Course objectives, assignments, and required readings
Important issues in social work research today
Role of research for the professional social worker
Instructor's and students' research interests and prior research experiences
Sept. 10, 11
FOUNDATIONS OF SOCIAL WORK RESEARCH
What is reality? Ways of knowing
The logic of science
The relationship between theory and research
Inductive and deductive reasoning
Objectivity and subjectivity
Quantitative and qualitative research
Minority and gender representation
Rubin & Babbie, Chapters 1 and 2.
Discussion: In-class Exercise # 1
Sept. 17, 18
ETHICS AND POLITICS OF SOCIAL WORK RESEARCH
Basic Issues: Informed consent, benefits/harm, confidentiality, voluntariness, gender, cultural and heterosexist bias.
NASW Code of Ethics
Misconduct in research
BMC IRB Policy and Procedures
BMC IRB Appendix and Forms
NASW Code of Ethics, particularly section 5.02.
Gibelman, M. & Gelman, S. R. (2001). Learning from the mistakes of others: A look at scientific misconduct in research. Journal of Social Work Education, 37, 241-253.
Rubin & Babbie, Chapter 3.
Sept. 24, 25
PROBLEM FORMULATION, CONCEPTUALIZATION, AND OPERATIONALIZATION
Problem identification and formulation
Units of analysis
Conceptualization and operationalization
Rubin and Babbie, Chapters 4, 5, & Appendix B.
Oct. 1, 2
MEASUREMENT: GENERAL ISSUES
Levels of measurement
Reliability and validity in quantitative and qualitative research
Use of available measures
Johnson, H.C., Cournoyer, D.E., & Fisher, G. A. (1994). Measuring work cognitions about parents of children with mental and emotional disabilities. Journal of Emotional and Behavioral Disorders, 2, 99-108.
Rubin and Babbie, Chapter 6.
The library subscribes to this useful database on standardized measures.
DUE: ASSIGNMENT #1 – Problem Identification and Formulation of Research Questions and Hypotheses
CONSTRUCTING MEASUREMENT INSTRUMENTS
Guidelines for asking questions
Cultural sensitivity; heterosexist and gender bias
Singh, N.N., Baker, J., Winton, A.S.W., & Lewis, D.K. (2000). Semantic equivalence of assessment instruments across cultures. Journal of Child and Family Studies, 9, 123-134.
Rubin and Babbie, Chapter 7.
Oct.15, 16 FALL BREAK
Oct. 22, 23, THE LOGIC OF SAMPLING
Populations and sampling frames
Probability and non-probability sampling
Generalizability and representativeness
Burnette, D. (1997). Social relationships of Latino grandparent caregivers. The Gerontologist, 39, 49-58.
Diala, C., Mutaner, C., Walrath, C., Nickerson, K.J., LaViest, T.A., & Leaf, P.J. (2000). Racial differences in attitudes toward profesional mental health care and in the use of services. American Journal of Orthopsychiatry, 70, 455-464.
Rubin and Babbie, Chapter 8 & Appendix C.
Oct. 29, 30
Advantages and disadvantages of different survey approaches
Sampling issues and generalizability
Web and internet surveys
Johnson, H.C.,& Renaud, E.F. (1997). Professional beliefs about parents of children with mental and emotional disabilities: A cross-discipline comparison . Journal of Emotional and Behavioral Disorders, 5, 149-161.
Rubin and Babbie, Chapter 11.
Williams, J.H., Stiffman, A.R., & O'Neal, J. L. (1998). Violence among urban African American youths: An analysis of environmental and behavioral risk factors. Social Work, 22, 3-13.
DUE: ASSIGNMENT #2 – STAGE 1: Problem Statement, Research Question, Conceptualization, Operationalization, Hypothesis(es), and Literature Review
Nov. 5, 6
EXPERIMENTAL DESIGN: CAUSAL INFERENCE AND GROUP DESIGNS
Criteria for determining causality
Internal and external validity
Experimental and quasi-experimental designs
McKay, M.M., Stoewe, J., McCadam, K., & Gonzales, J. (1998). Increasing access to child mental health services for urban children and their caregivers. Health and Social Work, 23, 9-15.
Rubin and Babbie, Chapter 9.
Nov. 12, 13
Selection of target problems and relevant outcomes
Who gathers the data
Bradshaw, W. (1997). Evaluating cognitive-behavioral treatment of schizophrenia: Four single-case studies. Research on Social Work Practice, 7, 419-445.
Rubin and Babbie, Chapter 10
DUE: ASSIGNMENT #2 – Stage 2: Methodology and Survey Instrument
QUALITATIVE RESEARCH METHODS I
Terminology in qualitative research
Issues in intensive interviews and participant observation
Punch, M.(1994). Politics and ethics in qualitative research. In N.K. Denzin & Y.S. Lincoln, Eds. Handbook of qualitative research. (pp. 83-97). Thousand Oaks, CA: Sage.
Rubin and Babbie, Chapter 12.
Nov. 26, 27
QUALITATIVE RESEARCH METHODS II -- ETHNOGRAPHY
Liebow, E. Tell them who I am: The lives of homeless women. (all)
UNOBTRUSIVE RESEARCH: QUANTITATIVE AND QUALITATIVE
Existing data/secondary analysis
Besinger, B.A., Garland, A.F., Litrownik, A.J., & Landsverk, J.A. (1999). Caregiver substance abuse among maltreated children placed in out-of-home care. Child Welfare, 78, 221-239.
Rubin and Babbie, Chapter 13.
DUE: ASSIGNMENT #2, Stage 3 – Final Research Proposal
Dec. 10, 11
Purpose of program evaluation
Models of program evaluation
Politics of program evaluation
Rubin and Babbie, Chapter 18.
Final Exam -- During Exam Week -- Dec. 17, 18
Additional Recommended Research Texts
Alreck, P. L, & Settle, R. B. (1995). The survey research handbook (2nd ed.). New York: Irwin Professional Publishing.
Babbie, E. R. (1995). The practice of social research (7th ed.). Belmont, CA: Wadsworth Publishing Co.
Bloom, M., Fischer, J., & Orme, J.G. (1995). Evaluating practice: Guidelines for the accountable professional (2nd ed.). Englewood Cliffs, NJ: Prentice-Hall, Inc.
Blythe, B., Tripodi, T., & Briar, S. (1995). Direct practice research in human service agencies. New York: Columbia University Press.
Cook, T. D., & Campbell, D. T. (1979). Quasi-experimentation: Design and analysis for field settings. Chicago: Rand McNally.
Corcoran, K., & Fischer, J. (2000). Measures for clinical practice: A sourcebook (3rd ed., Vols. 1 & 2). New York: Free Press.
Drew, C. J., & Hardman, M. L. (1985). Designing and conducting behavioral research. New York: Pergamon Press.
Fisher, J., & Corcoran, K. (1994). Measures for clinical practice: A sourcebook (2nd. ed., Vols. 1 & 2). New York: Free Press.
Fortune, A. E., & Reid, W. J. (1999). Research in social work (3rd ed.). New York: Columbia University Press.
Grinnell, R. M., Jr. (Ed.). (1997). Social work research and evaluation (5th ed.). Itasca, IL: F.E. Peacock Publishers.
Hudson, W. W., & Nurius, P. S. (Eds.) (1994). Controversial issues in social work research. Boston: Allyn and Bacon.
Kazdin, A. E. (1998). Research design in clinical psychology (3 rd ed.). New York: Allyn and Bacon.
Kerlinger, F. M. (1986). Foundations of behavioral research (3rd ed.). New York: Holt, Rinehart and Winston.
King, G., Keohane, R. O., & Verba, S. (1994). Designing social inquiry: Scientific inference in qualitative research. Princeton, NJ: Princeton University Press.
Miller, D. C. (1991). Handbook of research design and social measurement (5th ed.). Newbury Park, CA: Sage Publications.
Monette, D. R., Sullivan, T. J., & DeJong, C. R. (1998). Applied social research: Tools for the human services (4th ed.). Fort Worth: Harcourt Brace College Publishers.
Newman, W. L. (2000). Social research methods: Quantitative and qualitative methods (4th ed.). Boston: Allyn & Bacon.
Padgett, D. K. (1998). Qualitative methods in social work research: Challenges and rewards. Thousand Oaks, CA: Sage.
Reid, W. J., & Smith, A. D. (1989). Research in social work (2nd ed.). New York: Columbia University Press.
Reinharz, S. (1992). Feminist methods in social research. NY: Oxford University Press.
Riessman, C. K. (Ed.). (1994). Qualitative studies in social work research . Newbury Park, CA: Sage Publications.
Rosenberg, M. (1968). The logic of survey analysis. New York: Basic Books.
Rossi, P. H., & Freeman, H. K. (1993). Evaluation: A systematic approach (5th ed.). Newbury Park, CA: Sage.
Schuerman, J. R. (1983). Research and evaluation in the human services . New York: The Free Press.
Sherman, E., & Reid, W. J. (Eds.). (1994). Qualitative research in social work. New York: Columbia University Press.
Tripodi, T. (1994). A primer on single subject design for clinical social workers. Washington, DC: NASW Press.
Wallace, W. L. (1971). The logic of science in sociology. New York: Aldine.
Yegidis, B. L., Weinbach, R. W., & Morrison-Rodgriquex, B. (1998).
methods for social workers (3rd ed.). NY: Allyn and Bacon..
September 4, 2001 Judie McCoyd
Research and Evaluation for Social Work Practice
“Judie”- at BMC; G-12; ext. 2645; email@example.com;
Commitment to Learning Community:
Read articles and assignments
Arrive on time
Participate in class
Research Preparation: In class, will design and write proposal, not implement (but must be realistic)
Empirical- what can be observed
Prepare to be analytical reader as well as to design and implement research
Problems for agency
Knowledge base required to understand
Specific issue to be addressed
Formulation of question
Formulation of variables
Creation of design
Will act as a simulation of grant application process
Quantitative vs. Qualitative
Role of Research in social work education
Need for theory prior to research
Empirically validated treatments
September 11, 2001
Chapt 1- Scientific Inquiry and SW
Experiential reality vs. Agreement reality
Epistemology- science of knowing- philosophically, how do we
know what we know
Methodology- what do we do to answer our questions; science of ‘finding out’
Professional mandate to gather scientific data about effectiveness
Joel Fischer- 1973- “Is social work effective?”
Unclear methodology of treatment; non specificity of goals and treatment
Ethics of poor research – Murray’s Losing Ground
Hogarty’s finding that schizophrenics better with meds and casework, not just casework
Types of Knowledge
Natural Human Inquiry- desire to predict and explain
Tradition- socialized into us
Authority- experts (schizophrenogenic mothers)
Errors- Inaccurate observation (conscious plan for observation);
overgeneralization; selective observation; made up info.(rationalization);
ex post facto reasoning; illogical reasoning; ego involvement; premature
closure; mystification; error
Chapter 2- Philosophical Issues
Everything open to question
Cumulative nature means all knowledge provisional and subject to refutation
Evidence based on planned observations
Empirical Observations are systematic and comprehensive
Recognition of biases
(Rubin says “Social scientific theory has to do with what is, not what should be.” (52);
Nature of Reality-
Premodern- belief = reality
Modern- recognition of diversity of beliefs, believe can locate reality by science
Post modern- all perspectives experience different realities (book from many angles)
Paradigms= view of how we organize our observations and make
sense of them
Positivist- Comte-believed society could be understood via the 5 senses; assume rational
Post positivist-Realize rational choice not only reality; positivist approach combined with idea that multiple perspectives exist.
Interpretivist- attempt to explore and convey the subjective experience of their informants.
Critical Theory- Marxist/ Feminist-looking for oppressed group; Rubin subtly puts down by saying they are really imposing their sense of reality.
Determinism, Probability and Causation
Determinism v Free Will issues
Research and prediction generally based on probability (Reasons have reasons)
Issue that most say cause must precede response- though in human behavior, can anticipate and therefore may be a future cause.
Models of Understanding:
Idiographic (understand 1 individual as fully as possible- clinical)
Nomothetic (try to understand a general phenomena- research)
Types of research
Quantitative- precise and generalizable statistical findings; tend toward nomothetic
Qualitative- emphasize understanding; more idiographic
Objectivity and Subjectivity
Agreement on standards and perspectives for observation allow more objectivity; always potential for error
Chapter 3-Theory and Research
Need theory to guide research; often tied to paradigm
Scientific method requires logico empirical reasoning-
assumes social regularities/ patterns
aware that exceptions exist
recognize research looks at aggregates
Considers Variables and the expressed attributes
Deduction= theory> hypothesis> observations> generalizations
Induction= Observations> generalization> theory (Walter Wallace Wheel of Science)
Research needs logical integrity & empirical validation (Ransford’s study of Watts rioters finding isolation and powerlessness^ correlates with willingness to use violence)
Glaser& Strauss- grounded theory- theory evolves through examination
of the data - though usually qualitative, cites Takeuchi’s study of those
who smoked pot as a quantitative study that then induced theory after finding
social constraints of female, at home and Asian correlated - ly with pot
Rubin concludes this section- Science rests on three pillars- logic observation, theory
Chapter 4- Ethical Issues and Political Issues
Peter Buxtun, trained by the army as a social worker= person who agitated enough to finally stop Tuskegee syphilis “study.”
Voluntary Participation and Informed Consent- (may compromise generalizability and observations based in deception)
No Harm to Participants- may find harm in reading results
Anonymity and Confidentiality- though anonymity allows more honest response, does not allow tracking; confidentiality issues
Deception of Subjects-
Analysis and reporting- ethical obligations to colleagues as well-report shortcomings
Weighing Costs/ Benefits-what alternatives available to diminish any
(Buckingham’s use of deception approved by administrators of hospital- and he went through physical risks himself , to access patienthood in medical and hospice wards)
Stanley Milgram’s 1963-5) shock experiments (subject delivered shocks ½ even after silence indicated death- subjects traumatized)
Humphrey’s 1970-Tearoom Trade- in public restrooms and he acted as look out while
looking at DMV info (invasion of privacy issues)
William Epstein- submitting fictitious article on asthma intervention with + and- results to test acceptance by journals- assumed more acceptance if intervention deemed +.
Texas study- used 90% as experimental group and 10% as control group who did not get extended benefits; exposed as unfair to control group who was denied enhanced benefits; others question since Feds required control group. Note that had the experimental group been much smaller, may not have been such a fuss.
Use of Institutional Review Boards- to enhance ethical research
Issues re: Gender and Culture Bias/ Insensitivity
THE POLITICS OF SW RESEARCH
No formal codes regarding political as opposed to ethical conduct. Rubin says one should put political views aside when doing research (!)
Cites how Zimbalist showed the history of SW research as an example
of how it attempted to impact social life ; claims social surveys often
were censored in their data to be able to make the case for reform.
Rubin says we can use values to spur our research, but not for its interpretation
and reporting. Discusses Murray & Hernstein’s Bell Curve and Maynihan’s
report as research that was attacked on political rather than methodological
Fears of being accused of racism (or other ism) keep some important research from beingg done (breast CA in blacks more estrogen-, more aggressive- implies genetics- a no-no)
PROBLEM FORMULATION & MEASUREMENT
Chapter 5- Problem Formulation
1- Problem formulation- question is devised and feasibility assessed (& pass the “so-what” test)
Includes hypotheses, operational definitions, and lit review
2- Design the Study-arrangements and data collection plans, measurement issues
3- Data Collection
4- Data Processing-classification, coding cleaning
5- Data Analysis-manipulate processed data to enable conclusions
6- Interpretation of the Findings- statistical testing; grounded theory
7- Write the Research Report
Introduction; Methodology; Results; Discussion
Acknowledge that proposal writing for qualitative is more difficult- “the paradox of planning what should not be planned in advance” (Morse 1994)
Feasibility= time, costs, authorizations, cooperation of stakeholders, attrition issues
Purposes of Research- Exploration, explanation and description
Cross sectional study- generally can’t be explanatory
Longitudinal- over time- attrition issues; trend studies, cohort studies, and panel studies
Units of Analysis
Individuals; Groups (households, gangs); Populations; Social Artifacts (letters etc.
The Ecological Fallacy- making assertions about specific individuals based on aggregate data; holds true of predicting indiv. Behavior or even smaller inherent group behavior (ie young voters in “old” precincts)
Reductionism- reduction of complex behavior down to a limited set of variables
Chapter 6- Conceptualization and Operationalization
Conceptualization requires explication of:
Independent variables Dependent variables Control variables Extraneous variables
Hypothesis= statement of the way these are related
Predicted relationships can be positive, negative (inverse) or curvilinear
Operationalization- how will a variable be named, what will be its
indicator (s) and how will it be measured?
Chapter 7- Measurement
Levels of Measurement
Nominal- categorical- race; religion
Ordinal- hierarchical without equal intervals-rank ordered; likert scales- high mdm low
Interval- equal intervals; no true zero; temperature; time
Ration- true zero- number of interventions applied; age; income
Always try to collect at the highest level of measurement
Sources of Error in Measurement:
Systematic Error- try to minimize
Biases- Acquiescent Response (especially if all positively worded)
Social Desirability (especially when face to face)
Cultural biases- language meanings; posture and gender meanings
Random Error— a given and why research probability based
Recording data; typos; legitimate misunderstandings
Avoiding Measurement Error
Double check data recording
keep questions simple
get collegial feedback
do not rely only on positively worded items
try to be as unobtrusive in measurement as possible
Use triangulation of data
Reliability- little random error; same technique applied repeatedly
turns up the same results
Is not indicative of validity (Reamer’s thermometer)
Ask only what respondents can answer
Specific, explicit training
Types of reliability
Inter rater reliability- trained observers come up with same answers; correlations >.8
Test- Re test- -Use same test with time interval long enough not to remember, but not so long that it changes
Internal Consistency Reliability- split halves> Coefficient alpha
Types of Validity
Face validity- seems to make sense- needs to have but not sufficient- Transtheoretical model of Heather’s
Content Validity- similar to face; does it include the range of meanings included in the concept (Math- addition & -, x, division)
Criterion- related Validity- test against other criterion of same variable; must be independent indicator, not a parallel form
Predictive validity- able to predict outcome based on indicator; scale predicts later success (SAT and college success)
Concurrent Validity- scale matches another criterion of variable- diagnosed as paranoid and tests as paranoid.
Criterion Validity (continued)
Known Groups Validity- comparison to known group shows validity
Sensitivity- ability to detect subtle differences
Construct Validity-assurance that measuring construct of interest and not something else
Convergent Validity- does it match some other form of legitimate measure that measures the same construct.
Discriminant Validity- does it truly reflect the construct of interest and avoid reflecting others (ie truly measuring depression, or picking up and eating disorder.
Trade offs between Reliability and Validity- for rich valid data, sample size and indicators more limited, limiting reliability; for very reliable measures, very defined and less braod and rich indicators available.
Qualitative Reliability and Validity
Richness and depth
Possibly compare with quantitative measures
Have informants read to see if it reflects their experience
1-interpretation of parts should be consistent with greater work- analogous to internal consistency reliability
2- interpretation must include all evidence
3- conviction- is this interpretation the most compelling one?
4- interpretation should extend our knowledge and make sense
Chapter 8- Constructing Measurement Instruments- questionnaires,
interview schedules and surveys
Likert scale ordinal level agreements
Open or closed ended questions
Response categories should be exhaustive and mutually exclusive
Items must be clear
Avoid double barreled questions
Assure that the intended sample can answer that type of question
Respondents must be willing to answer (China under authoritarian rule)
Questions should be relevant
Short items are best
Avoid negative items
Clean, spread out and uncluttered
Responses in predictable boxes/ circles- not slash and underscore
Careful with contingency questions
Matrix Question Format- hazard of response sets
Order of questions sets tone; some randomize questions, but this can lead to disjointed and chaotic feel; be aware and compensate. Rapport building time important.
All need clear instructions and introductory comments.
Constructing Composite Measures
Scales and indexes- allow us to represent complex variables with greater degrees of variance.
Adequate variance of expectable response
Analysis of missing data and decision making about how to deal with it
Prominent Scaling procedures
Semantic Differential- opposite poles and possible responses between them
Language- translation and back translations
Culturally and linguistically competent interpreters
Immersion in culture may allow compensation/ Pretesting Helpful
Rule of thumb re same culture for interviewer may backfire, but usually good
Measurement Equivalence- like validity and reliability for culture
Conceptual Equivalence-ensure instruments and indicators have same meanings across cultures
Metric Equivalence-assure that indicators relate in the same way to one another in each culture
Structural Equivalence- causal linkages and their consequents must remain the same across cultures
Constructing Qualitative Measures-
Differ from highly structured quantitative measures with less formally structured and more conversational style. Often use semi structured interview guide to assure topic coverage in a standardized manner
Chapter 9 The Logic of Sampling
Sampling necessary when can’t explore entire population affected by phenomena
Process of selection of sample will effect generalizability.
Probability vs. Non- probability Sampling
Reliance on Available Subjects-usually risky due to bias
Purposive or Judgmental sampling- though not representative, may select particularly knowledgable respondents or people viewed by others as representative or as outliers
Quota Sampling-matrix of demographics filled with informants and then weighted
Snowball Sampling- collect data from an individual who then refers to others
Use Informants rather than respondents
Must avoid bias and ensure that every individual in the population has an equal chance of being selected; A sample is deemed representative if its’ aggregate characteristics closely match those of the population being studied.
EPSM- equal probability of selection method- more representative than non-prob
Allows us to determine the sample’s representativeness of the population
Element- what is being studied; corresponds to unit of analysis
Population- total group from which sample is selected
Study population- the specific type of population that is being studied
Sampling Units- levels of elements- blocks> households> adults
Sampling Frame-list of population under study from which one selects sample
Observation Unit-Unit of analysis- like element but may differ in that household= OA and head of household=UA
Variable-set of mutually exclusive attributes; must possess variation
Parameter-summary description of a variable in the study population
Statistic- description of a variable in the sample
Sampling Error-degree of error for any particular sample
Confidence Levels and Confidence Intervals- level of confidence that a statistic reflects the parameter within a set interval
Probability and Sampling Distribution-
Theory- Probability sampling is done to attempt to have the statistic accurately portray the parameters of a given study population. Random selection is the key to this process. Generally, random selection tables or computer programs are used to avoid any conscious or unconscious bias and allows estimations of error to occur. Counts on regression to the mean and resultant normal curve as determinitive of distribution and therefore explanatory of error.
Allows one to assume true mean is at 50% (with median)
This allows one to determine the sampling error- s = Square root of P x Q/ n where
s= standard error; P= population parameter (% of X) Q= other part (% of Y) and n = # in pop.
Note P= 1-Q and Q=1-P
Plus or minus 1-3 standard errors> 68%> 95.9> 99.9%
As an inverse, sample error is also based on sample size- the bigger the sample size the smaller the error; also if sample size quadruples, then standard error cut in half (due to fact of square root).
Above all assumes knowing the population parameters, however the reality of research is that it turn probability theory the other way around and assumes from the statistic a given probability that it reflects the population.
The % within the standard error interval (68% for 1) translate
into a confidence level- we are 68% confident that that statistic
falls within that interval- the confidence interval when translated into
the statistics. This then allows one to figure out the appropriate
Technically, this theory assumes random selection with replacement, an infinitely large population, and multiple samples- which are not true in “real” life.
Sampling Frame- list from which the elements can be selected.
Organizations often the easiest to sample since they generally have member lists
Without a full sampling frame, or using a biased one (phone lists, etc.) Can’t make an accurate determination of standard error; in Japan, full registry of citizens exists- US privacy issues
- Results apply only to sampling frame
-Name of sampling frame may or may not reflect its completeness
-True random sample must occur to allow generalizations
Quick and dirty sampling size determination- rule of thumb = 10 cases for each potential variable- so if 10 variables, 100 sample size.
Power=how many cases must be assigned to different comparison groups in order to have an adequate chance of detecting true differences between groups
Simple Random Sampling- use of random #’s table and sampling frame
Systematic sampling— every kth element in the sampling frame is used, selecting the first element at random; empirically virtually identical to SRS
Only hazard = periodicity
Stratified Sampling-= modification, not alternative to SRS; goal to organize the sample into homogenous subsets.
Organize population into discrete groups and then randomly select to proportion of the desired sample size
Groups cases as above, but then do a systematic selection from total list (can’t use SRS or end up unstratified); Therefore ordered list is often more helpful than random, as long as one knows the ordering and doesn’t allow bias to affect
Proportionate Random Sampling-
Take larger portions of the smaller sampling frame as respondants, but then weight back to proportions of the populations
Multistage Cluster Sampling-
Start by list of clusters (churches) and then select elements from selected clusters; multistage then = select city blocks, then households, then household members; Somewhat less accurate sample than SRS . Each stage raises the possibility of sampling error- even so, increased # of clusters with fewer elements within each cluster is probably more representative than more elements from fewer clusters, though fewer clusters lowers costs and canvassing.
Can also stratify the lists to allow stratified cluster sampling. The primary goal of stratification is to achieve homogeneity of sub groups
Probability Proportionate Sampling- Used when clusters are of different size/density- ie city blocks may have 10-60 houses and yet each should have = chance of selection; Re do sampling frame with proportions so that each size is represented- block with 200 households must get ½ weight of one with 100 households.
OVERALL Probability Sampling- each element has a known probability of selection, allows estimation of sampling error and avoids bias.
Concerns about bias based on gender and minority status- assume results apply to all even when sample homogeneous and doesn’t include that attribute
Chapter 10 Causal Inference and Group Design
Criteria for Inferring Causality- (Lazersfeld)
1- Cause precedes effect in time- Make sure can’t be opposite direction
What about anticipatory effects?
2- Two variables must be empirically correlated with one another (Marijuana and grades)
3- Assure that correlation is not due to a variable effecting the other 2 variables.
2- Maturation- time passage
3-Testing- repetition of testing and/ or learning test
4- Instrumentation- Pre post test effects
5- Statistical Regression to the mean-tendency to return to more “average” state
6- Selection Biases- how groups may not be truly comparable
7- Experimental Mortality - attrition; may change groups comparableness
8- Ambiguity about direction of causation-which came first
9- Diffusion or imitation of treatment- fidelity issues; contamination, contagion
Pre- Experimental Designs- Little control for threats to internal
1- One shot case study design- X O Intervention, measure
2- One group pre- test Post- test O X O
(Matuaration , testing, regression still threats)- controls for correlation and timing
3- Post test only Design with non equivalent groups
X O (Static Group Comparison Design) controls for testing doesn’t control selection bias;
Primary criteria = randomization of groups
Criteria for Experiment:
1- random assignment to control or experimental group
2- introduction of independent variable only to the experimental group
3- comparison of experimental and control groups on the dependent variable
Types of Experimental design
1-Pretest Post test control group design
R O X O
R O O
@ Post test only control group design- like above without first observation
3-Solomon Four Group Design- Gold Standard
R O X O
R O O
R X O
Randomization- relates to internal validity issues where random sampling relates to external validity; must assign randomly; larger the sample, the more confident we can be of similar groups
Matching - similar to quota sampling; randomly assign sub sets to
the exp. Or control group
Just matching without randomization loses “right “ to use statistical based on probability
Other problem = possibility that one may not match on a variable of importance
Providing service to control groups- must assure that they do not get “dose” of intervention under study or results contaminated and causal inference can not be used.
Use of blind raters increases internal validity by controlling for unconscious bias (Reamer reported nonsense test where non blinded experimenters had “correct” answers on test more than blinded ones.
Whiteman, Fanshel and Grundy (1987)- Use of CBT with potential child maltreatment parents four groups- 1 got restructuring of expectations and perceptions; 2 got relaxation techniques; 3 got problem solving and 4 got all and 5 group got standard services
QUASI EXPERIMENTAL DESIGNS
No randomization, just an attempt to match groups; use term comparison group instead of control group .
1- Non equivalent Control Groups-
O X O
O O No R
2- Simple Time Series Design- uses multiple observations over time, possibly with interruption of series with “intervention” (class discussion after reminder of participation aspect of grade)
3- Above made stronger by Multiple Time Series design with non equivalent group
1- Treatment Fidelity may be in question- may get creative practitioners
2- Contamination of Control condition-comparison group may get some
3- Resistance to Case Assignment protocol- may begin to refer particular type of case
4- Client Recruitment and Retention may vary- dumping or lack of referral
Need to enlist staff and administrators to work to avoid pitfalls and build in monitoring aspects
Rubin suggests using qualitative techniques as monitors for quantitative methods. Bosk would have a heart attack since not viewed as legitimate method in its own right in this way.
Issue of generalizability = crucial issue; internal validity a necessary but not sufficient condition
Amount of experimental rigor often jeopardizes external validity
Reactivity an issue
Rubin suggests placebo design to enhance, however this appears to be more an internal validity enhancement.
Cross sectional studies- may show correlations, even time series, but lack ability to make causal inferences generally.
Chapter 11- Single Case Design-
Logic= use of time series to determine changes between baseline and condition after introduction of intervention; assumes repetition; basically individual operates as their own control; chief limitation= “dubious” external validity, however Pavlov’s dog was single subject
Allows integration of practice and research.
Pros- advances practitioner’s practice, and multiply, enhances effectiveness of agency; allows one to “check” researcher generated results in vivo
Ethical issues regarding delay of treatment while gathering baseline data and interruption of potentially effective treatment = 2 issues; repeated observations may also be perceived as intrusive and or irritating
Must operationalize the target behavior for study; need to assure that measure is sensitive to small changes and varies over relative time periods; also attend to whether measures are + or - framed (think positive about goal accomplishment; use self derogatory thoughts)
Use 2-3 indicators to allow triangulation (measure; self report; teacher report
risk of observer bias when measuring own work; client bias and wish for improvement or approval may also influence;
Reliability and validity- belief that using normed, reliable and valid scales clears up problems= inaccurate. Problems remain since normed and validated on large samples; not typically administered multiple times and not necessarily set to measure incremental change over time. Also, anonymity not present.
Direct Behavioral Observation Issues:
Reactivity of repeated measures
Self report and social desirability issues
Reporting feature may sensitize to change behavior, not intervention
Use of unobtrusive observation- may be unseen but reactive none the less.
Collect data re: Frequency, duration, magnitude
Can also do interval reporting- does behavior occur in set interval?
Spot check intervals a possibility as well
Baseline data collection:
logic relies on comparing trends so multiple baseline measures a good idea (he says 10); realize client in danger can not wait to collect baseline data; some use retrospective or reconstructed baseline when gathering true baseline impossible
ABAB Design- ethical issues but may happen naturally if therapist
AB design less valid but most popular with practitioner researchers
Multiple baseline measurements with multiple data gathering target behaviors may allow fuller belief in effectiveness of treatment
Generalization of Effects:
Occurs when improvements occur not only to arena of interest, but generalize to other related areas (no longer do behaviors that get one in trouble). May also generalize indirectly if troublesome behavior stops and this means other ramifications of that behavior stop as well.
Need to try to control for history events that may occur coincidentally with new intervention
Multiple Component Designs
May use varying intensity of intervention, new aspect to intervention (add rewards); some times ‘order effects’ make a difference, or interventions become cumulative; re ordering in replication and or returns to baseline with re ordering possible.
Assess statistical probability that variation statistically significant
Evaluate if clinical change is substantive
Aggregating Results of Single Case designs
Purpose = to reduce doubt about the external validity of results
1-Can determine raw # of those which show improvement
2- Examine if all have similar pattern and evaluate how to influence
Chapter 12- Survey Research-
Charles Booth in 1886 undertook social survey for purpose of disproving Marx’ assertion that 25% of people lived in poverty in London- found instead an even higher degree of poverty; Pittsburgh survey soon followed, as did Social Survey movement by social workers (Zimbalist)
Credibility of surveys tarnished by 1920's since most was done with
clear agenda of amassing supportive data and sensitizing movements
Good for assessing information from large groups of people
Lead in paragraphs may promote social desirability bias; if asking for charitable contribution or Push Polling, obviously not sound research
Self- administered Questionnaire- usually mailed to large numbers or given at time when people gathered; completion rate higher when questionnaires hand delivered or hand picked up.
(Need self addressed, stamped env.; cover letters; Return rate graph by serializing # at time of return, can also control for historic events that may occur, may also id trends- happier return more promptly)
Follow up mailings- may want to send additional survey- 3 mailings best; want response rate of at least 50%- preferably >70%
(Cheaper and quicker; lower response rates, small staff needs)
Computer assisted Telephone Interviewing- interviewer reads from computer screen and types in answers
Computer assisted Personal Interview- like above only face to face instead of over phone
Computer Assisted self interviewing- respondent answers for self on computer brought by interviewer
Computerized self administered- do on own computer
Touchtone data entry-
Voice Recognition- over phone, but verbally given instead of touchtone
Get higher response rates;decrease don’t knows or N/R; Need to assure less sensitivity of data collection, similarity of demographics to level of respondent comfort
Rules- Dress similarly to respondent while showing respect; Show familiarity with questionnaire and read naturally; Follow question wording exactly; record responses exactly; Use probes including silence as instructed and keep probes neutral; Coordinate and train with clear specifications for ambiguous questions; check in with interviewers to assure appropriate applications
(Better response rate; more reactivity; more data; context info.)
Telephone Surveys: random digit dialing; can hide ethnicity and other
(Safety issues easier; cheaper
Strengths and Weaknesses of Surveys
Large populations manageable
More generalizable results when Random Samples
Rise in External validity often results in compromise of internal validity (inferring causation virtually impossible due to cross sectional nature)
May seem superficial
Lack ability to get full context
Varied understandings of words, nuance lost
Collect self reports and hindered in validity by that and its reactivity
Can not show processes in action
Often weak on validity and strong on reliability
Use data gathered by others (PSID) or other data archives
+cheaper and faster;
- concern about validity of results
Chapter 13- Qualitative Research
Field Research- includes participant observation, direct observation and case studies; intensive interviewing;
Often viewed as theory generating more than theory testing
Interpretivism- idiographic and nomothetic; not positivistic
Hermeneutics- how we understand understanding
Participant Observation- taking part in the life phenomena under study
In depth interview- less structured interview with more complex answers
Case Study-detailed description of the case
Ethnography- naturalistic observations and examinations of cultures
Generic Propositions- find descriiptive and explanatory patterns
Unfettered inquiry- explore anything
Deep Familiarity- place self in position to understand
Emergent Analysis- grounded theory, not hypothesis first
True Content- proceed as if there is a true truth to discover
Developed Treatment- balance between presentation of data and elaboration of theory
Grounded Theory-Glaser and Strauss (1967)
Inductive reasoning; Constant Comparative method; discern patterns in data
Sampling done for purposive reasons; Theoretical sampling until
the point of saturation;
Modification of formed hypotheses as one goes with additional interviews and/or sampling
Parallels with what one does in clinical practice in terms of finding
patterns and looking for what works with varied clients; Both use attempts
to understand informant’s perceptions
Difficulty often in balancing being in tune with clients and maintaining an analytic stance
Topics of exploration:
Lifestyles or sub cultures
Roles of Observer: (based on degrees of participation)
Complete Participant- ethical issue of deception; any true participation makes the researcher part of the researched-they influence events; done to try to optimize validity and avoid reactivity, but can never be totally neutral; also, concern about going native
Participant as Observer- participate, but clear that you’re there as a researcher; may start as participant and then become researcher of familiar context; may effect behavior by virtue of being studied; concern about going native and losing scientific detachment
Observer as participant- identifies as researcher first; interacts, but don’t force participation; like journalist
Complete observer- do not interact; may be unobtrusively observing, but less likely to be fully engaged in the action and lose data
Fred Davis advocates “going martian” as opposed to being “converted”
Relationships to Subjects:
Need to determine whether you will adopt views of group of interest or pretend to adopt views;
suggests a little of both; can suspend all belief and just engage
Identify the unit of analysis (individual, group, organization)
Identify phenomena of interest
Attempt to observe everything while being honest that one is sampling events since no one can observe all
McCall and Simmons- Use Quota, snowball or deviant cases sampling
Might also decide to not use deviant cases per se, but those that are on the hiogh and low intensity scale so as to illuminate differences
Critical Incidents sampling also possible- incident in which something of importance happened
Success or failures; best or worst outcomes)
Maximum variation sampling- capture as much variation as possible
Opposite- Homogeneous sample - to see patterns
Theoretical Sampling- combines homogeneous and deviant case sampling
Purposive sampling- select sample believed to yield the best, richest understanding of the phenomena of interest
Flexible, iterative and continuous design; general plan of inquiry, but not rigid set of queries; Interviewer as traveler or miner
Informal Conversational interview- adopt socially acceptable incompetence role; may need to utilize guided conversation to stay on track without being abrupt
Interview Guides - assure similar info from informants and allow conversational, flexible style, but add a layer of formality
Standardized Open ended Interviews- specific wording to questions
Use of tape recording and/or video
Field Journal And Field notes- include both observations and interpretations and questions
Don’t trust Memory
Take notes in stages- keynotes as it happens; full notes after; interpretations
Take as many notes as possible
Rewriting your notes
Create Files- Have Master file
Have chronological order file
Look for patterns and begin organizing
Code files for patterns and filing
Have bibliographic file
Start memoing file
Cross reference notes
Use of computers- NUDIST, Ethnograph, ATLAS/ti
Can find words, code
Inductive Logic- first look for similarities and differences
Look for norms of behavior
Look for any universals
Lofland and Lofland
Look for frequencies
Look for magnitudes
Look for structural aspects
Look at processes
Look for potential Causes
Look for consequences
Interaction between data analysis and further collection is a richer, more nuanced understanding
Risk is that as you begin to understand, may begin to see only that
Can augment qualitative observations with quant,
Can get another researcher’s conclusions
Use introspection to attempt clean data
Provincialism-see things through own lenses
Going Native- over identify and lose analytic stance
Emotional Reactions- lose analytic stance due to emotional responses; team helps
Questionable cause-alternative explanations
Suppressed Evidence- what evidence is disregarded
False Dilemma- by focusing on one dichotomy, may ignore other possible factors
CASE STUDY- characterized by exclusive focus on a single case in
1-Investigates a contemporary phenomena within its real life context
2 the boundaries between the phenomena and context are not clearly evident; and
3- multiple sources of evidence are used.
Hope for analytical generalization
Clinical case studies as developer for practice wisdom fell out of favor in the 60's-70's
Client Logs also useful in collecting data
Medical technology has grown in its ability to see within the body, to diagnose genetic anomalies and to treat multiple health conditions. The norms about emotional responses to the solutions made possible by this technology seem to form more slowly. Social workers are frequently found at the interface between the use of new medical technologies and the people who are recipients of the technology’s “benefits” (Kerson, 1981). In this exploratory study, women experiencing therapeutic abortion after the diagnosis of a fetal anomaly by medical technologies of Level II ultrasound and amniocentesis will be interviewed. The research question to be explored is: With little normative guidance, how do women experience and make sense of their pregnancy loss which is due in large part to new technology?
This question carries two assumptions: 1- a sense of loss will occur and will be based on the way the woman gives value to the entity within her uterus and 2- the woman’s bereavement experience will be affected by the secrecy and lack of emotional norms inherent in using new prenatal diagnosis and termination techniques. Both of these assumptions will be explored. Additionally, scores on the Perinatal Grief Scale (PGS) will be compared to standardized, normed scores (from the case of spontaneous loss) to identify any similarities or differences.
Problem Statement and Pertinent Literature Review:
In the face of new prenatal diagnosis techniques, women and couples are forced to make decisions and cope with the emotional ramifications of decisions about what to do when fetal anomaly is diagnosed. Currently, prenatal diagnosis is much more widespread and “normal.” Despite this, norms about emotions following therapeutic abortion following positive diagnosis are much less clear and “normal.” Practice wisdom holds that cultural norms help guide emotional experience. When norms are lacking, individuals must respond not only to their affective state but also to the confusion about how they are “supposed” to feel. Social workers are frequently called upon to work with individuals trying to make sense of their experiences with new medical technologies.
It is unclear how many pregnancies result in therapeutic abortion as a result of these fetal diagnoses. The term therapeutic abortion (TAB) will be used to designate abortions due to the finding of fetal anomalies. Other types of surgical abortions will be referred to as elective abortions (EAB). TAB data are unavailable, though collection has been recommended by the Centers for Disease Control (1995). One begins to get a sense of the growth of the population experiencing therapeutic abortion by piecing together several sources of information. NARAL (the National Abortion Rights Action League) reports that approximately 10% of the million abortions done yearly in the U.S. are after the first trimester and that the majority of these are due to fetal or maternal health concerns (1998). This means that each year approximately 100,000 U.S. women terminate their pregnancy due to fetal anomaly (and the number is probably higher since women may have chorionic villi sampling (CVS) and get diagnosis and termination, if necessary, before the end of the first trimester.) Despite this, formal research about cultural norms regarding the emotional aftermath of therapeutic abortion have been very limited. Consequently, this research will explore the emotional aftermath of therapeutic abortion and will further attempt to identify factors which differentially affect the grieving process of those experiencing therapeutic abortion in contrast to those experiencing spontaneous loss (SAB- miscarriage and fetal death).
Perinatal grief is not a commonly understood phenomena. The experience of grief following a pregnancy termination due to the finding of a fetal anomaly is even less understood. Nevertheless, as prenatal screening has increased and perinatal loss has come within the public consciousness, understanding of the grief process following perinatal loss (SAB & TAB) is an important goal.
At this time, most pregnant women in the U.S. and westernized countries have access to prenatal diagnosis and are strongly encouraged to make use of genetic screening tools and other diagnostic procedures . In the U.S., the American College of Obstetricians and Gynecologists’ protocol for management of pregnancy virtually assures that any pregnant woman who receives prenatal care in the U.S. will have some type of prenatal screening or testing. The social norms for pregnancy, as reflected in consumer literature about pregnancy (see for example What to Expect When You’re Expecting, 1991), imply that “good” mothers will have these screenings as part of taking good care of their pregnancies, and by extension, their “children.” Indeed, Santalahti, et al. quotes a woman saying “having a disabled child is seen as a personal fault as earlier having a girl was seen as such”(p.1072). Another woman is quoted “that nowadays one does not have the right to produce a disabled child, because today it is possible to find out before hand” (p.1072, 1998). One can begin to see that, though the norms regarding pregnancy are ostensibly about accepting the best routine medical care (and genetic/fetal screening), the reality is that this often implies intent to intervene, usually by pregnancy termination, should the fetus be found to be affected. Shiloh (1996) comments that “The public has become accustomed to considering genetic risks when making reproductive decisions, like utilising (sic) prenatal diagnosis for severe genetic conditions. Now, totally unprepared, they may be flooded with new and qualitatively different options for which no social guidelines exist” (italics added). The lack of guidelines (norms) in the face of widespread use of the technology requires further understanding about perinatal grief after TAB.
For many years, women experiencing stillbirth or miscarriage (SAB) were told to “just forget about it and have another.” Clinical experience shows that many women were conflicted, torn between their internal affective state and the cultural norm that they should move on, with no need to mourn. By the 1980's, women began rebelling against these messages and a consumer literature evolved (Borg and Lasker, 1981; Panuthos and Romeo, 1984; Peppers and Knapp., 1980). These books, written by scholars who had experienced perinatal loss and then turned their academic training on it, were most focused on asserting the bereaved parents’ right to grieve. The most enlightened clinicians of the day compared perinatal loss to the death of a spouse (Bowlby, 1980/1998). With the development of this lay literature, clinicians began to be aware of the differences between spousal death and the death of a fetus/child. These differences include the sense of parental responsibility for the well being of the offspring and the sense that the life cycle is out-of-order when a child dies before a parent. In one of the few longitudinal studies involving perinatal grief, Lasker and Toedter (1991) identify the availability of social support and prior mental health as the two most important factors in coping successfully with perinatal loss. Goldbach, et al (1991) also identified gestational age as positively associated with grief, though not as linearly as had been expected.
By the early 1990's, a similar group of scholars who had experienced decision-making regarding a fetal anomaly began to write for the public (Lyons, 1993; Minnick, 1990; Rapp, 1984) and genetic counselors began to write about the emotional aftermath of terminating an anomalous pregnancy (Green & Statham, 1996; Jorgansen, et al, 1985; Kessler, 1979; Kolker, 1989; Weertz, 1995). One of the first to write specifically about the experience of terminating a desired pregnancy after a positive prenatal diagnosis was Rayna Rapp in “XYLO:A love story” (Arditii, pp.322-323,1984). She wrote,
The isolation of this decision and its consequences are intense. Hard as it is to break barriers of privacy that surround sex, birth control, pregnancy, and childbirth in our culture, the feminist in me ardently champions their demise....Abortion after prenatal diagnosis is so medicalized, so privatized, that there is no common fund of knowledge to alert us as couples, as families, as friends, to the aftermath our ‘freedom of choice’ entails.
More recently, Rapp (2000) seems to be the only researcher to have studied
this population in the US. She includes a chapter on “Becoming Un-Pregnant”
in her book reporting her qualitative study of prenatal testing.
Jorgansen et. al. explicates the difference of this experience from that of spontaneous pregnancy loss; “A decisive difference between stillbirth and abortion of a malformed fetus is that in the case of abortion, the parents have actively decided to terminate the pregnancy, thereby causing the death of a living fetus” (1985, p.32). As Jorgansen’s quote implies, decision-making carries with it a unique sense of responsibility for the loss, the fact of having made a decision to terminate. Additionally, Kolker comments “After the abortion women usually find themselves alone in their grief. Whereas a baby is real to anyone who sees it, a fetus is real only to the woman who carries it. The loss experienced by the mother is not socially recognized or shared. Medical authorities, societies at large, family members and even husbands tend to trivialize this loss...Selective abortion of a wanted pregnancy at any gestational age is experienced as the loss of a child that one will never have and to whom one is already attached.” (1985, p.607). It seems likely that women, like the women experiencing SAB in the past, have conflicting messages (terminate and move on with your life vs. a painful affective state). Particularly, the sense of being responsible for their loss may make them feel they are not entitled to their grief nor to social support.
Other than Rapp’s foray into research with this population, the only studies of women’s emotional responses to therapeutic abortion seem to have been done in Great Britain or Scandinavia (Iles & Gath, 1993; Korenromp et al, 1992; Marteau, et al, 1989). Since US culture includes more contention about abortion generally (Joffe,1995), it is theorized that emotional responses here may vary from Europeans’ due to differences in social support and internalized stigmatization. In virtually any other loss, a spouse, a parent, even a long time family pet, support is generally offered by significant others. In this, the woman is isolated, due to the perinatal aspect of the loss, and by the sense of responsibility obviating one’s right to grieve.
Inherent in grief is the value of the lost object. Few have explicitly discussed this aspect of loss. Whether a women conceptualizes the entity inside her uterus as a parasite, a clump of cells, a fetus, a baby, my son etc. will have implications for how this woman grieves the loss. This socially constructed entity then influences the bereavement process. This is why quantitative methods alone can not illuminate the experience of this loss; intensive interviewing is one of the few ways that allows analysis of the way a woman views the entity within the context of her grief process.
Theories about grief abound. The psychoanalytic model of grief equates the fetus with “the missing and wished for penis, as Freud assumed”(Benedek, 1970, p. 147) and postulates an increasing degree of “cathectedness” to the fetus. Any loss of a cathected object is believed to inspire mourning and melancholia (Benedek, 1970, p. 147). Attachment Theory focuses on the attachment process starting from the time of awareness of pregnancy and states that “many of the most intense emotions arise during the formation, the maintenance, the disruption and the renewal of attachment relationships...Similarly, a threat of loss arouses anxiety and actual loss gives rise to sorrow” (Bowlby,1980, p.40). Simos (1979) implicitly recognizes lost object value when commenting that every culture grieves differently and that these rituals are often based on the lost entity. This understanding of grief implies a social learning aspect to grief.
Worden (1982) asserts that all grief requires expression in order to have resolution of the grief process. He proposes a task centered approach to grief work that includes: 1) accept the reality of the loss, 2) experience the pain of grief, 3) adjust to an environment in which the deceased is missing and 4) withdraw emotional energy and reinvest it in another relationship. Kubler-Ross’ model (1969) is more stage focused, theorizing that people progress through stages of denial, anger, bargaining, depression, and acceptance. It has become classic in its application to the grief process. Many models exist, and most share the drawback of looking as if they are a recipe for “how-to-do-grief-right.” This unfortunately implies that there is one correct way to “do grief work,” one that appears to be one-size-fits-all for customary loss situations. This is seldom true (Leon, 1992). Indeed, as noted above, perinatal grief is unique and differentiated from death of a spouse. Now it seems to be assumed that grief after TAB is similar to grief after SAB. This assumption must be explored.
Each of these theories would differ in its explanatory power for this type of loss. Intuitively, it is clear that a desired pregnancy tends to inspire valuing of the contents of the uterus and that loss of the desired entity therefore inspires grief of some sort. It is also general knowledge that the loss of an unvalued entity inspires much less (if not absent altogether) grief. Given this, this research will involve only those women who desired their pregnancies. Whether there is a fairly unitary response, as psychoanalytic theory would imply, a response mirroring the three attachment types, or multiple responses as Simos and social learning would imply, will also be an area of exploration.
Cultural lag and social support:
Ogburn put forth the hypothesis of cultural lag in 1922:
The thesis is that the various parts of modern culture are not changing at the same rate, some parts are changing much more rapidly than others; and that since there is a correlation and interdependence of parts, a rapid change in one part of our culture requires readjustments through other changes in the various correlated parts of culture. (p.201)...These material things consist of houses, factories, machines, raw materials, foodstuffs and other material objects...But a good many of the ways of using material objects of culture involve rather larger usages and adjustments, such as customs, beliefs, philosophies, laws, governments...The cultural adjustments to material conditions, however, include a larger body of processes than the mores; certainly they include the folkways and social institutions. These ways of adjustment may be called, for purposes of this particular analysis, the adaptive culture... But these changes in the adaptive culture do not synchronize exactly with the change in material culture. There is a lag which may last for varying lengths of time, sometimes indeed, for many years. (pp. 202-3)
Ogburn attributes “nervousness and insanity” to the “lack
of adjustment between culture and the psychological equipment of man” (p.312)
and he further claims “social problems are indices of maladjustment” (p.335).
All of the above seem apropos to the current research aim. By tracing
the strategies and meanings developed by women as they navigate the terrain
between the development of prenatal diagnosis and loss, we may develop
a sense of the process by which adaptive culture develops.
Theoretically, understanding how individual women strategize to adapt individually
and socially during the ambiguity of cultural lag will allow us, in turn,
to understand how individual agents can act to change structural features
of the social environment, and simultaneously, how they adapt to these
same newly developed structural features. Hopefully, this will allow moves
toward better levels of adjustment, minimizing “nervousness and insanity”
and “social problems.” Instead of focusing on the time periods of
lag and the inconsistency between the initial point of new material culture
and the end point of development of adaptive culture, this research will
focus on the intervening phase where ambiguity exists as to how the adaptive
culture will develop.
Summary of Conceptual Framework:
In summary, this research will look at the experience of women following the termination of a desired but anomalous pregnancy and will do so from a social constructionist perspective through the lens of bereavement theory. It will utilize the concept of cultural lag with an underpinning assumption that adaptative culture will develop to bring material and normative culture back into equilibrium. Further, it will be used to explore whether women’s emotional expression and experience of support are influenced by the lag between the development of prenatal diagnosis and termination technologies and the (as yet unmet) development of norms regarding emotional expression during and after this experience. It is theorized that this type of loss is frequently kept secret, removing much of the social support that Lasker and Toedter (1991) identify as crucial to successfully grieving a SAB. Additionally, it also seems that the sense of this experience as new and uncommon (due to cultural lag) may impact by increasing a sense of isolation, stigmatization and decreasing options for social support.
Design and Data Collection Strategy:
This will be an exploratory, primarily qualitative study for the purpose of further hypothesis and theory generation about the effect of cultural lag on emotional experience, bereavement and needs for support. The key informants will be women who have experienced a termination for fetal anomaly. The data collected will be primarily qualitative from in-depth interviews (focused by a flexible interview guide-see Appendix). Some quantitative data using The Perinatal Grief Scale (Toedter et. al., 1988) will also be gathered. Obviously, the fathers are also deeply affected, however for purposes of this initial research, a decision was made to focus on just the mothers at this time.
Data Collection and Measurement:
Each individual will be asked (after signing informed consent) to complete The Perinatal Grief Scale (Toedter,L. et al., 1988). Some of the first empirical research to explore perinatal grief empirically began in the late 1980's as a response to the 1984 Institute of Medicine Committee for the Study of Health Consequences of the Stress of Bereavement call “for research on bereavement using groups not typically studied”. Toedter, Lasker and Alhadeff began work on the Perinatal Grief Scale (PGS; Toedter, et al., 1988, p 435), an instrument which now has short, long, and Dutch forms (Lin & Lasker, 1996). In developing the scale, the first empirical gathering of information occurred. Specifically, a sample of 138 women and 56 men who had experienced spontaneous pregnancy loss were asked to complete the PGS and three sub categories of grief were theorized; active grief, despair and coping. The Perinatal Grief Scale (Toedter et al., 1989) is an 84 item Likert scale measure of grief following a pregnancy loss. It has been factor-analyzed into three sub-scales-Active grief, Difficulty coping and Despair. The Perinatal Grief Scale utilizes a core of questions from the Expanded Texas Grief Inventory (Zisook,1982) and incorporates questions related to 21 dimensions of grief conceptualized by the developers of the scale. It has been used broadly during the 1990's after its initial development and validation in 1988.
The short form of the PGS (33-item with alpha=.86-.92 with long form) seems most applicable and feasible for this study (Potvin, et al., 1989). It’s self administered style and relatively short easy completion make it less intrusive and difficult for respondents. Its easy scoring makes it easier for the researcher to collect and analyze data, particularly with the inclusion of the three sub scales. Also, these three subscales (which show loading of their identified items from .53- .78 and significance at the p<.001 level) make it more likely that differences (if they exist between this group and the groups on which they were normed) will be found and will be able to be defined in terms of the sub scales. The PGS has been used to measure change in grief over the passage of time and has shown expected decreases in active grieving and despair as time elapsed. This not only provides evidence for construct validity (assuming the theoretical hypothesis that grief subsides with time is correct), it also may provide eventual information to allow norming for different types of loss at different time frames. While never written about nor used as a diagnostic or screening tool, the potential may be there should the above data collection and norming occur.
Additionally, an intensive interview guide (see Appendix) will include collection of information regarding the woman’s experience of the medical intervention, activity, and the support she received following her loss. This includes (but is not limited to) exploring the perceived amount of support as evidenced by phone calls received expressing sympathy, cards received expressing sympathy, concrete acts of support (providing child care/ meals during recovery), as well as exploration of the woman’s experience of her spouse’s support. Areas where expected support was not received, or where she elected not to elicit support will also be identified. Eco-maps will be used in the interview to enable visualization of support networks. In the interview, an open ended exploration of how the woman endowed her pregnancy with meaning will occur and may constitute another aspect effecting the experience of grief.
In qualitative fashion, earlier interview responses will be used to define later areas of exploration in refining possible categories for how women classify their pregnancies at this stage. Theoretically driven sampling will occur to the point of saturation with the purpose of generating information related to each of the sensitizing concepts (Beeman, 1995) of Intrapsychic issues and Interactional Challenges (see Data analysis sensitizing concepts in Appendix). Some data will be gathered from care providers, especially social workers who work with this population, as a way of contextualizing the issue and assuring accurate analysis.
A sample of approximately 30 women experiencing termination of an anomalous pregnancy will be bounded by:
1- having had a desired pregnancy within a committed relationship;
2- where the fetus was found to be anomalous;
3-and the decision was made to terminate the pregnancy between the 16th and 24th weeks of estimated gestation ;
4- and this experience occurred within the prior 6 months.
The sample will be limited to women in committed relationships who are between the ages of 21 and 40 (the typical socially accepted child-bearing years) who have lost a desired pregnancy. Relationship status and the desire for the pregnancy are deemed inclusion criteria due to the possibility that support indices may be contaminated by limited support being available to single women because of their status as unmarried pregnant women or to the undesired nature of the pregnancy. All women will be within one year of their loss, but more than 7 weeks from the time of their loss. Additionally, women whose fetus was between 16 and 24 weeks of gestational age would be included, but pre 16 weeks EGA (estimated gestational age) and post 24 weeks EGA would be excluded. The rationale for the 16 week EGA cut- off is two fold. First, most TAB’s occur after this time because prenatal testing generally does not occur until this point in the pregnancy. Second, this is just after the point at which most women begin to detect fetal movement and begin attaching further to the fetus. The 24 week EGA exclusion criteria exists because this is the point at which procedures for TAB become quite different and those who deliver spontaneously at this point have a beginning chance of viability. This allows analysis in the narrowed range of 7 weeks, during which maternal attachment has been theorized to remain relatively stable.
The sample will be recruited from Genzyme, the provider of genetic counseling and lab testing services to most of the greater Philadelphia area. The genetic counselors will be enlisted to refer clients to the researcher if they meet inclusion criteria and if they are willing to participate in the study. Following the discovery of a positive diagnosis, women/couples meet with their genetic counselors to discuss the findings and the routes for treatment. The genetic counselors will be asked to include the recruitment letter on page 22 when they provide other written materials at the end of that appointment. They will explain that the letter regards a research project concerning emotional responses to diagnosis of genetic anomaly and termination. Further, they will explain that participation status will have no effect on the services they receive from Genzyme or other care providers. They will inform the women that Genzyme (and other care providers) will not be apprised of whether they participate or not.
When the woman calls to agree to participate, she will be sent a follow up letter confirming the time, date and place for the meeting, a demographic collection card and the letter will include a brief summary of topics for discussion to allow her to have realistic expectations about what to expect (to minimize anxiety). The administration of the questionnaire and the interview would be done at the same time (to avoid attrition issues) and a choice of meeting at the hospital/ doctor’s office, participant’s home or neutral space would be offered. Additionally, a small incentive (non-monetary) will be offered (possibly a book on perinatal grief). Allowing the participants to choose the setting minimizes their inconvenience and anxiety, however it may raise issues of distraction, interruption or re-awakening of disturbing memories (in the case of meeting in the setting where the loss occurred or was diagnosed). Nevertheless, in negotiating a meeting place with the participant, these issues would be raised to allow the participant to choose the setting most comfortable for her.
This study will add to the understanding of the way women grieve after terminating an anomalous pregnancy. New understandings about the prenatal bonding experience are also likely to emerge. This may mean a more nuanced understanding about how valuing a lost entity influences the bereavement process. It is possible that a mechanism by which normative/ adaptive culture evolves after the development of new medical technologies may also become apparent. Hence, though the results of this study may seem local and specialized, there are likely to be broad implications for understanding grief, prenatal bonding, the importance of social support in grief, and the cultural lag between medical technologies and emotional experience. Additionally, this may clarify the role of social work in assisting individuals in making meaning of the conflicting messages they receive and in helping to mediate these uncomfortable experiences. This experience may provide an exemplar of how new technologies affect emotional experience, particularly when that “newness” exacerbates isolation. Other examples might include turning off life supports for a loved one or deciding whether to pursue genetic therapies or fetal surgery. Therefore, this research may have broad applicability to the role of social work in emotional support and norm development during implementation of new medical technologies.
Appelbaum, R.P. (1970). Theories of social change. Hopewell, NJ: Houghton-Mifflin.
Beeman, S. (1995). Maximizing credibility and accountability in qualitative data collection and data analysis: A social work research case example. Journal of Sociology and Social Welfare, 22 (4), 99-114.
Borg, S. and Lasker, J. (1981). When Pregnancy Fails: Families Coping with Miscarriage and Stillbirth and Infant Death. Boston: Beacon Press.
CDC web page: http://www.cdc.gov.
Genzyme web page: http://www.genzyme.com/prodserv/genetics.
Goldbach, K.R.C., Dunn, D.S., Toedter, L.J., & Lasker, J.N. (1991). The Effects of Gestational Age and Gender on Grief after Pregnancy Loss. American Journal of Orthopsychiatry 61, 461-467.
Green, J. & Statham, H. (1996). “Psychosocial Aspects of Prenatal Screening and Diagnosis” in Marteau, T. and Richards, M. (1996). The Troubled Helix: Social and Psychological Implications of the New Human Genetics (pp. 140-164). Great Britain: Cambridge University Press.
Iles, S. & Gath, D. (1993). Psychiatric outcome of termination of pregnancy for foetal abnormality. Sociological Medicine, 23, 407-413.
Joffe, C. (1995). Doctors of Conscience: The Struggle to Provide Abortion before and after Roe v. Wade. Boston: Beacon Press.
Jorgensen,C., Uddenberg, N., Ursing, I. (1985). Ultrasound diagnosis of fetal malformation in the second trimester. Journal of Psychosomatic Obstetrics and Gynecology, 4, 31-40.
Kolker, A. (1989). Advances in prenatal diagnosis: social-psychological and policy issues. International Journal of Technology Assessment in Health Care, 5, 601-617.
Korenromp, M.J., Iedema-Kuiper, H.R., Van Spijker, H.G., Christiaens, G.G.M.L. & Bergsma, J. (1992). Termination of Pregnancy on Genetic Grounds; Coping with Grieving. Journal of Psycho-somatic Obstetrics & Gynaecology, 13, 93-105.
Kubler-Ross, E. (1979). On Death and Dying. New York: Macmillan Publishing Co., Inc.
Lasker, J.N. & Toedter, L.J. (1991). Acute vs. Chronic Grief: The Case of Pregnancy Loss. American Journal of Orthopsychiatry 61, 510-522.
Leon, . 1992. Perinatal loss: Choreographing grief on the obstetric unit. American Journal of Orthopsychiatry, 62 (1), 7-8.
Lin, X., Lasker, J.N. (1996). Patterns of Grief Reaction after a Pregnancy Loss. American Journal of Orthopsychiatry 66, 262-71.
Lyon, W. with Minnick, M. (1993). A Mother’s Dilemma. Mullet Lake, Michigan: Pineapple Press.
Mareau, T.M., Johnston, M., Shaw, R.W., Michie, S., Kidd, J., & New, M. (1989). The impact of prenatal screening and diagnostic testing upon the cognitions, emotions and behaviour of pregnant women. Journal of Psychosomatic Research, 33(1), 7-16.
Marteau, T. and Richards, M. (1996). The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Great Britain: Cambridge University Press.
Minnick, M., Delp, K. and Ciotti, M. (1990). A Time to Decide, A Time to Heal. Mullet Lake, Michigan: Pineapple Press.
Yesterday I Dreamed Dreams.... (1991). Compiled by M. Minnick. Mullet Lake, Michigan: Pineapple Press.
NARAL web page: http://www.naral.org.
Panuthos, C. and Romeo, C. (1984). Ended Beginnings: Healing Childbearing Losses. Massachusetts: Bergin and Garvey Publisher’s Inc.
Potvin, L., Lasker, J.N., & Toedter, L.J. (1989). Measuring grief: A short version of the perinatal grief scale. Journal of Psychopathology and Behavioral Assessment, 11, 29-45.
Rapp, R. “XYLO: A True Story” in Arditti, R., Klein, R.D. and Minden, S. (1984). Test Tube Women. London, England: Pandora Press.
Rapp, R. (2000). Testing women: Testing the fetus. New York: Routledge Press.
Shiloh, S. (1996). “Decision-Making in the Context of Genetic Risk” in Marteau, T. & Richards, M. The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Great Britain: Cambridge University Press.
Toedtler, L., Lasker, J., Alhadeff, J. (1988). The Perinatal Grief
Scale: Development and Initial Validation. American Journal of Orthopsychiatry,
Worden, J.W. (1982). Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner. New York: Springer.
Zisook,S., Devaul, R.A. & Click, M.A. (1982). Measuring symptoms
of grief and bereavement. American Journal of Psychiatry, 139, 1590-1593.
HUMAN SUBJECTS Statement:
The letter of introduction provided to the women by the genetic counselor or obstetrical care providers’ office incorporates reassurances of confidentiality and the voluntary nature of participation. At the time of the interview, the first item of business will be explanation of the consent form and affixing of signatures. Ample opportunity for questions will be provided and the participant will receive a copy of the consent.
As noted within the consent (see appendix), the primary risk involved with this study is the reawakening of painful memories. Nevertheless, it is not likely that these memories are far from the surface since it will be a relatively recent occurrence and one which most women seem grateful to discuss. Should a woman have an adverse response, she will be referred for appropriate follow up counseling. Both individual and group counseling referrals will be available.
Other potential risks relate to confidentiality, which will be zealously guarded. The tape and questionnaire will be marked only with an identifying code number. No names will be connected to the tape, questionnaire or transcript. The codes will be hand written on a sheet of paper which will be kept in a locked file cabinet.
These minimal risks appear manageable, particularly in light of the potential benefit to other women in similar circumstances.
Bryn Mawr College Graduate School of Social Work and Social Research
Consent Form- Study of Perinatal Grief
Goal: The goal of this research is to learn more about emotional experience
after a perinatal loss due to fetal anomaly. The use and availability
of support are also of interest. This research is also conducted
to fulfill the requirements for completion of doctoral studies.
Who: Women who are between the ages of 21 and 40, who are married (or in a committed relationship) and who have experienced perinatal loss between the 16th and 23rd weeks of gestational age (4-6 months of pregnancy) will be involved. Further, participants will have surgically terminated a pregnancy because of a genetic or other problem with the fetus.
What: If you choose to participate and meet the above criteria, we will meet for approximately 2 ½ hours at a place chosen by you. First, I will ask you to complete a brief circle-the- response-type questionnaire. Immediately following that, we will meet to have you share the individual aspects of your experience. I will audiotape this part of the interview for purposes of assuring accurate data collection. Only I will hear it. Your name will not be attached to the tape, nor the questionnaire and the tape will be destroyed after transcription.
Any Risks?: This loss is likely a painful experience for you. Some may fear discussing it and it may revive anxious or painful feelings. Referral for support services will be available, if necessary. Confidentiality of information will be strictly observed. Your name will not be used in any reports from this research, nor will it be directly connected with the data.
Any Benefits?: While there are no direct benefits, many people find
that sharing their experience lightens the burden. Additionally,
you will know that you have helped to create a more understanding environment
for other women who experience perinatal loss. As a token of appreciation,
you will be provided with a small gift related to recovery from perinatal
Confidentiality- You will be protected from disclosure of your identity. Tapes and PGS questionnaires will not have your name on them and the tapes will be destroyed after the completion of this study.
Withdrawal- You may refuse to answer any question or to withdraw from the study at any time without repercussions.
Your signature indicates that you have read and understand the above information and that you have been given the opportunity to ask any questions of the interviewer. If you have further questions, please feel free to contact me. You may also contact Dr. Kerson if you have any concerns about the research. If you have any questions about your rights as a research participant, please contact Dr. Leslie Alexander, Chair, Bryn Mawr College IRB, at 610-520-2635.
Judith L.M.McCoyd, MS, QCSW T. Kerson, Ph.D.-Bryn Mawr College
Professor of Social Work and Social Research; Dissertation Director
(610) 284-2287 (610) 520-2632
Bryn Mawr College Graduate School of Social Work and Social Research
Consent Form- Study of Perinatal Grief
Goal: The goal of this research is to learn more about the emotional experience after a perinatal loss due to fetal anomaly and the ways social support is used. This research is also conducted to fulfill the requirements for completion of doctoral studies.
Who: Social workers, genetic counselors, obstetricians, midwives, and others who provide care women who have had to surgically terminate a pregnancy due to the discovery of a fetal anomaly (a genetic problem or other condition).
What: If you choose to participate we will meet individually or as a focus group, or speak by phone and I will take notes for purposes of assuring accurate data collection.
Any Risks?: Confidentiality of information will be strictly observed. Your name will not be used in any reports from this research, nor will it be directly connected with the data.
Any Benefits?: You will know that you have helped to create a more understanding environment for women who experience perinatal loss and help provide ideas about how to effectively provide support to them.
Confidentiality- You will be protected from disclosure of your identity. Your name or position within an identified institution will not be connected to any data or reports.
Withdrawal- You may refuse to answer any question or to withdraw from the study at any time without repercussions.
Your signature indicates that you have read and understand the above information and that you have been given the opportunity to ask any questions of the interviewer. If you have further questions, please feel free to contact me. Dr. Kerson is also available to address any concerns about this research.
Judith L.M.McCoyd, MS, QCSW T. Kerson, Ph.D.-Bryn Mawr College
Professor of Social Work and Social Research; Dissertation Director
(610) 284-2287 (610) 520-2632
Bryn Mawr College Graduate School of Social Work and Social Research
This letter is being given to you because your midwife, genetic counselor or obstetrician believes you may be appropriate for participation in a study to understand more about perinatal grief. For nearly ten years, I have been working with women and couples who have interrupted a pregnancy due to diagnosis of a fetal anomaly. I have found that people receive differing social support and that this seems to affect their emotional experiences. I hope to use this doctoral research to explore this connection further. By participating, you can help us not only to understand this experience better, but also to provide more useful assistance to people going through this experience in the future.
If you choose to participate, you can be assured that I will zealously protect your confidentiality (in fact, your name will not be attached to any of the data). Also, if there are any questions you prefer not to answer, or if you choose to withdraw, you may do so at any time without repercussions. Your participation is completely voluntary and will have no effect on services you receive from Genzyme, or other care provider. They will not be informed of your participation status.
Participation would consist of calling me at (610) 284-2287 to let me know of your willingness to participate, or to ask any questions. If you choose to participate, we will set up a time and place for us to meet at your convenience. We will meet for about 2 ½ hours during which you will complete a brief circle-the-response-type questionnaire. After that, we will talk about your experience, especially the types and amount of social support you received.
Though some people fear that this discussion will revive painful feelings, most find that they feel relieved by the chance to talk about it openly. Additionally, you will know that you have helped to create a more understanding environment for other people who experience perinatal loss. At the end of our meeting, you may select a small gift from support resources related to this experience as a token of my gratitude for participating.
I truly appreciate your willingness to consider assisting me, and people experiencing perinatal loss, in this way. Thank you!
Judith L.M.McCoyd, MS, QCSW
Bryn Mawr College Graduate School of Social Work and Social Research
I want to thank- you again for agreeing to participate in this study
of emotional experience after interruption of a pregnancy due to fetal
We have agreed to meet on ______________(date) at _____o’clock for approximately 2 hours. We will meet at _____________(place). The directions are below.
Attached you will find a Face Sheet that you can fill out to bring with you. Please feel free to bring it blank if you have questions about its completion (I will also have extras if you forget it). When you arrive, I will give you the questionnaire and then we will discuss your experience. We will discuss topics including who you chose to tell “the whole story,” what your feelings are about what you lost, and how secrecy affects this experience. I include this to allow you to get a sense of the topics we will discuss so that you can think about them, and so that you do not have to be nervous about what topics will be covered.
Please feel free to call me with any questions you may have about participating in this study. As I said in the first letter, you can withdraw at any time if you are too uncomfortable. Your participation will assist other women in this situation by allowing us to understand the support needs of women going through this experience. Additionally, after the interview, you will be given information about this experience that may be of additional support to you. Again, thank you!
Judith L.M.McCoyd, MS, QCSW
FACE SHEET INFORMATION: Code Number_________________
Your age- ____
Relationship status- (circle one and fill in blank)
Committed relationship- # years____ Married- # years____
Separated-years together/years apart____ Single-
How do you identify your race/ethnicity? _____________
How do you identify your religious identification/ moral philosophy?_____________________
How do you practice this belief system?______________________________________
What was your highest level of education?________________
Do you do any paid work now? Yes No What?____________________
How many living children do you have?_____
Please list the age and sex of your living children:_____________________________
Are any of your children adopted or not birthed by you? If so, which one/s?________
Did you have difficulty getting pregnant? Yes No
What help was required to get pregnant?______________________
Did you have any prior losses? Yes No
Please include dates for each:
Death of living child___________/____________ (date of death/ child’s age at death)
Any prematurely born?________/______________ (date of birth/ outcome)
Stillbirth__________ Miscarriage___________/_________ (date/ what gestational age?)
How do you refer to the entity that was lost? (fetus/ baby/ it/ the pregnancy/ by the name you gave)?
What was the entity’s sex? Unknown Male Female
What was the estimated gestational age at the time of the pregnancy interruption?_____________
What was the diagnosis / reason for interruption (to extent known)? _________________________
How long has it been since your procedure was done?__________________
Have you gotten any formal counseling in that time? Yes No Who?____________
Perinatal Grief Study- Judie McCoyd
Substantive Framework of Interview:
* Explore the nature and intensity of the grief experienced using the standardized Perinatal Grief Scale. (PGS)
* Explore the ways women have endowed their pregnancies with meaning- particularly how they view/ed the fetus prior to the loss, at the time of their loss and immediately after, and how they view the fetus now.
* Elicit information about formal and informal rituals/services undertaken to validate/ recognize the loss.
* Elicit information about types of support offered and/ or utilized.
* Explore individual aspects, explanations and understandings women have about the medical context of their loss and their subsequent grief experience.
This follows a “flow”, but will not be conducted as a structured interview- more as an exploration which attempts to gather most of this information in the conversational flow of the interview. Wherever * is used, it indicates that the informant’s language for referring to the fetus will be used.
Transition Questions from PGS administration
How was it for you completing this questionnaire?
Are you comfortable beginning to tell me about your experience of your loss?
Experience of Medical intervention and Emotional Experience:
How was * ‘s problem diagnosed?
Walk me through the experience of getting the diagnosis.
Was this a diagnosis you had ever heard of before? Had anyone you knew ever had a fetal diagnosis?
Who was with you? What support did they provide or not provide?
What were your feelings about the diagnosis?
What did you understand about the next steps for medical intervention?
What do you remember about your feelings about * at that time?
What decisions had to be made during that time? How did you go about making them?
What feelings were connected to the fact of having to make decisions?
Who did you tell about your decision-making? Who did you decide not to tell?
What support did you get from others during that time? (Spouse/
parents/children/ friends/ family/ religious community) (Get sense of #
of cards, flowers, meals made)
What feelings did you have at that time?
Nature and Intensity of Grief after Loss:
After the loss, please describe your understanding of who or what * was to you.
How did you feel at that time?
Did you have any service/ ritual or other recognition of *? (Feelings?)
How did others respond?
Did you have any sense that this loss differed in any way from other losses you had experienced?
What things were hardest to cope with during that time? What were the easiest?
How did you decide who to tell “the whole story”? Who did you avoid telling?
What support (and type) did you receive from Spouse/ parents/children/ friends/ family/ religious community? (Cards, flowers, meals)
What was most helpful and what was least helpful?
How did your feelings unfold over the course of the weeks/ months following your loss?
How much do you feel your healing was physical and how much do you feel it was emotional? Nature and Intensity of Emotional Experience Currently:
How do you describe your understanding of who or what * was to you now?
What are your feelings and thoughts about your loss experience now?
What remains hard to cope with? What is easier?
What support do you still receive in regards to this loss? What would you wish to receive?
Do you find yourself acting differently in different social situations about your feelings about your experience? How do you determine how to act/ respond?
How do you use different “stories” for different people?
How do you expect your feelings to continue to evolve in regards to your loss?
Do you have any sense of having stages or levels of your emotional experience over time?
How do you envision your response might be different had you had a SAB?
Did you feel your supports understood enough about your loss to be able to offer support?
How does the fact of being able to diagnose and end a pregnancy affect you now?
How do you think this would be different if this technology were not available?
How does the cultural stance about abortion generally affect you?
How has this interview been for you?
Are there questions you have or areas you’d like to discuss more?
Is there any area that you think more information would be helpful to me in understanding your experience?
What advice would you offer women going through similar losses?
Data Analysis Sensitizing Concepts:(Not an interview guide)
1-How is the woman both constrained and freed by the lag of adaptive culture?
2- How are new “scripts” developed to provide guidelines for emotional expression in this ambiguous context? How does the woman differently value the input from various reference groups, including immediate family, extended family, friends, work colleagues, spiritual community and care providers?
3- How does the contestation of abortion in this culture affect the emotional experience and expression of the woman? How do Goffman’s notions about presentation of self, the spoiled identity and discreditable identity inform this question?
4- How do prior norms about attachment, motherhood and pregnancy coincide or conflict with developing norms as adaptive culture attempts to develop in response to the new prenatal technologies (material culture)?
5- Over the course of this experience, from pre-pregnancy to the time of the interview, how does the woman think about the entity in her uterus? What is the language she uses to describe that entity and how does she give it meaning (fetus/baby/name: Termination/ interruption/ elective abortion/ therapeutic abortion)?
1-How does the woman explain her experience differently in varied social networks? How do her rationales for these different explanations provide insight into how cultural lag affects her experience? Specifically, how does she determine how she presents her situation to her immediate family, extended family, friends, work colleagues, spiritual community and care providers?
2- What social support did the woman receive and how did this coincide or conflict with her expectations?
3- How are bereavement rituals/expressions of support applied under “normal”conditions?
4- How much do the expressions (?2) coincide or conflict with the “Normal” expressions (?3)?
5- What language does she use in varied social situations (fetus/baby/name: Termination/ interruption/ elective abortion/ therapeutic abortion)?
Rivitz Budget (One year):
To be named Transcriptionist (150 hours@ $15/hr) $ 2,250
Supplies and Justification:
Tape Recorder- Non- obtrusive, sensitive recording equipment necessary
Cassette Tapes- 70-100 tapes necessary $ 100
Paper and copying- Paper for transcription and copying for data analysis
Postage $ 50
Travel and Phone
Travel (to and from interviews)- 900 miles @ $.30/mile $ 270
Telephone Bills (Contacts with informants) $
Books or memberships to Heartbreaking Choice (assuming $10 for 40) $ 400
JUDITH L. M. McCOYD
420 Derwyn Road
Drexel Hill, PA 19026
Home: (610) 623-1270 Work: (610) 284-2287
Doctoral Candidate- Bryn Mawr College Graduate School of Social Work and Social Research
Qualified Clinical Social Worker (QCSW)
Institute of the Pennsylvania Society for Clinical Social Work May 1991
Three-year post-master's certification program focusing on psychological development over the lifespan from an Ego Psychology viewpoint, highlighting psychotherapeutic approaches to psychopathology
Academy of Certified Social Workers (ACSW) November 1989- December 2000
Pennsylvania Licensure (LSW) February 1989-2001
COLUMBIA UNIVERSITY SCHOOL OF SOCIAL WORK May 1985
Master of Science in Social Work
Emphasis: Health/Mental Health
ALBRIGHT COLLEGE May 1983
Bachelor of Science cum laude
Major: Individualized Study: Biology-Social Welfare-Psychology
HOLY FAMILY COLLEGE 1992-1998
Lecturer -- Social and Behavioral Sciences Department
Introductory Sociology - Spring 93-98:Fall 95-97
Marriage and the Family (SOCO 206) -Fall 92-94; Spring 95-98
Principles of Interviewing (PSY 205)-Spring 95
Medical Sociology-(SOCO 310)-Fall 96& Fall 97
Social Problems- (SOCO 206)- Fall 96-97
Junior Social Work Practicum- Spring 97
Introduction to Social Welfare- Fall 97 and Spring 98
Tasks included choice of text, development of syllabi, preparation and grading of student exams and assignments; participation in activities of the department, including feedback on student comprehensive papers and exams. Assisted with development of Master's in Counseling program.
BRYN MAWR COLLEGE 1999- current
Bryn Mawr, PA
Research Assistant 1999-2000 Assist Toba Kerson in compiling Boundary Spanning: An Ecological Reinterpretation of Social Work in Health and Mental Health Settings (in press)
2000-current Assist Carolyn Needleman, Sanford Schram and Tom Vartanian in limited evaluation of impact of 1996 welfare reforms.
CURRENT SOCIAL WORK EMPLOYMENT:
PRIVATE CLINICAL PRACTICE 1989-present
Bala Cynwyd, Pennsylvania
Provide weekly psycho-dynamic psychotherapy and/or cognitive behavioral
counseling to a range of clients, both individuals and couples. Primary
counseling clientele have been women (with or without their partners) experiencing
events related to pregnancy (e.g., high-risk pregnancy, premature delivery,
unplanned pregnancy, and perinatal bereavement).
Psychotherapy clients have primarily been those with depression and/or anxiety disorders.
Facilitate a support group for parents experiencing grief due to termination of a pregnancy due to anomaly.
THOMAS JEFFERSON UNIVERSITY -IN-VITRO FERTILIZATION PROGRAM
Social Worker coverage for maternity leave September 92-January 93
? Assessed the psycho-social readiness and capability of women and couples to engage in IVF treatment, during their initial consultation. Provided psycho-social education and help with expectation formation re: the IVF process and its impact on the individual pursuing treatment, as well as on their relationships. Provided ongoing support, particularly around bereavement issues following unsuccessful cycles.
U. S. HEALTHCARE 1990-1992
Social Work Consultant
? Provided home visitation for the purpose of psycho-social assessment; assistance with transition from acute setting to home care, referral, counseling and communication problem solving among patients and various care providers. Chose not to renew contract after birth of youngest son.
PENNSYLVANIA PERINATAL ASSOCIATION 1991-1992
Bryn Mawr, Pennsylvania
? Developed and taught curriculums designed to promote self- esteem, decision-making, and values clarification to children (ages 5 - 18) within the Community Center networks. Program funding ended in September 1992.
FAMILY HELP OF PHILADELPHIA 1989-1990
King of Prussia, Pennsylvania
Case Manager of Social Work Services
? Administered the Department of Social Work and engaged in direct service home visits. Participated in "trouble-shooting" and "problem-solving" with agency clients/patients and made presentations to hospitals and insurers. Company folded in 1990.
PENNSYLVANIA HOSPITAL 1986-1989
Obstetrics/Gynecology/Intensive Care Nursery Social Worker
? Provided direct service counseling, referral, advocacy for patients/families and resolving communication difficulties among families and care providers. Developed and facilitated several educationally focused support groups. Supervised two MSW students.
Philadelphia, Pennsylvania 1985-1986
Obstetrics/Gynecology/Oncology Social Worker
? Provided psycho-social assessment, counseling, information-processing and referral. Researched and developed the Hospital Adoption Policy and Procedure and developed and implemented a new documentation scheme for the social work department. Co-supervised two graduate students.
SOCIAL WORK INTERNSHIPS:
PENNSYLVANIA HOSPITAL 1984-1985
BROOKLYN JEWISH HOSPITAL- Clinic for Mental Health- Bedford Stuyvescent 1983-1984
Brooklyn, New York
RELATED PROFESSIONAL EXPERIENCE:
Field Experience: Assisted an MSW in evaluating prospective adoptive parents
PLANNED PARENTHOOD OF BERKS COUNTY 1982-1983
Volunteer: Counseled women about birth control and pregnancy options and presented seminars on human sexuality in the local colleges and high schools
ALBRIGHT COLLEGE 1982-1983
Resident Assistant: Counseled students around academic and personal concerns, provided limit-setting, created educational and social programs, and participated in training workshops
BOOTH MATERNITY HOME 1977- 1978
Volunteer: Provided peer counseling and life skills training for pregnant teenagers
ACADEMIC HONORS AND PROFESSIONAL ACTIVITIES:
Susan Kingsbury Award- Bryn Mawr College May 1999
Perinatal Social Work Network
Board Member 1984-1992
Planning Committee 1986-1992
National Association of Social Workers 1984-pres.
Board Member 1999-pres.
Pennsylvania Perinatal Association 1986-1993
Phi Delta Sigma (honorary sorority)--Albright College 1983-pres.
Walton Scholar--Albright College 1979-1983
Mendenhall-Tyson Scholar--Upper Darby High School 1979
Kerson, T.S. and McCoyd, J.L.M. (In press). The power of the relationship between the social worker and the client system. In Boundary Spanning: An ecological reinterpretation of social work in health and mental health settings. Columbia University Press: New York.
McCoyd, J.L.M. (1997). Perinatal bereavement: It’s not all the same. NAPSW Forum 17(4), 7-9.
McCoyd, J.L.M. (1999). A Continuum of decision making in pregnancy. NAPSW Forum 19(4), 10-14.
McCoyd, J.L.M. (2001). Genetics and Your Practice [Review of CD-ROM of same title]. Social Work in Health Care 34.
“ Creative Practice with Changing Decision-making: A Continuum of Decision-making in Pregnancy”
The National Association of Perinatal Social Work Conference May 1999
“ A Special Kind of Loss”
-The National Association of Perinatal Social Work Conference May 1997
"What Social Workers Do"
- Girl Scouts of America "Girl's Can Work Too" seminar April 1996
"Social Work in a Home Care Setting"
--for the Social Work and Managed Health Care conference
at Hahnneman Hospital November 1994
"Grief Reactions of People Experiencing Pregnancy
Termination for Anomaly"
--for Resolve Through Sharing training October 1994
"The Impact of Genetic Disorders on Couples/Families"
-- presented each semester to the Human Development
classes at Pennsylvania State University 1989-1996
"Active Listening Seminar"
-- developed and presented all day workshop at
the Riverview Presbyterian Church May 1993
"The Cutting Edge: Perinatal Issues in the 90's"
-- moderated for the Perinatal Social Work
Network Annual Conference, and conducted
workshop on "The New Team Member: Friend or Foe" September 1992
"The Effects of a National Health Care Plan on
Childbearing Families and Medically Fragile
Children" -- presented for the Maternity
Care Coalition's Annual Conference May 1992
"The Impact of Bereavement on the Family"--
presented to the PAN group of Bryn Mawr Hospital May 1992-1996
"The Medicalization of Women's Health Care"--
presented for the National Organization of Women (Phila. Branch) April 1990
presented at the National Perinatal
Association Annual Conference November 1989
"Complicated Pregnancy: Quality of Life"--
moderated for the Perinatal Social Work
Network Annual Conference October 1989
"High Risk Pregnancy"--
presented for Frontiers in Neonatal
Care Annual Conference September 1989
"Work, Parenting & You"--
presented for the Wellness Committee
of Johnson & Higgins June 1989
"Cocaine and Pregnancy"--
moderator/facilitator: sponsored by
the Perinatal Social Work Network October 1988
"Supporting Families Experiencing NICU
Hospitalization and High-Risk Pregnancy"--
presented for the Parent Care 4th Annual
Conference October 1987
"The Emotional Impact of Having a Baby
in the ICN"-- presented for the
Parent Support Group- Pennsylvania Hospital May 1987
"Psychosocial Implications of Medically
High-Risk Pregnancies"-- presented for
the Perinatal Social Work Network and
the March of Dimes Annual Conference March 1987