Ub Reseach Project for Cdhs Curriculum Development
1
Fetal Alcohol Spectrum Disorder
Research Survey Application Process Report
Nancy Shipkey, RN, MS doctoral student, University at Buffalo, State University of New York, School of Nursing
Linda M. Caley PhD RN, Assistant Professor, University at Buffalo, State University of New York School of Nursing
Mary Ann Jezewski, PhD RN, Associate Director for Research, Associate Professor, University at Buffalo, State University of New York School of Nursing
Meg Brin, CDHS Child Welfare Administrative Director
Vivian Figliotti, CDHS Child Welfare/CPSTrainer
Phyllis Harris, CDHS Partnership Coordinator
Jeannette Climenti, Child Welfare Trainer
Will Rea, Child Welfare Trainer
Maria Rivera, Child Welfare Trainer
CC02 Child Welfare
Award: 27379 Award: 31183 Award: 34851
Project: 1029345 Project: 1037122 Project: 1044698
Task: 2 Task: 2 Task: 2
Sally Speed, Medicaid Training Institute Director
HLTC03
Award: 27229 Award: 31172 Award: 34963
Project: 1029071 Project: 1037112 Project: 1044887
Task: 2 Task: 2 Task: 2
Funding for this research project was provided by NYS Office of Children and Family Services, Contact year 2003: Project: 1029345 Award: 27379, Contract year 2004: Child Welfare Project 1037122, Award: 31172; NYS Medicaid Training Institute, Project: 1037112, Award: 31172 through the Center for Development of Human Services, College Relations Group, Research Foundation of SUNY, Buffalo State College.
Introduction
The purpose of this report is to discuss the process of developing and distributing a survey to professionals working in the fields of child welfare/child protective services, foster care and Medicaid enrollment to measure their knowledge, attitudes and beliefs about Fetal Alcohol Spectrum Disorder. A brief overview of Fetal Alcohol Spectrum Disorder and the need for the survey will first be presented.
Overview of Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum Disorder (FASD) is the leading known cause of mental retardation in western civilization. FASD is a set of birth defects caused by maternal alcohol consumption during pregnancy. The amount, intensity and timing of the drinking affect the fetus in different ways and FASD is expressed differently in children as a result. While very serious FAS can be recognized at birth many of the manifestations of fetal alcohol exposure appear with age. Some children do not manifest the effects of the disease until school age. It is the most common reason for a child’s development and learning to be affected (Centers for Disease and Prevention, National Center for Birth Defects and Developmental Disabilities, 1997).
Several different diagnoses come under the term Fetal Alcohol Spectrum Disorder. Current statistics estimate, for example that the prevalence of Fetal Alcohol Syndrome (FAS) is 0.2 to 1.5/1000 live births and the prevalence of Alcohol Related Neurological Disorder is 6/1000 live births (Centers for Disease Control and Prevention, National Center for Birth Defects and Developmental Disabilities, 2005). In 1992, it was estimated that each FAS child may require as much as $ 1.5 million (U.S.) in special care, supports and/or supervision during his/her lifetime. In 1998, the Tenth Special Report to the United States Congress on Alcohol and Health estimated the annual cost of FAS to be $2.8 billion (Centers for Disease Control and Prevention, National Center for Birth Defects and Developmental Disabilities, 2005).
Surprisingly little information is available about the knowledge, attitudes, and beliefs about FASD of those human service professionals who work with the most vulnerable populations of children. Without this type of information, it is difficult to identify the training and education needs of these professionals regarding children with FASD that would help them in their dealing with families.
To begin to address this lack of information, a survey was developed and distributed on knowledge, attitudes, and beliefs about Fetal Alcohol Spectrum Disorder of Human Service Professionals who work with children and families at risk for or having FASD. Results of the survey will provide information to be used primarily for training on identifying potentially disabled children and collecting the information and evidence necessary to substantiate their status as “disabled” under the criteria utilized by Social Security. Findings from the survey will be presented to Center for the Development of Human Services (CDHS) personnel to begin discussion of the educational and training needs of these human service professionals. In addition, the results of the survey will provide the Medicaid training unit an understanding of how thoroughly they will need to cover this area in their training curriculum.
Methodology
Development of the Survey
A thorough search of the literature was done before starting to design the survey. A review of the literature revealed two FASD surveys that might prove feasible for the study. The Project Director (PD) and the Research Assistant (RA) contacted the developers of both FASD surveys, one from New Jersey working with the Centers of Disease (CDC) and another from Canada, explaining the study and asking for permission to use all or part of their FASD surveys. Permission was given to use the two existing surveys. Using the most appropriate questions from each, and adding questions specific to the intended audience, a preliminary survey instrument was developed. A draft of the FASD survey was presented to the staff at CDHS: Phyllis Harris, CDHS Partnership Coordinator, Vivian Figliotti, CDHS Child Welfare/CP Trainer, and Dick McGowan, Ph.D., CDHS Director Evaluations for their consideration.
Dillman Methodology
A modified Dillman methodology (1978) was used in the design and distribution of the survey. Briefly, a phone call explaining the survey to the commissioner’s secretary was followed by sending the permission form to participate in the survey to the commissioner. Personal phone calls were made to the person(s) identified by the commissioner as the person(s) responsible for distribution and collection of the survey. Follow up letters were sent to each contact person after the surveys had been mailed. Personal phone calls were made to the contact person after the return date for the surveys had passed. Using this method involves multiple contacts with prospective respondents and has been shown to maximize the response rate in target groups.
Revision of the Survey
Individual questions of the CDHS staff regarding the Fetal Alcohol Spectrum Disorder (FASD) Survey were discussed and reviewed. Recommendations were made by those in attendance regarding:
1. length of the FASD survey,
2. questions to include or delete in the FASD survey,
3. general format of the FASD survey to make it comparable to other CDHS surveys,
4. target population to whom the FASD survey will be distributed,
5. feasibility of distributing the FASD survey to the individual sites,
6. responsible person for distribution and collection of the FASD surveys,
7. mailings of the FASD surveys from CDHS.
After reviewing the comments and changes suggested by the staff at CDHS, the survey instrument was revised and shortened. The staff at CDHS reviewed the newly revised FASD survey and had no further recommendations.
Three graduate students from the University at Buffalo nursing program independently evaluated the FASD survey before distribution for time and readability. The reading level of the survey was also determined. Time for completion varied from 8-15 minutes.
An expert in survey design reviewed the final survey. The expert felt that some of the questions could be better worded. However, the decision was made to leave the questions as they were so the results could be compared to those of other professionals who had taken the same survey.
Survey Content
The final survey is six pages long, printed on one side only (please refer to Appendix A). The self-administered survey contained 15 questions specific to knowledge, attitudes and beliefs about Fetal Alcohol Spectrum Disorder. Of the 15 questions, 13 required a check, circle or number for the response. Two were open-ended questions allowing for a variety of responses. Additionally, five other questions were asked about the respondent’s demographic characteristics.
Survey Sample
Target Population. The population of interest was professionals working in child care protection, child welfare and Medicaid eligibility. The sample was drawn from those professionals who received training from the CDHS. To ensure that the proper individuals received the FASD surveys, meetings were held with CDHS staff, the PD, and RA. Additional questions and concerns regarding the target population that arose from these meeting were addressed to Meg Brin, Child Welfare Administrative Director and Sally Speed, Medicaid Training Director for their input. Their suggestions were discussed and included. It was decided to distribute the FASD survey to both workers and supervisors in childcare protection, child welfare, and Medicaid eligibility.
Sampling. A purposeful sample was used in an effort to obtain a large, diverse group of respondents. A decision was made to include the above identified persons in every Department of Social Services in each of the 57 counties in the State of New York with the exception of the five boroughs of New York City.
Cover Letter for Survey
A cover letter was developed to be included with each survey. The cover letter included:
1. background information on the motivation for development of the project,
2. purpose of the survey,
3. importance of response,
4. assurance of confidentiality,
5. designated return date,
6. title of the mailed survey,
7. names of two contacts for questions,
8. thank you to the respondent for participating.
The cover letter also indicated that a summary report would be made available upon request (Please refer to Appendix B). A returned completed survey indicted voluntary participation and informed consent.
Institutional Review Board Approval
Each educational institution that receives funding from the federal government must have a process for assuring the protection of research subjects for any research conducted. This project was submitted to the Social and Behavioral Sciences Institutional Review Board (SBSIRB) at the University at Buffalo for review and approval. The final FASD survey, cover letter, letter and permission form for the commissioners, and letter for the contact persons were approved. In compliance with SBSIRB regulations to maintain confidentiality, the completed surveys were kept in a secure, locked cabinet at the State University of New York at Buffalo. Only the PD and RA had access to the locked cabinet with the returned surveys
Distribution of the Survey
Initial Contact. The list of potential subjects was obtained from the CDHS from the New York Welfare Association District Directory. The staff development supervisor was identified by CDHS as the one most likely to be involved with the survey distribution. Personal phone calls were made to the staff development supervisor at each of the individual counties to inform them of the upcoming FASD study, and the surveys that were to be mailed. During this process two supervisors reported that there was a protocol for survey distribution. The commissioner must first approve any survey distributed to staff.
Revised Protocol for Survey Distribution. Based on this finding, the protocol was revised. A letter was first sent to each commissioner explaining the study and requesting her/his permission for staff to participate in the FASD survey and the name of the person(s) designated to distribute the survey to the staff. A self-addressed stamped envelope for the return of the commissioner’s permission form was included, for ease of response (Please refer to Appendix C).
Phone calls were also made to alert the commissioner’s secretary that a permission form would be arriving. During the phone contact, the importance of the topic and the purpose for the survey was explained. There were many questions about FASD and many positive comments about the survey and a sincerity and willingness to participate from many of the individuals contacted.
Data Management
A database was developed to track the permission forms received. After the return date had passed, the secretaries of the commissioners who had not yet returned their permission forms were contacted by phone. This proved to be a very productive follow-up phone call and without this follow-up, the response rate would have been lower.
Reasons for non response included:
1. never received the letters,
2. unable to locate the forms,
3. more information about the survey was requested before making a decision to participate, (i.e., time to complete, if there would be any phone and/or face to face contact with DSS workers, collection and return of completed surveys),
4. commissioners requested an actual draft of the survey before deciding whether to participate.
In response to these concerns duplicates were sent to those requesting them. All requests were honored in a timely manner (most were emailed or Faxed the same day) to encourage participation.
Eight commissioners declined to participate, citing too many other demands on their staff’s time. The staff at two of the sites where the commissioners declined to participate sincerely regretted the decision and conveyed their feelings. They were assured that they would still be receiving the educational and training materials when they were developed.
Revised Distribution of Survey
Initial Step. When the permission forms from each commissioner were received, a note was made in the database along with the name(s) of the contact person for each county. Each person identified by the commissioner was contacted by phone, told that permission had been received from their commissioner, and that the commissioner had identified them as the contact person to distribute the FASD surveys. During the phone call, the survey was explained to each contact person and the protocol for distribution and return of the surveys, and the individuals to be surveyed (child protection, child welfare and Medicaid eligibility staff and supervisors) were identified.
The contact person was asked for the total number of surveys that they would need to give to their staff. The contact person was advised to have a central place for collection of the completed surveys and to send them back by the designated date.
A follow up letter was sent to each contact person explaining all the above and providing the names, email addresses, and phone numbers of two persons for questions. A copy of the commissioner’s permission form was also included. (Please refer to Appendix D).
Actual Distribution of Surveys. It was important to determine the best time to distribute the survey. To accommodate staff vacation time and assure the largest return possible, distribution of the survey was delayed until September.
Survey Preparation
A room was provided at CDHS to prepare all the surveys for mailing. Allowing for extra surveys for each county, 3500 surveys were initially prepared. A cover letter and a survey were sent to each participant. Plain individual sealable manila envelopes for the completed surveys were provided for all respondents to ensure confidentiality of the response. After all the surveys were packaged, they were identified by county and contact person with mailing labels, awaiting mailing by the mail room staff at CDHS.