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Common Outcomes Initiative Research and Evaluation within FASD Programs
Final Report September 2009
The Centre thanks the following for their contribution in the design, development, and implementation of this survey:
Survey Implementation Sarah Horn, External Consultant, Alberta Centre for Child, Family and Community Research
Jamie Budd, Alberta Centre for Child, Family and Community Research Tracy Wormsbecker, Canada NW FASD Research Network, Intervention Network Action Team
Content Consultants
Dr. Ben Gibbard, Capital Health Region Shivani Rikhy, Alberta Centre for Child, Family and Community Research
Respectfully submitted by: Courtney Crockett Grants Administrator & Special Projects Coordinator Alberta Centre for Child, Family, & Community Research Em: [email protected]: [email protected] Dr. Suzanne Tough Scientific Director Alberta Centre for Child, Family, & Community Research Em: [email protected]
Questions about this survey may be directed to Courtney Crockett or Suzanne Tough at the contact information provided above.
Table of Contents Introduction and Background 3 What we wanted to find out 3 What we did 3 Findings 4Program Demographics 5Current Practices 7Research and Evaluation 10Program Evaluation 11Comparing Research and Non-Research Organizations 13Comparing Evaluation and Non-Evaluation Organizations 15Findings 17Appendix 1: FASD Program Survey 18
Table of Tables Table 1. Recommendations of instruments for each outcome category
3
Table 2. Organization Demographics 5Table 3. Program Operations 7Table 4. Clients and Enrolment 8Table 5. Research and Evaluation 10Table 6. Program Evaluation and End of Service Follow-Up 11Table 7: Data Collection upon enrolment by current research involvement
13
Table 8: Data Collection upon exit by current research involvement 14Table 9: Data Collection upon enrolment by current evaluation involvement
15
Table 10: Data Collection upon exit by current evaluation involvement
16
Introduction and Background In 2006 The Centre entered into an agreement with the Provincial Health Services Authority of British Columbia to act as the lead agency to advance research projects focusing on FASD interventions on behalf of the Canada Northwest FASD Research Network. In order to better understand the impact of interventions for children and families with FASD, interested stakeholders developed a list of intervention outcomes common across programs. These outcomes included quality of life, self-efficacy, family functioning, hope and social support/inclusion. Partnering researchers in the area of FASD with policy makers from Alberta Children’s Services and other ministries, and parents or caregivers of children with FASD, the Common Outcomes Initiative was a project designed to identify instruments to measure these child and family outcomes which could be used to inform research, policy, and practice. Table 1. Recommendations of instruments for each outcome category. Outcome Recommended Measures Quality of Life Family Quality of Life Scale SF8, SF12, or SF36 Self-Efficacy General Self Efficacy Scale Psychological Empowerment Scale Family Functioning Family Functioning Style Scale FAM III or FAM Brief Hope Children's Hope Scale Social Support Family Support Scale Perceived Social Support Scale
Using the results of the Common Outcomes Initiative, a survey was developed to determine the content and extent of data collection in FASD programs, and potential for research partnerships. . What We Wanted to Find Out The purposes of this survey were
1. To determine what data FASD programs in Northwest Canada are collecting.
2. To determine what evaluation tools/instruments are being used by FASD programs in Northwest Canada.
3. To determine if FASD programs in Northwest Canada may be interested in research partnerships.
What We Did An initial invitation to participate in the survey was sent via email to programs identified through three directories: the 2005 FASD Calgary Resource Directory, the Directory of Fetal Alcohol Spectrum Disorder Information and Support Services in Canada, and an inventory of programs located at www.canfasd.ca. In total, 122 Alberta programs were identified through these sources. The initial
survey was available online; organizations who did not respond to the initial electronic request were telephoned and given the option to receive a paper copy. Data collection was open from January 9th to April 22nd, 2009. The electronic survey took about 20 minutes to complete, and included questions pertaining to program and client demographics, current practices, and program development. At the end of the survey, respondents were asked to identify other relevant organizations adding to the overall sample through a snowball technique. Participants were also invited to enter a draw to receive $500 towards attending an FASD conference of their choice in 2009. See appendix 1 for further details about the survey. Findings
• Few (4.9%) of the respondent programs were using the outcome measurement tools recommended by the Common Outcomes Initiative. There is an opportunity to provide information on these measures to organizations providing services to children and families with FASD.
• Most programs collected some information from clients both before (95%) and after (91%) program participation; however, the information collected was inconsistent between organizations and sometimes within an organization. Opportunities exist to improve consistency of data collection across and within organizations.
• The majority of organizations believed that incorporating research and evaluation into overall programming was very important or somewhat important; this may suggest some organizations would have an interest in partnering with researchers to conduct research or evaluation.
• Nearly 30% of respondent organizations indicated they were currently involved in research, and 60.7% were currently involved with evaluation.
• 40% of current programs were developed based on existing research evidence. There are opportunities to partner with new organizations or organizations implementing new programs to inform the development of these programs through research and evaluation.
Program Demographics Respondents were asked to provide demographic information about their organization and the services offered. This information provided a basic understanding of the services available and the organizations providing them. Summary The service offered by the most organizations was provision of information and advocacy (47.5%). Counselling (41.0%), mentoring services (37.7%), life skills training (37.7%), and other services (37.7%) were also offered by many organizations. Over 65% of respondent organizations offered services specifically for urban populations, more than half offered services specifically for individuals with FASD (52.5%) and nearly 30% of respondent organizations were not targeting any specific population (27.9%). More than three quarters of all respondent organizations received funding from the provincial government (83.6%). Almost 30% of organizations reported receipt of funds through private donors. Table 2. Organization Demographics N=61
N(%)Services Offered Information provision 29 (47.5) Advocacy 29 (47.5) Counselling 25 (41.0) Other 23 (37.7) Mentoring services 23 (37.7) Life skills training 23 (37.7) Supported living 22 (36.1) Vocational training 19 (31.1) Training for professionals 17 (27.9) Diagnosis/medical services 16 (26.2) Addiction 11 (18.0) Respite 10 (16.4) Foster care/adoption 9 (14.8) Housing 9 (14.8) Justice Services 9 (14.8) Funding support 3 (4.9)Funding Sources Provincial government 51 (83.6) Donations/private donors 17 (27.9) Fundraising activities 13 (21.3) Other 13 (21.3) Federal government 7 (11.5) United Way 6 (9.8) Municipal government 3 (4.9)
Geographic Population Urban 40 (65.6) Rural 33 (54.1) No Specific Population 6 (9.8) Other 4 (6.6)Focus of Program Delivery Parents/guardians of individuals with FASD 39 (63.9) Individuals with FASD 32 (52.5) Individuals of a specific age 29 (47.5) General community 22 (36.1) Parents/guardians of individuals with other disorders
20 (32.8)
Individuals with Neurodevelopmental disorders 14 (23.0) Physicians, teachers, educators 12 (19.7) Others 12 (19.7) Siblings of individuals with FASD 11 (18.0) Specific ethic communities 5 (8.2) Siblings of individuals with other disorders 4 (6.6)Target Ethnic Group All of the above 17 (27.9) Aboriginal/First Nations/Métis 11 (18.0) White/European/Anglo 11 (18.0) African/Caribbean/Black 4 (6.6) Asian 4 (6.6) Hispanic/Latino 3 (4.9) Middle Eastern/Arabic 3 (4.9) Other 1 (1.6)
Current Practices Respondents were asked about their program operations, including program development and program staff. This information provided insight on how programs have developed and who was providing front-line services. Summary Almost half of the respondent organizations indicated their programs were informed by personal or professional experience (45.9%) or a pre-existing program (42.6%). The majority of programs were delivered by a team of providers (60.7%) rather than an individual provider (24.6%). Table 3. Program Operations N=61
N(%)Informed development of current program Experience (personal or professional) 28 (45.9) Pre-existing programs 26 (42.6) Research or evidence 24 (39.3) Pilot project 16 (26.2) Expert opinion/advice 12 (19.7) Other literature (books, news articles, websites) 9 (14.8) Presentation/conference 8 (13.1) Other 3 (4.9)Program Delivery Team of providers 37 (60.7) Individual provider 15 (24.6) Training Required College diploma or certificate 7 (11.5) On-the-job training 6 (9.8) Other 6 (9.8) Life experience 5 (8.2) University Degree 4 (6.6) High school completion 2 (3.3)
Clients and Enrolment Respondents were asked to provide information about their enrolment processes, including referral sources and data collected upon enrolment, as well as their current client base. This information provided an understanding of how many clients were being served and how available programs could be accessed. Summary The majority of organizations reported that their clients were referred by other service providers (67.2%) or that they were self-referred (63.9%). Programs served between 1 and 280 clients per month, with service duration lasting from 2 to 36 months. Over 60% of respondent organizations indicated that they collected the same information from all clients upon enrolment. The information most often collected included demographic information (55.7%), medical history (49.2%), other services the client was involved with (45.9%), family history (44.3%) and educational history (44.3%). Table 4. Clients and Enrolment N=61
N(%) Enrolment/referral processes Referral from other service provider 41 (67.2) Self-referral 39 (63.9) Referral from community 34 (55.7) Referral from family or friends 31 (50.8) Physician referral 27 (44.3) Other 1 (1.6) Client Base M (SD) How many clients served in an average month 65.50 (82.457) Maximum number of clients served at one time 83.43
(159.621) Number of clients of waitlist 7.20 (13.074) Average duration of service provision (in months) 15.74 (13.325) Data Collection upon Enrollment Demographic Information 34 (55.7) Medical history 30 (49.2) Other services client is involved with 28 (45.9) Family history 27 (44.3) Educational history 27 (44.3) Client goals during enrolment in program 26 (42.6) Social support 25 (41.0) Aboriginal status/non-status 25 (41.0) Mental health 24 (39.3) FASD diagnosis 23 (37.7) Functional/learning/psychological strengths 22 (36.1) Functional/learning/psychological deficits 21 (34.4) Current housing situation 21 (34.4) Family functioning 18 (29.5) Addictions history 18 (29.5) Criminal history 17 (27.9) Self esteem 13 (21.3)
Quality of life 12 (19.7) Vocational history 11 (18.0) Self-efficacy 11 (18.0) Hope 10 (16.4) Other 3 (4.9) Is the same data collected and documented for each
client? (yes) 37 (60.7)
Research and Evaluation Respondents were asked about their views on the importance of incorporating research and evaluation into overall programming, as well as questions about their organization’s current research and evaluation capacity. This information provided an understanding of how many programs are currently conducting research or evaluation, and how important they felt this was. Summary Over 70% of respondent organizations indicated that evaluation was very important in overall programming, while only 47.5% indicated that research was very important in overall programming. Nearly 30% of respondent organizations indicated they were currently involved in research, and 60.7% were currently involved with evaluation. Nearly 46% of respondent organizations shared their information with other programs providing services (45.9%), and 57.5% of respondents stored their client information electronically. Table 5. Research and Evaluation N=61
N(%)How important is evaluation in overall programming Very Important 43 (70.5) Somewhat Important 6 (9.8) Somewhat unimportant or not important at all 1 (1.6)How important is research in overall programming Very Important 29 (47.5) Somewhat Important 18 (29.5) Neither important nor Unimportant 1 (1.6) Somewhat unimportant or not important at all 2 (3.3)Is research or evaluation currently conducted? Yes, we are involved with research 18 (29.5) Yes, we are involved with evaluation 37 (60.7) No, we are not involved with research or evaluation
5 (8.2)
Program staff for data entry Staff are available for data entry 33 (54.1) Staff are available for data management 26 (42.6) Staff are available for data analysis 21 (34.4)Data Management Information is shared with other programs providing services
-
Yes 28 (45.9) No 8 (13.1) Don’t Know 1 (1.6) Client information is stored electronically - Yes 35 (57.4) No 9 (14.8) Don’t Know 1 (1.6)
Program Evaluation Respondents were asked to provide information about end-of-service follow-up and program evaluation. This information provided an understanding of the services and follow-up provided to clients after program termination, as well as what program evaluation was occurring. Summary When asked about client information collected at program end, over 36% of respondents indicated they collected information on parent or client satisfaction (36.1%) and client goals met during the program (36.1%). Nearly 20% collected information on social support, and 18% collected information on family functioning. Nearly 30% of respondent organizations indicated they did not collect any long term follow up information after discharge from the program. 23% assisted with transition of services and 8.2% followed up to track long-term outcomes when possible. Nearly 60% of respondent organizations indicated that their overall program was evaluated, but only 5% used any of the recommended instruments (Table 1). Of those respondents who indicated they did an overall program evaluation, 5.6% and 2.8% indicated that the results were available electronically and in hard copy, respectively. Table 6. Program Evaluation and End of Service Follow-Up N=61
N(%)Client information collected at program end Parent or client satisfaction 22 (36.1) Client goals met during program 22 (36.1) Social support 12 (19.7) Family functioning 11 (18.0) Current educational status 10 (16.4) Current housing situation 7 (11.5) Self-efficacy 6 (9.8) Current vocational status 6 (9.8) Quality of life 5 (8.2) Other 3 (4.9) None of the above 3 (4.9) Self esteem 3 (4.9) Hope 2 (3.3)Do you have a system for follow-up or assessment? Yes, we assist with transition of services when possible
14 (23.0)
Yes, we follow up to track outcomes when possible 5 (8.2) No, we do not follow up 18 (29.5) Does not apply to the type of service we provide 11 (18.0)Program Evaluation Is the overall program evaluated? -
Yes 36 (59.0) No 5 (8.2) Don’t Know 4 (6.6) Are tools used in the evaluation?* (n=36) - Yes 3 (4.9) None of the listed tools 19 (31.1) Are evaluation results available? (n=36) - Yes, they are available electronically 2 (5.6) Yes, they are available in hard copy 1 (2.8) No, they are not available 22 (61.1)* Tools listed included: Children’s Hope Scale, General Self Efficacy Scale, Fam III or FAM Brief, Perceived Social Support Scale, Family Functioning Style Scale, Psychological Empowerment Scale, Family Quality of Life Scale, SF8, SF12, or SF36, Family Support Scale, and Addictions Severity Index.
Comparing Research and Non-Research Organizations Data from organizations involved in research was compared to data from organization not currently involved in research. Specifically of interest was data related to what information these organizations were collecting and what evaluation tools/instruments they were using. Summary Data collection practices of organizations currently involved in research were compared to those of organizations not currently involved in research. Organizations currently participating in research were significantly more likely than those not currently participating in research to collect information on Aboriginal status/non-status and mental health, as well as additional information not mentioned in the list below. There were no statistically significant differences of information collected upon program exit between organizations that were and were not currently involved in research. However, organizations currently involved in research were twice as likely to collect information on family functioning (27.8% vs 14.0%) and social support (27.8% vs 16.3%) compared to organizations not currently involved in research. Table 7: Data Collection upon enrolment by current research involvement Current
Research (n=18)
No Current
Research (n=43)
P value
Data Collection upon Enrolment FASD diagnosis 8 (44.4) 15 (34.9) .567 Medical history 9 (50.0) 21 (48.8) 1.00 Demographic Information 13 (72.2) 21 (48.8) .16 Aboriginal status/non-status* 11 (61.1) 14 (32.6) .05 Family history 9 (50.0) 18 (41.9) .59 Other services client is involved with 10 (55.6) 18 (41.9) .40 Client goals during enrolment in program 9 (50.0) 17 (39.5) .57 Functional/learning/psychological deficits 6 (33.3) 15 (34.9) 1.00 Functional/learning/psychological strengths 7 (38.9) 15 (34.9) .78 Self esteem 3 (16.7) 10 (23.3) .74 Hope 2 (11.1) 8 (18.6) .71 Quality of life 3 (16.7) 9 (20.9) 1.00 Family functioning 5 (27.8) 13 (30.2) 1.00 Self-efficacy 2 (11.1) 9 (20.9) .48 Social support 10 (55.6) 15 (34.9) .16 Mental health* 11 (61.1) 13 (30.2) .04 Vocational history 3 (16.7) 8 (18.6) 1.00 Educational history 10 (55.6) 17 (39.5) .27 Criminal history 6 (33.3) 11 (25.6) .55 Addictions history 6 (33.3) 12 (27.9) .76 Current housing situation 8 (44.4) 13 (30.2) .38 Other* 3 (16.7) 0 (0.0) .02
Is the same data collected and documented for each client? (yes)
15 (83.3) 22 (51.2) .18
* statistically significant differences Table 8: Data Collection upon exit by current research involvement Current
Research (n=18)
No Current
Research (n=43)
P value
Data Collection upon Exit Parent or client satisfaction 9 (50.0) 13 (30.2) .16 Client goals met during program 7 (38.9) 15 (34.9) .78 Self esteem 0 (0.0) 3 (7.0) .55 Hope 0 (0.0) 2 (4.7) 1.00 Quality of life 1 (5.6) 4 (9.3) 1.00 Family functioning 5 (27.8) 6 (14.0) .28 Self-efficacy 2 (11.1) 4 (9.3) 1.00 Social support 5 (27.8) 7 (16.3) .31 Current vocational status 2 (11.1) 4 (9.3) 1.00 Current educational status 4 (22.2) 6 (14.0) .46 Current housing situation 3 (16.7) 4 (9.3) .41 Other 1 (5.6) 2 (4.7) 1.00* statistically significant differences
Comparing Evaluation and Non-Evaluation Organizations Data from organizations involved in evaluation was compared to data from organization not currently involved in evaluation. Specifically of interest was data related to what information these organizations were collecting and what evaluation tools/instruments they were using. Summary Organizations were asked to identify what information they collected from clients upon enrolment. Organizations currently participating in evaluation were significantly more likely than those not currently participating in evaluation to collect information on other services clients were accessing, client goals during program enrolment, functional/learning/psychological deficits and strengths and vocational history. Organizations not currently participating in evaluation were significantly more likely than those participating in evaluation to collect information on FASD diagnosis upon enrolment. Upon program exit, organizations that were currently involved in evaluation were significantly more likely than organizations not currently involved in evaluation to collect information on parent or client satisfaction. , Table 9: Data Collection upon enrolment by current evaluation involvement Current
Evaluation (n=37)
No Current
Evaluation (n=24)
P value
Data Collection upon Enrolment FASD diagnosis* 18 (48.6) 5 (20.8) .034 Medical history 22 (59.3) 8 (33.3) .067 Demographic Information* 25 (67.6) 9 (37.5) .034 Aboriginal status/non-status 16 (43.2) 9 (37.5) .791 Family history 20 (45.1) 7 (29.2) .069 Other services client is involved with* 21 (56.8) 7 (29.2) .040 Client goals during enrolment in program* 21 (56.8) 5 (20.8) .008 Functional/learning/psychological deficits* 17 (45.9) 4 (16.7) .027 Functional/learning/psychological strengths* 18 (48.6) 4 (16.7) .014 Self esteem 10 (27.0) 3 (12.5) .215 Hope 6 (16.2) 4 (16.7) 1.000 Quality of life 9 (24.3) 3 (12.5) .334 Family functioning 12 (32.4) 6 (25.0) .579 Self-efficacy 8 (21.6) 3 (12.5) .502 Social support 18 (48.6) 8 (29.2) .184 Mental health 18 (48.6) 6 (25.0) .107 Vocational history* 10 (27.0) 1 (4.2) .038 Educational history 20 (54.1) 7 (29.2) .069 Criminal history 11 (29.7) 6 (25.0) .775 Addictions history 12 (32.4) 6 (25.0) .579 Current housing situation 15 (40.5) 6 (25.0) .275 Other 2 (5.4) 1 (4.2) 1.000* statistically significant differences
Table 10: Data Collection upon exit by current evaluation involvement Current
Evaluation (n=37)
No Current
Evaluation (n=24)
P value
Data Collection upon Exit Parent or client satisfaction* 18 (48.6) 4 (16.7) .014 Client goals met during program 17 (45.9) 5 (20.8) .059 Self esteem 3 (8.1) 0 (0.0) .272 Hope 2 (5.4) 0 (0.0) .515 Quality of life 5 (13.5) 0 (0.0) .147 Family functioning 9 (24.3) 2 (8.2) .175 Self-efficacy 4 (10.8) 2 (8.3) 1.000 Social support 8 (21.6) 4 (16.7) .749 Current vocational status 6 (16.2) 0 (0.0) .073 Current educational status 8 (21.6) 2 (8.3) .290 Current housing situation 5 (13.5) 2 (8.3) .694 Other 3 (8.1) 0 (0.0) .272* statistically significant differences
Findings
• Few (4.9%) of the respondent programs were using the outcome measurement tools recommended by the Common Outcomes Initiative. There is an opportunity to provide information on these measures to organizations providing services to children and families with FASD.
• Most programs collected some information from clients both before (95%) and after (91%) program participation; however, the information collected was inconsistent between organizations and sometimes within an organization. Opportunities exist to improve consistency of data collection across and within organizations.
• The majority of organizations believed that incorporating research and evaluation into overall programming was very important or somewhat important; this may suggest some organizations would have an interest in partnering with researchers to conduct research or evaluation.
• Nearly 30% of respondent organizations indicated they were currently involved in research, and 60.7% were currently involved with evaluation.
• 40% of current programs were developed based on existing research evidence. There are opportunities to partner with new organizations or organizations implementing new programs to inform the development of these programs through research and evaluation.
Appendix 1: FASD Program Survey
FASD Program Survey Thank you for your interest in our survey. We want to assure you that your participation in this survey is voluntary. If there are any questions that you don't wish to answer, please skip them and go on to the next question. Please note that the information that we are requesting will only be used for research purposes and will not affect your program's funding. Any information that you provide will be kept confidential and anonymous, and will be stored in a secured database for 5 years, after which it will be destroyed. Programs will not be identifiable since only grouped information will be reported. If you have any questions about this study, you can call Ms. Shivani Rikhy, Associate Scientific Director at the Alberta Centre for Child, Family, and Community Research (403-955-7472) or Ms. Tracy Wormsbecker, Research Associate at the Canada Northwest FASD Intervention Network Action Team (403-955-3052). By completing this survey we assume that you have understood and accept the privacy measures we are taking to ensure and protect your information. 1. We would like to create a directory of available services in Alberta. This directory
would only include the following information:
• Name of Organization • Contact Information • Services Offered • Information on who your program serves (if provided).
Would you like your organization included in this directory?
Yes No I don’t know
Information About Your Organization Throughout the survey, please choose the answers that best reflect the goals/vision/values of your organization. 2. Name of Organization: 3. What year was the organization established?
I don’t know
4. What is your position/role within this organization?
I don’t know 5. Does the organization have a website, annual report, or brochure(s) available?
Yes No I don’t know
6. If yes, are these available electronically?
Yes, I have provided a link here: No, I will e-mail a copy to [email protected] No, please provide me with a pre-paid envelope to send these documents.
Please provide your mailing address here:
I don’t know
Program Information 7. Please provide a brief description of the program: 8. How would you describe the services you offer? Please select all that apply.
Justice services Information provision Counseling Funding support Respite Mentoring services Advocacy Foster care/adoption services Addiction Diagnosis Services or other Medical
Services
Housing Supported/community living Training programs for professionals Life skills training/education Vocational training/job coaching I don’t know Other (please specify)
9. Which of these services are you most involved with? If you are equally involved with multiple services, please select one that you would like to focus on.
Service most involved with:
None I’m not sure
For the rest of the survey, please answer the questions from the perspective of the service you are most familiar with as you’ve indicated above. 10. What is the name of the program/project? 11. What year did the organization start offering this program/project?
I don’t know 12. What sources of funding support this program?
Municipal Government Funding Provincial Government Funding Federal Government Funding United Way Fundraising Activities Donations or Private Donors I don’t know Other (please specify)
13. Does your program target a specific geographic population in Alberta? Please select
all that apply.
Urban Area (please specify) Rural Area (please specify) Other (please specify) No I don’t know
14. What are the cultural backgrounds of clients in your program? Please select all that
apply.
Aboriginal/First Nations/Métis African/Caribbean/Black Asian Hispanic/Latino Middle Eastern/Arabic White/European/Anglo All of the above Not applicable I would prefer not to answer this question Other(s) (please specify)
15. Please list the primary goal(s) of the program in terms of positive client outcome: 16. What informed the development of your program or your current practice? Please
select all that apply.
Pre-existing program(s) Pilot project Presentation/Conference Research or Evidence Expert Opinion or Advice Other Literature (books, news articles, internet websites) Experience (personal or professional) I don’t know Other (please specify)
17. Is the program delivered to clients/stakeholders by an individual or a team?
Individual Team I don’t know (please skip to question 20, under the heading Client Enrollment
Information on page 5) 18. For the following question, please specify the position and required training or
qualifications for each individual or team member that delivers the program.
Training/Qualifications: • On the job training • University Degree (e.g. PhD, MSc, BA) • College Diploma or Certificate • Life-experience (e.g. experience as a parent) • Other (please specify) • I don't know
Position Training/Qualifications E.g. Social worker E.g. BSW 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Client Enrollment Information 19. How do clients learn about your services?
I don’t know 20. How are clients enrolled in this program/project? Please select all that apply.
Self-referral Physician referral Referral from other service provider Family or friends Community I don’t know Other (please specify)
21. What restrictions, if any, are there for client access to this project/program? For
example, services are only provided to individuals with a diagnosis or funding (e.g. Persons with Developmental Disabilities funding or PDD and Assured Income for the Severely Handicapped funding or AISH). Please list.
I don’t know 22. How many clients do you serve in an average month?
Not applicable I don’t know
23. What is the maximum number of clients that your program can accommodate at a
given time?
Not applicable I don’t know
24. How many clients are currently on a wait list?
Not applicable I don’t know
25. In months, what is the average duration of service provision? months
Not applicable I don’t know
Research & Evaluation Please keep in mind the following definitions as you answer the questions on evaluation and research: Evaluation: Assessment of the strengths and weaknesses of a program, policy, product, or organization for the purpose of improving the effectiveness. Research: Organized and systematic investigation to establish knowledge or facts in a specific topic area.
26. In general, do you think it is important for programs (others or your own) to
incorporate EVALUATION into their overall programming?
Very Important
Somewhat important
Neither important
nor unimportant
Somewhat unimportant
Not important at all
I don’t know
27. In general, do you think it is important for programs (others or your own) to
incorporate RESEARCH into their overall programming?
Very Important
Somewhat important
Neither important
nor unimportant
Somewhat unimportant
Not important at all
I don’t know
28. Is research or evaluation currently being conducted within this program? Please select
all that apply.
Yes, we are involved with Research Yes, we are involved with Evaluation No, we are not involved with Research or Evaluation I don’t know
29. Does your program include staff who are available to do data entry?
Yes No I don’t know Not applicable
30. Does your program include staff who are available to do data management?
Yes No I don’t know Not applicable
31. Does your program include staff who are available to do data analysis?
Yes No I don’t know Not applicable
32. Is the same data collected and recorded for each client?
Yes No I don’t know Not applicable
33. What client information is typically collected upon enrollment/during service
provision? Please select all that apply.
Not applicable All of the below FASD diagnosis Medical history (e.g. physical health and
comorbid diagnoses) Demographic information (e.g. age,
gender, and contact information) Aboriginal status/non status Family history Other services client is involved with (e.g.
services through the education system) Client goals during enrollment in your
program Functional/learning/psychological deficits Functional/learning/psychological
strengths Self esteem Hope Quality of life
Family functioning Self-efficacy Social support Mental health Vocational history Educational history Criminal history Addictions history (ASI) Current housing situation I don’t know None of the above Other (please specify)
34. What client information is typically documented upon leaving your program? Please select all that apply.
Not applicable All of the below Parent or client satisfaction Client goals met during enrollment in your
program Self esteem Hope Quality of life Family functioning Self-efficacy Social support
Current vocational status Current educational status Current housing situation I don’t know None of the above Other (please specify)
35. Is the same data collected and documented for each client?
Yes No Not applicable I don’t know
36. Do you share information with other programs that are providing services for clients
enrolled in your program?
Yes No Not applicable I don’t know
37. Do you store client information electronically?
Yes No Not applicable I don’t know
We would like to better understand the barriers that programs face in conducting research or evaluation. For the following two questions, please identify the top three barriers and, in the space provided, rank order them from 1 to 3, with 1 being the most important or significant barrier. Common barriers: • Time and energy required • Available Staff • Cost • Research is not a priority • Lack of expertise or experience • Lack of support/collaboration from other organizations • Problematic self-reports from clients • Disclosure of information/issues with confidentiality • Problems with defining success • Problems with measuring success • Informed consent (how to safeguard clients’ rights and understanding of involvement and
expectations for outcome) • Issues with confidentiality/anonymity in small communities • No barriers are experienced • I don’t know • Other (please specify) 38. What are the top 3 barriers to conducting RESEARCH that you experience? 1. 2. 3. 39. What are the top 3 barriers to conducting EVALUATION that you experience? 1. 2. 3.
40. Do you have a system for following up and/or assisting with client
trajectories/planning after they leave your program?
Yes, we have a system for assisting with transition of services for our client when possible. Yes, we have a system for following up with out clients to track their outcome trajectory when
possible No, we do not have a system for following up or assisting with client trajectories This question does not apply to the type of service that our program provides I don’t know
Program Evaluation 41. Is the overall program evaluated?
Yes No (please skip to question 45, under the heading Conclusion on page 9) I don’t know
42. Were any of the following tools used in the evaluation? Please select all that apply.
Children’s Hope Scale General Self Efficacy Scale FAM III or FAM Brief Perceived Social Support Scale Family Functioning Style Scale Psychological Empowerment Scale Family Quality of Life Scale SF8, SF12, or SF36 Family Support Scale Addictions Severity Index None of the above I don’t know Other (please specify)
43. Are evaluation results available?
Yes, they are available electronically (please e-mail to [email protected]) Yes, hard copies are available. Please provide me with a pre-paid envelope to send the
results. Please provide address:
No I don’t know
Conclusion
44. Please list what lessons you have learned about your type of work that may help
others working in the field of FASD: 45. Is it okay to contact you in the future?
Yes Please provide your name and e-mail address:
No 46. Can you tell us about other ORGANIZATIONS that are doing this type of work? 1. 2. 3. 4. 5. 47. In appreciation of your participation, we would like to enter you in a draw to receive
$500.00 for a representative from your organization to attend an FASD conference of their choice in 2009. If you are interested in being entered please provide us with your contact information. This will not be connected to your survey responses.
Name: E-mail: Phone number: 48. Thank you for your time. Please provide contact information for others WITHIN your
organization who may be interested in completing this survey about the other services that your organization may provide.
Contact Information: Contact Information: Contact Information: Contact Information: Contact Information:
