Parent Education for Parents With Cognitive Limitations - Phase I Final Report
Backen Jones, Laura, Ph.D., Principal Investigator
1R43HD047050-01
Project Period: 05/01/2004 - 10/31/2005
Summary
Project Tasks
1. Develop Materials for a Program on Routines with Input from Consultants and from Advisory Panels of Parents with Cognitive Limitations and Professionals.
Objectives
Our first task was to develop content material for use in a pilot program teaching how to develop and follow routines that could both be used by professionals to support parents with cognitive limitations and by the parents themselves. The program would need to be geared to the learning needs of this group of parents. This pilot program would inform the development of a family of programs in Phase II that professionals could use to address issues typical to this population.
Parent Panel
Once the research team developed ideas for an instructional program on routines, we met with parents in group and individually to get feedback on these ideas.
The parent advisory panel was made up of seven parents; six mothers and one father. These parents ranged in age from 30 to 37 (mean 32.8, s.d. 2.6). All were non-Hispanic Caucasian. Five were single mothers; two were two-parent families. Two were married; one was divorced; and four were single parents who had never been married. Three were working part-time; three were unemployed; and one declined to answer the question. Among them they had 9 children; five families had one child; and two had two children. These children ranged in age from 3 to 9 (mean 6.2, s.d. 2.8). Five of these families indicated they had adults in their lives helping them with parenting. One was living with her mother and brother; two indicated her parents were helping, and two said both their parents and a friend provided support with parenting.
The central aims of the panel were to receive feedback about the appeal and usability of materials and to gain general information about the bedtime routine with this population: what pre-bedtime activities were typical for our target population, what activities they particularly enjoyed, and problems that are encountered in setting up and maintaining a bedtime routine. We also wanted to collect parents? ideas about what else they would like to see included in the program.
To initiate feedback, it was explained that the project was about bedtime routines, and passed out a rough draft of the routine board and icons. Parents were first asked what activities they and their children do before bed. We also asked parents what kinds of things their kids typically do in resisting the bedtime routine and about the types of events that interrupt the bedtime routine. We learned that parents knew what a bedtime routine was, and they had a variety of activities that they experienced with their children leading up to bedtime, and that their preferences for the order of steps in a routine varied from family to family.
Resistance on the part of their children varied from anger to being ?glued to the TV? to situations where the child runs around to ?escape? the routine. Parents also identified several factors that interfered with maintaining a bedtime routine such as unsolicited ?help? from friends and relatives, children?s late afternoon naps, and unexpected visitors. This information was incorporated in the video scenarios and in the troubleshooting section of the parent mentor user?s guide.
We also asked parents about other times that a routine might be helpful: parents indicated that a morning routine would be helpful, especially in getting kids ready for school or to go to childcare. Other times include after-school and a dinnertime routine. Suggestions offered by parents included ideas for the routine board icons, and including music in the video would make it appealing to both parents and children.
Professional Panel
The PI and the Media Developer met with a Professional Panel, consisting of five representatives from local agencies providing services to parents and adults who have CL. These professionals were invited to participate because of their field experience with the population. Agencies represented included the Lane County Developmental Disabilities agency, The Arc of Lane County, and two early childhood intervention programs. Professionals in this panel included two case managers, an intake specialist, a parent educator, and one program supervisor. All were non-Hispanic Caucasians. Four were women and one was male.
After the goals of the program were presented, discussion focused adapting the presentation on routines to conform to the population?s learning needs. Professionals on the panel recommended that the presentation be very simple; yet avoid being viewed as condescending. They also recommended that the learning experience be engaging and allow parents to participate in the activity in a concrete way, such as keeping a chart of routines. They felt, though, that the chart should be designed to allow families? choice in what bedtime activities they follow and what order they accomplish them in. They also felt that the children, who are often forced by family circumstances into taking adult roles, should be involved and have input in the activity.
Panelists also offered insights about family life, stressing the challenges parents face and the chaotic nature found in typical homes. Panelists advised us to depict models of desired orderly environments rather than overly realistic portrayals. In line with this, they recommended that the message would be better received if the difficulties were seen as stemming from the stresses of modern life (i.e. ?Following a routine is hard for everyone.?), instead of a result of cognitive limitations. Another recommendation was that we produce materials that were viewed by parents as being of very high quality, not the typical social service handout. This would provide a message that parents are valued and that stresses the importance of routines in their lives.
In addition to program review, we enlisted the professionals? consent to help recruit parents for the evaluation of the program. We discussed remedies for problems that might crop such as parents distrusting the evaluation process and becoming fearful that they might fail and be reported to child protection agencies. Professionals also reviewed completed offline versions of the program and offered feedback.
Development of Program Materials
Based on feedback received from the parent and professional panels, the research team decided to develop a video presentation on bedtime routines appropriate for a parent and child audience. This concern required a simple approach to content presentation. Clearly appropriate for the child, this simplicity-for-the-child?s-sake also ensured that parents would understand the material, but would not feel as if the presentation was condescending. Since we wanted the learning activity to be integral to the video presentation, we decided to center the learning activity (establishing a bedtime routine) around a character, Trudy Routine, in the video storyline. We used this appealing character to directly model and describe the activity.
Since both parents and professionals indicated a need for some kind of graphical aid in organizing a routine, we decided to organize the video program around a chart-like activity. However, our discussions with consumers convinced us that a just-the-facts-style of chart would not be motivating to the audience (parent and child). This concern inspired us to develop a fun routine activity board for use by parents and children, and which was introduced in the video by the caring imaginary character of Trudy Routine, rather than by a talking-head professional.
After developing a preliminary script, we contracted with an artist to develop the activity board, the imaginary character, and a set of icons representing steps in a bedtime routine (e.g. turning off TV, washing hands and face, putting on sleep clothes, etc.) The artist developed a board that included a ?routine path? on which the icons can be placed. We also contracted with a singer/songwriter to develop a bedtime routine song for children that presents a fun approach to getting ready for bed.
In addition, we developed a mentor?s guide that helps professionals utilize the program materials effectively and deepens their relationships with their clients. The guide explains how the materials can be used, and how to appropriately follow up with parents. It also provides general tips for supporting families, including acknowledging the parent?s role as the head of the household, helping parents create small manageable goals, and normalizing parenting challenges for clients.
Consultant Review
After feedback from the parent and professional panels was incorporated, the revised materials were reviewed by the project?s professional consultant, Marilyn Espe-Sherwindt, currently the director of the Family Child Learning Center and an expert in the area of supporting parenting of parents with cognitive limitations. Dr. Espe-Sherwindt reviewed the script, user?s guide, and routine board and provided written feedback on the design and content of the program. She gave us some suggestions about some changes that could be made in the video script and in the routine board. She also suggested that we give a simple definition of routines and also include a definition of routines in the parent mentor guide.
2. Produce Video and Supplemental Materials.
The first production task involved producing the parent/child interactive aide. The routine board is a four-color picture-based chart with movable vinyl parts (icons) to structure a bedtime routine. The icons, which are stored on the side of the board, can be used by parents and children to create a sequence of activities or ?routine path? to bedtime. The board and icons are rendered in a rich storybook style to appeal to children. After actors and location were selected, the video, which follows three different families as they set up a bedtime routine, was shot on location by IRIS? professional production team using the DVCAM Professional digital format.
During post-production, the imaginary character (Trudy Routine) and the routine board were animated by the Graphic Artist and included in program segments. A bedtime song, transitional music and a narration were added. An animation lip-sync program was used to conform the words of the narrator to the on-screen animated character. We also created a companion children?s video, which appears as a separate chapter on the DVD. The children?s video is a sing-along music video of the ?routine song.?
Once all media production was completed, the final program was mastered onto DVD and sufficient copies were duplicated for study purposes.
3. Conduct a Feasibility Evaluation with 15 Pairs of Families and Learning Partners.
The evaluation activity of this project was designed as both a demonstration of feasibility and an additional step in the formative process of developing the materials. Since families with cognitive limitations come into contact with professionals in many types of agencies that use a variety of service delivery models, our goals were to 1) ascertain how the materials were used by professionals, 2) assess the professionals' and parents' opinions of the usefulness of the materials, 3) demonstrate that families not only liked and used the materials, but also made improvements in their child's bedtime routine and 4 ) determine the impact of the materials on the relationship between the family and the helping professional.
Procedures
Mentor participants (professionals) for the evaluation were recruited through letters and flyers sent to social service organizations. The letter explained the study and gave eligibility criteria for parent participants. Mentors were asked to share information about the study with parents whom they thought would be eligible. These parents then either contacted project staff or gave the mentor permission for project staff to contact them with further information and explanation. Written informed consent was obtained from both the mentor and the parent at the time of the baseline assessment.
Baseline assessments, consisting of face-to-face interviews, were conducted in the mentors' offices and in the parents' homes. We delivered the program materials to the mentor at the baseline interview and instructed the mentor to deliver the materials to the parent. Both mentors and parents were interviewed by the same research assistant at baseline and exit. We felt that this was helpful in establishing rapport and trust with both participants and particularly for the parents since they tend to be apprehensive and guarded when being asked about their parenting practices.
All interviews with the parents were audio-taped. Audio taping of the interview facilitated ratings of the bedtime routine practices by an additional independent research assistant; this helped to offset the risk of interviewer bias. After the parent interview, the home interviewer and the independent research assistant wrote directed narratives concerning the bedtime routine. Additionally, interviewer-impression questionnaires concerning the bedtime routine were completed by both the home interviewer and the independent research assistant.
Approximately two weeks after the baseline assessment, a brief phone interview was conducted with the mentor to determine whether they had delivered the materials to the parent and to assess their initial reactions to the materials. Approximately one month after the baseline assessment, outcome assessments were conducted with both the mentor and the parent, again either at the mentor's office or the parents' homes. Both the mentor and the parent were paid $25 for each of the two assessments.
Subjects
Mentors: Thirteen professional mentors and one mother of a target mother were recruited for the evaluation (one mentor worked with two families). All of the mentors were paid employees of either publicly funded or private non-profit organizations, except for the mother. In the report that follows, data from that mother is omitted, since her relationship with the family is obviously different than that of the other mentors.
All of the mentors were Caucasian women; one was Hispanic. Six worked in publicly-funded agencies, seven worked in private non-profit agencies. Seven different organizations were represented; a private non-profit program specializing in working with families headed by parents who have CL, a brokerage service for clients with developmental disabilities, a county office coordinating services for people who have CL, a private daycare center offering specialized services to at-risk families, two county Education Service Districts (ESD), and a Head Start program. These agencies were located in 5 cities in Oregon: Springfield, Eugene, Portland, Hillsboro and Milwaukee.
The professional mentors had a variety of educational backgrounds: MA/MS in Special Education, Counseling, Marriage and Family Counseling and Education, BA/BS degrees in family and human services, Psychology and English; one had an Associate degree in pre-Social Work. Their experience in their current job ranged from less than 3 months to 25 years (mean years of experience 12.1, s.d. 7.6). An ANOVA conducted on years of experience by type of organization (publicly funded vs. private non-profit) revealed no difference between mentors in the two types of organizations. The size of their caseloads ranged from 6 to over 100; mean was 26.3, s.d. 23.4. An ANOVA conducted on size of caseload by type of organization revealed a substantial and significant difference (F (1,10) = 6.2, p=.03). Mentors in publicly funded sites had an average caseload of 47.5 (s.d 35); those in non-profit sites had an average caseload of 15.6 (s.d. 9.5).
The types of clients served by these agencies varied greatly: parents with cognitive limitations, adults with developmental disabilities, single parents, at-risk parents, past drug users, children who have CL, non-English speaking families, low income families, and teenage parents. On average, these mentors spent about 60% of their time working in clients' homes, 16% of their time working with clients in their offices, 11% of the time working with clients on the phone, 7% working in the community, and the remainder either at worksites or in a classroom. All of these mentors reported that parenting and personal support were the two main topics that came up in their work with families; 64% also said that household maintenance (rent, food, etc.) was a frequent topic, 50% homemaking, and 43% reported other topics ( e.g. health care and medical insurance issues, access to community activities and agencies). On average, these mentors reported that 80% of their time with families was spent in face-to-face meetings.
The mean amount of time the mentors had known the participating family ranged from about a month to 2 years (mean 1.1 years, s.d., .84). Prior to participating in the study, 50% of the mentors were seeing or talking to the family about once a week. However, 30% reported seeing the family rarely or less than once a month, 7% two to three times a month, and 14% more than once a week. Issues that came up with these families headed by parents with cognitive limitations were identical to those in other families: parenting, counseling and personal support, and household maintenance.
Parents: Approximately 25 parents were screened for study eligibility. Fifteen were accepted. Inclusion criteria were that the parent a) had a child between the ages of 2 and 6, b) didn't have a regular high school diploma, c) had a history of difficulty in school originating before the age of 18 (e.g. placed in special education or a resource room, held back, problems with reading/low literacy), d) had problems with routine child management needs (e.g. maintaining routine in the home, overwhelmed by routine demands of parenting) and e) met the federal low income guidelines (130% poverty level or below).
All fifteen participating parents were biological mothers of the target children. They ranged in age from 21 to 44 (mean age 30.1, s.d. 7.1). All were non-Hispanic, 80% were Caucasian, and two had a mixed racial background (Caucasian/African American, Caucasian/Native American). Four (27%) were married, four (27%) were divorced, five (33%) were single having never married, one had a live in partner, and one was married but separated. 27% of these mothers were employed full-time, 20% were employed part-time; the other 53% were unemployed. Four were currently receiving SSI/SSDI and three others had an application in progress. All had been placed in special education classes in school. Four of the target children were boys, eleven were girls. They ranged in age from 2 to 6 (mean 3.87, s.d. 1.3).
The three spouses and one live-in partner were all biological fathers of the target child. All were non-Hispanic and Caucasian. Three were working full-time, one was working part-time. They ranged in age from 26 to 38 (mean 31.4, s.d. 4.8).
Three families had adults other than the parents living in the household (a mother-in-law, a brother, an adult child and that adult child's girlfriend). Eight also had from 1 to 3 other biological children living at home, ranging in age from an infant to a 10 year old. In general, these households were made up of from 2 to 5 people (counting adults and children together). Based on mentor reports from the baseline interview, 80% of these families had a somewhat or very chaotic home life.
The monthly household income of these families ranged from $503 to $1800; mean monthly income was $1037, s.d. $473. The median monthly per capita (i.e. per person in the household) income was $255 (range from $125 to $600). Ten (67%) were receiving food stamps, thirteen (87%) were receiving WIC assistance, eleven (73%) were receiving other government support (e.g. TANF, public housing, health care assistance), six (40%) were receiving some type of community support (e.g. food banks, energy assistance programs), and two (13%) were getting financial support from their family. All but one of these families was receiving some type of financial aid; 74% were getting 3 or more types of such aid.
After the baseline assessment, two parents dropped out of the study, one because her children were removed from her home. The other mother was worried that participating in the study would lead to the removal of her child.
Measures
All measures for the study were developed by project staff and are provided in Appendix A. The parent interviews were pilot tested with members of the parent advisory panel. Interviewers were trained in-house on the administration of each instrument; the pilot test interviews with the parent panel also served as the final step in interviewer training.
Mentor Interview-Baseline: This is a 38-item semi-structured interview divided into three sections: a) mentor demographics, b) general information about the nature of their work (e.g. size of caseload, types of clients, how they work with typical clients and families), and c) information about the participating family and the nature of their work with them.
Mentor Interview-Exit: This is a 26 item semi-structured interview made up of open-ended, binary and Likert-type items assessing the mentor's satisfaction with the materials, documenting how they used the materials with the family, how effective the materials were for the family, and soliciting their ideas about what sorts of topics they would like to see in the future.
Parent Interview-Baseline: This is a 40 item semi-structured interview divided into five sections: Participating parent demographics, Spouse/Partner demographics, Target Child Demographics, Household makeup, and Bedtime Routine.
Parent Interview-Exit: This semi-structured interview repeats questions related to Bedtime Routine from the baseline interview, and adds an additional 28 items related to user satisfaction and acceptance.
Bedtime Routine Narrative: Research assistants who conducted the home interviews with the parents at baseline and exit wrote a brief directed narrative concerning the bedtime routine in the household. They were asked to cover the following questions in their narratives: 1) What are the main problems/issues in this family that make bedtime routines difficult? (e.g., child?s disability, parent?s work schedule, other people in home, environment), 2) What are the main positives/strengths about bedtime in this family? (Parents, household factors, child's temperament, etc.), 3) Does child fall asleep in his/her own bed? and 4) Any special problems getting child to bed?
For the exit narratives, additional questions were added: Did anything about the bedtime routine change between baseline and Exit? Did it get better or worse and why? Did the program impact the family? These qualitative data were used to validate quantitative ratings of a family's bedtime routine from research assistants, mentors and parents and to gain further insight into both general family and bedtime issues in this population of families.
Interviewer Impressions: This is a 13 item questionnaire with both binary and Likert-type items asking interviewers to rate aspects of the family's bedtime routine (e.g. how much of a bedtime routine exists, how well does it work, how satisfied is the parent with the bedtime routine). These questionnaires were completed by the in-home interviewer after the interview and the independent research assistant after reviewing the audio tape of the interview for both the baseline and exit interviews.
Two Week Mentor Telephone Interview: This is a brief 9 item telephone interview conducted approximately 2 weeks after the baseline interview. Both open-ended and binary items assess the mentors' reaction to and satisfaction with the materials, critiques of the materials, and a global rating of how helpful they think the materials will be for the family. We also constructed items to document the circumstances if the materials had not been delivered to the family in the preceding two weeks.
Results
Parent Report: At Baseline, 11 parents (85%) reported their child had a regular bedtime; at Exit, 12 (92%) reported a regular bedtime. At baseline, 7 (58%) reported they had a regular bedtime routine for their child; at Exit, all 13 (100%) reported a regular bedtime routine (McNemar's 2-tailed p=.0625). Ten (83%) reported that their bedtime routine had changed as a result of using the program materials.
A repeated measures MANOVA was conducted to examine whether there were significant changes in how difficult parents said it was to get their child to bed, how well their bedtime routine was working, how much fun they had putting their child to bed and how satisfied they were with their bedtime routine. Although the overall time effect was not significant (F(4,9=2.73, p<.10), two of the repeated measures univariate ANOVA's had significant effects: parents reported their bedtime routine was working better (F1,12)=8.15, p<.01) and that putting their child to bed was more fun (F(1,12)=11.11, p<.01). The two variables that didn't have significant change did have positive trends. Table 2 displays the means and standard deviations of these variables.
Interviewer Impressions: T-tests were conducted on items from the two interviewer impressions reports (face to face interviewer versus audio-tape reviewer) at Baseline and Exit. No significant differences were found, thus the mean of items from the two reports was calculated and used in the outcome analyses.
At baseline, interviewers reported that only 54% of the children fell asleep in their own beds; at Exit, 85% were falling asleep in their own beds. At baseline, interviewers reported that 54% the mothers had special problems getting their children to bed; at Exit, that had dropped to only 31%.
A repeated measures MANOVA was conducted with 6 variables: how much of a bedtime routine exists, how easy is it to get the child to bed, how much the parent enjoys getting the child to bed, how satisfied the parent is with the bedtime routine, how well the bedtime routine works, and how often the child goes to bed at about the same time every night. The overall effect for time was not significant (F(6,7)=2.92, p<.10), but 5 of the 6 univariate ANOVAs had significant effects. Table 3 displays the means and standard deviations of these variables.
Mentor Report: One of the mentors in our sample was the mother of a parent. In reporting the outcomes from mentors, we include her report for analyses of how well the materials worked and changes in the bedtime routine from baseline to exit. We are not including her reports in analyses of how the materials impacted the relationship between the mentor and the parent since the relationships are not comparable in this context.
1) Effect on Bedtime Routine
At baseline, mentors were asked to rate how well the family's bedtime routine was working. 3 (23%) had no knowledge of the bedtime routine, 38% said there either was no bedtime routine or it was a big struggle, 31% said it didn't work very well, and 1 (8%) said it was okay, but not great. At exit, when asked this same question, only 1 (8%) reported having no knowledge of the bedtime routine, 39% said okay, but not great, and 54% said very well. A repeated measures ANOVA conducted on these pre-post ratings revealed a significant time effect (F(1,8)=24.5, p<.001) for the 9 mentors for whom we had data at both points in time. The mean baseline rating was 1.11 (s.d. 1.17); at exit, this mean had increased to 3.44 (s.d., .53).
2) Frequency of Support and Quality of Relationship
At baseline, 36% of the mentors reported contacting the family 2 to 3 times a month or less, 50% once a week, and 14% more than once a week. During the intervention, 33% had weekly or fewer contacts, and 67% contacted the family more than once a week. Since the data from the exit interview was on a different scale than the question in the baseline interview, we rescaled it in order to perform an ANOVA. The data from the exit interview was first calculated as number of contacts per week by dividing the total number of contacts (in person and by phone) reported by the 4 weeks of the intervention. It was then recoded into categories to match the variable from the baseline interview (e.g. .50 was recoded as "2-3 times a month", 1 as "once a week" and all values over 1 as "more than once a week". A repeated measures ANOVA between frequency of contact at baseline and exit revealed a significant difference (F(1,11)= 16.04, p<.01). The mean at baseline was 4.58 (s.d. 1.4) or slightly less than once a week; at exit, the mean had increased to 5.5 (s.d., .80), more than once a week.
75% of the mentors also reported the program had an effect on their relationship with the family; of those, 44% reported a somewhat positive effect while 56% reported a very positive effect.
Midpoint User Acceptance Interview with Mentors
Approximately two weeks after the materials were delivered to the mentor, we conducted a brief phone interview to assess how the mentors had used the materials with the family and the mentors' reactions to the materials (User's Guide, video and board). Twelve of a possible 15 mentors responded to these questions (two families dropped out, and we were unable to complete the midpoint call with one mentor).
All twelve had read the User's guide; 75% found it very useful while 25% found it somewhat useful.
Eight mentors had suggestions about aspects of the materials we should refine, e.g. shortening the song in the video, adding an additional set of peel-off stickers for siblings, and modifying details on the board. These comments will be useful to us as we produce similar materials in Phase II. Regardless of their critiques of the materials, all twelve of these mentors thought the materials would help the family they were working with.
Mentors were also asked, at this midpoint call, to briefly describe how they'd used the materials with the family. Three had previewed the video before they delivered the materials to the family. One of these three also visited the IRIS Media website to access additional information about working with parents with cognitive limitations. Eight of the twelve mentors watched the video with the family, presented the board, and spent time talking about bedtime routines and assisting the family in applying the information to their situation.
At the time of this midpoint call, three of these eight had followed up with phone calls to the family; one had called once, one had called twice and one had called five times. Four mentors did not watch the video with the family (one because the DVD didn't play on the family's player, a problem which was corrected by sending a duplicate DVD). One delivered the materials and showed the mother how to use the board. The other three delivered the materials and had some sort of discussion with the family about them. One of those who left the materials with the family had called once to check in with the mother.
Mentor Exit Consumer Satisfaction
All 13 mentors said that the program met the needs of the family either fairly well (39%) or very well (61%). All but one also said the materials had an effect on the family's bedtime routine. The majority (77%) also thought the mentor's guide was quite a bit or very helpful to them. 82% rated the family situations in the video as very realistic (18% somewhat realistic). 58% reported they had learned something new from the program. 92% indicated they would definitely use these materials with other families (8% probably), and 92% said they would definitely recommend the program to their colleagues.
Parent Consumer Satisfaction
All 13 parents watched the video, and 62% reported watching it more than once. One mother said she'd watched it 18 times; the mean number of viewings, leaving out that one outlier, was 3.2 (s.d., .71). 39% liked the video a little, and 62% liked it a lot. Although 23% didn't especially identify with the parents pictured in the video, the remaining 77% did, saying that the people in the video with either a little (23%) or a lot (54%) like them. 82% said that the child liked the video "a lot", and 91% that the child liked the song "a lot". Although 46% said their child didn't watch the video before bedtime, 23% said that happened "once or twice", 15% "sometimes" and 15% "regularly". 92% liked the bedtime routine board and 77% used it to plan a bedtime routine with their child. 77% said they'd learned something new from the program, and all (15% probably and 85% definitely) said they'd recommend it to other parents.
Additional Evaluation Activities
Panel of Local Experts: A panel of experts, consisting of 7 representatives from local agencies providing services to parents and adults with MR, was convened to evaluate the program. Agencies represented included the Lane County Developmental Disability agency, the Arc of Lane County, and two early childhood parent education programs. Job titles of people making up this panel included 3 case managers, an intake specialist, a parent education, a program co-director, and one program supervisor. All were Caucasian; 1 was male. Participants watched the video and inspected the accompanying bedtime routine board. Project staff developed a brief questionnaire (see
Appendix A - Instruments) which participants completed.
After completing the questionnaire, the Primary Investigator led a short debriefing discussion. Responses on the questionnaire and during the ensuing discussion indicated an enthusiastic and very positive response to the materials. All participants indicated that parents would like the program (50% probably yes, 50% definitely yes), and that it would motivate parents to start or improve their bedtime routines (14% maybe, 43% probably, and 43% definitely). All thought the family situations portrayed in the video were realistic (83% quite a bit, 17% very much). The mean rating of overall program quality was 8.6 (s.d. 1.3) on a scale from 1 to 10. Several participants wrote comments on their questionnaires; one person indicated she found the video ?Well done, visually attractive, appropriate for a variety of audiences?. Another commented: ?I would use this program with almost all of the families we serve. Realistic portrayal of the bedtime struggles and frustrations when there is no routine?Beautiful graphics."
Panel of At-Risk Parents: Several professionals indicated that the materials would work well for with a wide variety of parents on their caseloads, not just those with cognitive limitations. The Primary Investigator, who is the director of the Lane Community College Community Center for Family Counseling, teaches a free parenting class for at-risk families. We followed up on professionals? feedback by presenting the Phase I materials to a group of 10 at-risk parents. Seven of the 10 parents had been referred to the class by the Oregon Department of Human Services, Child Protective Services; the other 3 were divorcing and had been referred by their attorneys. Two of these parents were fathers; 8 were mothers. They ranged in age from 23 to 43 (mean 31.7, s.d. 7.4). They had an average of 2 children, range from 1 to 3, of ages ranging from 1 to 11 (mean age of children 5.0, s.d. 3.5). All were Caucasian.
All these parents reported having a regular bedtime routine with their children, though only 20% reported it was working "very well"; 10% said it wasn't working very well and 70% said it was working "fairly well". 40% said it was "somewhat of a hassle" getting their children to bed; 60% of these parents were mostly or very dissatisfied with their current bedtime routine. After viewing the video and the bedtime routine board, 67% of these parents felt the materials would be "helpful" or "very helpful" in giving parents ideas about setting up a bedtime routine. 89% felt the bedtime routine board would be "helpful" or "very helpful" in helping parents plan a routine, and 89% said the program would motivate parents to start or improve a bedtime routine. When asked for their overall impression of the program, 89% said they either "liked it" or "liked it a lot".
Discussion
In Phase I, we completed our two primary goals: (1) we developed a program on establishing a bedtime routine in the home that consisted of a video, interactive support material, and a mentor?s guide to help social service professionals implement the program with parents, and (2) we conducted a feasibility evaluation with 15 pairs of parents and parent mentors and an evaluation of the completed program by a local panel of social service professionals.
Program development was an iterative process informed by our expert consultant, Marilyn Espe-Sherwindt, Ph.D. and a panel of representative consumers: Parents with cognitive limitations and the social service professionals supporting them. Prototypes of the program were reviewed by parents and professionals, and they helped shape the program materials and script. It was important to gather as much information as possible about what happens naturally for families so that the videotaped material would contain characters parents could identify with and reflect situations parents commonly experience and relate to.
From parents we received extensive information about the nature of the bedtime routine: what the situation is for families, parent?s values related to routine for their children, and what they would like to change about the bedtime routine. From professionals, we learned about their experiences in working with families headed by parents who have CL and we received information based on their hands-on experience about the sorts of instructional strategies that are particularly useful with this population
In Phase I of this project, we demonstrated that we could produce parent education materials suitable for parents with cognitive limitations and for the professionals who support them.
Consumers found the materials to be attractive and engaging and appropriate for the population. Our consultant, Dr. Marilyn Espe-Sherwindt, an expert in the field, commented: ?I love what you've done -- it's very down-to-earth, very concrete, easily generalized, yet soft, gentle and empowering!!!? With respect to the video and routine board, she was impressed with the inclusion of three very different scenarios, each of which could be applied to most families.
In addition, she remarked that the video would be useful for both families headed by parents with cognitive limitations and typical families. Dr. Espe-Sherwindt indicated that another important feature of the program was that it stressed that there is no single right approach to a bedtime routine, allowing families to choose the approach that best fits their needs. She also noted that the materials will help parents generalize what they learn about setting up a bedtime routine to other parts of the day, and remarked that the video includes important information for dealing with the inevitable exceptions that happen when setting up a routine and the supported the inclusion of tips for getting back on track. One feature that was especially appealing to our consultant was the use of art on the routine board. It is important to use drawings that represent homes that our target families can relate to.
Most mentors made positive comments about their overall impression of the program: "Liked the video. Presentation was easy to understand. Different kids have different issues-liked that." "Exciting tool, really good, especially important topic for families." "Very well put together." "Very excited about the program? Great for all parents, not just parents who have CL." "I really like materials, helpful, simple to understand." "Materials were great, useful in a lot of situations. Any family could benefit." "I liked that they were visual?Helped family follow the program better?Liked three types of families [represented in the video]. Seemed real" "Very impressed. It's great; I?d love to have one", "Fantastic. The child was excited and watched the video four times the first day." "Simple to use, attractive?Did a good job of being clear and easy to use."
The majority of mentors thought the mentor's guide was quite a bit or very helpful to them. When asked if they found any part more useful than others, seven said yes. Five of those seven mentioned the trouble-shooting tips as one of the most helpful sections. Others liked the tips for supporting the families and how to work with more than one child. One commented that she "keeps it where she can refer to it. It was great, I like that it's only a few pages."
The changes in parenting skills we obtained (e.g. more families establishing bedtime routines or already established routines working better, mothers having less stress at bedtime, more of the children having a regular bedtime) testify to the power of the materials to affect family's lives. Several mentors commented on the family's reactions to the materials. One said that "Mom was excited" when she saw the materials for the first time and several mentioned that the children were also excited. Another commented that shortly after the materials were delivered that the bedtime routine had improved. Yet another responded when asked if the materials would be helpful to the family, "It already is. They have been able to follow through using the materials as part of their routine. They are using it as a family, including child and sibling. It has made bedtime easier." Another mentor said the mother "...was definitely inspired by the materials to make changes."
While the materials seemed appropriate and appealing, of equal importance is the effect of the materials on the parent/mentor relationship. The evidence is clear that the quality and quantity of support provided by the parent mentor is the single most powerful influence on parenting practices for parents with CL (Wisconsin Council on Developmental Disabilities, 2004). The majority of mentors reported the program had a positive effect on their relationship with the family. Comments made by mentors at the midpoint telephone assessment describe how the use of the program affected both the depth and the breadth of their relationship with parents: "Opened a new chapter for us to discuss? more in depth? wasn't aware that it was such a negative issue for her." "Positive experience-added more texture to our relationship?another thing to check in on?Both learning together, equalized the relationship, less authority imbalance." "Prioritized their needs more, watch how I communicate and be more sensitive to their needs." "Strengthened the relationship?Mom really enjoyed it." "Got to know them better, got to provide some support that was needed." "Brought us closer?Let us know each other a bit more because of calls and one extra home visit."
The changes in the quantity and quality of support provided to these families by the professional mentors are evidence that giving professionals information and appropriate materials to use with these families can lead to an expansion of support which bodes well for more positive outcomes for these parents with cognitive limitations. We believe these results provide ample justification for continuing with development of the complete curriculum.
We recognize that even though the results from the feasibility test are very positive, with such a small sample and a non-experimental design, we are limited in the generalizations we can make. However, we do believe that the sample of both professionals and parents was representative of the population; several types of agencies were represented and the demographics of the families match up well with circumstances generally cited in larger studies (e.g. low income, a majority of single mothers, chaotic lifestyles).
We propose to expand development and evaluation activities in Phase II. The primary goal of Phase II will be to continue the development of instructional materials and to conduct an experimental randomized trial of the theory-based intervention among 80 pairs of parents and a professional parent mentors.
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