AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
GAIL KIECKHEFER: All right. We will start. My name is Gail Kieckhefer. I’m professor at the University of Washington in the School of Family and Child Nursing and I’m the PI on the building on family strengths program. And to my left is Barbara Popper who is the Director of Family Voices, the Family Matters Project. And we together are giving this next workshop. We were asked to speak to, we submitted individually but we were asked to speak together in this next 90 minute workshop because of the centrality of the concept of health promotion for children with special healthcare needs in both of our projects. Both Barbara’s and my project truly feel that health promotion is a right, is essential for every child, is definitely desired by parents and be children, that it’s often unaddressed as our lunch time speaker, you know, made so pointedly, points towards it’s overlooked by healthcare providers for all children and it’s certainly not consistently offered to parents of children who have special healthcare needs.
In addition a second commonality in our projects we the either grounding or at least a core value in the belief in the Bright Futures philosophy. And as the two of us talked we came to remind ourselves that Bright Futures was an initiative of MCHB over a decade ago and it was based on the philosophy that every child deserves to be healthy regardless of the chronic condition that they also might have. And that the foundation for health in children, all children, would be this trusting partnership between healthcare professionals, children, and their parents, again as Dr. Shore talked about with families or parents being the central and constant influence in the lives of their children. And that the goal is to implement strategies to enhance child health promotion and prevention efforts among the public and all healthcare providers. So, when we thought about our two projects and talked, we realized that the focus of both of these projects truly is health for children with special healthcare needs. And again, both of our projects were grounded in the philosophies put forth by Bright Futures. Both of them are community based research projects, truly community based, truly involving families right at the onset of the projects as central components and then really involving families as partners right from the beginning. So as we talked together we decided that the, what we would do for the workshop, the general purpose for both of us, is to really review the design and the emerging results of both Barbara’s project, Family Matters, and the project I’m involved with, Building on Family Strengths. And then hopefully allow some time for dialog with us and amongst all of you in regards to where do we go in the future in terms of projects that could promote health for children with special healthcare needs. And I’m going to let Barbara come up and introduce herself just a little bit more as I load up her presentation.
BARBARA K. POPPER: Thank you. Let me just ask. How many of you are involved in any way with family, with Bright Futures, using the materials? Okay a couple of people on this side, okay. And so we’ll assume the rest of you are here to learn more about Bright Futures and how it’s being used. Okay. Great. I will mention, Betsy Anderson is here also and Trish Thomas from Family Voices and we also have some Bright Futures for families materials which you may not be familiar with. You’ve seen those? Okay, we have the pocket guide and now it’s in Spanish. And one other resource I brought is our family talk cards. If you run discussion groups or have groups of parents together you might want to look at these. They’re little vignettes that parents can pick one, they don’t have to say it’s there problem but they can choose one for discussion in a discussion group and it covers all of the elements of Bright Futures, each packet is a different age and that’s something that we have on our website as well.
UNKNOWN SPEAKER: Do those come in Spanish also?
BARBARA K. POPPER: No, not yet, but a good question. Yeah, just tell me what to hit when I want to move on. Up or down, okay. We’ll try.
UNKNOWN SPEAKER: Or the enter button.
BARBARA K. POPPER: Okay, great. So this is our Family Voices Family Matters Project. It’s a research project so I can’t invite all of you to participate but I’ll explain what the project is and what we’ve been learning about promoting health and wellness for children with special healthcare needs. The reason we have disabilities up there is it’s funded by CDC and that’s their terminology although we use how children with special healthcare needs, which is more MCHB definition interchangeably. Family Voices, I’m not sure how many of you, how many of you are familiar with what Family Voices is? Oh, just about everybody, okay. We’re located primarily in New Mexico with a central office. Some of us, Betsy and I and Norwell’s are in Boston and we have people in other places. We’re pretty much a virtual organization. So, but there is Internet phone et cetera, and you have it on your handouts. And as I said, our funding is centers for disease control. The, this project, as every project in Family Voices has to fit the mission of the organization and we feel that it does. We’re advocating for healthcare services that are family centered, community based, comprehensive coordinated, culturally competent and promoting the inclusion of families as decision makers at all levels of healthcare and promote supporting essential partnerships between families and professionals.
This particular project is a partnership between family voices and Tufts School of Medicine. And the goal of the project was, first we wanted to find out whether this was even a topic for families to think about. Is it on their minds? Are they hearing about it? Hearing Ed Shore at lunch makes me wonder what doctors are finding time to discuss and particularly and he didn’t distinguish if it’s a child with special healthcare needs, how do they do anything in the 20 minutes and does it encompass health and wellness? So we were looking to see whether this project could develop a method that would help support families as they’re promoting health and wellness and using mentor, peer support, which is something that as a parent organization, we have a lot of experience with. The project is a little different and we made the argument when we asked for funding. It’s a little different. It’s family directed. Family Voices is the grant holder. It’s focused on issues that families do at home. These are not medical treatments or hospital based routines.
These are things, people get up in the morning and they give their kids breakfast. They think about what they’re feeding them and these are the kinds of topics under health and wellness promotion that this study is looking at. And we’re looking at strategies to help promote health for people with disabilities, which was what the grant was written to, to look for these strategies. And we’re looking at children, which is a little different from some of the other grantees. And the partnership with the school of medicine, so it does have the research component. And we’re linking it with work we’ve already done as I showed you with Bright Futures and Bright Futures for Families. When we decided how we were going to work the grant, we said parents would be involved in all aspects of the grant. So they’re on the advisory board, I’m the project director, we have parents who are the mentor parents and they are very key to what we are doing. We’re in six sites in five states. In one state we have an English speaking project and a Spanish, speaking project. We are across the country. We have a site in Washington State, which is where Gail is from and we have New England, we’ve got Louisiana and New Jersey. We wanted diversity so we were hoping to find places where people could help us reach into communities and reach families from diverse backgrounds. And we have an external advisory board, which has a youth member.
If you don’t know, Family Voices has a KASA Group, kids as self advocates. And so we have one of their members on our board. This, because Bright Futures is part of what we do through an MCHB grant, it was very easy to link this project to the other materials that I showed you and the other efforts under what is now called the impact project. There are three project phases and we’re coming to the end of our third year and looking at refunding in the next grant opportunity, but in the first piece of it we wanted to do the formative research, which was developing our community based partnership and having focus groups. The second intervention is going on now and we are providing mentor/peer support, two parents in the five states over the six sites and they are working with individual families who have enrolled to promote Bright Futures recommendations at home within their household. And the last thing that we will do during this project and we, if those of you who are here might be from any of our five states, we’re looking at getting more data on family strategies and perceptions on health promotion through a broad based survey that we’ve developed. It was primarily for the intervention but we think we’ll get more bang for the buck if we can go out within those five states and find a few more hundred families who might respond and we’ll be doing that electronically.
For the focus groups that we did in the beginning, we developed a topic guide. I can’t remember how many, iterations it went through with lots of input. We did some little trial groups. We had the mentor parents try them out with two or three parents and some stuff came back as what are you talking about or you couldn’t ask this question or that doesn’t mean anything. So it got revised and revised. If any of you took the focus group workshop last year with Janet Billson, we had her help. She’s in Rhode Island and a fabulous person for focus group work and she helped us develop it and helped us train the mentor parents to conduct focus groups in a way that was really going to us some information. So what we wanted to know is what do parents think about their child’s health and the factors that may help or hurt their health now and in the future. So it’s not just what I serve him today, but how do I inculcate some good eating habits because this child with this particular condition really needs to be thinking about nutrition over the life time.
We wanted to know about the challenges related to promoting healthy habits within families and that maybe we could all make a list, but we wanted to go out in the focus groups and see what people would tell us. And we also asked them what they thought of our project design and its feasibility of going out, recruiting families, in a randomized, controlled study, which meant some families would have to wait to be helped and other families would get first dibs on being mentored. And so we asked for their input, which really changed the way we ended up doing the project. There were themes that came out of the focus groups and what we found, which was certainly a relief to us was that health promotion resonated with the parents. They were very interested in what we were talking about and what we were going to be doing. They saw the link of health and wellness to their child’s overall health status. They didn’t see their child as just a Downs Syndrome or just an Autism case. They didn’t see their kids in those ways.
They were looking at their health and wellness overall. And so they were really happy to have this discussion come up. They saw special relevance to their children. Some of the parents talked about that with particular, the focus groups with their child’s particular syndrome, weight was an issue or diet or exercise to help them keep whatever strength and energy they might have if they had a physical limitation. So they were telling us we were on the right track. And they liked the universality and the normality that just like any other mother, they’re nagging about eating your vegetables. And so that was positive and their kids were getting some of the same messages and having it applied to them in the same way, particularly for families who had more than one child because they didn’t want to have a dichotomy of what they said to their older or younger kids and what they said to their child with special needs. So they were very good about giving us feedback that in some ways we were on the right track. We found out from them, which were the important topics.
We had a whole long list that we thought parents might want to work with a mentor on. And the ones that came back as being sort of on their radar screens, definitely healthy eating, physical activity, having family routines and rules, which we might not have initiated ourselves, but how do you make it happen on a regular basis whether it’s eating or physical activity or not too much TV. And so they talked a lot about having routines. Supervising screen content and we recognized to that that’s in important topic in a lot of homes for a variety of reasons, safety included. And taking good care of their teeth. And again this could be impacted by the child’s disability, medications they’re taking, other restrictions in their lives. The more complex part of it was sedentary behavior limits versus screen time benefits for certain disabilities and for certain children. TV and computer were really their friends. They were models, particularly the kids with Autism. Parents were saying, this is a really helpful way for my child to learn some good social behavior. So we had to think about appropriate use, maybe not even limits but appropriate use of videos and computer and television.
Less on their radar screens, which we were a little surprised at because one of the things we had put in was the well child visit schedule. And we found out from a lot of parents that that was not exactly the most important thing. And I think one of the things Ed didn’t say when he was looking at how many visits kids have, he was talking about well child visits. A lot of these were kids who were at the doctor a lot of the time for other reasons. And often they can’t, oh we’ve just been to the doctor. They weighed him last time we were there. The doctor said no shots, so they feel like in a way some of those sick visits or treatment visits really become a well child visit. And we also saw that for some of the ages of these kids, the periodicity is once a year, so this was not going to be a focus of a six-month intervention for them. Second hand smoke turned out to be a bit controversial particularly in one of the groups.
The Spanish speaking families in New Jersey told us this was not an issue they had control over. And if the father was a smoker or there were smokers in the home, they were not going to have much control over limiting that. So we decided that that would not be a focus. They brought up other issues that, and I saw one of the statistics that doctors only talked about gun safety 15 percent of the time and I thought well maybe that varies by which part of the country you live in. But it was brought up I think particularly in Vermont where lots of kids would go to homes to play where there would be guns in the house and how do you ask a family whether they’re locked up? Parents were very concerned and often this also related to the child’s disability or limitations. How do they protect themselves? How do they speak up for themselves? So the self-advocacy and self-protection skills. And then non-traditional approaches, people who were using Naturopaths or other versions of healthcare and complementing whatever else they were doing. So those were issues. We asked parents, where do you get your information about health promotion? And lots of the places that we all get all kinds of information, whether it’s all helpful or not. The Internet, the media, other parents, their support networks.
Many of the parents belong to disability related groups or they belong to their school PACK, parent advisory group for special ed. So they have lots of networks that were providing them with information. Some of those spoke very highly about the school nurse and the health curriculums that were going on in school. One parent said particularly, thank God it’s coming from the school nurse. If that were another message I was delivering it would get me nowhere but all the kids are hearing it and this is really driven home particularly the avoiding smoking. And a lot of the schools had programs on that. They got information from the dentist and so that was one other place that somebody reinforced some of the messages parents were giving. And many people said WIC was a place they got health information. And at the very bottom but not unimportant to us, health providers were not viewed as an important source of information on this topic of health and wellness promotion. And again, in that 20 minutes, if you come in with a kid with special needs, you can see how some of that falls off it. You might get a pamphlet on the way out.
The challenges, we asked parents in the focus groups about what are the challenges. They listed all kinds of good health and wellness promotion ideas and then we said well, what are the things that keep you from getting there? Some were common to all children. One day coffee is good. One day coffee is bad. One day something is recommended. Another day it isn’t. So the recommendations change. At what age should you start doing something with your child? Popular culture, they’re fighting what’s out there in the messages commercially or just socially they have to come up against that. And the parents own lifestyle. So it’s a bit of sensitivity to the fact that we’re talking about healthy weights and maybe the parents aren’t themselves at a healthy weight. But specific to children with disabilities, time, energy, and money, cost of doing some of the wonderful things we’d like to think would be terrific for our kids but you, with other out of pocket expense and just limitations on funds, they’re not necessarily going to happen. The child might have a condition that would limit the recommendations or the options.
We did have some families who were interested in nutrition, but the child might be, have a kidney problem and be on a specialized diet. Some of the kids actually needed to gain weight. So some of it was very particular to their condition. And drawing the line. I think parents weren’t just so sure how much they could be enforcing it and there’s often that perception that with all the other things going on and the other limitation in a child’s life, how strongly did they want to make these an issue as well. And again health advice changes, so what’s up one day is down the next. When we asked them about what would be helpful as resources that would help them in health promotion, they wanted much more access to information. Even though they gave us all of the ways that they get information, access was important. Community values were listed. Support of networks would help them if they had other groups of friends. If the school was doing some overall promotion of getting rid of soda machines.
Though all of those were the kinds of things that would help them reinforce the messages they were giving. I know my children suffer from the fact that they were the only kids who had to have healthy lunches at school, which I didn’t believe but. So you’d want to know how much you’d want to go against the stream and how much they’re just playing you. Personal beliefs played a role in this and I think some parents had their own feelings about what was recommended that they wanted to stick with and not necessarily give up some of their own personal beliefs. Knowledge of the system, education, confidence, family rules, and their own health and wellness practices. So they were, all of the things that they were using as best they could. When we asked them about would they like to see us do a project where a mentor parent could be available to them if they enrolled in the study, they thought it was a great idea. They were very supportive and impressed that Family Voices was taking this on as a project. They were very impressed that Tufts School of Medicine was working with us and they were very impressed that the CDC would fund it. So they felt, that was very supportive to think this is an issue where their children were actually coming to somebody’s attention and that there was some funding put into it.
Then there’s the list of their reservations and their concerns. They wanted it to be flexible. Well, how often would I have to call the parent or how often would the parent call me? I’ve got a busy schedule. I can’t always be found. We assured them it could be by phone or email and they would determine that and they would determine the frequency. Who is this mentor parent and what do they know and what do they know about my kid’s condition and what do they know about health and wellness? And we assured them that we were basing it on Bright Futures. They would be experienced parents. Some of them got a little confused between the parent-to-parent aspect. We were not matching each of them up with a particular parent who’s kid was the exact same age with the exact same diagnosis and the exact same health promotion needs, but it was going to be one mentor parent per state. And then in some cases they said, oh, do you mean the person I already know from, you know, Family Voices or the parent, oh, that would be different. They didn’t need an exact match anymore. They were wondering was this going to duplicate some other things that were going on or things they were already doing? And would they have to keep track of anything. The minute you say to people if you just fill out this record or fill out this survey on a weekly basis, that’s a problem.
People who had older children weren’t sure they’d get their kids to buy into it, particularly adolescents. And they thought that a 12-month intervention was too long. So it became six months. What we’ve done is a project together with our partners at Tufts, is during the first year we really learned to work together. We had the mentor parents in each state join with us in a core team. One of them in particular meets with us every week or two, but we have a list serve and regular phone calls with the other mentor parents. We have an outside consultant who has been, who advised us, Janet Billson, on the focus groups. And we have the medical adviser and that’s been very helpful and reassuring to everybody to have that ability. We have been developing the research capacity and confidence in our mentor parents. They weren’t sure at the beginning they could be an expert on everything. But we assured them we would provide them with the materials and resources as well as our own individual support. And we finalized the intervention.
The mentor peer support and the mentor parents, they’re in a supportive role but it is a research project. The mentor peer support would be, as I said through the resources. We’ve given them a tool kit of resources, some from the Internet, all of it vetted, some of it that’s been written by a graduate student and everybody’s had a chance to review. And we’ve had ongoing personalized training so that they would know exactly how to use it. And a lot of in person meetings and phone calls and direct contact with us. And they are feeling very ready for their role. When they have an enrolled parent, and all the enrollment goes through Tufts. We don’t individually pick parents. They hear about it thought the usual ways that families get out information about something that’s going on, flyers and list serves. They contact Tufts. And then the families when they get enrolled and matched to or the mentor parent contacts them, they select whatever goals they want for their family for the next six months. It’s not our decision. It’s theirs. And then as I said before they decide, phone, email, how they want to have the contact happen. In the group in New Jersey that’s Spanish speaking, they prefer everything to be in person. And so the mentor parent there meets with them at her office and facilitates a lot of that contact. And we’ve limited their reporting to just a pre and a post brief questionnaire on what the experience was and it’s a six-month intervention.
We decided that children ages six to 18 would be the right age group. If we had children who were too much younger, the people might still be involved with the diagnosis stage of life and they wouldn’t be able to focus on some of these things. But we wanted kids medically stable, not expecting to be hospitalized for anything major but these are families where nobody can promise anything for the next six months, but the expectation at the beginning would be their kids are currently stable. And we weren’t sure that it would be a good idea to get involved where people had other behavioral people working with them on some of the same topics, so for instance, if a child had Autism and had some eating issues and they had some interventionists working with them on those topics, that might be a reason that we either wouldn’t have them in the project, or we’d have them focus on some other goals besides eating. So we weren’t crossing each other and contradicting each other. And, of course, there’s always a caveat. We didn’t want families to think that was a treatment opportunity because when you see what the goals look like, you’ll see that these are not curative in any way.
It also helped when we had to go through the Institutional Review Board at Tufts that we weren’t doing anything that was risky in a medical sense, no surgeries or anything. Our goals were things like make meal times pleasant. And so when you think of the risks and the benefits, the risks were pretty low level. Serve your child nutritious snacks and we had all among ourselves really thought about how things could be distorted in a way that could be dangerous. You say to a parent, your child needs to get more physical activity and you think worse case scenario as we all can come up with as the parent and makes the kid go out in the snowstorm and walk four miles today. So we have to assume those people who are applying the same kind of good sense that they do normally. So those were the Bright Futures goals that people could choose from to work on. And our peer supporters in the states were already parents with experience before we found them. You may know some of them. They have a screening question they ask at each new contact with the family that’s protective and again they’re supervised and have had some training.
The initial question for our screening was is the child’s condition generally stable? And is the child scheduled for anything major? But then each time they call, they say, is there anything new about your child that you would like me to know, just to make sure that it’s something that the mentor parent knows about and might change a recommendation or might think maybe the parent has misconstrued or maybe that the mentor parent should say, instead of working on this today, why don’t I call you in a week or two when you’re kid’s no longer got the flu and vomiting while we’re discussing good nutrition. As I said before, we have a medical advisor whose a Developmental Pediatrician and is available to the team. When we do our calls about every two weeks, Dr. Ellen Perrin, some of you may know her, also at Tufts, gets on the phone and says, any questions. And there’s always somebody who has some, well, the parent said to me, and what do you think and then we have her advice that she either would discuss them and maybe talk to the parent, but usually most of the time it’s been, you’re doing the right thing and that’s not a medical issue and then as a pediatrician she wouldn’t be concerned about.
So it’s very reassuring for us as project staff and very reassuring for the mentor parents to have her input. Oh here was the question I meant. Has anything changed with respect to your child’s health since our last contact that affects your ability to participate in the study? And it sounds clumsy when you say it, but if they know this is a standard question I’ll be asking you every time, it’s not so awkward. And then we have the protocol of what we do then if they need to contact us and we consult with Ellen and certainly we would do that in between the calls if it came up and assess whether there’s any relationship to the intervention or whether they just need to back off or say to the parent, we’ll be back in touch with you. And, of course, any serious adverse events would be reported to the IRB. And I think I’ve mentioned some of this. We have conference calls. And the final steps will be the widespread dissemination of the survey. So if there’s anybody here from Vermont, Massachusetts, New Jersey, Louisiana or Washington State, we would love to talk with you at the end of the session about how we could get you the survey or tell you more about it and how perhaps you could help us get to more families of children with special healthcare needs to complete the survey. And that way we would know more.
Is there anybody from Louisiana? No, okay. Because we’ll probably add a couple of special questions for Louisiana as to were you affected by the hurricanes and then ask them some specific additional questions. And the CDC is anxious to see whether through this project we can find out information that could be helpful to others should any other eventualities occur in any of our states, any kind of emergency. And then we’ll share the experience. We’ll be writing and talking about this project. And also share the experiences and the resources and we’re getting ideas for writing the next grant of how to develop and expand this project into other places. But the mentor parents have really gained a lot of experience and know a lot more about working with families. We think this is something that in the new family-to-family health information centers, this will be a key part. Because parents do look to other parents and their support networks for advice and information and with the appropriate Bright Futures and what we’re developing in Bright Futures Family Matters materials, they’ll be better able to do that.
GAIL KIECKHEFER: How about--
BARBARA K. POPPER: Any questions?
GAIL KIECKHEFER: Yeah, why don’t you while I pull up the next part--
BARBARA K. POPPER: Okay. Gail’s going to play with the machine. Yes, go ahead.
UNKNOWN SPEAKER: I might have missed this, but did you mention how many parent mentors you have?
BARBARA K. POPPER: We have six parents in five states, because New Jersey has both English and Spanish speaking.
UNKNOWN SPEAKER: So you have one parent per state.
BARBARA K. POPPER: Per state.
UNKNOWN SPEAKER: And that’s by telephone. Are there face-to-face contacts?
BARBARA K. POPPER: They are by telephone or email, they have an initial telephone contact and then they determine between them how they’ll proceed from there. We’re trying to get 60 parents in the intervention and another 60, 50 to 60, as control. This is, one of the interesting things was originally that was all the researchers were interested in and when that’s done, they’re done. But our mentor parents very strongly said, I’m not going to enroll a parent and say, you’re going to be randomized and you might be the one who gets nothing. And so what we agreed to do was have the first six months be the intervention parents and that will be the piece that Tufts will analyze. After that, our mentor parents will continue to work with what were the control group parents? So when the second six months begins, which will overlap because there’s, you know, different times that people have come in, they will offer to be mentor parents to them. If they drop out, that’s one thing. But if they are anxious to have that support for six months, we will support that and keep the mentor parents doing it.
UNKNOWN SPEAKER: How do you enroll them in the office?
BARBARA K. POPPER: How do we enroll them? Who are we looking for, is that what you mean? Okay, we in each state, the mentor parents are fairly well connected. They’re either at a PTI, a Family Voices group, parent-to-parent in Vermont. They have all the usual list serves, the health departments have helped them, there’ve been some Bright Futures projects within their state. And so the word has gotten out widely through the clinics that they might have, just the usual routes where parents get information. If they get it two or three times, even better. Any other questions? Yes. Linda. Hi.
UNKNOWN SPEAKER: I’m actually a former health educator and I think one of the frustrating things I had to do (inaudible) in terms of promoting physical fitness, which I always do from a health point viewpoint is it’s almost (inaudible) with the school’s emphasis on tests, I mean, there’s even testing now in PE and rather than understanding that, you know, some kids are just not going to be good at X, Y, and Z, you know, the number of sit ups they do, et cetera. And you would think that schools have changed, but they really haven’t in terms of that very archaic viewpoint of, you know, the jocks get A’s in PE and the kids who can’t necessarily do well might go into one of those doors that had one of those kids that has usable intentions. So I don’t know if that something that’s going to be addressed (inaudible) or that your researchers will be aware that even, even if you want to promote that, that sometimes there are things especially in the school system that they do (inaudible).
BARBARA K. POPPER: Right. Well, I’ll give you two answers. One is, and it’s a Bright Futures approach is to sort of work within the community and work with other parents so that your Phys Ed program isn’t A, B, C, D, F, kind of, I mean, that doesn’t make sense for a lot of kids with or without special needs. But we really did limit what we’re talking about to what goes on at home? What do you and your daughter do for physical exercise? Do you take walks? Do you do Yoga together? Is there a children’s game that involves physical activity that you do on a regular basis? What are the kinds of things that families can do even if it is a kid who is in a wheelchair? Are there some upper body strength things that they are doing or promoting? So that it’s pretty much what does not need us to go out and mobilize the whole community to change but often if a family does get involved in these issues and talks with other parents, we would hope that they would also be moving out into the community and looking to get some attitudes changed certainly. And we have within our resources, there’s some wonderful things on the web about kids who have gone to health clubs or who have gotten in some other activities within the community. So there are examples out there and we send those to parents, ways to have your kid get some exercise. Ways to be physically active. And again, thinking one-step at a time. If they can do it with their kid especially when they’re younger, they may be motivated to get more actively involved in policy and politically. Some of us are very political. Yeah? Hi Grace.
GRACE: One concern is that we are forced to go to so many specialists, top specialists in a (inaudible) and we just simply don’t have the focus and the time to go to PCP to get the weight and the height and the (inaudible) depend on those doctors to do it.
BARBARA K. POPPER: And some of the parents said that their time with their primary care physician was spent updating them on what the specialists had to say. And they became the conduit of information and that becomes a problem. Yeah, last question and then I’ll let Gail--
GAIL KIECKHEFER: No, no. Go ahead.
UNKNOWN SPEAKER: I was just going to say, as far as that goes even, even going to the primary care provider, they a lot of times rely on me going to our specialist in order to get height and weight on my daughter. She’s relatively young. The only way right now we can get one on her, is if I hold her on the scale with me, I take her off and weigh myself, which of course is torture.
BARBARA K. POPPER: And they can announce your weight to everybody, right?
UNKNOWN SPEAKER: Well, yeah.
BARBARA K. POPPER: Well, if the mother weighs--
UNKNOWN SPEAKER: Besides the fact that I hate that, there’s going to come a day where I cannot hold her on a scale with me and there are no, you know, provisions for that type of thing. So that’s the thing that I find frustrating is for, like Dentists that won’t touch my kids teeth and she needs care way worse then, I mean she still drinks from a bottle at four and we have too, just so nobody, I know (inaudible).
BARBARA K. POPPER: We were about to judge you a bad mother, right?
UNKNOWN SPEAKER: I’ve got to get so much (inaudible), you know? It’s like I’m glad she can drink on her own, but you know, there are just no, I mean, it’s like I feel like I have to go in with a note from every doctor we see saying it’s okay to clean this child’s teeth. And this is a dental, a teaching dental school, within our local children’s hospital that I took her to thinking it would be, they’d be more, I mean, it’s just, it’s constantly something. There’s no provisions for the kids that have really physical needs, you know.
BARBARA K. POPPER: And on the one hand we’re talking about inclusion and then you get to these settings where there is no way that there’s going to be inclusion in the most normal things or for your child, they’ll say, sure we’ll clean her teeth, as happened to somebody in our office, and we’ll do it under anesthesia and you will pay me $6000 in advance or some, you know, ridiculous amount of money up front, which they were able to work around, but still, it’s that expectation that your kid’s different and so everything will be different and we’re trying to say, we’re going to, this kids are included in schools and included in other things and we want to normalize as much as possible. I’ll let Gail take over and then we’ll have a discussion at the end, too. Thank you.
GAIL KIECKHEFER: Well, I’ll tell you, I’ve learned a lot and when I get to the end I’ll certainly be indicating some way in which our next program certainly will be changed as a result of participating and listening to Barbara. The specific purpose of what I’m going to talk about, my comments, are going to review the purpose of the Building on Family Strengths research project. And ours is a research project also, discuss family involvement in the project, and I’ll discuss it in the way, what did it change? We’ll talk about how families were involved. Well, what difference did it make, because I think that’s really the critical part for us. Highlight the conceptual framework and emerging results from one curricular aspect, which was parent/child shared management, which is a love of my life, I guess. And then also because in the, we’re an ongoing project, but we look at for our data safety monitoring plan, which is to look at, you know, making sure we’re not making a negative difference in our families in the intervention.
We’re looking at Depressive Symptomatology and so we constantly analyze that as families come in and exit the program. And actually that data is probably more interesting than the shared management component. We are a research project and we’re funded by the Agency for Healthcare Research and Quality at the tune of big bucks, 1.4 million dollars and it’s, the project itself runs out, although I’m in the Department of Family and Child Nursing, the project itself is managed by the Center for Children with Special Healthcare Needs out of Children’s Hospital and Regional Medical Center, which is truly funded by Title V monies only in our state. And there are many reasons. Although my department would have loved to have had the project run through them so they could have collected all of the indirect cost, the reality of this project was the Center for Children and Healthcare Needs had all the connections. And so it made total sense, although it’s a logistic administrative nightmare in some ways to run it the opposite way, to go with the Title V agency and have it run from there and I’ve never regretted that.
The project was to first develop, then to evaluate, and then to revise a class for parents of children who had chronic conditions when we first started. We were actually looking to help what we saw as a population that had the least resources in our community, and those were kids with chronic illnesses actually we started out with. And it was mirrored after an adult self-management program. I don’t know if any of you know Dr. Kate Lorig who is a health educator at Stanford, who has developed an adult self-management program. She developed it originally for working with adults who had arthritis and then took a non-categorical approach and now has done lots of things with it. But she was very, very gracious. She came actually to the center and said, “I don’t know anything about children. I think a lot of what this adult program is based on, which is a self-efficacy based model, could be worked on with families of children, but I don’t know how to do it. Here it is. You can create a derivative product.” Now, remember there’s a legal thing with derivative products in the future for your selves. But she was very, very gracious. She’s a consultant on the project and has been very helpful. That doesn’t mean, however, that the curricular content was just lifted. We spent over a year, a year and a half, really changing some aspects and most of what the changes we made were done both because of our pediatric maternal child health background of all of the co investigators and people who are working on the project. And the multitude of parents we involved in the design of the curriculum.
Now, how do we see, particularly the shared management part, linking up with Bright Futures? I think if you know Bright Futures you know they have this step wise talking about that all health promotional activities with parents have to start with that therapeutic alliance. I’ve highlighted in red specifically where we see our project as trying to enhance by the content and the processes of the curriculum. So we definitely are trying to improve parental preparation, promotion of the, identification and then promotion of the family strengths. Parental effectiveness. Early autonomy of the child, ultimately promotion of developmental potential, actually in all family members and the child. Self-responsibility, self-efficacy, and mastery of the parent, which we are saying in our conceptual model, that if you can improve that in a parent, that’s the way to improve this in the child long-term, raising self esteem and we’ve changed this. Although the top notch on the Bright Futures work says independence, we’re very much believers on our team that independence is not the top notch of anything. It’s appropriate interdependence. That yes, what you do alone, what you do in partnership, always changes, but just because you are an adult, if you have a chronic condition, doesn’t mean you should be on your own, alone, that healthcare providers, community healthcare systems should never feel like you’re on your own. You know the self-management. Go off and do it now. And parents have told us indeed some of the push for self-management worries them because they’re getting the sense that you’re going to be on your own.
Okay. What is Building on Family Strengths? It’s a set of seven classes because we wanted to mimic this Kate Lorig model of self-efficacy, building that over time. It contains integrated topics that are woven through the sessions. It’s for parents of children who are two to eleven and it’s very interesting because we struggled with the age and parents are the ones who argued with us. We wanted to go originally with older aged children like maybe five to eleven and all of the parents throughout argued that this content was relevant for younger aged children and we needed to struggle with outcome measures. We shouldn’t design, let parents come in just because we were worried about outcome measures. We needed to find the outcome measures that would be appropriate for that age population, not just cut them off. We have a lot of guided discussions, which then speaks to the sharing with other parents. We do some teaching, a refinement of the skills the parents already have. And throughout we encourage activities that support self-efficacy and we explore the desire for a movement toward parent/child shared management, no matter how small or how big and long that direction can be. So the integrated topics are things such as coping with stress and strong emotions, managing family tasks or goals related to the child’s chronic illness, communicating more clearly and effectively within your family, within your community, within larger systems. And advocating for your child.
Negotiating issues but getting what you need as bottom line. And then involving your own child in management of their chronic illness at the level that you and the child can move towards. So, an example of some of the skills then that lead to self-efficacy. We really have tried to build in, you know, Bandura who is the guru of self-efficacy says, there are four ways in which you build efficacy in a person. And the first way is by an active attainment, getting the person to do something and then they feel good and they know they can do it and other things in the future. So we did retain the idea of action plans and the skill towards. At each session at the end of the time, we’re having families work through building an action plan for themselves for the next week. Getting that plan. What are you going to do? Small enough so that they could say their confidence in accomplishing that action plan was seven or higher on a 10 point scale. And that was the big part because, you know, an action plan may be for an adult, in Kate Lorig’s program might be, I’m going to walk three times a week, a mile. And some of our families did that in the beginning. We though that was fine.
However, they’d come back because the second part of this is then going through it the next section, problem solving. Did it work or did it not work? Well, what the families might say, well, I failed. Sort of down and we were down. Well, why did it fail? Well, because in order for me to go out and walk that mile for myself, I had to negotiate with my husband that he would be there. I had to find, you know, I had to get everything read so he could do the things I normally do with my child. And they were multi step action plans and families and we didn’t think about that in the beginning. So we slowly helped people hone those action plans down, so that indeed people could get this positive sense. They could really be successful. We also, although Kate Lorig’s program lets the parent pick anything, you know, your action plan might say I’m going to clean my closet. Parents came to tell us and we came to believe that we should have them direct an action plan on something they learned in that class and try to implement it across the week. So if we taught self-massage maybe a parent would say, “I’m going to do self-massage when I get angry three times this week.” And then they could come back and say if they were successful.
You know, the second one is modeling build self-efficacy. And we thought, we have co-facilitators of all of our sessions and the co-facilitators, one is a parent of a child with special needs, and the other is a healthcare provider. It can be a social worker, a nutritionist, a nurse, it’s the whole gamut. We thought we were going to all be the, you know, the modelers and actually what parents are telling us at the end of the sessions is what they’re really clueing in on the modeling are the other parents, that’s what makes the difference. Persuasion is the next most important. And, of course, the co-facilitators and the other parents are very good at helping to persuade the parent attendees that they can do it. You really can be successful. And then the last one is managing those unpleasant emotional responses that come when you try something new. And that’s why we built in some things like skills like self-massage, or the little red balloon where you blow up and you put all your negative emotions, blowing up into the red balloon, and then you let it go. And let it leave from you. And we practiced those skills. So those are specific ways in which we attempt. Parent involvement throughout this project. We began seven or eight years ago talking about this idea and at that point in time, we had a parent who we know was going to be our co-investigator, paid 60 percent, benefits, co-investigator, you know. She speaks up at the table, is there as many times as the rest of us, speaks up as much. Her role is to speak up for, not just herself and her own family but families in general.
I speak to the research. Nancy Villarreal, who’s our Title V person, really speaks to nursing. Tizzy Bennett, who is a health educator really speaks to curriculum issues, you know, is this logical flow, but Nancy Uden who is our co-investigator speaks to the family issues. And she could have lots to say. She’s actually writing with our research coordinator an article she presented last year in San Francisco. What is it like to be a co-investigator? What are the issues that raise over the years? You know, when you feel you’re becoming more of the team than you are a family representative. You know, how do you handle some of those things? But we had a co-investigator and I’m convinced that’s a big reason why our grant was funded at the level it was by AHRQ, because they wanted to see, how would this work? We included though then two parent advisors who were with us throughout the creation of the curriculum because it became clear both from Nancy and us that we needed a broader view. We needed more diversity. And we needed people who could, so that it wasn’t if Nancy raised an issue as a parent, it wasn’t her against us. You know, sometimes maybe her view was more her view than parents in general. So we included three so that if two parents felt one way and the other one felt differently, you know, there was a little buffering. But because it was the same with professionals, you know. If I felt one way but the three other professionals, nobody just acceded to me just because it was, me. And, Nancy didn’t want people to accede to her just because she was the sort of family representative.
We then went and took the curriculum once it was designed to a formal parent consultant group. Our hospital, the Children’s Hospital has a consultant group of about 135 families and we presented what we wanted, about 40 of them said they were interested. They met with us in focus groups a couple of times, reviewed the curriculum, truly made changes. They made changes like the age. They wanted it to go down. We originally had said we didn’t, we wanted to not include families where the child had been diagnosed less than a year because all the literature out there says, you know, parents aren’t, don’t sort of have management of the medical condition under their wraps until about a year after the diagnosis. Well, these families told us that’s a bunch of bunk, there are some families who move more quickly through that and how dare we suggest that they cannot self select on that item. We wanted to have only families of children who had this chronic illness, because remember? We thought those were the families that were, had the least services in our community. They told us that’s a bunch of bunk, too.
Most kids, many kids with chronic illnesses also have behavioral emotional components or they have developmental components and how are we ever going to sort that out in an intake procedure. So we did go forward with a, you know, they needed to have some kind of a physical manifestation, but they could have all of these others. And I will tell you three quarters of our participants have children who have mixed kinds of conditions. So it was great advice from them. Again, we then sought out parents in an initial pilot group and basically they looked, well, one of the other things that the consultant group did was responded to our outcome measures and particularly the quality of life measure that we ended up choosing as one that doesn’t have the greatest psychometric properties, designed in London but they told us the items on that measure were better and more important to them than the items on some of the other quality of life measures that we would have chosen for their psychometric properties. So listen to them on that, too. Parents in the pilot group gave us advice at the end of each and every session.
What worked, what didn’t work, was there anything insensitive about what we did? And again, we listened very well. We hired co-facilitators for each class. We interviewed just like we would have interviewed for the professionals who were the co-facilitators. Everybody ran through the first class then so that they could feel, how is it to take this class as a parent of a child with a chronic condition? As well as, how is it to co-facilitate this class. And they gave us feedback, too. And now, we’re in the midst of offering the sessions and at the end of each, and there’s the seven classes at the end we’re getting feedback from the parents at that point and the co-facilitators. What did you like? What didn’t you like? What’s the most important thing about the curriculum that you see? I said I was going to talk about shared management, because it is a curricular theme for us, and what is it? So, we certainly see it as the systematic plan shifting of responsibility of care for the chronic condition from child to parent. And we talk about the fact that it should mimic development in other areas and it has to be individualized to that parent and child wishes and to the child’s capabilities. And I think we increasingly are getting that and we may not have offered it when you see how we offered in the curriculum in visually the way we meant it and for parents of children who had regressive kinds that, children who were losing skills, this was very difficult for them.
Now, remember, they all were told when they called in. We did it differently. We had no trouble. We have a randomized clinical design and so families know that half of them will be randomized to the control, although at the end of the 12-month intervention, we are offering the class to all of the families. And the intake people were very worried about that. The families told us it wouldn’t be a problem. The intake people were very worried. Well, how will these families take this? No one, no one, had an issue with it. And that was in all of the advertisements so I guess the people who called knew it right up front.
BARBARA K. POPPER: Could I just, parents are really interested in being part of research if they think it’s going to help make a difference for other families. They’re very pleased to be part of it, we found that was part of what helped us in recruiting, too. They wanted there to be information out there about kids with special needs.
GAIL KIECKHEFER: Uh huh. Yeah. So again, shared management. You know, each family’s goal for the level of shared management is different and we’re gaining an increasing appreciation of that. It has to be based on their desire and comfort, on their usual parenting style, on the child’s unique capabilities whatever they are. So it doesn’t mean that a child who is severely developmentally delayed can’t move forward. One parent gained the perception in her own mind that where she wanted the child to move was from not giving strong cues of when the child was going to eat, to giving that. And she worked real hard on that. And they were able to move forward and she saw that as the biggest success that she had made in two years with her child. So she felt very successful in shared management. And, of course, then there’s also the issue cultural acceptability of when can children take on some control? We see it relating to health promotion because it’s truly anticipatory. It respects the family’s choice. It draws on the child’s developmental capabilities. Hopefully it empowers the child and parent and also it should, we’ve always thought it should lessen rather than increase perceived burdens. You know, it shouldn’t be one more thing that the family thinks that they have to do. But is seen as something that if we can move forward, this is a positive and a normalizing endeavor. That you really in other areas with other children in your life, you do want and expect them to move forward and this is a way of viewing that. That it provides them with a future perspective. Where am I now? Where do I think I can go and what concrete steps do I need to take to get there? And we’re hoping that long-term wise, for those children who truly can move great distances in terms of shared management, that it will actually increase their confidence and competence in later years when they’re adolescents or young adults in the management of their chronic condition. So how do we explicitly teach this?
First, we do things about laying the foundation and generating reflection. We help them refine their skills and we explore pragmatic behaviors they can implement and then we help them look towards the future. So I’ll go through each of these. First of all, in sort of that laying the foundation and generating reflection. We have a discussion of family focused flexibility, family life versus illness specific, and changing a leadership model. So we present them with this as a way of thinking in the first class, actually, really talking about that, you know, what most people want is for their normative individual family community life that they desire to be in the forefront most of the time. Whatever they choose it to be. And that the child’s specific medical condition, sort of in the background and that if you know how to manage that, that can be like that most of the time. Of course, with new treatments, hospitalizations, you know, things come up. These specific medical needs need to be able to be pulled up to the forefront rapidly by you as a parent, managed where these get showed to the back for a while, but that the hope is that then after this stabilizes you move back into this. And that a part of normative individual family and community life is where you should be as a family most of the time. We talk about the leadership model and you’ll notice we use explicitly business terminology because historically families have told us that’s what they want us to use. They didn’t want medical terminology. They wanted something that removed this from the medical jargon so that they could sort of stand back and think about it more objectively. So you notice on each of these that I run through, something is highlighted differently.
We talk about the fact that initially when the child is born and when a diagnosis is made or new treatments come, the parent is really the provider of care. The CEO and the child receives the care. But as the parent becomes more familiar and the child grows in capabilities, the parent becomes more of the manager. The child does some self-care. Ultimately as the child, older child, you know, is spending more time away from the home, the child becomes the manager of care and the parent is really the supervisor. And if the child has normative developmental capabilities what you expect is during later adolescence the child is the supervisor with the parent maintaining the consultative role and that ultimately as a young adult, the child, the adult should be the CEO and the parent remains the consultant. You know, you don’t step away ever. So we put this forth for parents to consider and reflect upon in the first session and we kind of just let it out there. Then the next curricular element of refining skills, we talk a good deal about finding your child’s capabilities and do some reflective work with what does your child do in terms of feeding? What does your child do in term of toileting? You know, through so that they can think. We do some work with child directed play and my thing is going out here, I think, so that they can then go home, this is about the third session, go home and if they haven’t explicitly tried child directed play, regardless of the age of their child, that they sit down and do that because it’s a great way to find developmental characteristics of where your child’s at. And they come back and talk about that. And then we talk about, pick something that you have to do routinely with your child and make a family or child plan for it. And most of the families love this. And it’s just showing one example of Gabe’s plan. Gabe had a medical condition that required that he have eye drops. It was a negative, negative experience day after day after day, four times a day for the family. And the parent, the mother, chose to do, no actually this was the father, chose to go home and really illicit the plan with Gabe about how he wanted this done.
Sort of the whole idea of this is to involve child on a very concrete action to learn that your kid has an idea about how they want some things to be done. That probably if you take their ideas, you can negotiate a way to have your needs and their needs met and to begin to see that you can share management in some way. So this was Gabe’s and probably the most striking thing for the family was, they thought that he thought it was painful to have the eye drops. And they didn’t realize he hated his sister being there, trying to distract him. She was trying to be helpful, you know. But he hated that. That was one of the most negative aspects. So that’s another way, refining their skills. Then we explore some specific pragmatic behaviors or we call it a table of parent actions that support that leadership transition. And I’m only, in the handout there’s only two little clips pulling it from that table. It’s a long table and it’s something we, you know, we have a parent handbook that they leave with and it’s something they can refer to later. And regardless of what the age of their child is, they can find themselves in that.
So this is a section about, you know, the child who is late school age who has developed mentally where his age would say, at the supervisor of care and the parent as consultant, and we’ve highlighted some very specific behaviors each the child should be able to do and the parent can do to enable the child to do those. But we have become increasingly sensitive that we need to help the parent of the child who has developmental issues as a part of their chronic condition see, okay, another child who is also in late school age, but maybe is at the developmental stage of just simply providing those simpler tasks, exactly what the child’s behaviors are, are different, and the parent action supports are different. But this is in the table, it’s just in the table for the kid who’s maybe younger, maybe a five year old child. But it’s to help the parent to see, don’t take any ages as the norm for anybody. Where your child is, is where your child is. And if you can move your child to the next step, that’s wonderful. But, that your child, hopefully can be doing, contributing something to the management of their own care. And then we provide to the families, and oh I did, you know, this handout. I didn’t because we’re still in the intervention part of the project, I didn’t want to include the entire table of pragmatic behaviors. And I included instead for your review and use a different table, a table that I’ve used for some other presentations, which does in some ways very similar although it has more explicit ages here, ages of children, developmental realities, common issues or questions, and pragmatic expectations. So feel free to use that but I included that rather than the other one because of where we’re at with the research.
Then I also included the transition timeline that we share with parents for the reflection and consideration. It’s an example of the timeline that the children’s, the Center for Children with Special Healthcare Needs has put out. I think it’s on their web, perhaps. And we talk about it as an example for them to consider and we encourage people to think about making their own family transition plan, with the idea that this will change over time as their reality of working with the condition changes. So what about the preliminary data from the Building on Family Strengths project? We recruit, our recruitment was much harder than what we thought it would be. I would say we have, everybody knows of us in the Seattle, King County, Pierce County area. We’ve probably got 200 healthcare providers with brochures in their offices. We’ve been in two magazines. We are on list serves, we, so recruitment was very slow and what we’re thinking is, it’s the seven week class. What providers are telling us, why did people say no? People said they wanted to do it but they couldn’t bring themselves to a seven-week class. What our parents, participants are saying, I almost didn’t signup because it was seven weeks.
Although at the seven weeks they’re saying to us, can’t we meet again? Can we keep this up? And some of them are keeping their own. We say, well, no we can’t keep it up with you, but if you’d like to keep it up you can. And so a number of them are. So when you look at what are we going to do differently next, one of it is that seven weeks, because we know there are people out there that we think could benefit from the class or that we’d like to at least research and see if they would benefit if it were in less than a seven-week session. We collected baseline data because we are a randomized clinical trial and our analysis will be based on intent to treat. So people call us, like I say, we have very few exclusion criteria because of the parents and actually that’s worked out fine. If they’re still interested after we discuss, what is in this class and if you think this will be useful to you, then signup. We have fathers. We have mothers. We have grandparents as long as they provide some care to the child. We have couples. We have neighbors. We have babysitters and family members. We collect the baseline data and then we randomize at that point. And again, the intervention group gets the treatment immediately and the control group gets the treatment a year later. We have no idea how many people in our control group are going to want it. We’re first coming up to our 12 months now, so we’ll first be asking people. So we’ve got the baseline. We have participant evaluation comments at the end of their session. It’s very structured in terms of the content, the processes and then overall, what was best for you, what didn’t work for you, and what would you change? We have six months. They repeat their surveys and at 12 months they’re repeating their surveys. And our general conceptual model is again, basically, again, it was based on Kate Lorig’s model, which is self-efficacy. So our conceptual model is, is the class, wherever the parent is, the class should enhance self-efficacy on the specific behaviors the class is directed towards. If they do that, we are proposing that emotional upset would go down, coping would go up, shared management behaviors would go up, and if those things indeed go up, then at 12 months it sort of should be self-sustaining. You know, we haven’t built in a, you know, a lot of projects build in a booster dose of a class and we worried about not doing that. I still worry about that sometimes. But we have believed that if you can sort of kick-start and give people something, they can self-sustain that and spiral up and up an up. That’s our goal. So that at 12 months we feel we should continue to have improvements in self-efficacy, reductions in emotional upset, increased coping, increased self-management, and improved quality of family life. We shall see. I just want to let you know about the people.
It’s interesting, I think, this is data from our first 92 participants. We currently have 134 and we have about 80 more that are sort of waiting, that are registered but haven’t had the classes yet. Remember these our parents of kids, two to eleven years of age. Their education ranges from 10 years of education to greater than 20 years. The most common is 16 years, so a college graduate. Twenty-two of that 92 and the next most common is high school graduate, 15 of them, but they run the gamut. And that’s pretty similar to what the Seattle educational marking is. Then we wanted to benchmark with our Washington State Children with Special Healthcare Needs population data as of November of ’06. And what we find is we have a group that is of high need. Severity in terms of breaking, the Building on Family Strengths, people are in the blue. So you can see that on the question of overall, how would you rank the severity of your child’s health condition, the participants in our group their children as being more severely ill than the general population of children with special healthcare needs in Washington. When we asked them about how often, so sort of this stability issue, how often does the condition affect their behavior? Again, with the blue bars as being the highest. We have kids who, parents of children who are affected almost all ways, at least, almost half of them. And again, so more commonly affected than our general population. And then good news, I guess, for Washington is, is this child covered by health insurance? In both instances, health insurance ratings are high. You know, 98 percent for those kids in the Building of Family Strengths. We sort of taking that as hopefully what we’re finding is that our families can move, you know, their insurance allows them to look at the medical conditions. Remember this is non-categorical approach, so we have families with all sorts of diagnosis. In one class you might have a child with severe asthma, with a child who has, is on dialysis, who’s in a class with a child who has gluten free issues and who has autism. And again, because remember, if they had a medical condition and they had other things, they could be in if the family wanted to do this. Okay, what about our baseline? We find a high need.
The measure, remember I said, our data safety monitoring plan was we assured the IRB we would look at depression scores, making sure our program was not making people more depressed or that we were tremendously improving the emotional status and needed to just stop and offer the program to everybody. We added two other scales at the encouragement of Kate Lorig and one is a health distress, and one is an activity limitation and that’s what I’m going to talk about right now. On this scale we have the CESD, you know, the depression scale on the bottom, and we have the number of participants for any number. And the higher your score on the CESD, 10, the worse, you know, the more depressive symptomatology you have. So the worse, your emotional status is. Ten or more is often in the literature considered, you know, indicator of possible depression, sort of depressive symptomatology. And 20 is often indicated, you know, to beat depression in terms of the diagnostic category. Over 53 percent of our participants have a score of 10 or more at baseline and 13 percent have score of greater than 20. I think that was surprising to us. This is much higher than Kate Lorig’s scores for adults with chronic conditions when they rate themselves.
On the distress, and the questions on distress, how often are you discouraged by your child’s problem, fearful about your child’s future health? Your child’s health is a worry in your life. You’re frustrated with your child’s health problems. Again, you know, we see nobody down here. Well, we see a few. But we see a large here and here. Scores of greater than two are really indicative of negative emotions more than half of the time. And more than half of our participants are in that situation. When we look at activity, social activity role limitation, during the past month, how much has your child’s health interfered with your social, recreational, household, and shopping activities. We actually don’t see such bad. You know, these people are pulling it together and not allowing their child’s chronic condition in many instances to impact these activities. So, positive. What about when we look at self-efficacy, because remember our whole project is based on enhancing self-efficacy in hopes of enhancing some other things.
Well, number one, we find out that some of these parents see themselves as quite efficacious before they came in. You know, maybe that’s why they could pull it together for a seven-session class? They were the people who said, I think I can do this and it’s worth my time, 14, 15, 20 hours of my time to take a class because I think I can use it. But we have some people with low scores and this is just the graph of the summative scores, that self-efficacy. And I put the breakdown on the sub scales. This is getting information. People feel pretty high, although this is big group of three. You know, some of the time I feel I can get information. They feel pretty high on communication. Maybe that’s why some of them didn’t like the communication content in the class. They already knew it. And then managing their child’s health, again, so, in some ways it’s getting information that these people felt the lowest on. Self, a shared management component was skewed again in the positive ranges, but there’s spread evident. And it was interesting that shared management, sub scale scores were highest for desire, they want to do this, and lowest for action.
So here’s the summative, almost a bell shaped curve in some ways. And then the three sub scales, the first on being desire, high. Current knowledge, sort of that bell shape in a way. And then actually actions kind of spread out with two, two high points. We’re not sure, therefore, analysis wise, what’s going to happen with those two measures, because they’re high. These people don’t have too much higher to go on our measurements, on those two constructs. The relationships though are very interesting I think. You know, the depressive symptomatology, health distress and activity limitation are all correlated at moderate but positive. You know, the more health distress, the more depressed. The more activity limitation, the more depressed and the more health distress over your child you have. Who knows causation wise? The shared management and the efficacy are all negatively related to those things. So the higher, you reported shared management with your child. The higher personal self-efficacy, the lower the depression, the distress, and the activity limitation. And then the shared management and self-efficacy are positively related to one another at a somewhat moderate range.
What about early results? And I almost hesitate to share some of this because what I’m reporting on is the first 30 people. So you know, when you have small numbers, the stability of your results are questionable. But it did want to share because we’re feeling very positive about this. On the depression scale, scores of the participants enrolled in the intervention, 15 or 16 depression scores went down. Whereas only 6 or 14 in the control group went down. In the distress, now in the distress of the activity limitations, almost everybody stayed the same. And you see a lot of movement in the other, on the depression scores in the intervention group. A lot went down in their scores. Most people in this, in the distress and in the activity limitations stayed the same. But six of 17 distressed scores for the intervention whereas only two of 13 went down in the controls. And impact, five of 17 went down in the intervention, whereas only one of 13 went down in the controls. So we are somewhat buoyed by maybe, we can’t wait and for the next 30 participants, which we should have in another two weeks, their data, because we’re hoping at that point, these results might actually show, even with these small numbers, statistical significance. Anecdotal comments.
The vast majority of the people who attended, did evaluations for us. And two or one, nobody said that they found the class unhelpful. No one found anything insensitive. Most people missed some classes and I think we weren’t expecting that, but I think, when you think about the lives of the family participants, of course, they’re going to miss some, I mean, they missed because a child got ill or something came up with their child. But they’re saying things like what did they like the best? I think we thought the content, but what they’re finding is the suggestions of other parents. So what did they say? I could finally share what I was really thinking with others because these were people like me. It gave me, but one parent said, but it was better than a support group because it gave me concrete strategies. There were so many good ideas shared. Helpful suggestions from those who had succeeded at things I am trying to do. One of the things we do is in the open discussions, we always start with, this is a problem, you know, let’s talk about this problem, generate, brain storm, have you had this problem? Now, what have people done to successfully manage this problem? We always end on a positive and then our co-facilitators type up those sheets and give them back to people at the next session so that they have this list for now, for later, you know, plant a seed that maybe one, six-months, one year, two years, three years, parents can go back to, to see. So that’s sort of where we’re at. What does this sort of tell us? We’re hoping, number one, parents will come to a session like this, although we’re missing a huge amount and we think it might be because of the seven sessions.
We have no idea what’s going to happen with that quality of life. Parents liked this, the content. Where are we going to go form here? We are, we like you, are starting to think about a competitive renewal, at which we want to think about how can we create a new problem that is shorter in duration, contains sort of the essence of the current product, but has some changes in process and content that we know we want to make. We want to reconsider our target population to maybe explicitly include children who just have behavior or developmental conditions. I think most of our kids had more than one condition, and so we think that’s the population. And as you’ve talked about, I think, maybe we should include a topic on health promotion. How to determine what you need and how to get it from your healthcare provider or somewhere in the community as a topic to be included. So I end with any particular questions to me and then we can have questions to both of us and just in general. Yeah.
UNKNOWN SPEAKER: I was wondering, you mentioning that there were cultural implications about (inaudible), but I didn’t really catch what they were.
GAIL KIECKHEFER: Well, we had, I think some of us have practiced in different areas. And so, we had had some feedback prior to even thinking about this. We talked with some Chinese families, some Tai families about the fact that it is my role as a parent to take on all of the management at age six, seven, eight. It isn’t until my child is 12 that I should be giving up anything to my child. And so, it would be inappropriate for you to be, I mean, you can suggest to me all you want, but I’m not going to start to make those steps until later on. We had in our consultant group, we had a great deal of diversity and then I guess I didn’t really say, we went out to some of the culturally specific groups in our community and took the curriculum and said, what’s insensitive here? Tell us, you know, tell us how to change it. And actually our group said their wasn’t anything that they felt in the content but in how people might choose to apply it. And we needed to be very, very careful about putting content out as this is for your consideration. If you choose to move on this, this is how you could do that. So does that answer at all some, again particularly I guess the most striking group to me was the Tai families that we talked with.
UNKNOWN SPEAKER: Yeah, it does answer it. I was thinking because you asked what, what areas that you were thinking about, what areas you could go next with cooperation with (inaudible). I don’t know. (Inaudible) feedback about it.
GAIL KIECKHEFER: Well, and we had a diversity of culture in our participants. And we, and you know, with 104 people, we would love to think that we could do some post talk analysis to find out for which families was this most useful? From a statistical sense, we’re not going to be able to do that. From perhaps a visual look at the data, we may have some implications for that. We need to do more in our community though. Although we have a wide diversity in cultures represented, we don’t probably have the percentage of our community in our city. Yeah.
UNKNOWN SPEAKER: I just have a couple of logistical questions. What time of day were these classes offered and how many people were (inaudible)?
GAIL KIECKHEFER: Yeah. We offered them, we offered them on evenings, you know, a session. When people called in we would say, we have a class that is starting at Children’s Hospital from six until eight on Tuesdays, can that work for you? No. Okay, we have a Saturday series of classes that are offered from eight until, no it wasn’t that, 10 until noon at such and such an office, at the library. Would that work for you? No. We have a daytime class. Our daytime classes, forget it. We had to cancel four classes of daytime. And we thought for sure there would be people who would want daytime classes, but we didn’t get that. We also, because of some legal issues, we were not able to offer on site childcare. We were also told, by our parent consultant group that most of them would choose to have money, that they already have their childcare and they’d rather have money to pay their childcare person. It would be easier to get that done in the home then to get the child up and ready and over. And we had advice from, not Kate, but someone at Packard Children’s had tried to do a revision of this at one time. And they found that having the children in the next room is extremely disruptive. People had to get up and go and check and so we offered stipends. We’re amazed at how few people want to take them. You know, no, no, no, no, I don’t need that. But we have it, we actually, a foundation when they heard about the project, put money and said, we want to put, we want to give you money and we said great. We will use this for family stipends because of what your foundation is about.
UNKNOWN SPEAKER: So did you have one parent or both parents?
GAIL KIECKHEFER: We could do either way.
UNKNOWN SPEAKER: I was just wondering if one parent was staying home with the children?
GAIL KIECKHEFER: Yeah. I think frequently that’s probably the case. At one point in the beginning we thought that the most frequent problem that people who were not coming to the whole thing, or when they came as a couple, because then if one couple didn’t want to come back, but that didn’t pan out as time went over. That was just like maybe in the third class.
BARBARA K. POPPER: We want to thank people.
GAIL KIECKHEFER: Yeah.
BARBARA K. POPPER: We’re running over time and we’ll probably have to move on, but we’ll stay and take other questions and thank you for your interest and you’ve got our website to know where to find us. I think both of these are up on the web as well. So thank you very much for coming.