conversations with parents and slps about early intervention metro speech-language symposium, 2012...

Conversations with Parents and SLPs about Early Intervention Metro Speech-Language Symposium, 2012 Kathleen Fahey University of Northern Colorado Katheryn Boada Childrens Hospital Colorado Shannon Robel Life Care Center - Greeley

Learning Outcomes Recall general trends in research about parent involvement in early intervention Describe the characteristics of a qualitative case study Consider themes from parents and SLPs regarding early intervention Discuss implications of the themes for working with parents and their children

Early Intervention Defined Early intervention is a broad term that refers to a wide variety of therapy activities intended specifically to enhance the development of young children who are at-risk for or are developmentally delayed or disabled (ASHA, 2008; Ramey & Ramey, 1998). Part C IDEA includes children birth to three who are developmentally delayed, disabled, or are at-risk for delay (American Speech-Language-Hearing Association [ASHA], 2008). Part B IDEA (three to five) also eligible for services in early intervention and preschool settings (ASHA, 2008).

Early Intervention Defined Infants and toddlers cannot be appropriately served in isolation from their families. Services are to be centered on families and children within the context of families' activities and routines (American Speech-Language-Hearing Association, 2008b, p. 2). Because communication growth relies on social interactions, early intervention often takes on play-based forms, occurs in natural environments, and utilizes natural communicatorsthe childs family members (American Speech-Language-Hearing Association, 2008a, p.3).

Early Intervention Defined IDEA, 2004 and NCLB 2001 stress the importance of family/school partnerships as a more meaningful method of educational intervention rather than a child-focused strategy alone (Knight & Wadsworth, 1999). We define early speech-language intervention to include children from birth to 5 years or prior to entrance into kindergarten.

What do we know about parents and early speech-language intervention? Only nine studies target parent perceptions in early speech-language intervention. Larger body of work regarding parent perceptions of a wide variety of services available to children ages birth to five and school-aged children. Themes in the literature: Participation, Access to Services, Information, Support, Finances, Time

Purpose of Study What Perceptions do Parents and SLPs have about Early Intervention for Children with Speech-Language Disorders? Our focus was to explore parent and child needs, barriers to parent involvement, and speech-language pathologists perspectives on working with families.

Qualitative Case Study A qualitative case study seeks to uncover meanings and represent the voices of the participants. Researchers use focus groups, interviews, and observations to explore topics related to the research question. Researchers use descriptive data to discover and interpret themes.

Qualitative Case Study Participants Multi-site: 5 RiteCare supported clinics in Colorado 15 caretakers (parents/grandparents) 7 SLPs who provide early speech-language intervention and 15 SLPs in a focus group at a conference Researchers Faculty Lead Investigator and C0-Investigator 2Graduate Students at UNC - Theses

Qualitative Case Study Methodology Individual interviews and focus groups Open-ended questions to promote dialogue and gain insight Researcher field notes and journals Analysis for identifying themes Using themes to create a collective perspective

Themes: SLP Roles & Factors Affecting Parent Participation The SLPs Role 1) Parent-SLP Relationships 2) Experts & Educators 3) Target/Maintain Functionality for Children & Parents 4) Resource 5) Refer, Recommend, Navigate

Themes: SLP Roles & Factors Affecting Parent Participation 6) Factors Impeding Parent Participation Timely and appropriate referral Access to information about who, when, where Availability of services Waiting lists for services Amount of effort to find and coordinate services Cost and inadequate insurance support Time for therapy and homework

#1 Parent-SLP Relationship Understanding and supporting feelings Reality of daily life and situations Special relationship between parent and SLP and the child and SLP SLPs remind parents of progress and developmental journey Its an intense, its an emotional bond and you feel like theyre the only other person that really gets it.

Parental Emotional Response We were struck by the emotive words from our parents! CryingSatisfaction with Progress Frustration Acceptance of Disability StressorsAlone ExhaustionHelpless OverwhelmedFear of Failure DrainedEmpathy PressuredDont be Complacent Burned-outAfraid Worried

Parent-SLP Relationship: Emotional Response - Parent Voices Expectations and concern present and future I dont try to set a lot of high goals for him. I dont know what his capacity is, so you protect yourself. To actually say, Yes, he has a disability just brought me to tears. It was devastating for me to speak it, because when you say it, it's your accepting it. That was very difficult because you want your kid to be normal. I dont care how perfect or how much I love him, it is still hard for me to realize what hes not going to have and not going to be. You feel alone and you worry about your son. When Sandra first told me verbal apraxia, I looked it up and I cried all afternoon and oh my gosh this is so bad.

Parent-SLP Relationship: Emotional Response - Parent Voices Anticipation of events Is he going to be able to talk? Ever? And she was like, I think so. I cant say. And thats super scary. I am ridiculously anxious about kindergarten. I really am, which is so funny that I am more nervous, hes ready to go, he cant wait, hes excited! Parents need to see progress. Sally would say, Hang in there. He's doing great, and she reminds me of all the things he was doing or shell show me his test, Look where he was and look where he is! Do you know what I mean? That constant feedback. Hes growing, hes still learning. Its slow, but hes still learning.

Parent-SLP Relationship - SLP Voices Information, reassurance, validation, support I think, especially the parents that I am working with right now, the majority need to know that their kids are okaythey just want to know what the kids abilities are going to be and what the limitations are. They need validation, support to help their child to learn the language skills that they havent learned. I feel parents need some information about the developmental process and some affirmation that what theyre doing is the kind of support the child needs, but it varies for every family.

Parent-SLP Relationship - SLP Voices Realistic expectations, strong communication, individualized And just understanding what progress can look like, so there is realistic expectation in mind for parents; to establish an open line of communication and a really healthy relationship with parents. I think early intervention can be really overwhelming for parents. Its just the amount of expectationand there is that care-giver burnout. I they need reassurance that their child is in the right place doing the right things and making progress. I think [they like] that someone is taking a very personal interest in their child and family and providing things for then to do at home with their child in mind, not just some sort of canned thing.

Parent-SLP Relationship - SLP Voices Sincere and supportive relationships I work with a lot of nonverbal severe needs kids and I think a lot of what they appreciate is that youre telling them theyre not crazy when [the child] is doing certain little things that are communicative, and youre validating that for them, and that the kid just doesnt exist, that there is really true intent here. When they hear a professional say it, it makes them feel like its worth it. I think they enjoy an adult that can talk back. I think thats a big deal and that you have to be very supportive and very careful of their - very fragile were all that way with our kids.

#2 SLPs as Experts and Educators SLP is expert on speech-language, but parent is expert on child --- two-way street Provide information that parents need to assist their child Take care to gauge the timing and amount of information SLPs set goals and identify areas of potential growth

SLPs as Experts and Educators Parent Voices Shared learning watching, reading, dialogue I like that I can watch through the window because then I actually do home-based therapy with Erin. So its nice that I can see what Lindsay is working on and the way she cues and just everything. The handouts gave us different ways to talk to him and to use different types of questions so we make an effort to do that throughout the day. We do conversation modeling in front of him.

SLPs as Experts and Educators Parent Voices One of the things I really like is I feel that even though I may not be in for that session, I still feel very involved in the process. I feel like I get lots of information, and I always talk with Katie afterwards and get feedback, and I know theyre very clear about what theyre working on and very, very, savvy in terms of giving me techniques and things to practice so I dont feel like Im out of the loop.

SLPs as Experts and Educators - Parent Voices I think speech therapists are different people because you guys notice things and hear things that I dont notice and I dont hear. I dont know if its cause Im a mother or what, but they catch things. I call speech therapists miracle workers. You tend to hold your children back, because theyre a blessing. You're not realizing, well, maybe they should be doing this. The therapists were able to teach us where Todd should be, what he was lacking, and what things we should expect him to do now and don't just kind of hold him and coddle him and protect him. So it was giving us a lot more direction and telling us where we needed to push Todd. I definitely don't think he would be anywhere close to where he is without their help.

#3 SLPs Maintain Functionality for Children and Families Considering the childs interest during session planning is a small investment that may result in a significant generalization return. Make suggestions for home practice fit in with daily routines. Create individualized therapy goals and activities, but keep the big picture in mind.

SLPs Maintain Functionality for Children and Families Parent Voices Intervention requires integration of family priorities Its kind of an eye-opener. Okay, he can do this. He should do this. He knows how to do this. What, as a parent, can you do to facilitate this? Because it doesn't stop. If it stops when you leave the building, then you are not gaining anything from it, and I think that is what I get from my therapist. My son has issues with food textures and so the therapist says, Hey, bring in whatever you want him to eat and well work on it here, so I feel like the therapists really works on a very personal level with you and its not just a cookie cutter therapy. They really make it what your child needs.

SLPs Maintain Functionality for Children and Families Parent Voices Fitting activities into daily events and routines We just messed around and we just played. He is very intelligent, so it was easy to create games on the spur of the moment wherever we were. Wed fit it in here and there. We didnt really have a schedule of were gonna go home and do this or that.

SLPs Maintain Functionality for Children and Families SLP Voices Providing parents with tools for successful carryover We get a lot of those social issues, you know. Well, I took him to the store and he threw a fit cause it was time to go. We dont know how to transition. Explaining to the parents how structure and routine and consistency are so important. I think they should be part of the planning. They need to be part of the whole process. We work with kids on specific goals that are developmentally appropriate, but maybe theres a bigger picture that the parents see that we dont see.

SLPs Maintain Functionality for Children and Families SLP Voices Listen to identify what families need now. The diagnostic was scheduled for 2 hours. I stayed and visited with mom and dad and played with the child [4- years-old] and we talked and they were probably there for four hours. And at the end, Dad said to me, All I want is to have a conversation with my son in the backyard as we play ball, but it took four hours and a lot of pain to get to that place.

#4 SLP as Resource SLPs Provide Out-of-Therapy Ideas and Homework SLPs Generate New Ideas Parents Want More Education and Resources from SLPs

SLP as Resource Parent Voices Develop the partnership and guide parents Obviously they have much more knowledge than we will ever have about speech and what needs to be done and where my child should be. Youre not just having therapy for a kid, youre having therapy for a parent. What do we need to do? This is where we want to go, this is what we want. What do we need? When we work at home, what I would like from Lindsay is to have lists of things that shes working on so I know what shes doing.

SLP as Resource Parent Voices Guidance They give us handouts of where to go to with some of the other therapies and what to do at home, so I think they really work hard at making a therapy program that is not just once a week. Its once a week here supported by everything you do at home that they help you achieve. I really have to watch more intently to make sure I get these skills. So it would be great if there was something to teach me, the mother, that I could continue.

SLP as Resource Parent Voices Create and maintain resources It would be nice to have some central place to list these resources because a lot of the resources I find is through word of mouth or sitting in the room and people say, Hes on his way to this, and I always go, Oh, whats that? Id like to be part of some type of group for speech parents because the most that Ive learned is from a friend of mine whose little boy has apraxia and asking her what have you seen work and what else should I try?

SLP as Resource Parent Voices Define the purpose of home activities what, why, how. You dont know things and theyre not always mentioned to you. The familiarity wasnt explained to me. It was just like, okay read this book again and work on the signs again, and Im like ugh. So I wanted to move on, thinking that that was the goal, not realizing that the familiarity in the repetition was the goal. I think that could have been better explained to me.

SLP as Resource SLP Voices Parents appreciate resources and accessibility to therapist. They like things in writing. They love it when you give them something that says this is what I think you should do, or this is a resource to look at. I think the Internet has made great strides in bringing parents together with blogs and stuff. After an evaluation I try to give them something in writing when they leave here, even though it is not a report. These are the things we thought were good. This is an area just one area that I would work on. I almost always give the parent my card, so that if they go home and have questions they can call me back. I think it is really important that parents know that they can contact us.

SLP as Resource SLP Voices Power of motivation We have backpacks and some families will bring those home. There is a book in there and usually a little toy and game and maybe a set of cards that go with it. So kiddos will check those out. And Ive heard parents use that as leverage all the time. If you dont do such-and-such you wont get a backpack today, so it is pretty motivating for them to pick it out and take it home and play with it. Parents want to know what to do. And they want stuff that is very specific and very concrete that they can be doing to feel like theyre being successful.

#5 SLPs Refer, Recommend, Navigate Advisor and entrance into systems of care Communication helping parent communicate within systems Overcoming obstacles

SLPs Refer, Recommend, Navigate Parent Voices Finding services What if we could kind of get him into a therapy that doesn't feel like therapy? And maybe he's going to be more willing to take that in, so, helping parents find the right places to go to help facilitate speech-language development or health, or help facilitate social development or whatever their needs may be. I think one of the most frustrating parts about the process is how I felt like I had to go find all the information. You feel like youre gonna miss something, that he should be involved in something else.

SLPs Refer, Recommend, Navigate Parent Voices Providing rationales for recommendations Originally I didnt want a small group. I wanted it one-on-one but they really were able to educate me and say, you know, Give it a try and made me feel comfortable with being able to say, you know, this really is very beneficial for him. Helping providers and parents access information Access to information. I dont know whether it comes through the pediatrician, day care providers, where we would find it. It definitely was word of mouth or calling or finding or talking to someone. When we did get the call from the district, it was like, Can you do Friday mornings? So if you cant fit in those slots, I guess you would just not have it or get it somewhere else.

SLPs Refer, Recommend, Navigate Parent Voices Listening, validating, and acting on parent input The barrier we are feeling right now is our input at school, what works best for Samuel. They dont really seem to listen. Like with integrating him into regular education or rewarding him for misbehaving. Were his parents. We know what works best for him. Child Find did not fit with us. But we were able to find Sally and it did fit. So its navigating the system and figuring out what services are right for you, your family, your situati0n.

SLPs Refer, Recommend, Navigate SLP Voices Point of access to services I consider us to be navigators. Somebody to help because a lot of kids arent in tidy little speech and language boxes. And thats why collaboration with OT, PT, psychology, and medicalwill help you figure out where youre going next. Being an assessor it starts them on the road, whether its infant services, or if its toddler services, preschool services. Were meeting the needs to determine eligibility and that starts the process. Its the entryway.

SLPs Refer, Recommend, Navigate SLP Voices Setting the tone So I see parents a lot and you know the path is going to be long in terms of having needs and communication for quite a while. Its kind of like were setting a tone for what the district will be providing them. Setting that path, being the first interface to set a good tone for this relationship that will be long-standing with district. From my perspective, maybe more uniformity. I am getting the impression that models vary depending on how each district interprets what the processes are, so I think parents have a very difficult time navigating these processes.

SLPs Refer, Recommend, Navigate SLP Voices Tri role educate, advocate, empower Sometimes I see the line kind of blur between being an educator and being an advocate for parents. If theyre not familiar with the educational system or how to navigate the medical system, then we can educate them but at the same also advocate for how they can really use and understand the system to get the best possible education and medical services for their child.

#6 Factors Impeding Parent Participation Impeding factors Timely and appropriate referral Access to information about who, when, where Availability of services Waiting lists for services Amount of effort to find and coordinate services Cost and inadequate insurance support Time for therapy and homework

Factors Affecting Parent Participation Parent Voices Mismatches concern/referral; families/systems It took until he was two years and four months before we got a referral to [the agency]. And that was because I was so frustrated with him not being able to say anything. [The pediatrician said] Oh, you know, its a developmental thing. Hell get there. Its been very frustrating not being able to move on when I know theres something not right, you know. And I can see it, its just like nobody believing you and finally people believe you. Oh I see what you mean. So then what does a parent do if you dont know what the next step is? Its not like theres a manual out there going, Okay, heres whats out there available for you.

Factors Affecting Parent Participation Parent Voices Mismatches and Advocacy But I think that it has to be frustrating for a lot of parents because were talking about early intervention and if you have to wait six months, six months isnt a big deal when youre nine or ten. But when youre four or five, thats a huge amount of time that you could be helped and developed in better ways. And youre not able to do that because you just have to sit and wait. I think it really took an effort on your part because when we didnt do anything, nothing happened. But when we started calling more frequently, it seemed to move a little quicker.

Factors Affecting Parent Participation Family resources Money and Time I think really awesome insurance would be helpful or a lot of money, because I would be giving him even more therapy if I could. Weve changed insurances several times so then, oh, its a pre-existing condition, or you get three visits, it just doesnt cut it. I kind of wish I had more time to practice more of it. But its hard having five, you know, ideally Id like to practice every single day theyre not [in therapy], 15 minutes or so with each of the kids, but thats really hard to do.

Factors Affecting Parent Participation Parent Voices Family resources - Schedules You almost want a coordinator to come on board. Ill hire you and we can sit down and map through these cause youre trying to navigate your own schedule and the schedules of your other children and then, make sure they get to therapies, and its overwhelming.

Summary and Implications Parents have much to tell us about their needs and their childrens needs. Take time to listen! Parents want to be involved in early intervention. They look to SLPs to provide: emotional support for themselves and supportive environment for their child, guidance in navigating and accessing all services, information about disorders and interventions, direction in working with their child on goals

Summary and Implications Converse with families to understand how much information they desire recognizing that this need changes over time. Use rounding from the grand rounds concept, talk with parents about their experience and their needs. How is it going? What else do you need? Is there anything else that I can help you with? Use half-sheets with bullets that can be agreed upon: What will work and how/when will it work for you? Expect and acknowledge parent emotionality. These parents warrant sensitivity. SLPs need information and practice in how to respond to these situations.

Summary and Implications Deliberately ask parents, through conversation, how they perceive your roles. This will indicate to a parent that you value family input and desire to make his or her practice family-centered. Repeat this dialogue throughout the intervention process because family perceptions, needs and questions can change over the course of their childs developmental journey. Help the family identify factors that impede their participation in intervention. Work with them to change as many factors as possible.

Action Plan How will you implement the ideas into your practice? Use the note page to record salient thoughts, ah-ha moments, implementation ideas for your parents and their children. Use the action plan to write one to two specific objectives for your work in the next 6 months.

Your Questions & Comments THANK YOU FOR LISTENING AND INTERACTING WITH US!

conversations with parents and slps about early intervention metro speech-language symposium, 2012...

Documents

speechlanguage disorders

children birth

time slide

parent perceptions

children ages birth

parent involvement

schoolaged children

development of young