Conversations with Parents and SLPs about Early Intervention

Conversations with Parents and SLPs about Early InterventionMetro Speech-Language Symposium, 2012

Kathleen Fahey University of Northern ColoradoKatheryn BoadaChildrens Hospital ColoradoShannon RobelLife Care Center - GreeleyLearning OutcomesRecall general trends in research about parent involvement in early interventionDescribe the characteristics of a qualitative case studyConsider themes from parents and SLPs regarding early interventionDiscuss implications of the themes for working with parents and their childrenEarly Intervention DefinedEarly 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 DefinedInfants 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 DefinedIDEA, 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 StudyWhat 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 StudyA 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 StudyParticipantsMulti-site: 5 RiteCare supported clinics in Colorado15 caretakers (parents/grandparents)7 SLPs who provide early speech-language intervention and 15 SLPs in a focus group at a conferenceResearchersFaculty Lead Investigator and C0-Investigator2Graduate Students at UNC - Theses

Focus of our study Early intervention and clinic-based. Think about how to apply the info to your settings and families.9Qualitative Case StudyMethodologyIndividual interviews and focus groupsOpen-ended questions to promote dialogue and gain insightResearcher field notes and journalsAnalysis for identifying themesUsing themes to create a collective perspective

Themes: SLP Roles & Factors Affecting Parent ParticipationThe SLPs Role1) Parent-SLP Relationships2) Experts & Educators3) Target/Maintain Functionality for Children & Parents4) Resource5) Refer, Recommend, Navigate

Themes: SLP Roles & Factors Affecting Parent Participation 6) Factors Impeding Parent ParticipationTimely and appropriate referralAccess to information about who, when, whereAvailability of servicesWaiting lists for servicesAmount of effort to find and coordinate servicesCost and inadequate insurance supportTime for therapy and homework

#1 Parent-SLP RelationshipUnderstanding and supporting feelingsReality of daily life and situationsSpecial relationship between parent and SLPand the child and SLPSLPs 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 ResponseWe were struck by the emotive words from our parents!CryingSatisfaction with ProgressFrustration Acceptance of DisabilityStressorsAloneExhaustionHelplessOverwhelmedFear of FailureDrainedEmpathyPressuredDont be ComplacentBurned-outAfraidWorriedParent-SLP Relationship: Emotional Response - Parent VoicesExpectations 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 VoicesAnticipation of eventsIs 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. We see progress in very small increments, but parents need it pointed out. There initial expectations about what and how progress occurs may not be realistic, so we need to guide them.16Parent-SLP Relationship - SLP VoicesInformation, reassurance, validation, supportI 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.

17Parent-SLP Relationship - SLP VoicesRealistic 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 VoicesSincere and supportive relationshipsI 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 EducatorsSLP is expert on speech-language, but parent is expert on child --- two-way streetProvide information that parents need to assist their child Take care to gauge the timing and amount of informationSLPs set goals and identify areas of potential growthSLPs as Experts and Educators Parent VoicesShared learning watching, reading, dialogueI 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.Parents want to learn. Our role is to find out what works well for each parent.21SLPs as Experts and Educators Parent VoicesOne 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 VoicesI 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 FamiliesConsidering 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 VoicesIntervention 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 VoicesFitting 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 VoicesProviding 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 VoicesListen 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. We all have constraints on time, but look to find what immediate goals are relevant for the parent.28#4 SLP as ResourceSLPs Provide Out-of-Therapy Ideas and HomeworkSLPs Generate New IdeasParents Want More Education and Resources from SLPs

SLP as Resource Parent VoicesDevelop the partnership and guide parentsObviously 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 VoicesGuidanceThey 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 VoicesCreate and maintain resourcesIt 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?Compile list of resources for parents. Connect parents with each other in support and educational activities.32SLP as Resource Parent VoicesDefine 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 VoicesParents 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 VoicesPower of motivationWe 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 careCommunication helping parent communicate within systemsOvercoming obstacles

36SLPs Refer, Recommend, Navigate Parent VoicesFinding servicesWhat 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 VoicesProviding rationales for recommendationsOriginally 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 informationAccess 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 VoicesListening, validating, and acting on parent inputThe 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 VoicesPoint 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.

Talk, walk, eat.40SLPs Refer, Recommend, Navigate SLP VoicesSetting the toneSo 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.Entre into the system should be positive and smooth. Local processes should be clear and uniform, but at least we can help parents with systems in our local areas.41SLPs Refer, Recommend, Navigate SLP VoicesTri 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 ParticipationImpeding factorsTimely and appropriate referralAccess to information about who, when, whereAvailability of servicesWaiting lists for servicesAmount of effort to find and coordinate servicesCost and inadequate insurance supportTime for therapy and homework

Factors Affecting Parent Participation Parent VoicesMismatches concern/referral; families/systemsIt 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 VoicesMismatches 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 ParticipationFamily resources Money and TimeI 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 VoicesFamily resources - SchedulesYou 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 ImplicationsParents 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 ImplicationsConverse 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 ImplicationsDeliberately 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 PlanHow 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 & CommentsTHANK YOU FOR LISTENING AND INTERACTING WITH US!