What special needs or challenges were discussed in the article you read?  What aspects of development (physical, cognit

Disability and Health Journal 9 (2016) 692e704

Research Paper

How physicians support children with disabilities and their families: Roles, responsibilities and collaborative partnerships

Mary E. Sheppard, Ed.D.*, and Nancy Vitalone-Raccaro, Ph.D. Department of Interdisciplinary and Inclusive Education, Rowan University, USA

www.disabilityandhealthjnl.com

Abstract

Background: The American Association of Pediatricians (AAP), in collaboration with the Council for Children with Disabilities and the Council on School Health, recommends that physicians learn special education law and practices in order to increase their ability to work with schools to support children with disabilities and their families. However, there is limited research that examines how doctors perceive their role as collaborators with families and school personnel.

Objective: The purpose of this study was to explore the perceptions and collaborative experiences of doctors treating children with disabilities in order to develop an initial understanding of how doctors collaborate within the doctor/family/school triad.

Method: Semi-structured interviews with doctors (n 5 13) from two states in the North Eastern United States were collected and analyzed using grounded theory methodology. Doctor specialty areas included general pediatrics, developmental pediatrics, rehabilitation pediatrics, and neurology.

Results: Analysis of the data revealed four key categories: (a) what doctors do with regard to children with disabilities and schools, (b) elements that interfere with doctor/family/school collaboration, (c) what doctors know and understand about topics related to special education, and (d) how doctors learned about topics related to special education. Doctors disclosed they learned about these topics through mentorship and on-the job training, not formally during medical school or residency.

Conclusions: This research presents powerful evidence in support of a paradigm shift with regard to infusing a focus on doctor/family/ school collaboration for children with disabilities into the medical school curriculum. � 2016 Elsevier Inc. All rights reserved.

Keywords: Grounded theory; Qualitative interviews; Doctor/school/family collaboration; Doctor knowledge of special education

Recently in the field of pediatric medicine, there have been calls for increased support of children with disabilities and their families.1,2 The American Association of Pediat- rics (AAP) in collaboration with the Council for Children with Disabilities and the Council on School Health recom- mends that physicians learn special education law and prac- tices in order to refer children who may need services and advise parents.2 Additional recommendations to improve service include working collaboratively with other medical professionals1,3 and school and community personnel.2

However, there is limited research that examines what doc- tors currently do in their role as collaborators with families and schools, nor is there research that addresses how they perceive the collaboration. The goal of this study was to

These data were presented as preliminary findings at the TASH 2013

National Conference.

This research was not funded and there are no conflicts of interest to

report.

* Corresponding author. Department of Interdisciplinary and Inclusive

Education, Rowan University, 301 Mullica Hill Rd., Glassboro, NJ, USA.

E-mail address: [email protected] (M.E. Sheppard).

1936-6574/$ – see front matter � 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2016.05.007

better understand the collaboration between physicians and schools from the perspective of doctors. The authors interviewed 13 physicians in the Eastern United States to determine answers to the following research questions. How do doctors perceive their role as collaborators within the doctor/family/school triad and how do they carry out that role?

Special education law and practice

In order for physicians to advise parents about special education referral, testing, and possibly services, they must have an understanding of the guiding laws and accepted practices in the field. Children with disabilities are protected under two Federal Laws, the Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act of 1973. IDEA was established to ensure that students from ages birth to 21 identified with disabilities are provided with a free appropriate pub- lic education (FAPE) in the least restrictive environment (LRE) that ‘‘emphasizes special education and related

693M.E. Sheppard and N. Vitalone-Raccaro / Disability and Health Journal 9 (2016) 692e704

services designed to meet their unique needs and prepare them for further education, employment, and independent living.’’4 IDEA also includes a provision for Early Inter- vention (EI) services for children from birth to 3 years of age. Furthermore, each child classified with a disability that negatively impacts his or her academic progress must have an individualized education program (IEP), a written education plan that the school district and parents develop. This program is reviewed and revised, at a min- imum, annually. Section 504 of the Rehabilitation Act of 1973 is a civil rights law that ensures access to the school curriculum and prohibits discriminating against a child due to his or her disability by providing the necessary accommodations. The document for ensuring access to the school curriculum for students with disabilities is known as a 504 Plan.5

The role of the physician

Within his or her role as health care provider for children with disabilities, the physician’s duties are multifaceted and complex. Physicians are often the first to recognize, or hear parents’ concerns about, developmental delays and disabil- ities in young children.6,7 Physicians refer these children for additional medical testing and school evaluations and then, if a diagnosis is made, help families understand the implications.6e8 In addition, many prescribe medicine for children with disabilities and need to monitor the effects through parent and school reports.9

Communication Pediatricians may be the first person outside the family

with whom parents discuss concerns about development.6,7

In a study of parent satisfaction with physician communica- tion, Street10 found that parents highly valued physicians who provided information in the form of ‘‘explanation, instruction, description and advice’’ (p.1151). Worcester, Nesman, Raffaele, Mendez, and Keeler11 found that parents of young children with challenging behavior reported it was important for physicians to be responsive to parental con- cerns and provide accurate information about the child’s needs.

Treatment Physicians conduct both well and sick child medical

care from birth until 18 years of age. Pediatricians are often responsible for making referrals to Early Intervention (EI) for children from birth to 3 years of age. Once children are identified as having a disability, physicians are frequently called on to write prescriptions for medication intended to improve school performance9 and for physical therapy,12 and to advocate for adapted physical education programs.

3

Collaboration Collaboration is characterized by partners sharing

decision-making responsibilities. The positive effects of parent/doctor collaboration have been demonstrated in several studies6,13 and include improved parental satisfac- tion with services, fewer missed school days, less emer- gency care needed, and less financial strain on families.3

Although numerous researchers have called for greater communication and collaboration between doctors and school personnel, very few have provided either evidence of this occurring or guidelines for the roles and responsibil- ities of the team members.3,12,14 The studies that have examined family/school/physician collaboration are focused primarily on the treatment of children with chronic health care needs, such as asthma14 and mental health needs.15 In these studies, the collaboration is characterized by frequent communication and updates regarding current treatment and medication.14,15

Barriers to effective practice

Researchers have found that there were gaps in pediatri- cians’ knowledge of special education practices16 as well as working with individuals with intellectual disabilities17 and those with physical disabilities.12,18 These gaps were also evident in studies that examined Early Intervention (EI) referral.19,20 The authors of those studies recommended that pediatricians become more familiar with the referral process in order to better guide families and to ensure that children receive needed therapeutic services as early as possible. Michaud and the Committee on Children with Disabilities12 stated that when physicians are called on to write prescriptions for physical therapy, the requests are complicated by the fact that ‘‘many physicians have limited formal education about these formal interventions’’ (p.1836).

Although some studies have been conducted to examine what doctors know about special education and how prepared they feel to advise families of children with dis- abilities,16,18 little to no qualitative research has been con- ducted to gain a deeper understanding of how doctors gained and utilized the knowledge they have about special education practices. In order to address these gaps in the research, this study was designed to determine how doctors perceive their role as collaborators with families of children with disabilities and schools and how doctors collaborate within the doctor/family/school triad.

Methods

Study design

The study was designed using the constant comparative method as described in grounded theory methodology.21

This method is a way to develop an explanatory theory of

694 M.E. Sheppard and N. Vitalone-Raccaro / Disability and Health Journal 9 (2016) 692e704

basic social processes, studied in the environments in which they take place.22 In consideration of the void in the extant literature regarding doctor/family/school collaboration, the authors sought a method of analysis that would assist in developing an initial understanding of how doctors perceive their role as collaborators with families of children with disabilities and schools and how doctors collaborate within the doctor/family/school triad. Grounded theory is an appropriate method for researchers who seek to develop a theory through which to design clinical interventions.23

Following Institutional Review Board approval, semi- structured interviews were conducted with physicians who worked with children who have disabilities and their families. To begin, purposive sampling was used to define the study population in order to produce a sample consid- ered to be representative of the population.24 Once the sampling frame was created, theoretical sampling was employed to select participants according to their ability to advance theory development.25 Theoretical sampling continued until a theoretical framework representing key processes of doctor/family/school collaboration was conceptually saturated.26 Qualitative findings were shared with participants for feedback in order to increase the trust- worthiness of the study results.27

Participants

Eligibility requirements included full licensure as a physician and experience working with children who have disabilities and their families. Specific criteria for inclusion in the study were used to increase participant credibility.28

Participants were contacted via an e-mail and/or telephone request for participation. Thirteen physicians from two states in the North Eastern United States participated in the study. This sample size is similar to those used in other grounded theory studies.

28e30 Characteristics of the partic-

ipants are outlined in Table 1. The participants were physi- cians (10 male, 3 female), whose years in practice ranged from 2 to over 25 years. They practiced medicine in a variety of locations (suburban, urban, and rural), and set- tings including hospitals (n 5 5), clinics (n 5 2), and

Table 1

Participant demographics

Physician Gender Specialty Lo

1 Male Rehab pediatrics Ur

2 Male Neurology Ur

3 Male General pediatrics Ur

4 Male Developmental pediatrics Su

5 Male General pediatrics Su

6 Female Developmental pediatrics Ur

7 Male Developmental pediatrics Su

8 Male General pediatrics Su

9 Male Developmental pediatrics Ru

10 Male Developmental pediatrics Su

11 Male Developmental pediatrics Su

12 Female General pediatrics Su

13 Female General pediatrics Su

private practices (n 5 6). Areas of medical specialty included developmental pediatrics (n 5 6), primary care (n 5 5), neurology (n 5 1), and rehabilitation (n 5 1).

Data collection

Doctor interviews, which ranged in length from 60 to 90 min, took place in each physician’s office. All interviews were conducted by the first author in order to maintain con- sistency. The interviews followed a semi-structured format, with physicians being asked a series of open-ended ques- tions related to working with children who have disabilities and their parents, experiences interacting with these pa- tients’ schools, and special education in general. The inter- view style consisted of primary and follow-up questions designed to answer the research questions using open- ended, exploratory strategies, a process that facilitated adjustments to both the primary and follow-up questions in order to follow emergent leads as data were collected. In order to frame the questions, develop the interview guide, and structure the initial levels of the coding scheme, a priori orientation31 was used and combined with a logical deductive approach.32 The idea behind this is that clarifying the hypotheses one already holds will free up the researcher to view these ideas more holistically within the context of the data so that the application of a grounded theory approach allows the discovery of other categories and con- cepts in the data.33

Data analysis

Grounded theory methods were used to systematically analyze the physicians’ personal accounts of their experi- ences treating children who have disabilities, working with these patients’ parents, navigating the special education system, and collaborating with schools.

34e36 Interviews

were recorded and transcribed verbatim. HyperRESEARCH (www.researchware.com) was used for coding and to manage data. Both authors independently coded the first doc- tor interview transcript line-by-line as a heuristic device for learning about the data.37 While reading, each author

cation of practice Setting Years in practice

ban Hospital 0e10 ban Hospital 10e25

ban Hospital 0e10

burban Clinic 25þ burban Private practice 10e25 ban Hospital 10e25

burban Private practice 25þ burban Private practice 25þ ral Clinic 0e10 burban Private practice 25þ burban Hospital 25þ burban Private practice 10e20

burban Private practice 10e20

695M.E. Sheppard and N. Vitalone-Raccaro / Disability and Health Journal 9 (2016) 692e704

assigned codes in the form of a descriptive word or phrase to significant ideas in the physicians’ comments (e.g., aware- ness/knowledge of specific schools and what they offer). Af- ter comparing and discussing the codes, codes were defined and grouped into distinct categories. The authors then created a descriptive statement (e.g., what doctors do) to ex- press the theme that seemed to underlie each category and the doctors’ comments related to that category. Next, each author independently coded the second doctor interview transcript applying the initial coding system. Results were compared and coding problems were discussed when there were dis- crepancies and confusion. Differences were reconciled through discussion. Memo writing enabled the researchers to ask analytic questions about the data and coding scheme while creating transparency in the decision-making process. Eventually, a coding scheme was developed based upon code families utilizing primary and secondary codes.

38 Not only

did the authors code the data for concepts but also to identify relationships between concepts/categories to build substan- tive theory.39 The final coding scheme included four code families with 20 primary and 9 secondary codes. The third doctor interview transcript was coded independently by each author and intercoder reliability was evaluated.38 A 92% in- tercoder reliability was achieved across all code families. The level of knowledge that each author brought to the text during coding may have been responsible for the fact that in- tercoder reliability was relatively high. Both authors coded each doctor interview transcript and applied the constant

Fig. 1. Code families and secondary codes. Each code family is represented as a

adjacent to the circle.

comparative method 36 to compare newly collected data with

codes that emerged from previously collected data.

Results

The authors identified four primary themes that com- prised the code families: (1) doing, (2) barriers, (3) knowing and understanding, and (4) learning. Three code families, barriers, knowing and understanding, and learning had several primary codes each, while the code family of doing had both primary and secondary codes (see Fig. 1).

Theme 1. Doing

Doctors were initially asked to describe what they communicated and how they communicated with parents of their patients with disabilities about the disability itself as well as educational and therapeutic options (Table 2). Follow up questions probed how doctors communicated with school personnel. What emerged were descriptions of common practices when working with families and schools.

Diagnose Diagnosing disability was routine for many doctors,

especially the developmental pediatricians and the neurolo- gist. Doctors were acutely aware of the fact that families

section of the circle. Each secondary code is represented in the rectangle

Table 2

Representative quotations from doctors for Theme 1: Doing e what doctors do with regard to children with disabilities and schools

1.1 Diagnose 1.1.1 They’re coming to me as a neurologist to identify a diagnosis, to create a diagnosis, to create a treatment or management strategy, and then most importantly, to follow that through and see that it’s getting to where they need to go. (PN) 1.1.2 I’m also expected to identify by label, if you will, things. (DP) 1.1.3 They [schools] can’t make the diagnosis, and they’re not able to classify the kid or to give them services without it, but it’s not as if I’m telling them something they don’t know very often, it’s just that they need a medical word on paper with my name on it kind of thing, or to rule it out. (GP)

1.2 Treat 1.2a Well Visits

1.2a.1 . we function as sort of home base. Otherwise, you know make sure the child’s basic health care is being taken care of, i.e., like immunizations for instance would be the major thing in the first couple of years of life, making sure their growth is coming along, or kept them from a nutritional point of view. (GP) 1.2a.2 The follow up if it’s just to see how they’re doing then we just sort of review what’s going on, see what they look like now, see how they’re doing academically . 1.2a.3 . and then they’re mine like any other patient.(DP)

1.2b Medication 1.2b.1 So, we’ll do a lot of straight forward ADD and ADHD, the pharmacology for that. (GP) 1.2b.2 I mean, for some kids, straight forward ADHD, you’re prescribing meds based on the teacher’s feedback on his ADHD symptoms. That’s easy. That’s straight forward. (GP) 1.2b.3 I try to not have parents involved with teachers and medications. It’s not their role any more than it’s my role to tell them what curriculum to teach and their role is to tell us is he behaving and is he learning, you know how does he behave in school and how does he learn. That gives the parents and me the feedback to know is the medicine enough, too much, not enough . (DP)

1.3 Refer 1.3a To early intervention

1.3a.1 In the 0e3 population, the primary referral is going to be for Early Intervention resources. (DP) 1.3a.2 Here’s what it is. If it’s a concern about speech delay or what not, the standard workup is get a (–?) pass, get an Early Intervention evaluation, because frankly they’re the ones who do it the best. (GP) 1.3a.3 I will refer them to their local . either health department if it’s birth to three and . you know, ‘‘Your early intervention is run through the health department and here’s the number.’’ (DP)

1.3b To other medical specialists 1.3b.1 I, because I work at a children’s rehabilitation hospital, there are certain resources that we have readily available. If I need a neurologist, I can get a neurologist. If I need a physical medicine rehabilitation doctor, I can get that. If I need speech, OT, PT, neuropsychological testing, psychometric testing, learning assessment, those I can get done on our premises. (DP) 13b.2 Second, would be referral for outpatient therapeutic evaluations based on the child’s presentation. Third, would be the diagnostic testingd medical diagnostic testingdbased on the way the child presents. So that could imply some type of an imaging study. It could imply blood testing. That could imply some type of neurocognitive testing if necessary. (DP) 1.3b.3 And what I mean by that is that they will be referred to a psychologist . (GP) 1.3b.4 Then I come into the two and a half year visit and he’s clapping his hands and running around not looking at anything and then I’m like ‘‘Okay, yeah. We need to talk more about this and have him see a developmental pediatrician . ’’ (GP)

1.3c. For school evaluation 1.3c.1 There was some delay and was recommending to the mom to get the child evaluated by the child study team at the local school board so they could be considered for preschool special needs program . (DP) 1.3c.2 In the 3e5 population, that’s where we’re starting to get the school district involved. Three-year-olds, that’s when we’re referring for assessments for child study teams, for preschool disabled services. Same thing when the child turns five, we’re referring to the school-age child study teams, up to age twenty-one. (DP) 1.3c.3 I recommend that they go through the school, because the school is where this is supposed to be manageddfor the most part. (PN)

1.4 Recommend 1.4a Verbal

1.4a.1 . try to encourage people to get the school involved as early as possible, so, one, you can document a paper trail and you’re not reinventing the wheel from year to year to yeardso that you get the appropriate services.(GP) 1.4a.2 You need to work with a tutor. You need to work with the school. You need to work with a specialized program. And then sometimes I’ll make specific recommendations, maybe to go see this person, but usually I recommend that they go through the school, because the school is where this is supposed to be manageddfor the most part. (PN) 1.4a.3 And I’m probably not as great an educator for the parents as I could be or should be, but I say, speech therapy needs to be addressed; reading skills need to be addressed; whatever it is, this needs to be addressed. And I don’t take it any further, roll out specific programs or specific details. I rely on the school to then say, ‘OK, we see the same thing and we’re going to do it.’ (PN)

1.4b Written 1.4b.1 However, if I need imaging studies done, we don’t do that. If I need an EG done, we don’t do that. If I need blood testing done, we don’t do that. We don’t have labs that do that for us. We give a patient a prescription and they go and find whatever is available to them. (DP) 1.4b.2 Generally, it’s us writing a recommendation. (DP) 1.4b.3 We’re more than likely to end up writing letters. (GP)

1.5 Collaborate 1.5a With other medical personnel

1.5a.1 Meaning, in our Down Syndrome program, we have a team of OT/PT, sometimes speech, that are all working together. And that’s really their goal to. To make sure that the right service is getting done and then also to make sure that the strategy is appropriate. (DP) 1.5a.2 I said ‘‘Let me just talk to them and see what we can do about getting him more comprehensive developmental evaluation.’’ (GP) 1.5a.3 I have to have unfettered permission to have two way communication with the primary care pediatrician . (DP)

1.5b With schools 1.5b.1 Especially neurology but I think all of health care should and it’s so much better if you reach out to the school and work with them, and get them engaged. (PN)

(Continued)

696 M.E. Sheppard and N. Vitalone-Raccaro / Disability and Health Journal 9 (2016) 692e704

Table 2

Continued

1.5b.2 But I get much more out of it talking like real people do on the phone about what’s going on in the classroom or what they’re seeing or their

interpretation of that he really is a lot smarter than his tests are showing or whatever they’re seeing. (DP) 1.5b.3 They (teachers) are overjoyed (to speak to him). The people in the trenches fall out of their chairs when I call ..The overwhelming amount of time, they’re just tickled to be asked. (DP)

1.6 Read reports 1.6.1 They will at times bring them [IEP or 504 Plan] in and show me what they’re doing. And I’m going to tell you that most times, it’s not very helpful for me, because I don’t really knowdIt’s not my skill set. (GP) 1.6.2 Honestly, what I do when I get the fifty page school report is I go to the assessment at the end. (GP) 1.6.3 Sometimes we ask to see them. If they’re asking us to write additional letters, let’s see what they’re doing, let’s see if this makes sense. (GP)

DP 5 developmental pediatrician; GP 5 general pediatrician; PN 5 pediatric neurologist; RD 5 rehabilitation doctor.

697M.E. Sheppard and N. Vitalone-Raccaro / Disability and Health Journal 9 (2016) 692e704

were coming to them to obtain a diagnosis for their children (1.1.1, 1.1.2). Since children are unable to receive services at school without being classified, parents sought out doc- tors in order to have their children classified or to rule out a disability altogether (1.1.3).

They’re coming to me as a neurologist to identify a diagnosis, to create a diagnosis, to create a treatment or management strategy, and then most importantly, to follow that through and see that it’s getting to where they need to go. (PN)

Treat

Well visits. Doctors systematically talked about their role in treating children with disabilities through well visits to address routine health care (1.2a.1), to review what was going on, and monitor academic progress (1.2a.2). Children with disabilities were regarded as being ‘‘like every other patient’’ (1.2a.3) once they entered the practice.

We function as sort of home base. Otherwise, you know make sure the child’s basic healthcare is being taken care of, i.e., like immunizations for instance would be the major thing in the first couple of years of life, making sure their growth is coming along, or kept them from a nutritional point of view. (GP)

Medication. Prescribing medication and monitoring the ef- fects through parent and school reports was a prevalent part of treatment protocol, especially for children with attention deficit/hyperactivity disorder (ADHD) (1.2b.1). There was, however, a clear distinction between doctors who wanted teachers notified about the medication so as to utilize teacher feedback regarding classroom behavior to inform the prescription process (1.2b.2) and those doctors who did not want to notify teachers about the medication (1.2b.3). It should be noted that while several doctors treated children through routine well visits and through medical management, they discussed these two treatments as separate entities.

I mean, for some kids, straight forward ADHD, you’re prescribing meds based on the teacher’s

feedback on his ADHD symptoms. That’s easy. That’s straight forward. (GP)

Refer

To early intervention. The primary referral for patients be- tween the ages of birth to 3 years old was to Early Interven- tion (1.3a.1) (1.3a.2). Referrals to Early Intervention tended to be very specific in that doctors provided detailed contact information to families (1.3a.3).

Here’s what it is. If it’s a concern about speech delay or what not, the standard workup is get a (–?) pass, get an Early Intervention evaluation, because frankly they’re the ones who do it the best. (GP)

To other medical specialists. Referrals to other medical specialists were a routine occurrence when children pre- sented characteristics that indicated the need for additional evaluation(s) and treatment(s) (1.3b.3) (1.3b.4). Some doc- tors worked in settings where these resources were readily available (1.3b.1). However, doctors whose practices were not …

Psychology in the Schools, Vol. 52(7), 2015 C© 2015 Wiley Periodicals, Inc. View this article online at wileyonlinelibrary.com/journal/pits DOI: 10.1002/pits.21847

UTILIZATION OF SCHOOL NURSES DURING THE EVALUATION AND IDENTIFICATION OF CHILDREN WITH AUTISM SPECTRUM DISORDERS

CONSTANCE E. MCINTOSH AND CYNTHIA M. THOMAS

Ball State University

This study explored school nurses’ involvement during the identification and treatment of children with autism spectrum disorder (ASD). The extent of school nurses’ collaboration with school psychologists and other educators also was studied. Participants included 100 school nurses, representing 18 states, who completed a survey on ASD. T

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