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: sheppardm@rowan.edu (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

 

 

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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

 

 

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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

 

 

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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.

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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 associated with other in-house resources also referred families for additional diagnostic testing when such refer- rals were viewed as necessary (1.3b.2).

Second, would be referral for outpatient therapeutic evaluations based on the child’s presentation. Third, would be the diagnostic testingdmedical 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)

For school evaluation. It was reported that children with disabilities between the ages 3 and 21 years old not receiving educational services were referred to their local school districts for evaluation by the child study team (1.13c.1) (1.13c.2). In general, doctors reported that they encouraged families to work with their local schools because the home district is ideally where children’s educa- tional needs should be managed (1.13c.3).

There was some delay and was recommending to the mom to get the child evaluated by the child study

 

 

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team at the local school board so they could be considered for preschool special needs program . (DP)

Recommend Doctor recommendations took two primary forms:

written and verbal. Recommendations ranged from in- formal verbal suggestions to more formalized letters and prescriptions.

Verbal. Verbal recommendations were typically related to getting the school involved early so that children obtain the appropriate services thus facilitating ongoing documen- tation year-to-year (1.4a.1). Doctors reported that they relied on schools to provide specific details after their recommendation (1.4a.3).

You need to work with a tutor. You need to work with the school. You need to work with a specialized pro- gram. And then sometimes I’ll make specific recom- mendations, 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)

Written. Written recommendations took the form of either prescriptions for medical tests and lab work (1.4b.1) or formal letters to the school (1.4b.2). Doctors frequently re- ported writing letters as the primary mechanism for making education- and school-based recommendations (1.4b.3).

Collaborate Interactions were considered to be collaborative when

they moved beyond making recommendations and referrals and simply exchanging information to a level of discourse characterized by shared decision-making based upon a common goal.

With other medical personnel. Doctors working in medical practices associated with a children’s hospital or develop- mental clinic reported high levels of teaming and collabo- ration between various service providers such as occupational and physical therapists (1.5a.1). Doctors working in private practice took it upon themselves to initiate collaboration outside their practices as needed (1.5a.2) while other doctors systematically secured permis- sion from families to collaborate with other physicians as a matter of course (1.5a.2).

I have to have unfettered permission to have two way communication with the primary care pediatrician . (DP)

With schools. Reaching out and engaging schools was viewed as ‘‘better’’ for all involved, including family, child,

and school (1.5b.1). Doctors reported that they preferred talking to a ‘‘real’’ person over the telephone about what was going on in the classroom (1.5b.2).

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)

Read reports Parents bring school reports, individual education pro-

grams (IEP) and 504 Plans, to their doctors. School reports were described by doctors as lengthy, ‘‘not very helpful,’’ ‘‘voluminous,’’ and ‘‘marginally useful’’ partly because in- terpreting educational reports is not within a doctor’s area of expertise and partly because of the daunting length (1.6.1). Despite the density of these reports, doctors reported that they had fashioned strategies for making meaning mostly by focusing on summary sections (1.6.2). Sometimes doctors requested copies of school reports when they have been asked by a family to write a letter to the school (1.6.3).

Honestly, what I do when I get the fifty page school report is I go to the assessment at the end. (GP)

Theme 2. Barriers

Follow up questions about interactions with families and schools often led to discussions about challenges and bar- riers that interfered with the collaborative process (Table 3).

Time A frequently cited limiting factor for substantive discus-

sions with families during office visits was a predetermined length of time allotted for each visit (2.1.1). Time con- straints rendered doctors unavailable to attend IEP meet- ings because ‘‘it’s a whole afternoon’’ (2.1.2). Several general pediatricians commented on the generous time allowed for visits to specialists (2.1.3).

And, frankly, I don’t have the time. That’s the big limiting factor. We get scheduled fifteen minutes and I’m drowning with fifteen minute visits as is. (GP)

Financial issues for doctors There were several aspects to the financial deliberations

of doctors. First, doctors who worked for hospitals did not attend IEP meetings because hospitals do not pay them to attend. Doctors in private practice would attend an IEP meeting if parents were willing to pay for their time (2.2.1), which rarely occurred. Second, doctors cited non- medical programs and services, such as social work, being eliminated from their practices because of a lack of funding (2.2.2). Third, due to the expense, materials were not trans- lated for families (2.2.3).

 

 

Table 3

Representative quotations from doctors for Theme 2: Barriers e elements that interfere with doctor/family/school collaboration

2.1 Time 2.1.1 And, frankly, I don’t have the time. That’s the big limiting factor. We get scheduled 15 min and I’m drowning with 15 min visits as is. (GP) 2.1.2 Yes. The time constraints are probably the biggest. Think of how much timedI’ve been to a few IEP meetings over the years. It’s a whole afternoon. (DP) 2.1.3 (general pediatrician discussing the reports of a developmental pediatrician) They must take an hour with each patient. (GP)

2.2 Financial issues for doctors 2.2.1 (asked about attending IEP meetings) If I was paid for it, yeah. I am willing to volunteer, over the phone, during my lunch break, to do that. The hospital doesn’t pay me to do that. If the parent is willing to pay the hospital for my time, I would be very glad to do that. But nobody has taken me up on that. I did once, when I was in private practice, go to an IEP meeting. Once, the parents asked me. I blocked out my time. I did it for free. But I work for a hospital now. I’m not working for myself; I’m working for a hospital. (DP) 2.2.2 But, basically, that model exists because the state made it so. The moment the state pulled the money away, the social workers were gone. (DP) 2.2.3 They [schools] certainly never translate written material, ever. But neither do we, because it’s expensive. (DP)

2.3 Parent response (compliance) to a doctor recommendation or prescription 2.3.1 I think it’s usually parent follow through. I really do. And most of the time, when things don’t happen, it’s following through. (DP) 2.3.2 . when you had off this script, sometimes the parents are like, ‘‘oh great’’ and they run down the street and get it scheduled. Other times, it’s like ‘‘great, Dr. X gave me this’’ and they never fill it. That happens quite often. (RD) 2.3.3 I give them a script. I give them a piece of paper that says, ‘‘X clinic is down the street’’. But, if they seem motivated, I don’t waste a ton of time, I say, ‘‘this will be great, do this and then come back to me and make sure they send me notes’’. If they look at the script and are like, ‘‘this is another thing on my list’’, and I can detect that, then I’ll say, ‘‘look, I envision this for your kid.’’ and I try to tee up a few goals. So as to improve compliance. (RD)

2.4 Impact of culture and language 2.4.1 Right, right, that’s not uncommon and the language barriers are really an issue. (GP) 2.4.2 But, at any rate, where English is a second language, it’s extremely difficult. Even in English it’s hard to explain to parents what children’s issues and needs are. So, that’s really, really, really hard. (DP) 2.4.3 And, for my Hispanic families, there’s another sword hanging over their heads, which is deportation. The vast majority of them are illegal. And, they’re afraid to tangle with an education system that could easily call the INS. There’s a constant fear. (DP)

2.5 Parents with resources and parents without resources 2.5.1 dto focus in on this nichedwho pays for it? That’s really the biggest part of what’s important, because as a healthcare provider I will often typically make recommendations for psychology services, psychiatry services, tutoring services, and I might as well just crumble the paper up and throw it in the trash, because if somebody has no income, low income, Medicaid backgrounds, single-parent familydpeople that don’t havedThey can’t cook dinner. They can’t necessarily expect e Where’s dinner going to come from; finishing your homework . are you reading at the high second-grade level or the mid second-grade level. It’s just not a focus. (GP) 2.5.2 So what it does is, it creates a two-class society. There are the people that can afford private advocacy and as a result have a very successful, although testy, relationship with their local board of education. And the parents that get railroaded . (DP) 2.5.3 It actually depends on the community they’re in. I think there are some communities that do an amazing job. They care for the kids. And then there’s other communities where I thinkdthis happens probably where there’s less moneydwhere, if you don’t speak English or if you’re poor or if you look like we can walk all over you . We’re in communities where, if you’re not the squeaky wheel, then you don’t get anything. (DP)

2.6 Parent knowledge 2.6.1 Usually, most parents are not necessarily that sophisticated. They ask how this impacts life and how this impacts school. (PN) 2.6.2 I think they don’t know all of the services they can ask for. (DP) 2.6.3 I don’t think parents are aware of what services are available to their own communities, specifically through their school district, after the age of three. (DP)

2.7 School’s willingness to collaborate 2.7.1 These are also the districts that aren’t interested in my reports, ‘‘We’ll do everything, thank you’’. (DP) 2.7.2 The law means nothing. This is Dodge City, where, to quote the name of a movie from about ten or fifteen years ago, there’s the quick and the dead. If you’re not quick you’re dead. And, that’s what happens. The school districts play fast and furious with the law, and their philosophydand increasingly it is sodis, catch us if you can. If you catch us violating the law, take us to mediation, and we will apologize profusely. But, in the meantime, we’ve saved ourselves three four maybe even six months’ worth of budget. (DP) 2.7.3 Because, I can tell you, for every Michael, there are five other kids in (references state) who are being crammed into a self-contained multi- disabilities class in district, because the district is unwilling to provide the quality program to that child. Either in district or out of district. (DP)

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

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Parent response (compliance) to a doctor recommenda- tion or prescription

Lack of follow through on the part of parents was viewed by doctors as impeding collaborative practice resulting in ‘‘things’’ not getting done (2.3.1). Com- parisons were made between families who responded immediately to prescriptions for tests and/or medical ser- vices by making and keeping the necessary appoint- ments, and those who never did (2.3.2). It was reported that parents often did not follow through. The word ‘‘compliance’’ was used by doctors when they described parent responses to prescriptions and recommendations (2.3.3).

. when you had off this script, sometimes the parents are like, ‘‘oh great’’ and they run down the street and get it scheduled. Other times, it’s like ‘‘great, Dr. X gave me this’’ and they never fill it. That happens quite often. (RD)

Impact of culture and language Several doctors reported that language barriers were a

significant challenge when working with diverse families (2.4.1). Doctors discussed that when English was a second language for parents, explaining their child’s issues and needs to them, became ‘‘really, really, really hard’’

 

 

Table 4

Representative quotations from doctors for Theme 3: Knowing and Understanding e what doctors know and understand about topics related to Special

Education

3.1 Special education law and procedures 3.1.1 If it’s a health piece it’s more of a 504 if it doesn’t impact learning. If it’s a learning disability it’s going to be an IEP. (GP) 3.1.2 Then also, I usually write a letter saying ‘‘I’ve made this diagnosis of ADHD. We’re starting this child on this medication in addition I think there should be other accommodations made’’ whether I think the child should have extra time on a test or have preferential seating or whatever and I usually tell the parents to tell the school, give this letter to the school that this diagnosis was made and to request a 504 plan. (GP) 3.1.3 There is a big movement now to make educational goals more curriculum-based and more transparent across time. I think that would be immensely useful. (DP)

3.2 Early intervention 3.2.1 Under the age of three, we’re using Early Intervention to start things at least and make sure they’re getting their initial screening. (DP) 3.2.2 . you know, if it’s birth to three it’s going to be early intervention. (DP) 3.2.3 . one is the 0e3 component, and the other is the 3e21 component. The 0e3 component are called service coordinators, and they’re the ones who develop the IFSPs for children from 0 to 3 and assist the families in the case management of their children with any resources that go beyond the scope of the IFSP. Once the child turns three, they then go to the case management unit and there are case managers whose jobs are to managed(DP)

3.3 Gaps 3.3.1 [When asked about which schools do what] That’s limited because I’ve only been on this side of the river for just under two years. So, that’s part of my issue, is that I don’t know them all like the back of my hand. (RD) 3.3.2 I get those three laws mixed up, the 504, the IDEA and the No Child Left Behind, (GP) 3.3.3 Well, I’m sure there are support groups. It doesn’t come to mind . (GP)

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

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

(2.4.2). Culture impacted a family’s engagement and follow through in general with certain immigrant groups being more reticent than others particularly in cases of illegal sta- tus (2.4.3).

Parents with resources and parents without resources Doctors cited complex family situations such as single-

parent households, families living in poverty, underedu- cated parents, and unemployed adults in the home as being reasons why families may not follow through on a recom- mendation for psychological services or tutoring. One physician hypothesized that seeking services was as sec- ondary concern when compared to struggling to put food on the table (2.5.1). There was a widely held perception among doctors that some school districts discriminated against families with less money and limited ability to advocate for themselves resulting in children and families not receiving appropriate or complete educational services (2.5.2, 2.5.3).

So what it does is, it creates a two-class society. There are the people that can afford private advocacy and as a result have a very successful, although testy, relationship with their local board of education. And the parents that get railroaded . (DP)

Parent knowledge Some families were viewed by doctors as being less

sophisticated (2.6.1) and not knowing what they could ask for (2.6.2). Likewise, it was stated that some families were not aware of community supports or what they could receive through their school district. It was asserted that if parents do not know what is available or to what services they are entitled, they would not seek out those supports and services (2.6.3).

School’s willingness to collaborate Two aspects to this code emerged, one being a lack of

interest in collaboration and the second a clear rejection of physician input. Doctors reported that some schools were just not interested in doctors’ reports, preferring to do oper- ate independently from the physician (2.7.1). They also reported that some schools just blatantly disregarded doctor recommendations and the law responding only to mediation (2.7.2).

Because, I can tell you, for every Michael, there are five other kids in ., who are being crammed into a self-contained multi-disabilities class in district, because the district is unwilling to provide the quality program to that child. Either in district or out of dis- trict. (DP)

Theme 3. Knowing and understanding

Doctors were not asked directly what they knew about the topics related to Special Education that emerged as pri- mary codes in this code family. Rather, doctor knowledge was revealed informally during discourse as conversations unfolded (Table 4). Doctor knowledge and understanding, became apparent in the way doctors talked about topics unsolicited.

Special education law and procedures Some doctors were able to make a clear distinction be-

tween an IEP and a 504 Plan and the type of learner profile associated with each of these legally mandated documents signifying knowledge of not only the legislation that sup- ports these records but also the nuances that distinguish them (3.1.1) (3.1.2). Language use was a significant marker of doctor knowledge (3.1.3).

 

 

Table 5

Representative quotations from doctors for Theme 4: Learning e How doctors learned about topics related to Special Education

4.1 Mentors 4.1.1 Just watching good mentors and how they navigated. (RD) 4.1.2 I was trained at the knee of experienced developmental pediatricians. (DP) 4.4.3 My training, (name removed), the woman, the model, of the way I practice, talked about triangles: educational, medical, social. That’s what (name removed) trained me back in 1992dhow to construct my thought process in working with families. (DP) 4.1.4 You know, like I’m sure at some point we had lectures, and I was mentored by others on ‘this is what an IEP is and this is what to look for.’ And periodically, we do have educators that come to talk to our fellows about testing, IEPs and what they mean, what their legal rights aredthat kind of thing. So, certainly over twenty years I’ve probably been taught a lot. I say self-taught, but I’m sure there have been lots of people on the way that have said, ‘hey, this is what to look for.’ (DP)

4.2 On-the-job 4.2.1 It’s something you learn on the fly. (GP) 4.2.2 And after you read enough [IEPs], you know what to look for. (DP) 4.2.3 So, during my training at (name of school removed), we actually had a legal partnership and so we had members from there, from the disability law centerdI forget the exact name of itdgive us a couple of lectures. ‘This is education law, and what they’re entitled to and what not.’ It was a new project starting up . So that helped with some of the stuff. On this side of the river, Dr.dI can’t remember his namedhe’s head of the Learning Center here at (name removed) he gave a lecture and talked about a lot of the different plans and what not. (GP)

4.3 Absence of training in medical school 4.3.1 (asked if medical school training addressed IDEA, parents’ rights and special education law) I finished residency in 2001, and the answer would be no. Formal training? No. (GP) 4.3.2 Oh it’s self-taught. I mean, residency, it’s zero. (GP) 4.3.3 There’s not much- I feel like there’s so much to learn that even though it’s a big part of it, I think it’s so customized to where you live and they’ve got to teach the main things that you’re going to be tested on. (GP)

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

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If it’s a health piece it’s more of a 504 if it doesn’t impact learning. If it’s a learning disability it’s going to be an IEP. (GP)

Early intervention The continuum of what doctors knew about early inter-

vention ranged from a general awareness of the program (3.2.1), to the knowledge that infants and toddlers are screened for services (3.2.2), to a significant understanding of what actually comprises early intervention service coor- dination (3.2.3).

Under the age of three, we’re using Early Interven- tion to start things at least and make sure they’re get- ting their initial screening. (DP)

Gaps There was confusion about the different special educa-

tion laws and documents (i.e., IEP and 504 Plan) (3.3.2).

I get those three laws mixed up, the 504, the IDEA and the No Child Left Behind. (GP)

Some doctors were aware that community supports for families and children with disabilities existed, however, were unable to identify them by name (3.3.3). When doc- tors were new to a geographical area, they expressed that their knowledge of school programs and community sup- ports was limited (3.3.1).

Theme 4. Learning

Physicians were asked directly where and how they learned about special education practices and procedures (Table 5).

Mentors Watching how good mentors navigated working with

families of children with disabilities (4.1.1) and actually be- ing trained by mentors (4.1.2) were the two most frequently identified means for learning. Some mentors were identified by name and the mentoring process described in detail (4.1.3). Frequent references were made to being ‘‘self- taught’’ because the responsibility for attending to mentors and picking up information and desirable practices was incumbent upon the doctor (4.1.4). Doctors described all levels of mentoring from casual observation to systematic training.

I was trained at the knee of an experienced develop- mental pediatrician. (DP)

On-the-job Overall, doctors described a learn-as-you-go mode of

learning. Ongoing interactions with children, parents, fam- ilies, colleagues, nurses and social workers served as the mainstay of on-the-job learning (4.2.1). With specific regard to the IEP, it was expressed that after reading enough documents, one begins to ‘‘know what to look for’’ (4.2.2). Doctors who were associated with specialized or teaching hospitals were exposed to additional sources of information such as lectures on disability law and special education (4.2.3).

It’s something you learn on the fly. (GP)

Absence of training in medical school Doctors were directly asked if topics related to special

education were part of the medical school curriculum. The resounding response from all doctors was ‘‘No.’’

 

 

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Formal training in medical school did not address special education (4.3.1).

Oh it’s self-taught. I mean, residency, it’s zero. (GP)

Discussion

While answering the research questions related to how doctors perceive their role as collaborators within the doc- tor/family/school triad and how they carry out that role, the data illuminated several key findings that help explain collaboration within a complex system. The theory that emerged illustrates: (a) the many responsibilities of the physician when working with patients with disabilities and their families; (b) the nature of collaboration between physi- cians, parents, and school personnel; and (c) the factors that influence that collaboration such as the level of doctor knowledge about special education and time constraints. The structure of this theory is grounded in data and depicts the process by which doctors engage in collaboration with families of children with disabilities and schools.

Approximately half of the participants were develop- mental pediatricians with what would be considered exper- tise in the areas of learning, understanding, doing, and combating barriers when working with children with dis- abilities. The physicians who would be considered early career doctors and most of the general pediatricians had less information about special education as compared to those physicians who had been practicing longer and/or were developmental pediatricians. Yet, early career doctors were actively trying to obtain information to support their patients with disabilities by reading research, attending conferences, and asking parents. These finding demon- strated that physicians, both early career and those with many years of experience, value information about special educational and therapeutic services and utilize that infor- mation in a myriad of ways to support their patients with disabilities and their families. Findings also substantiate the conclusion that on-the-job learning is time consuming and must be actively pursued by the individual physician.

It was evident from the participant responses that the physicians with greater experience working with children with disabilities were more aware of the positive effects of collaboration and able to identify the barriers to mean- ingful school/doctor/family partnerships. Therefore, it was not surprising that physicians with the most knowledge of special education policy and procedures collaborated the most frequently with school districts to support children with disabilities and their families. Physicians with less experience responded to the question about school commu- nication with enthusiasm for the topic, but reported primar- ily instances of completing checklists related to ADHD diagnosis, completing health forms, and prescribing medi- cations to improve school performance for children with ADHD. The fact that doctors who had more experience with, and knowledge of, special education procedure and

practices reported more instances of collaborating with school personnel supports the assertion in the research liter- ature that collaboration is more apt to occur, and be more successful, when all parties share a common vision and understanding.40

It should be noted that the physicians in this study who reported having the most knowledge of special education policies and practices (the specialists) saw the children the least frequently. In addition, typical protocol calls for a specialist to send reports to a general pediatrician when a diagnosis is made and the general pediatrician must then follow up with a family with regard to the recommenda- tions of the specialist. These procedures highlight the prob- lem of having those with the least information about special education (the general pediatricians) acting as the point per- son for families.

The finding that there is limited formal training in the area of special education policy and practices for physi- cians, is similar to that of Shah et al.16 and Sneed et al.18

who found that pediatricians reported a lack of training and a lack of knowledge about special education to be bar- riers to effectively supporting families of children with dis- abilities. Our participants reported that they learned how to support families of children with disabilities primarily through mentorship and on-the job training. The authors assert that a lack of formal training can lead to inconsistent support for children with disabilities and their families.

Limitations

While the authors took several measures to increase the quality and trustworthiness of this study, limitations remain. Participants were not asked directly about what they knew about special education. Yet, the researchers determined overlaps between the code families Knowing and Understanding and Doing. These overlaps demonstrate the need for additional research.

Although the utilization of purposive and theoretical sampling was appropriate for the goals of this study, one noted limitation of these methods is that another researcher would likely come up with a different sample when identi- fying important characteristics and picking typical elements to be in the sample.25 This study relied on doctor report and may reflect bias in that participants willing to take part in a research study of this nature would likely be those who are interested in the topic, are knowledgeable about the topic, and are possibly interested in learning more about it.

The findings, while not generalizable to the general pop- ulation, successfully met the researchers’ goal of devel- oping an initial understanding of the roles of physicians in the doctor/family/school triad. The questions that were generated include: (a) what are the differences in percep- tions of doctors from varied geographic areas; (b) what are the differences in perceptions of doctors from differing racial and ethnic backgrounds; and (c) how does knowledge about special education effect physicians’ practice. In

 

 

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addition, this research should be extended to determine what families of children with disabilities and school personnel perceive as of the roles and responsibilities of the members of the doctor/family/school triad.

Conclusion

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 precisely because the knowledge base about special education supports and ser- vices and the laws that regulate service delivery for chil- dren with disability is not addressed at the pre-service level and is greatly needed in practice. In light of study findings and in the context of the AAP’s call for all pedia- tricians to have knowledge of special education law and practice, the authors recommend that the medical school curriculum include a basic overview of special education law and support a focus on working collaboratively with parents and medical and school professionals to prepare physicians to support children with disabilities and their families. The theory behind understanding doctor/family/ school collaboration has been utilized by the authors to develop and pilot this new curriculum.41

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