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

These data were presented as preliminary findings at the TASH 2013 National Conference.
https://doi.org/10.1016/j.dhjo.2016.05.007Get rights and content

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 = 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.

Section snippets

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

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 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

Results

The authors identified four primary themes that comprised 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).

Discussion

While answering the research questions related to how doctors perceive their role as collaborators within the doctor/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 physicians, parents, and school

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 services and the laws that regulate service delivery for children 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

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

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