Author ORCID Identifier

https://orcid.org/0000-0002-3047-0236

Date Available

8-21-2024

Year of Publication

2023

Degree Name

Doctor of Philosophy (PhD)

Document Type

Doctoral Dissertation

College

Health Sciences

Department/School/Program

Rehabilitation Sciences

First Advisor

Anne Harrison, PT, PhD

Second Advisor

Dr.Camille Skubik-Peplaski, PhD, OTR/L, FAOTA

Abstract

The aim of this dissertation was to explore how adults with a Lifelong Disability (LLD) access and experience rehabilitation therapy services across their lives. Many LLD diagnoses such as cerebral palsy and spina bifida are considered non-progressive; however, there are common challenges that occur as people with LLD become adults, including increased pain, fatigue, and functional loss. Literature addressing the needs of people with LLD to access adult-oriented medical providers has focused primarily on medical transitions, which have described the processes for pediatric patients moving to adult-oriented settings from pediatric settings. Few studies have addressed the rehabilitation therapy needs of patients who were either aging out of pediatric settings, or who needed the services of adult-oriented therapists as they acquired secondary orthopedic concerns.

This three-part dissertation examines the perceptions of physical therapists (PTs) and individuals with LLD about therapy services. First, a Delphi Study with pediatric PTs described the needs of patients with LLD as they aged out of pediatric services, and identified concerns best addressed by both pediatric and adult-oriented therapists. The pediatric therapists indicated that people with LLD will likely need orthopedic management by adult-oriented PTs. A second study explored the experiences of adult-oriented PTs as they provided services to adults with LLD. This qualitative study explored the perceptions of adult-oriented PTs in providing care for adult patients with LLD. Themes that emerged were similarities and differences between patients with LLD and other patients, and the differences in the patients’ expectations of therapy. The therapists all agreed that adults with LLD having orthopedic concerns should be referred to adult-oriented outpatient therapy settings. They viewed the orthopedic complaint as the central focus of service. The diagnosis of LLD was seen as part of the person’s co-morbidities, adding more challenges to the patient’s presentation.

A final qualitative study described the experiences of adults with LLD with therapy services across their lives. The participants represented a wide range of functional abilities, and all demonstrated the capacity of consent and independence in communication. Four major themes emerged: the influences of changes over time, therapy versus education services, transitions and meeting therapy needs as an adult, and the importance of communication and support. The self-determination concepts of autonomy, competence and relatedness were woven among the four themes. The participants discussed changes over time as seen by changes in themselves, the systems they used, and the demands on their abilities. Most had participated in some form of early intervention services when they were diagnosed. Most had received school-based therapy services that targeted stretching and maintaining mobility. Many felt that schools should have focused more on academics. Some of the participants mentioned the priority of walking in their pediatric PT services, and they felt this could have been discontinued sooner. Despite having feelings that they may not have benefitted from pediatric therapy; participants felt the therapists had good intentions. None of the participants transitioned directly from pediatric services into adult-oriented services. Several people did seek out PT services as adults, but some expressed dissatisfaction with the adult-oriented services. Most participants did not seem to understand the benefit of adult-oriented therapy.

This dissertation increases our understanding of the needs of people with LLD across their lives in terms of physical therapy services. In synthesizing these three studies, it is clear that pediatric and adult oriented physical therapists and people with LLD need more education about appropriate physical therapy interventions for this group of people.

Digital Object Identifier (DOI)

https://doi.org/10.13023/etd.2023.400

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