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Perspectives Of Clinicians And Survivors On The Continuity Of Service Provision During Rehabilitation After Acquired Brain Injury

Rehab Alhasani , Dennis Radman, Claudine Auger, Anouk Lamontagne, Sara Ahmed

Abstract

The objective was to explore the care experiences and service design related to rehabilitation for mobility and participation in the community among individuals with acquired brain injury (ABI), as perceived by clinicians and patients. Five focus groups were held: three with clinicians and two with individuals with ABI. Focus group discussions were transcribed and analyzed using an inductive and deductive thematic content approach. Five themes were identified: Enabling continuity of care; System design; Accessibility and services in the community; Transportation services; and Uncertainty about the provided services. The results of participants’ experiences contributed to developing recommendations of service provision for mobility, leading to a patient-centered continuum of rehabilitation services. Accessibility to rehabilitation to improve the quality of care by addressing needs during transitions and mobility-related deficits, providing needed information, coordinated care, and self-management support in the community.

Introduction

Acquired brain injury (ABI) including stroke and traumatic brain injury (TBI) is a significant cause of disability [1–4]. Approximately 1.5 million Canadians with ABI go through the acute and rehabilitation care continuum [5], costing the health system more than $26.8 billion annually [6]. Individuals with ABI face significant challenges, especially once discharged from acute care, in adjusting to a new phase of life, needing to manage expectations for recovery and potential functional independence [7, 8]. Mobility limitations are estimated to affect 30% of persons with TBI [1, 3, 4], and up to 50% of stroke survivors [9], even after extensive rehabilitation. Such mobility restrictions constrict community engagement and increase negative health outcomes and premature mortality [10, 11].

Mobility is a multidimensional construct with various operational definitions from theoretical and empirical approaches. From a theoretical point of view, some authors use an environmental continuum to define mobility as ‘life-space mobility [12–15]. Webber’s framework adds that mobility is influenced by five vital interrelated determinants, including physical, environmental, cognitive, psychosocial and financial [15]. Also, the broadness and complexity of all mobility-related domains is reflected in the International Classification, Functioning, Disability, and Health framework (ICF) mobility core set [16]. Furthermore, empirical studies based on the preceding frameworks showed that diagnosis alone is not enough to predict mobility limitations. For example, the length of hospitalization and intensity of care are needed to accurately predict a return to work potential, work performance, or social integration [17, 18]. Also, social and healthcare decision-makers recognize that decreasing the incidence and severity of disability and enhancing mobility and participation requires modifying features of the social and physical environment [16]. The World Health Organization recognized the necessity of an active participatory role for patients to improve both the quality of care and ease access to healthcare services [19].

Materials and methods

Statement of ethics

Approval of this study was granted by the Comité d’éthique de la recherche des établissements du centre de recherche interdisciplinaire en réadaptation (CRIR) [CRIR 1387–1218] on August 21, 2019.

Research design, type of sampling and data collection

Focus group was chosen to facilitate discussions and exchange experiences of thoughts among a homogenous group of people related to a common topic [24, 25], and to produce a variety of ideas in a short time among participants [26, 27]. Data collection took place at three rehabilitation sites of Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR) in the province of Quebec, Canada. Pre-recruitment of individuals with ABI was accomplished using a computer-generated random list of previous rehabilitation clients in the sites since November 2019 using the following eligibility criteria: age ≥18 years; men or women with a primary diagnosis of stroke or TBI; files currently open or discharged six months; ability to speak French or English; and living in Montreal. First, based on a purposeful sampling strategy, a clinical team member called eligible participants to obtain initial verbal consent. Then a researcher contacted interested participants through phone calls, explained the study objectives, and answered questions.

Results

Participants’ characteristics

Seventeen clinicians from different professions were recruited and agreed to participate in the study. Three in-person focus groups were conducted, including 3 to 10 participants in each group. The fourth in-person focus group with individuals with stroke included five participants. The last focus group was conducted virtually among five female participants with TBI (Tables 1 & 2) [28]. The recruitment process for individuals with ABI is presented in Fig 1.

Discussion

Experiences from the focus group discussions yielded an in-depth understanding of care experiences and service design related to rehabilitation for mobility and participation in the community among individuals with ABI. Through an in-depth inductive thematic analysis, five main themes, and nine subthemes emerged from the perceptions of clinicians and individuals with ABI. All themes align with the patient-centred care concept, including (1) Enabling continuity of care; (2) System design; (3) Accessibility and services in the community; (4) Transportation services; (5) Uncertainty about the provided services. Also, through a deductive thematic analysis using the ten-rule ICF linking process, most of the identified domains within each theme were mapped to the ICF Environmental Factors. The current study contributed clinicians’ and patients’ experience with service provision for mobility. Participants identified the need to address access to rehabilitation care, and specific areas needed to improve quality of care by addressing needs during transitions, addressing mobility-related deficits including cognition, vision, perceived safety, providing needed information, coordinated care, and self-management support in the community.

Conclusion

The qualitative results of participants’ experiences contributed to developing recommendations of service provision for mobility leading to a patient-centred continuum of rehabilitation services from the acute level of care to community reintegration. Accessibility to rehabilitation care, and specific areas needed to improve quality of care by addressing needs during transitions and mobility related deficits (such as cognitive or aphasia impairments), providing needed information, coordinated care, and self-management support in the community. The results of this study can inform policy-makers, managers, administrators, clinicians, and researchers about services provision to improve mobility and participation in the community among individuals with ABI. The experiences can help identify the areas that need to be considered to develop ideal patient-centered rehabilitation services to improve individuals’ mobility and participation in life roles.

Ciatiotn: Alhasani R, Radman D, Auger C, Lamontagne A, Ahmed S (2023) Perspectives of clinicians and survivors on the continuity of service provision during rehabilitation after acquired brain injury. PLoS ONE 18(4): e0284375. https://doi.org/10.1371/journal.pone.0284375

Editor: Jeffrey Jutai, University of Ottawa, CANADA

Received: July 19, 2022; Accepted: March 29, 2023; Published: April 12, 2023

Copyright: © 2023 Alhasani et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: The Canadian Foundation of Innovation Funding for the Biomedical Research and Informatics Living Laboratory for Innovative Advances of New Technologies in 
Community Mobility Rehabilitation (BRILLIANT) (https://www.brilliant-cfi).

Competing interests: The authors have declared that no competing interests exist.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0284375#sec031

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