Toward a person-centered ethics framework for autonomy in spinal cord injury research and rehabilitation

In this paper, we explore how the concepts of autonomy and autonomous choice are understood in the context of spinal cord injury in the academic literature, both in reporting on research results and more broadly on outcomes and quality of life. We find inconsistent, framework-absent portrayals of autonomy as well as an absence of discourse that draws upon ethical constructs and theory. In response, we advance a person-centered framework for spinal cord injury research that combines both lived experience and a disability ethics approach to fill this gap


INTRODUCTION
The purpose of this article is to explore how the concepts of autonomy and autonomous choice, which are central to ethical and legal analysis in the health care context, are portrayed and understood in the academic literature that specifically addresses spinal cord injury (SCI).We consider these concepts both in reporting on research results and more broadly on rehabilitation outcomes and quality of life.We address the problem of inconsistent portrayals of autonomy and related concepts and an absence of discourse and frameworks around ethical constructs and theory.In response, we offer a person-centered ethics framework to fill these gaps.The framework is designed to unify and reshape the understanding of autonomy for SCI by placing the perspective of people with lived and living experience with SCI in central focus.It respects the diverse and intersectional identities and realities of people who live with SCI by placing experience of disability as a source of moral knowledge and ethical insight.

LITERATURE REVIEW
For this work, we reviewed 70 papers selected for their focus on qualitative aspects of life with SCI and identified the subset of papers in which discourse about autonomy was explicitly referenced.The project is part of a large, interdisciplinary program of work designed to develop and test a biomaterials-based platform for SCI repair.The authors who performed the analysis and T A B L E 1 Discourse on autonomy in the peer-reviewed literature (2012-2021) on qualitative aspects of SCI. a Full references listed in supplemental file in order of appearance in Table 1.
contributed to the paper have expertise in ethics, rehabilitation science, the life sciences, and lived and living experience with SCI.Members of a larger ethics and knowledge translation advisory group comprising people with diverse expertise and abilities provided valuable feedback during early phases of the work.The authors acknowledge both the strengths and limitations of the intersectionality of these identities.Sixty-eight publications were coded into five major emergent topic areas: (1) coping, adjustment, acceptance; (2) rehabilitation and community integration; (3); expectations, priorities, expressed needs; (4) sense of self and meaning-making; and (5) autonomy and decision-making.Two publications were not categorized due to their unique foci on empowerment and injustice, respectively.Autonomy was a focus of or discussed in a subset of papers spanning all themes.
Co-lead authors (A.N. and A.O.P.) read each paper in full text and extracted themes pertaining to study purpose, theoretical research framework, definition of the term autonomy, discourse pertaining to autonomy, and illustrative excerpts.Data were organized into a table by major foci and year.All authors collaboratively reviewed the data and interpreted them to describe trends and patterns.
Eighteen papers (18/70; 26%) referring to or exploring the concept of autonomy were included in the analysis (Table 1).The remainder were excluded.2][3][4][5] Discourse was most frequently defined and discussed in the context of decision-making and the freedom to make choices, but definitions varied, encapsulating participation, 3,5 self-management, 5 and autonomous functioning. 2utonomy was used interchangeably with related but distinctive terms: cognitive capacity 2,6 and functional independence. 7Van de Velde et al. 1 advocated for a relational approach to autonomy over the Western, individualistic viewpoint that associates functional independence with autonomy and dignity.Five papers used theoretical frameworks to guide the research design, 3,7-10 but only one referenced a specific frameworkthe International Classification of Functioning, Disability, and Healthfor autonomy. 3In some cases, references to theoretical ethics frameworks, such as those exploring concepts of patient autonomy 11 and biomedical ethics, 12 were made, but these frameworks were not discussed in detail or used to explicitly frame understandings of autonomy.

DISCUSSION
Autonomy is one of the cornerstones of modern European philosophy, 13 and a basic principle within Euro-colonial 14 health-related ethics frameworks, such as the broadly known principles derived from the Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 15In this context, autonomy is generally portrayed as self-governance and is framed within objective rationality.
The individualistic and functional-based view of autonomy from a Euro-colonial perspective has spread beyond the context of the original concept, particularly in health care. 12Although autonomy is a philosophicallegal concept that did not originate within the medicophilosophical tradition, it has become a basic tenet of biomedical ethics in the past century.Informed consent, an ethical and legal concept developed and crystallized through many landmark legal cases that followed the professionalization of medicine and subsequent regulation and standardization of medical practice, 16 is the foundation of biomedical engagement in the current context.It is also consistently recognized throughout national and international legislation and documents that aim for the protection of human rights related to health and health care.Although autonomy and respect for autonomy are not guaranteed in the process of informed decision-making, they are central to realizing individual values through informed choices.
Autonomy is a complex concept, but it can be understood from a subjective perspectivebeing autonomousand objective perspectiveacting autonomously.This distinction highlights that every person should, from an ethical and philosophical standpoint, be considered an autonomous being (an end in themselves with intrinsic value), as opposed to an extension of others or as a means to achieve other ends, but that not everyone is able in all circumstances to act autonomously (to uphold their values).The latter can be achieved only if the conditions surrounding a choice are optimal, such as having enough information to make the choice at hand and being free from coercion or violence and other forms of undue influence at the time when the choice is to be made.This differs, for example, from having the cognitive skills to perform the task of decision-making, which is referred to as decision-making capacity.We note that capacity can be lost, temporarily -or permanently, restored, regained, and enhanced.
Regardless of whether a person has capacity or is making an autonomous choice, every person should be respected and treated as an autonomous being when choices are made that pertain to their interests, as subjective autonomy should always be respected.It also should be separated from executive autonomy, or being able to act upon a decision with minimal to no supports.An important issue to consider is how inherent systems of oppression at the foundation of colonial thinking, including ableism, shape the understanding or interpretation of autonomy and capacity.In this context, the social and environmental conditions that frame the experiences of people living with a disability such as SCI must be integrated into conceptualizations of autonomy and decision-making. 17CI is a heterogenous condition associated with a range of functional impairments, including impaired bladder and sexual function and loss of hand, arm, and leg sensation or movement, which present challenges for aspects of daily living.The sudden, life-altering nature of traumatic SCI could affect a person's autonomy and decision-making, although not necessarily their capacity, including during the acute phase of injury. 18Any conceptualization of autonomy in the context of health care, specifically if it pertains to people with lived and living experience of disability such as SCI, should move past a generalized idea of autonomy that can result in marginalizing or excluding these experiences.A range of different approaches to understanding autonomy in SCI has also been proposed.For example, one study to identify strategies for autonomy among individuals with cervical SCI 19 conceptualized autonomy according to four dimensions: independence in daily life (executional autonomy), self-determination (decisional autonomy), participation, and identification. 1 more recent study investigating facilitators of regaining autonomy in individuals with SCI defined personal autonomy as the "functional capacity for selfmanagement and engagement and participation in activities of choice within one's community." 5n the present analysis, we find inconsistent portrayals of autonomy and minimal references to specific ethics frameworks grounding them.The majority of papers discussed autonomy in the context of an individual's capacity for, control of, and freedom to make decisions, but the term was defined as and used interchangeably with related but distinct references to cognitive capacity and functional independence.Despite significant discourse about the influential role of relationships and social support identified in the primary analysis, 20 autonomy as a socially embedded and relational construct was discussed at length in only one paper.Further, although a few papers used theoretical frameworks to guide their studies, we note an absence of explicit frameworks for conceptualizing autonomy.This may contribute to the varied definitions and uses of the term.The finding of mixed uses of autonomy is congruent with a study that also revealed interchanging references in the literature between 2006 and 2016. 21This similarity in results may be a function of the dynamic nature of autonomy that varies across contexts.It may also indicate a broader lack of agreement and understanding of the term in research relevant to SCI.
The emphasis on capacity for decision-makinga transient construct that can be gained or lostmay give the impression that capacity is a prerequisite for autonomy.If autonomy is to be understood as the ability to uphold and live according to personal values, it can be supported and upheld even in the context of diminished or absent capacity or executive autonomy.Moreover, neither the capacity to make decisions nor decision-making overall occurs in isolation.Even when autonomy is not the focus of the research, discourse pertaining to autonomy should be contextualized in a relevant theoretical framework that accounts for the social and relational environment in which choices are made, and beneficially guide the design and framing of empirical research and the clinical elements of postrehabilitation quality of life.
Any framework underlying research that aims to benefit people with lived and living experience, specifically with disability, should be informed by the perspectives and experiences of the population that the research intends to benefit.Given the heterogeneity of both the clinical features and sociocultural factors that affect the experience of SCI, such a framework for autonomy should be flexible, culturally competent, and focus on the realities of living with a disability.In this regard, the framework we propose has four critical features: 1. Centering lived experience.As Stramondo 22

CONCLUSION
Autonomy is central to the experience of human dignity.The adoption of an explicit framework for contextualizing autonomy in SCI research will limit bias in research design, mitigate risks associated with the misinterpretation of results, and maximize translational benefit.A person-centered framework can be an empowering force for all people living with SCI and those people engaged in working with SCI in research and clinical care settings.
Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/pmrj.13146 by University Of British Columbia, Wiley Online Library on [26/06/2024].See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions)on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License has stated, intentionally incorporating, "nuanced, politically aware narratives of life with disability" will result in a "richer understanding of disability from which to deliberate."As such, disability becomes a source of moral knowledge and ethical insight.2. Respecting the heterogeneity of SCI.This vital attribute of the framework foregrounds the heterogeneity of SCI and the diversity of affected people, including identity factors such as age, gender, race, and culture.3. Recognizing intersectionality.By incorporating intersectionality into the framework, different way of knowing, theories, epistemologies, and antioppression ethical approaches can be explicitly addressed.4. Grounding the concept of autonomy.The conceptualization and interpretation of autonomy in the context of decision-making must be informed by disability ethics.Conflating capacity and autonomy with executive autonomy, function, or independence is dismissive of fundamental human rights considerations and inconsistent with relevant health ethics frameworks, including disability ethics.It perpetuates ableism and other systems of oppression and ignores the diversity of human experience.