Responding to Tenets of Person-Centered Care in Neurorehabilitation
Responding to tenets of person-centered care in neurorehabilitation: A reflection on recent evidence.
By Dr. Carolyn van der Meulen, OTD, OTR/L
“…The first thing you notice at the hospital is that they are not really talking to you. Medical language is difficult and complex, and they rarely take action to make things more understandable to you. “ – Salvatore Ianconesi
Person-centered care is the gold standard of rehabilitation; however, the fast pace of our medical system creates barriers to this practice. As practitioners, we aim to provide the best possible care we can within the context of our setting. Within neurorehabilitation, listening to and developing rehabilitative goals based on the lived experience of clients provides insight into how we can best provide this care. Recent research by health psychologists Dr. Gareth Terry and Dr. Nicola Kayes outlined four crucial components of person-centered care in neurorehabilitation as identified by survivors of neurological events:
(1) That patient experience and needs should always be understood in terms of their difficult new reality;
The majority of the people we see in the Brain Injury Rehabilitation Treatment (BIRT) program are diagnosed with a mild traumatic brain injury. Time and again, as I lead a group education intervention around symptoms and recovery from mild traumatic brain injuries, the discussion comes back to the use of the term “mild” as the leading diagnostic descriptor of their injuries. The discrepancy between diagnostic terminology and lived experience becomes starkly apparent; “How can my injury be mild if I can’t do anything I used to do?”
“An individual needs to have balance between all domains of life including work, rest, self-care,
and leisure to be a healthy and productive worker.”
Our diagnostic terms and objective assessments cannot capture the entirety of the injury experience for the individuals who walk through the doors of Northwest Return to Work. We start our work by seeking to understand who our clients are. After an injury, a client’s ability to engage in valued identities, roles, and activities is diminished. As such, an injury can be all-consuming; weeks if not months of life are spent managing medical conditions and coping with changes to their perception of who they are and what they can do. Through open dialogue, the BIRT team works to empower the client to be the expert of their lives. We look beyond a diagnosis to explore what is valued by each client while identifying the strengths and barriers impacting their engagement in activities. During rehabilitation, most clients become more aware of the difficulties they face since their injury. The BIRT team seeks creative, individualized solutions, and provides strength-based support as the person physically, cognitively, and emotionally adjusts to this new reality.
We are an industrial rehabilitation clinic; one of our primary aims is to help our clients return to work. An individual needs to have balance between all domains of life including work, rest, self-care, and leisure to be a healthy and productive worker. We know that engaging in valued activities is important in living a healthy and satisfying life. For these reasons, we integrate valued activities from each domain of life into treatment. For example, we ask our clients who love cooking to bring in a favorite recipe and engage in a cooking intervention to share with everyone in the BIRT program. This challenges their physical tolerances and builds their cognitive skills to help them progress towards returning to work. It also allows clients to share pieces of who they are and what they find important. This holistic approach helps our clients leave treatment feeling more confident in who they are and what they can do.
(2) the need for a relational orientation in care;
Relational orientation describes the relationship that a healthcare practitioner creates with their clients. After a traumatic brain injury, individuals often find that their time, once dedicated to meaningful roles of worker, family member, and friend, must now be allocated to managing and attending medical appointments. Understandably, these individuals will naturally adopt a role of being a “patient.” At NWRTW, our goal is to help clients re-orient from the patient role and transition back to the roles that drive meaning and purpose in their lives. We unpack these complex identities and roles through our multidisciplinary approach. In our time together, we get to know our clients far beyond the scopes of their diagnoses and jobs. We integrate valued recreational and daily activities into our therapeutic approach. We understand that a unidimensional approach to rehabilitation can increase an individual’s perception of the significance of their injuries and decrease the likelihood of their return to work and return to life success. Through a person-centered approach, we create client-practitioner relationships that help clients engage in activities that are important to their individual roles and identities, bolstering awareness of their competence and strengths.
In addition to the client-practitioner relationships, the BIRT program provides a community of individuals who have all experienced a brain injury and are in the process of recovery. We consider and nurture the power of the complex client-client relationships that form during an individual’s time in the BIRT program. For most of the individuals in the BIRT program, the group sessions are the first time that they have ever been with others who have experienced similar injuries and similar impacts on their daily lives. To increase the therapeutic value of this community, the BIRT team provides opportunities for our clients to work collaboratively in group treatment sessions. These treatment sessions help clients work together to find meaning, enjoyment, and growth, no matter where they are along the continuum of rehabilitation. Combining shared experiences with the purposeful creation of a supportive community helps individuals in the BIRT program form durable connections rooted in knowing one another and respecting one another’s lived experiences and realities.
(3) the importance of treating trust as a currency;
It is well documented that the therapeutic relationship is asymmetrical; the client, seeking help, enters the therapeutic sphere with increased vulnerability compared to the practitioner and their team (Austin et al., 2006). The creation of trust between the client and the practitioner as an individual, and with the therapeutic team, is the bedrock upon which rehabilitative gains are made. At the initial evaluation, the assessment of fit is a two-way street: (1) the practice team identifies the client’s areas of strengths that will steer their rehabilitative success in the program, (2) simultaneously, the client evaluates whether they feel supported to take what Terry and Kayes describe as the “initial leap of faith,” to trust the care team and the care they provide. The BIRT team helps the client “leap” by creating open dialogue. Specifically, the team prompts the client to reflect on their experience with the evaluative process during the plan of care meeting and uses this reflection to help plan their subsequent care. Once a client enters the active treatment phase of the BIRT program, our aim is to establish multifaceted trust.
“This process is difficult and delicate; pushing a client too hard too fast will compound upon existing fear- and pain-avoidance behaviors, while not pushing a client hard enough will limit the meaningful gains possible with skilled intervention.”
Terry and Kayes describe a formative tenet of trust-building as the client’s perception of the rehabilitation team’s vocational competence. Our interprofessional team includes occupational therapists, physical therapists, neuropsychologists, licensed mental health counselors, speech and language pathologists, physicians, and vocational counselors. Our team covers a large scope of practice that provides a breadth of knowledge and skills to help our clients resolve barriers that impede their ability to participate in valued and necessary roles. We utilize individual and group interventions to provide education and practice the functional skills required for return to work and return to life. At the same time, we communicate with our clients’ existing medical providers, educate their family members and care givers, and advocate to policy makers to develop vocational environments that promote safe and sustainable return to work opportunities.
Interviewees in Terry and Kayes’ research spoke to how sustaining a client’s initial trust requires the practitioner to step beyond being competent. Clients felt increased trust in the therapy team when practitioners engaged in therapeutic listening, shared goal setting and plan of care development, and created more personal relationships that helped the clients feel at ease. Therapeutic listening provides a client with confirmation of their experience as real and impactful through the practitioner’s creation of an empathetic and validating environment (Kemper, 1992). Our clients are managing complex injuries and resulting sequelae; their experience of pain and other significant adverse symptoms create patterns of kinesiophobia[1] and cogniphobia[2] which contributes to low levels of self-efficacy and perceived competence. As expected, our clients often have higher levels of perceived disability and pain interference. Our initial hurdle is to help clients feel safe. We aim to validate the experience of pain while also providing education about the benefits of movement, exercise, and engagement in activities. This process is difficult and delicate; pushing a client too hard too fast will compound upon existing fear- and pain-avoidance behaviors, while not pushing a client hard enough will limit the meaningful gains possible with skilled intervention. This process is both an opportunity to develop trust through successful engagement and a threat to maintaining trust if a client experiences and is unable to manage a flare in adverse symptoms. We work from a function-based approach, rather than a symptom-focused approach. We use meaningful activities and therapeutic rapport to diminish the psychosomatic reaction that is inherent to any chronic condition.
(4) efficacy in rehabilitation is co-constructed and enabled by the efforts of clinicians.
As an interdisciplinary team, we are well-versed in playing to the strengths of each member of the team. We maximize our potential for skilled intervention by utilizing our individual scopes of practice; we attack problems from multiple directions to create fully supportive solutions. We also recognize that our clients are integral members of the interdisciplinary team. Each client is the expert of their own case and their own experience. While each of our practitioners are highly skilled in neurorehabilitation, our clients provide the expertise needed to integrate the skills and techniques they learn into their daily lives. At the beginning of the program, our clients meet with the team and, together, we outline everyone’s treatment responsibilities. We outline these responsibilities to help demystify the process of neurorehabilitation and increase the accountability of each member. High accountability helps drive high-quality individualized care.
Individualized care is rooted in a strengths-based approach. We try to find a “just right” level of challenge that provides each client opportunities for success from the moment they start the program. We aim to increase self-efficacy and perceived competence through successful engagement in daily activities. Our clients enter the BIRT program at various levels of function and with various long-term goals. Not everyone in our program is ready or appropriate for a return-to-work goal. Instead, we engage in conversations with each client about their expectations for recovery and their hopes for their future. We seek to be culturally humble – we recognize our understanding of independence and meaningful life activities are defined by individuals. If we were to generalize our assumptions to the lives of our clients, we would be doing them a disservice. For this reason, we talk to our clients about their hopes, ideas, and plans. We recognize that a person’s culture is an important dimension of their care because it can shape their perception of health and wellbeing. Many of the individuals in the BIRT program work with interpreters; it is through the joint efforts of the clinicians, clients, and their interpreters that we aim to broker an understanding of a client’s preferences, values, and traditions. We benefit significantly from the cultural inclusion efforts offered by the interpreters. They work closely with the BIRT clients to accurately communicate their needs and desires, which helps us deliver the best possible care.
Reflection on the tenets of person-centered care in neurorehabilitation identified by Terry and Kayes offers an entrance for clinicians to engage in crucial reflection of their own practice. Through examining our patterns and habits, we identify areas of growth and development. We use this reflection in combination with recent evidence and feedback from our clients to critically review our strategies and implement changes. By taking this approach, we create a better mechanism for identifying concrete steps we can take as clinicians to support higher standards of care.
[1] Kinesiophobia – fear of movement that is associated with prolonged disability and pain (Monticone et al., 2015)
[2] Cogniphobia – the avoidance of cognitively-taxing activities that may increase or trigger a headache and is associated with prolonged disability (Silverberg et al., 2017)
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About the Author
Carolyn van der Meulen, OTD, OTRL
Carolyn earned her Doctorate of Occupational Therapy, with special recognition for academic excellence, from Pacific University and dual Bachelor degrees in Sports and Exercise Science and Psychology from Seattle University, where she was selected as a member of the Sullivan Leadership Community. Outside of work, Carolyn develops and publishes peer-reviewed research to support the well-being of different populations. Carolyn was first drawn to join the NWRTW team because of the company’s continued commitment to empathetic and evidence-based rehabilitation.
References:
-Terry, G. & Kayes, N. (2020). Person centered care in neurorehabilitation: A secondary analysis. Disability and Rehabilitation, 42(16), 2334-2343. https://doi.org/10.1080/09638288.2018.1561952