INTRODUCTION
In the academic preparation of physical therapists (PTs), faculty members teach empathy, compassion, and active listening.1 Curricular content on psychosocial aspects of patient care teaches valuable lessons in what it means to live with a physical disability in a world of ambulatory people.1–10 Laboratory courses, video material, and clinical experiences expose students to the patient's perspective, and, in pediatrics, professors highlight the parent perspective by having parents share their thoughts and feelings before a classroom of students.11,12
However, students show decreases in empathy over the course of physical therapist education programs,13 indicating that they may begin distancing themselves from their own emotions or experiencing burnout before they even graduate. Likewise, pediatric course content may not highlight the effects of chronic sorrow,12 and lack of self-care and personal well-being on the practitioner. Given that physical therapists share a professional culture that minimizes self-care,14,15 faculty members have a responsibility to address this increasing need with curricular content and evidence-based strategies.
Three significant gaps are addressed in this study. First, the academic preparation of the student physical therapist (SPT) may not include updated terminology to teach complex constructs such as grief and loss in the depth and breadth that each of these entities deserves. Second, SPTs who choose pediatric physical therapy as a career path are often unaware of these stressors and may not be trained to handle the cumulative impact these can have on their own personal health and well-being. In the absence of well-being, compassion fatigue or burnout may arise for the pediatric clinician unprepared for these stressors. Third, evidence-based curricular content for self-care may be lacking. In fact, no studies were found that focused on the emotional well-being of the student, who upon graduation must practice resilience and coping strategies in the face of suffering.
The goals of this study were to: (1) provide updated terminology as it relates to distress among pediatric PTs and the families they serve, (2) describe the experiences of pediatric PTs who encounter chronic sorrow in their daily work, (3) share a curricular model to address students’ emotional well-being to support them throughout their careers.
REVIEW OF THE LITERATURE
Pediatric Physical Therapy as a Unique Specialization
Human beings are wired for attachment in a world of change and loss.16 When a child is born with a chronic condition, pediatric PTs are often the first service providers who have consistent, frequent contact with grieving parents. Given their specialization in neurodevelopment and their role as early intervention providers, they represent hope and support. Additionally, the PT's relationship with the child and family often spans a greater length of time and is more intimate than that of other helping professionals.12 Given parents’ universal desire for their children to lead healthy, fulfilling lives, the loss of what the child “might have been” creates a milieu of chronic sorrow.15 To compound these variables, it is relatively common that a young child's movement disorder is undiagnosed, which leads to ambiguous prognoses and heightened reactivity to unwelcome problems.15,17
Terminology of Loss in Chronic Disability
The term chronic sorrow describes a normal, cyclical occurrence of grief emotions based on a desire to have reality be other than it is.15,17 It occurs when grief or loss is ongoing, as in the case of a child with a disability. It is prompted by a “trigger” that brings attention to the disparity between reality and wishfulness,15 which can happen as a child fails to meet early developmental milestones, lacks readiness for preschool, wants to attend a school dance, or is unable to drive a car. So, not only does the parent/family experience chronic sorrow, the child may too. The presence of chronic sorrow can forecast a family's avoidance behaviors, complicating the role of the pediatric PT.17
In contrast, ambiguous loss occurs when a family member has a loved one who is physically present, but psychologically absent, as with a child with autism spectrum disorder.18,19 Pediatric PTs work with this population with increasing frequency, and may require specialized training to understand this type of grief. Ambiguous loss complicates relationships, prevents closure, and limits clarity for the parent, perhaps because the diagnosis of autism is so multifaceted. It blocks coping, because triggering events can occur for a lifetime.18,19 Recent research on emotion regulation and reframing offers valuable coping methods for adults and children experiencing grief and loss.20,21
Parental Reaction to Grief and Loss
Parents of children with disabilities endure the most stress when the child is first diagnosed,23 which often occurs when the pediatric physical therapist begins regularly providing intervention in the family's home. Table 1 identifies the common parental reactions to having a child with a disability.22
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Table 1: Parental Reactions to Childhood Disability
A parent's reaction to having a child with a disability has been shown to cause disorganized parent-child attachment, difficulty with realistic expectations, misinterpretation of the child's issues, difficulty with intimate physical contact, anger, depression, and decreased comforting behaviors.23 Parents with unresolved grief have experienced conflict and distress in a variety of relationships.23 For example, mothers of children with cerebral palsy were shown to develop a strong focus on physical care as one coping strategy,23 which is closely linked to the role of the pediatric PT. Alternately, parental resolution of grief was indicative of a more realistic mental representation of the child's needs and positive implications for the caregiving role.23
Of interest, the highest rates of secure parental attachment were found in children with the most physical needs, while a less severe diagnosis caused mothers to feel less in control and more anxious in their caregiving.22,23 Unwelcome loss is deeply emotional, yet social and cultural as well.16 It changes simple habits of daily life and alters relationships between parents, siblings of the disabled child, and extended family members.24 Therefore, parents of children with chronic disabilities must reconstruct their personal lives, which can be unpredictable, cyclical, and intense.22,24
Autism spectrum disorders (ASD) are among the most isolating of all disorders for parents.35 Although counseling support is recommended,26 there may not be time given the multitude of demands faced by working parents. Therefore, the pediatric PT may play a dual role of PT plus “listener,” “confidant,” and “counselor”—though untrained to manage the emotions that arise.27 Similarly, this may blur the professional boundaries, making it difficult to function in a professional role. Therefore, the pediatric PT may refer the family to a local support group. Indeed, parents of children with ASD who received social support, especially informal support, had lower scores of depression, anxiety, and anger.28 However, in parents of children with intellectual disabilities, this type of informal support actually correlated to increased parental anger and decreased parental wellbeing.24,29,30
Terminology of Compassion Fatigue and Burnout: The Clinician
Compassion fatigue has been explored in physicians,31–34 nurses,35 and other health care professions,36 but not in pediatric PTs. It is defined as a slow onset of sadness, emotional exhaustion, disillusionment, and worthlessness by people who care for others.36 Over 50% of professionals in the health care service industry are at significant risk for compassion fatigue, which includes components of burnout.36
Burnout has been studied among physical therapists in orthopedics,37 rehabilitation hospitals,38 and brain injury rehabilitation units,39 but not in pediatric PTs. Burnout is associated with prolonged exposure to interpersonal stress, emotional exhaustion, reduced performance, and decreased sense of accomplishment.40 It occurs when the professional is empathically engaged with a client but does not have coping methods and resources to manage the complex thoughts and emotions that arise.31,33,34 Busy clinicians often ignore the early warning signs of compassion fatigue and burnout due to feelings of isolation within the health care arena.31,33,34 To combat these feelings, the most important skill is the clinician's ability to “give themselves permission” to practice self-care.31,33,34
Neurobiological Responses: The Clinician
Neurobiological alterations in clinicians repeatedly exposed to compassion fatigue and burnout include changes in mirror neurons,41–44 the amygdala,45–49 the autonomic nervous system,45,49 and empathic neural circuits.47–50 For example, when sharing one's grief, another may feel automatic sensory responses (eg, muscle tightening, stomach churning) while cognitive factors (eg, perspective taking) and emotion regulation (eg, intention, objectivity) must work to balance the system.51,52 These responses require internal awareness to mediate and control because they use different neural pathways.48,49
Cognitive empathy (eg, “I understand what you feel”) and emotional empathy (eg, “I feel what you feel”) use different neural receptors and neural circuits.50,51 Cognitive empathy is related to perspective taking, while emotional empathy is related to emotional “contagion” and personal distress.50,51 People who exhibit emotional empathy are most at risk for emotional exhaustion that leads to compassion fatigue and burnout.50,51 Therefore, an emphasis on student training programs that teach about differences in cognitive empathy, as distinct from emotional empathy, may be beneficial.53,54
Medical students and nurses trained to heighten their attention to viscero-somatic function allowed them to decouple from the sympathetic nervous system (SNS) response.54 When the executive functioning of the frontal lobe goes unchecked by sympathetic nervous system “flooding,” the release of reactive, irrational, and habitual responses occur in the face of unawareness.55 It is the parasympathetic nervous system (PNS) that accounts for the feelings of irritability and emotional numbing typically seen in compassion fatigue and burnout.55 Therefore, the sympathetic and parasympathetic systems function as a pendulum, moving from hyper-arousal (SNS) to under-arousal (PNS) in situations where one may be unaware of the personal impact of another's sorrow.55
Another neural structure, the hippocampus, is important in memory and the feed-forward mechanism to the prefrontal cortex.48 When stressed, it activates cortisol and norepinephrine, which alter accurate cognitive evaluation of experience.56 The pediatric PT's past personal experiences play a central role in compassion fatigue and burnout, because these memories are vulnerable without personal awareness and cognitive strategies.56 Again, it appears that strategies for coping and resilience must first address the need for awareness before any other protective mechanism can take effect.48,55,56
Altogether, the cumulative results of the stress response have been described by psycho-neuro-immunologists as the allostatic load, which arises from overactive or inefficiently managed stress.57,58 Excess allostatic load leads to immunosuppression, cardiovascular dysfunction, digestive system dysfunction, accumulation of abdominal fat from hypothalamic-pituitary imbalance, loss of bone minerals, reproductive impairments, and atrophy of the limbic system.57,58
Terminology of Compassion and Empathy
Compassion is often confused with empathy, although they are different yet interconnected concepts. Compassion is a process that involves recognition, understanding, emotional resonance, and concern for another's distress or pain. It differs from empathy in that it includes the motivation to end this suffering. Compassion fatigue is believed to arise from “too much compassion.” However, the fatigue associated with helping others is not based on excessive compassion; rather, it is based on empathic distress from lack of emotion regulation.59
To explain, interoceptive and exteroceptive input drive different neural pathways for empathic responses.48,60 Cognitive empathy arises from the dorsal area of the cingulate cortex and connects to the supplemental motor area, which connects directly to the spinal cord.60 This link to skeletal movement reveals the need for the action orientation often accounted for in empathic responses.60 While both compassion and empathy have action-orientation mechanisms, compassion is approach-oriented, while empathic distress is withdrawal-oriented.60 Therefore, the mitigating factor is one's own ability to be selfaware and have knowledge of one's emotions. With the wisdom of cognitive empathy, the pediatric PT can tune in to his or her interoceptive awareness and evaluate the emotional cost.48,60 In other words, poor interoceptive awareness causes empathic distress, but emotion regulation via interoceptive awareness can create compassion through cognitive empathy.59,60
Of interest, the PNS correlates with compassion responses by inhibiting heart rate and promoting sustained outward attention with prosocial behaviors.61 In contrast, the SNS changes, such as increased heart rate, skin conductivity, and cortisol spikes, occurred with empathic distress similar to physiological responses for fear and anxiety.61 Therefore, one can literally “catch” the physiological stress of another, suggesting specific health risks for those who work with stressed individuals.61–63
Can Emotion Regulation Be Taught?
Emotion regulation creates a foundation for well-being, coping, resiliency, and longitudinal growth.31–34,48,49,54,58,59 It is cultivated by mindfulness, an ongoing, evidence-based practice of nonjudgmental, nonreactive, present-centered attention.31–34,48,49,53,54,56,58 It is different than other meditative practices because it seeks to broaden rather than focus attention.31–34,58 Although emotion regulation begins with a focus on one's breathing, this attention regulation allows for more open monitoring of broad attention to all sensations, thoughts, and emotions. In this way, it integrates readily accessible viscerosomatic awareness with cognitive awareness.31–34,47–49,53,58
Specific tenets of mindfulness are particularly helpful for regulating emotions. For example, decentering, also known as reperceiving, allows the reappraisal of emotions so that thoughts and feelings remain objective.48,53–58,63,64 An open and curious attitude limits reactivity and rumination.64,65 With the breath as an “anchor,” the focus shifts to the body, where awareness of sensations stimulate unique (bottom-up) neural networks to dampen the sympathetic nervous system.52,58,64 Researchers found that only 5 days of meditation were sufficient for this specific neural activation to regulate the flood of emotion via heightened awareness, labeling, and curiosity.66,67
Numerous studies offer evidence for lasting, positive change in nonclinical samples after offering mindfulness over cognitive reappraisal, relaxation training, and/or physical activity.31–34,49,64–66 In randomized trials, medical students and physicians exposed to an 8-week mindfulness-based stress reduction (MBSR) curriculum had significantly reduced distress over time,31,34 as did mothers of children with developmental disabilities.67 Recent evidence shows that a shortened version of the formal MBSR program for primary care physicians (18 hours of formal training over 5 sessions, with 10 minutes of daily home practice) had direct benefits, sustained after 9 months, on positive affect, well-being, job satisfaction, quality of life, and compassion.68 The modified program included training in mindful meditation, mindful communication, mindful listening, and compassion for self and others.68,69
SUBJECTS
Inclusion criteria were to have worked exclusively in a pediatric physical therapy setting, serving children from birth to 5 years since graduation from an entry-level physical therapist education program. It was important to hear from experienced and novice pediatric clinicians so that curricular decisions could represent a broad population of pediatric PTs. A more narrow focus on clinicians who serve young children would gather information about the parent-therapist connection in the home setting. Of the 25 data sets collected, 6 individual interviewees had the following experience: >25 years (2), 15–20 years (2), and 10–15 years (2).
METHODS
Design
A survey (Appendix 1) was sent to the American Physical Therapy Association Section on Pediatrics member listserv and to each state's early intervention director (EID). EIDs were asked to disseminate the survey link to their pediatric PTs. Forty surveys were returned, of which 15 were excluded for the following reasons: caseload included 50% outpatient care, exclusively school-based care, lack of 0–5 care, primarily school-based care.
An optional face-to-face, audiorecorded interview was offered as an alternative to the survey. Six participants consented to semistructured, audiorecorded interviews (3 by each investigator) in public meeting spaces.
Methodology
Grounded theory70 was used to analyze interview data and to inductively uncover a curricular model based on responses to the survey and interviews (Appendix 1). Derived from a theoretical perspective of social interaction, questions focused on how participants perceived their work with children and families who challenged their personal wellbeing. Therefore, theoretical sampling was critical for the development of a curricular model that would represent the voices of the participants and be generalizable to the larger population of pediatric PTs.70
Survey questions inquired about years in the field, what the PT had learned about self-care during physical therapist education, and what thoughts and feelings they encountered when managing stressful interactions with families that may have experienced chronic sorrow. Individual 30–45 minute interviews were conducted because investigators wanted to sit face-to-face with participants to be able to fully understand their personal experiences and ask probing questions as needed. Although the same questions were asked of interviewees and survey respondents, probes such as “How did that make you feel?” could be asked in the interview format. Participant stories could clarify and add depth where survey responses could not. Triangulating data sources from dual data sets allowed for a representative, consistent, and transparent account of participant experiences.70 Investigators used the constant comparative method, wrote memos on investigator bias, and piloted the interview questions prior to sending them to participants.70 Theoretical saturation was met, and negative findings for each question/item are detailed in Table 1.
Both investigators worked together and separately to read and re-read each survey and interview transcript, line-by-line, and assign open codes.70 Next, axial codes were discussed in weekly meetings and consensus was reached prior to creating categories.70 Once categories were formed, a central theory was considered and verified by the data and the literature review.70 The investigators then developed a curriculum based on mindfulness theory, which emerged from the voices of participants, continually checking the data to verify verbatim statements and the extracted codes.70 This regular return to the data allowed investigators to focus on the core phenomena that would guide the development of a curricular model.70 After the curricular content was finalized, the 6 participant interviewees were sent the draft to confirm content. All 6 interviewees verified that the results accurately represented their responses and that the proposed curriculum contained information that would benefit the new graduate. The final curriculum is represented in Appendix 2, with student objectives and resources suggested in Appendix 3.
RESULTS
Two categories guided curricular development in this study. The first, emotional empathy,50,51 represented the overwhelming emotions felt by participants who struggled with professional boundaries that arose from being in the family's home for an extended period of time. Several participants stated that the home environment made it “personal,” which meant that emotions were more confronting and raw. Additionally, feelings of self-doubt arose from wanting to “fix” the child and not being able to “deliver” what the grieving parent wanted.
Participants’ most frustrating emotions represented moral distress due to parental negligence, causing feelings of “hopelessness.” Despite contacting child protective services, pediatric PTs did not witness improvements for the child, or were “fired” by the family attempting to advocate for the child. Finally, feelings of guilt arose for participants due to the “elephant in the living room,” in which the PT was aware of the child's diagnosis and prognosis but the family was not. This created an emotional division between parent and PT and an internal struggle for the PT. Without strategies for self-care, emotional exhaustion arose in this subgroup.
The second category, cognitive empathy,50,51 represented the ability to find resilience based on having an epiphany that led participants to care for themselves first, “let go” of self-blame and perfectionism, and allow the family's grief process to unfold without emotional attachment. This subgroup of participants had to reshape their professional roles by learning coping strategies (eg, breathing, meditation, reframing, patience, etc) to manage challenging situations.
Curricular recommendations were offered in response to questions 9 and 10 (Table 1) and included a variety of strategies for selfcare and well-being. Participants who learned to disentangle themselves from their emotions, remain objective, focus on their body sensations when stressed, and refrain from perfectionism had the most enjoyment in their work. PTs who chose to protect their self-worth stated that their interventions were “good enough.” Those who chose emotional presence could attend to the “human connection.” In all, the data gave strong support for self-awareness and emotion regulation as critical for resilient pediatric PTs. These constructs are represented within the theory of mindfulness.31–34 See Table 2 for compiled interview and survey responses.
Table 2: Compilation of Interview and Survey Responses
Table 2: Compilation of Interview and Survey Responses continued
Table 2: Compilation of Interview and Survey Responses continued
DISCUSSION OF CURRICULAR RECOMMENDATIONS IN PT EDUCATION
In this paper, we have provided terminology to discuss distress among pediatric physical therapists, described the experiences of pediatric PTs who encounter chronic sorrow in their daily work, and used the results of interview and survey data to offer a curricular model to address student's emotional well-being. Emphasis on explicit curricular content in the area of self-care, resilience, and well-being is currently lacking in physical therapist education.28–31,64,74 By-products of self-care curricular programs are improved health care utilization, diminished use of medications, enhanced decision making, safe practices, better adherence to medical treatments, increased motivation to make lifestyle changes, improved sense of community in the hospital setting, and patient satisfaction.72,73
Specific course content that addresses chronic sorrow is necessary. The PTs in this sample recommended that compassion fatigue and/or burnout is best prevented with course content supported by the theory of mindfulness. Appendix 2 represents the voices of the participants who shared their stories with us. Based on direct quotes, it illustrates a proposed curriculum that can be inserted at any stage of a physical therapist education program, and adjusted to meet the needs of both students and faculty. It has been created for 8 weekly meetings, but could be adjusted for 16 weeks based on the depth and breadth desired. To assist with course preparation, Appendix 3 offers student objectives, audio and video material, and evidence-based articles for shared learning and discussion points. These concepts and pedagogical strategies may be applicable to any practice pattern and a variety of courses in the graduate years.
Finally, we support a call to action for interprofessional collaboration that may include psychology, education, medicine, occupational therapy, speech-language pathology, coaching, health sciences, social work, and nursing departments to promote student emotional health and well-being within the graduate physical therapy curriculum. The Center for Teaching at Vanderbilt University75 offers a comprehensive platform for innovation, discussion, and shared goals. Such a website may serve as a starting point for collaboration and planning within PT programs who want to develop self-care curricula for their students.
Limitations and Future Research
Limitations of this study included researcher and participant bias. Researchers shared their own stories with one another and encouraged participants to offer their “ideal” curriculum for consideration. The online survey questions prevented in-depth discussion to clarify points expressed. As the researchers assigned codes and categories, they made inferences to combine responses between interviews and survey responses. Future research should assess the long-term outcomes of a mindfulness curriculum on physical therapist education. As programs begin to adopt this well-established practice, research on patient satisfaction, student empathy, and compassion is needed.
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Appendix 1. Survey
We are pediatric PTs and researchers interested in learning about your experiences serving children with chronic disability and working with families who experiencechronic sorrow.
Chronic sorrowis a normal, cyclical occurrence of grief emotions based on a desire to have reality be other than it is, as in the case of a family who navigates life with a child who has a disability. It includes regular “triggers,” which bring attention to the disparity between reality and wishfulness, which can happen as a child fails to meet early developmental milestones, lacks readiness for preschool, or wants to attend a school dance.
Appendix 2. A Curricular Model for Self-Care
Appendix 3. Objectives by Lesson and Faculty Resources/Materials
