Abstract
Employing a cross-sectional qualitative descriptive design, using individual, semi-structured interviews collected from primary care and specialty clinicians who routinely care for children with medical complexity (CMC) in a largely rural area in central Virginia, this study aimed to better understand the current state of care, the motivations, and barriers for expansion of care for CMC in a semi-rural academic hospital center. Five themes emerged describing the current practice of the participants: (1) complexities of care, (2) compassion and empathy for families, (3) limited resources, (4) essential nature of coordination and teamwork, and (5) proximity to care. Each of the five themes that emerged from our interviews present both challenges and rewards. The theme of compassion for families of CMC is seen as a key potential motivational driver for expansion and reorganization of clinical care for CMC.
Introduction
Children with medical complexity (CMC) are characterized as having 2 or more serious chronic conditions that drive high resource utilization. These patients require a team of highly specialized clinicians to support medically fragile conditions and are often technology dependent [1, 2, 3, 4, 5, 6, 7, 8, 9]. Recently, there has been increased attention paid to CMC because while they represent fewer than 1% of the pediatric population, they account for over 33% of all pediatric health care costs [2, 3]. Caring for CMC poses multifaceted challenges for families and clinicians alike. Family members are not only charged with coordinating complex care plans from multiple specialty clinicians, but also with learning and providing direct medical care for their child at home [10]. Families of CMC spend a median of 11–15 hours per week on direct home care and an additional 2 hours per week on care coordination [11]. In a major Canadian study, CMC saw 13 outpatient physicians and 6 distinct specialists on average [12].
Because of these challenges, many tertiary pediatric centers have moved toward highly coordinated, interdisciplinary, team-based models of care in an effort to drive down costs and improve patient and clinician satisfaction [13, 14, 7]. Such models have allowed for useful innovations like shared care plans, which improve information exchange between families and various clinicians [15]. While in many urban centers, specialized clinicians in complex care clinics offer highly coordinated interdisciplinary care, CMC are cared for in every children’s hospital throughout the country. In rural and semi-rural regions, CMC are often cared for remotely and/or by non-pediatricians. In preparation for the expansion of complex care services, this study aimed to better understand the current state of care and the motivations and barriers for expansion of care for CMC in a semi-rural academic hospital center.
Methods
This study employed a cross-sectional qualitative descriptive design [16] using individual, semi- structured interviews collected from primary care and subspecialty providers caring for CMC in a largely rural catchment area in central Virginia. Participants were recruited through a purposive sampling strategy that included referring primary care doctors and faculty physicians. This study received University of Virginia Institutional Review Board approval prior to enrollment.
Analysis
Qualitative interviews were conducted using a semi-structured interview guide. Responses were transcribed verbatim. Using directed thematic analysis, members of the research team (JKM and JLPO) applied codes to the qualitative interviews line by line. Coded lines were grouped to form inductively derived themes. Final theme development and thematic saturation was reached through consensus among the research team. Trustworthiness was addressed in several ways: by “bracketing” or reflecting on prior assumptions and beliefs about the care process, by allowing for an open peer review and overall audit trail, and by review of the codes and eventual themes by members of the research team [17].
Results
A total of 12 interviews comprised the final sample; participants included 11 physicians and 1 pediatric nurse practitioner who regularly care for CMC. The physicians included four primary care clinicians, five pediatric specialists, two pediatric surgeons, and one developmental pediatrician. Clinicians were evenly divided between male and female, ranging in age from 32–62 years, with a range of 10–35 years in clinical practice with CMC.
All participants directly addressed rewards and chal- lenges of caring for children with medical complexity. Many of the respondents have been caring for CMC long before this label was coined. We opened the interview with an invitation to tell us about their patients who met our definition for CMC; this likely opened the door for the personalized responses of many clinicians. Asking the clinician to keep these patients in mind throughout the interview allowed us to hear of specific examples and stories, enriching the interview.
Five themes emerged describing the current practice of the participants: (1) complexities of care, (2) compassion and empathy for families, (3) limited resources, (4) essential nature of coordination and teamwork, and (5) proximity to care. Themes and representative qualitative exemplars are described in Table 1.
Themes and exemplars relating to the care of children with medical complexity
Themes and exemplars relating to the care of children with medical complexity
As was true for each of the themes, complexity was described as both rewarding and challenging. Working with patients who have complicated, chronic, interrelated conditions was seen as intellectually challenging (Q1, Q2). Primary care clinicians enjoyed the opportunity to work with patients who posed diagnostic dilemmas requiring innovative problem solving. Subspecialists assumed responsibility and ownership for the complexity inherent to their discipline (Q3). Clinicians looked forward to the challenges while also struggling to provide efficient, highly coordinated, compassionate care to a medically fragile population. Challenges of time constraints to manage the complexities of care were universally described (Q4, Q6). In general, participants felt their patients were receiving quality care, often because they extended themselves beyond the constraints of systemic barriers of scheduling, time, and limited resources.
Empathy and compassion for families
Expressions of empathy for the heroic natures of many family caregivers fueled clinicians to extend themselves beyond the resources they had readily available (Q8, Q9, Q11). Frustrations with the paucity of resources often emerged as the clinician spoke with compassion for the caregiver (Q17, Q18). Likewise, complex care patients were described with warmth and emotion, and clinicians expressed that they frequently felt closer to medically complex patients due to the fragile and complex nature of their conditions; this closeness was often a result of having had difficult conversations to set goals of care and manage major life transitions (Q11, Q13, Q14, Q17).
Limited resources
While many respondents had practiced in centers with complex care clinics and welcomed the innovation with its extra resources of time and care coordination, others worried that they might lose their patients to another specialty clinic. Primary care physicians (PCP) specifically worried about their primary clinical role being eroded by another specialty clinic that was dedicated to providing complex care coordination and consultation (Q16, Q17). Primary care clinicians acutely felt the constraints of time, but stated that caring for CMC in the practice kept them current and provided important opportunities for teaching with residents and students (Q20).
All clinicians acknowledged the limited community resources available, especially in nursing care, to meet the needs of their complex care patients, often expressing a sense of injustice in the paucity of resources for the clinician and the family (Q18).
Coordination and teamwork
Of the major themes that arose, by far the most extensive were a multitude of concerns regarding coordination of care and teamwork between clinicians (Q25, Q26). Well coordinated, interdisciplinary care was seen by participants as an essential component to high quality care (Q28). Specialized, circumscribed, subspecialty clinics connected only via the electronic medical record (EMR) were no substitute for having a colleague down the hall or in the same clinic (Q34). Knowing who was responsible for each specific aspect of care was seen as challenging for clinician and family alike. Clarifying and empowering the role of the PCP were important priorities for both primary and specialty clinicians (Q37).
Many participants spoke of the improvements in coordination since the introduction of the EMR. However, it was also clear that there are limitations to the EMR, particularly if it is underutilized or if team members are left out of the EMR communication stream available (Q36). Team cohesion and efficiency are limited when clinicians are not linked via the same EMR, or when clinicians are not in the habit of forwarding notes to other members of the team (Q30, Q33). Identifying one person other than the caregiver who could be relied upon for understanding the big picture of care was central to the notion of quality care (Q38). A care manager or a primary clinician who was familiar with the details of the medical and social situation was key to feeling secure in the delivery of quality care (Q31). Specialty physicians spoke about patients for whom they served as a primary care coordinator due to the complexity within their discipline that allowed them to “call the shots” for most of the medical care (Q15). Specialists were unclear of the role and preparation of the outlying PCPs to care for highly complicated patients, and expressed increased comfort when they had direct communication with PCPs (Q33, Q34).
Proximity with patients
Proximity loomed as an overarching theme, coming up in both patient-clinician interactions and clinician-clinician discussions of cases. Clinicians expressed that they worried the most about their patients who lived a great distance from tertiary care (Q43, Q44). It was noted that patients with disabilities often feel shunned and separated from the larger community, a distance exacerbated when there are geographic barriers (Q12).
Clinicians longed to have the opportunity and the time to be proximate to colleagues and patients (e.g., in the same room at the same time) in order to address the complexity and uniqueness of the patient’s care (Q35, Q60). Clinicians also realized that those closest to a problem (the families) were often likely to have the answers when challenges in care arose (Q29). Indeed, recognizing the family as caregiver, advocate, and expert was described as essential and at times challenging. Knowing a family and feeling close to their realities informed quality patient care. Clinicians noted attempting to coordinate appointments as much as possible for families driving long distances. A bit surprising was the prevalence of the theme of proximity in various discussions, and how closeness or distance infused many of the other themes.
Discussion
This study illuminates motivations and barriers for the care of CMC which have yet to be clearly identified. Each of the five themes that emerged from our interviews present both challenges and rewards. Complexity of care is seen as requiring more time and experience, while also posing a series of stimulating intellectual challenges. Empathy for patients and their families generate emotional challenges, while also generating compassion and kindness for the day-to-day challenges facing families. Limitations of resources are noted by every clinician, are generally seen as adding to the complexity of care, and were expressed with a sense of injustice. The necessity for increased coordination of care takes planning and time while also offering the opportunity for fulfilling partnerships in care. And lastly, the lack of proximity to care is seen as a significant barrier when patients are living at great distances from our medical centers. Proximity is a positive when interpreted as the closeness generated in the long term, often highly personalized relationships between clinicians, patients, and family caregivers. The close nature of relationships often augments the desire for kindness and compassion. Barriers to care have been described previously, often highlighting the need for innovation and a comprehensive approach to these highly complex patients [18]. When considering the expansion or integration of complex care it may be worthwhile to consider the motivations and rewards that come from the care of CMC, as well as addressing the barriers and challenges that are often seen as the gaps in care.
There are inherent limitations to qualitative studies, including the inability to assess prevalence of any one viewpoint. The small sample size derived from a semirural catchment area associated with an academic medical center may not be generalizable to other practice settings. Additionally, generalizability may be impacted because our academic center had started the process of beginning a complex care clinic at the time of the interviews. Therefore, institutional initiatives may have impacted the interviews of the local clinicians working in the institution. However, we included physicians outside of the academic practice setting to include the views of those who were not impacted by the institutional initiatives.
Acknowledging the multifaceted nature of caring for children with medical complexity is central to negotiating the expansion of coordinated care for CMC [19, 20]. Fostering opportunities for team-based decision making will allow colleagues to share in the challenge of intellectually stimulating clinical questions. Reflecting the significance of the emotional content that emerges from long standing relationships and remembering that clinicians often bond closely to their most complex patients will help to assure all clinicians that they will not be abandoning nor losing their patient to someone else. Referring to the expansion of service or a new service for CMC as an extra layer of care can promote unity of care and teamwork [21]. Finding ways to join forces to address limited resources and the need for increased care coordination can build camaraderie and prevent burnout. And lastly, finding opportunities for advocacy as an expression of the compassion that so often emerges when caring for CMC may serve as an added motivation for new or expanded services in any center that has grown accustomed to doing their very best on the behalf of each and every patient.
Footnotes
Conflict of interest
The authors have no real or apparent conflicts of interest to disclose.