Bridging the Gap in Care for Children Through the Clinical Nurse Leader

Erin L. O'Grady, Brigit VanGraafeiland


Pediatr Nurs. 2012;38(3):155-158, 167. 

In This Article

Gaps in Care

Numerous gaps exist in the care of children admitted to the hospital for acute and chronic conditions. Many of these gaps are due to lack of coordination in care. Therefore, a liaison between the patient, family, and health care team is needed. CNLs are in an optimal role to improve coordination and eliminate some gaps to improve overall quality of care because they can serve as lateral integrators and team managers across the spectrum of care for children. In today's dynamic health care system, patients and their families meet multiple members of the health care team, so it is important there is someone who can coordinate all aspects of care and integrate the processes presented by the different specialties.

CNLs can fulfill this role through a variety of means, such as a) transitioning patients from one health care setting to another (Stanley et al., 2008); b) working with county health departments during legal debates (Stanley et al., 2008); c) leading interdisciplinary rounds; d) answering follow- up questions after important conversations with physicians or nurse practitioners; e) education regarding care, follow up, and prognosis; f) identifying changes in a patient's physical or psychological status over a period of time (Stanley et al., 2008); and g) serving as a representative of the health care team who sees the patient five days per week, as opposed to many nurses who see patients three times per week. As a representative who does not implement daily care activities, the CNL is able to oversee the entirety of care, and therefore, work with all health care professionals to integrate all forms of care. The CNL can serve as the "go-to person" for all health care professionals, there- fore integrating ideas from all aspects of care. Lastly, a lateral integrator can serve as a familiar face during a time when patients see many providers who distribute a wealth of care and information during a hectic hospitalization. This can be especially important to pediatric patients and their families.

Clarke and Fletcher (2003) found that parents of children with cancer or other chronic conditions had concerns about communication with medical and nursing professionals. Further, parents may not always have enough time to ask questions, or they may think of questions after speaking with health care professionals. However, due to lack of a care coordinator, there may not be a professional to whom they can ask a variety of questions outside of defined appointment times. The communication barriers are not found solely in the inpatient setting. For example, Stevens et al. (2006) show that many parents reported communication and coordination problems with managing children in an outpatient and home health environment. Parents also noted that inconsistency with nursing staff during outpatient therapy was stressful for children, and they recommended a centralized coordinator be in charge of the outpatient system for continuity and communication issues (Stevens et al., 2006).

Research demonstrates that nurses and school personnel offer few activities and services for facilitating school re-entry for children with cancer or other chronic illness (Moore, Kaffenberger, Goldberg, Oh, & Hudspeth, 2009). Moore et al. (2009) reported that the communication between nurses, school personnel, and parents necessary to provide effective services to patients and their families is insufficient. Nurses and school personnel recommend that a liaison position be created to facilitate coordination of this task (Moore et al., 2009).

According to Clarke and Fletcher, (2003), parents often lack knowledge related to their child's diagnoses. Besides an incomplete understanding of the treatment currently being provided, many survivors of pediatric cancer, for example, lack knowledge of their past treatments, especially in the area of future complications related to the therapy received during cancer treatment (Bashore, 2004). Bashore (2004) recommends that education about late complications be implemented more heavily and that a summary of treatment be provided for cancer survivors.

Nursing documentation relating to the care of children could be improved to provide better continuity in care. For example, Oakes, Anghelescu, Windsor, and Barnhill (2008) noted a lack of documentation of pain reassessment for pediatric cancer patients in inpatient settings. Another example in which documentation and assessment may be lacking is in the area of fatigue related to cancer. Few tools are available and in use for assessing fatigue in this population, even though fatigue has a large impact on daily life (Linder, 2005).

A component of the CNL role is to serve as an outcomes manager and an information manager (AANC, 2007). Serving as an outcomes manager requires the CNL to use best evidence to change practice and reach optimal client outcomes; serving as an information manager requires the CNL to use patient information systems at the point of care (AANC, 2007). Both roles can be used to design documentation systems that would monitor the patients' reports of clinical symptomatology so these side effects could hopefully be managed better.

Parents often feel as though they need to serve as advocates due to perceived errors in treatment, perceived understaffing, or perceived lack of coordination and communication among health care professionals. Clarke (2006) reports that parents often feel the need to educate themselves to cope with these perceptions and to serve as better advocates. Not only can the CNL serve as an advocate for patients, but also as an advocate for families during rough times. Therefore, addressing questions and uncertainty early in care is important. Besides lack of psychosocial support for patients, research has shown that providing psychological and social support may be highly beneficial to parents of children diagnosed with a chronic illness, such as cancer (Bayat, Erdem, & Kuzueu, 2008). However, programs and information regarding this issue have not always been available or offered to parents.

Nurses, especially those prepared at the master's level, should be part of ongoing research studies. Although nurses at all levels can be part of ongoing research and implementation of evidence-based practice, education at the master's level exposes nurses to more research theory and provides a higher level of research interpretation. There are many aspects of the care of children with cancer in which further research could be conducted to determine the best practice skills. If there are gaps in knowledge, then research can be conducted to eliminate some of the gaps. The implementation of evidencebased best practices can improve nursing practices for children and families battling cancer or other chronic conditions.


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