The purpose of the study was to determine the types of supportive measures found to be most helpful and realistic for families of children with cancer during the first three months after diagnosis and to identify facilitators and barriers toward the implementation of these measures. Early support interventions improve coping behaviors and facilitate adaptation and have been recommended in adult populations (Chien, Wang, Chien, & Hwang, 2011; Sekse et al., 2014). This pediatric cancer program has tried to sustain supportive programs such as classes and support groups in the past, but has not been able to sustain participation in them. It is unclear why. The hope was by investigating this question, the researcher would be able to identify possible interventions and develop an implementation plan to facilitate familial adaptation during the cancer treatment process.
It has long been felt that the lack of a nurse coordinator or clinical nurse leader was hindering the coordination of care within the program. Other pediatric cancer programs provide for this as an integral part of their healthcare team (Howitt, 2011). Reviewing the patient/family and team member concerns would help validate the need for the provision of this valuable resource. The inclusion of a clinical nurse leader (CNL) in chronic care programs has proven to be an effective way to improve patient care and patient safety outcomes (Bender, Mann, & Olsen, 2011; Coleman, 2013; O’Grady & VanGraafeiland, 2012). The American Association of Colleges of Nursing (2013, p.4) describes the CNL as a person who "...assumes accountability for patient-care outcomes through the assimilation and application of evidence-based information to design, implement, and evaluate patient-care processes and models of care delivery. The CNL is a provider and manager of care at the point of care to individuals and cohorts of patients anywhere healthcare is delivered." This role would be ideal in addressing many of the concerns within this pediatric cancer program due to the level of care coordination required, the number of specialty health care professionals on the team, and the higher need for evidence-based practice integration at the bedside.
Methods:
Descriptive single embedded case study of a south Texas children’s cancer program using purposive sampling of parents of children with cancer and various members of the health care team. Total sample included 21 participants (15 HCT members and 6 parents). A case study provides a comprehensive view from all perspectives and data sources and does not require control over or manipulation of events. This case study was descriptive in nature because the researcher examined thoughts and feelings rather than looking for a specific cause of those feelings. Multiple sources of data included: demographic questionnaire, recorded interviews, observations of family activities on the unit/clinic, and research field notes. Interviews and observations continued until data saturation, when no new themes or concepts began to emerge. The demographic questionnaire provided descriptive statistics for participants. Interviews were transcribed and N-VIVO-9 software was used to analyze and code concepts and recognize themes by cross-matching across all interviews and field notes.
Results:
It was thought the findings would focus on parental needs and perceived barriers, but in fact, the study also revealed underlying concerns within the health care team collaboration and overall resources for the program. Identified themes included: facilitators and barriers of family adaptation and power differentials between team members hindering effective collaboration.
Facilitators included an intact nuclear family, extended family and community support, higher education levels or professional employment that allowed more flexibility with work schedules and larger financial resources. Also, parents that sought out information tended to have more positive perceptions of their treatment experience and thus adapted more easily. Opportunities for sharing between families was reported as helpful after the initial shock from the diagnosis wore off, but no program activities to facilitate this type of interaction existed. Patient education delivered was inconsistent and dependent on large volumes of reading material and rushed prior to discharge. Education during treatment transitions was nonexistent. Lack of education or communication regarding upcoming changes in the treatment plan led some parents to feel abandoned and increased their distress.
Barriers to adaptation included families with a lower socioeconomic status, single parent families, financial stress, previous psychological concerns such as depression and anxiety, and poor communication regarding medical care expectations completed by parents. There was a perceived difference in levels of psychosocial support offered to different families. These included counseling, case management follow up, and financial support. This led some families to report feeling more isolated when the same services were not offered to them. This was unintentional on the part of the healthcare team and could have occurred during a change in support service personnel (social worker and case manager). However, it did identify a gap in the services provided when these professionals are absent from the team.
Perceived power differentials reported from various members of the team led to delays in available interventions due to fear of repercussions from the providers even when medical orders were not necessary to implement an intervention. Some members of the healthcare team felt they were not allowed to provide the services they could offer until formally consulted by the patient’s oncologist even when their services may have been most helpful prior to a formal cancer diagnosis and could be offered without a medical order. All participant members of the healthcare team reported they did not wish this to be the case and wanted to reduce the perceived power differentials to improve the patient/family care experience.
Conclusion:
In order to address these concerns a system for early identification of family stress and individualized education needs should be implemented and repeated at key time frames during the treatment for childhood cancer. These time frames include the first two weeks after diagnosis, the two-three months following diagnosis, and at each treatment phase transition period. Repeating education information during the first two weeks is crucial to ensure that key treatment information is retained while parents are still in shock and adjusting rapidly to their child’s needs. Parents are most receptive to information after this shock has worn off around two to three months after the diagnosis. This is when parents reported they are ready to learn, both from the staff and from other families going through similar situations. Facilitating family-based activities that allow for sharing coping mechanisms may help encourage adaptation during this period.
In the past, difficulties with team collaboration and communication has caused a breakdown in services offered. A clinical nurse scientist was formerly an integral piece in this process, but the position was decreased to a part time staff educator several years prior to this project. The current resources do not allow for proper mentoring of staff in patient education techniques or for updating the information based on the most recent evidence-based practice. Lack of consistency related to the provision of accurate patient education materials and role modeling the education delivery has led to increased incidence of patient safety concerns. It is recommended that a return of this full time position be provided to serve as a role model to staff and a coordinator of patient education throughout the treatment process.
Decreasing the power differentials and improving communication between team members and helping to identify clear expectations for each member’s role within the team will improve the collaboration and coordination of patient care. It will reduce delays and improve safety by adhering to family-centered care guidelines. Making sure information is shared with parents with the appropriate support system available at delivery will help improve trust and communication effectiveness and inclusion within the plan of care. The provision for a full time clinical nurse leader is strongly recommended to serve as a lateral integrator; someone who will support the frontline staff by providing patient education resources, role modeling the education delivery, reviewing quality improvement and safety processes, bringing evidence-based practice to the bedside, and facilitating a focus on team communication and collaboration. Doing so will improve the overall patient care outcomes, satisfaction scores, and increased financial resources to the program. This in turn, can only help improve the strength and quality of the program and enhance the patient/family experience.
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