Katherine Patterson Kelly

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. Aim: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors. Design: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology. Data sources: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report. Results: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality. Conclusion: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings.

Palliative Care as a Standard of Care in Pediatric Oncology.

The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision‐making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members. Pediatr Blood Cancer

A Survey of Pediatric Oncology Nurses’ Perceptions of Parent Educational Needs

Educating parents of children with cancer is a primary nursing responsibility in pediatric oncology. A survey using Delphi techniques was conducted with nurses attending a Children’s Oncology Group Nursing Workshop to identify priority educational topics from pediatric oncology nurses’ perspective. In round 1 of the survey, nurses were asked to identify 5 priority educational topics and 5 topics they spend the most time teaching parents. Twenty-four educational categories were identified by 199 nurses, and responses were sorted by category and frequencies tabulated. Information about treatment was the most frequently cited priority. Bone marrow suppression (BMS) was the second most important priority and was the topic nurses spent most time in teaching. Round 2 of the survey was sent via e-mail to 132 consenting participants from round 1. Nurses were asked to rate the importance of the categories from round 1 (presented in random order) during 4 time periods (diagnosis, initial treatment, maintenance, and off therapy). Nurses reported different teaching priorities across the continuum of treatment. Of note, teaching about end-of-life issues and alternative therapy were ranked as low in importance across all time points. These findings can be used to inform educational programs and materials development for parents of children with cancer.

Academic Continuity and School Reentry Support as a Standard of Care in Pediatric Oncology

Clinicians agree that return to school after diagnosis promotes the positive adjustment of children and adolescents with cancer; however, the school reentry process can present challenges. The aim of this review was to critically evaluate the literature on school reentry support for youth with cancer. Seventeen publications were identified. School reentry services were well‐received by families and educators; increased teacher and peer knowledge about childhood cancer; influenced peer and educator attitudes toward the patient; and improved communication and collaboration between patients/families, school, and the healthcare team. Evidence supports a strong recommendation for school reentry support for youth with cancer. Pediatr Blood Cancer 2015.

Making the right decision for my child with cancer: the parental imperative.

Background: Making major treatment decisions with life-altering consequences is a significant challenge faced by parents of children with cancer. The unique experience of parents is not well represented in the growing literature on cancer treatment decision making (TDM). Objective: The objective of this study was to describe the process of parents making major treatment decisions for their children with cancer. Methods: Using grounded theory methods, we interviewed 15 parents of 13 children with cancer facing major treatment decisions. Results: Parents’ determination to make the right decision was both a demanding responsibility and a natural extension of the parental role. Everything parents encountered and undertook during the TDM process was in the service of making the right decision for their child. All parents expressed conviction that they had made the right decision, but conviction was tempered by doubts triggered by the pervasive uncertainty of the childhood cancer experience. Parents described limited TDM participation by extended family members and the affected children themselves, asserting their primary responsibility to act as their child’s surrogate in partnership with the child’s medical team. Conclusions: Making the right decision for one’s child under challenging conditions is an extension of the parental obligation to act in the child’s best interest and a responsibility that parents claim as their own. Implications for Practice: The findings from this study can serve as the foundation for future studies to refine the conceptualization of TDM in childhood cancer, which will in turn ground the development and evaluation of interventions to support parents in their critical TDM role.

Identifying a conceptual shift in child and adolescent-reported treatment decision making: “Having a say, as I need at this time”

Professional organizations and governments recommend child and adolescent involvement in cancer treatment decision making (TDM) despite minimal evidence that children prefer involvement, how best to include them, and the result of doing so.

Processing Information After a Child’s Cancer Diagnosis—How Parents Learn A Report From the Children’s Oncology Group

Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child’s initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child’s first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child’s diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by health care providers. Multiple factors influenced parents’ ability to process educational information received during their child’s initial hospitalization. Findings suggest that nursing practices should include assessing for influencing factors, providing anticipatory guidance, and incorporating parents’ preferred learning style into the educational plan.

Establishing Feasibility of Early Palliative Care Consultation in Pediatric Hematopoietic Stem Cell Transplantation

Children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) encounter a number of distressing physical symptoms and existential distress but may not be afforded timely access to palliative care services to help ameliorate the distress. This feasibility study investigated the acceptability and outcomes of early palliative care consultation to promote comfort in this population. A longitudinal, descriptive cohort design examined both provider willingness to refer and willingness of families to receive palliative care interventions as well as satisfaction. Feasibility was demonstrated by 100% referral of eligible patients and 100% of patient and family recruitment (N = 12). Each family received 1 to 3 visits per week (ranging from 15 to 120 minutes) from the palliative care team. Interventions included supportive care counseling and integrative therapies. Families and providers reported high satisfaction with the nurse-led palliative care consultation. Outcomes included improvement or no significant change in comfort across the trajectory of HSCT, from the child and parental perspective. Early integration of palliative care in HSCT is feasible and acceptable to families and clinicians.

Caregiving demands and well-being in parents of children treated with outpatient or inpatient methotrexate infusion: a report from the Children's Oncology Group

Parent well-being is affected by their child’s oncology treatment regimen and associated caregiving demand. Parental caregiving demands and well-being were evaluated in 161 parents from 47 sites whose child was randomized to receive either a 4-hour (outpatient) or 24-hour (inpatient) methotrexate infusion during consolidation treatment for acute lymphoblastic leukemia. A majority of patients randomized to the 4-hour infusion (66.3%) received the infusion as an inpatient. The most frequently reported reasons for this were lack of an adequate outpatient facility (53.6%) and physician preference (25.0%). There were no differences between caregiving demand and well-being total scores by either randomized or actual infusion location with one exception: well-being scale fatigue scores were significantly greater (P=0.001) for parents whose child received the outpatient infusion. Mean total well-being scores for both the 24-hour arm (µ=42.6; SD 16.2) and the 4-hour arm (µ=40.6; SD 14.1) were elevated compared to healthy control populations. Additional research is needed to characterize impact of treatment setting on parental caregiving demand and well-being during their child’s treatment for acute lymphoblastic leukemia. Investigators examining impact of treatment location in randomized clinical trials need to control for institutional variability in outpatient care delivery resources.

Declaring your legacy of excellence in oncology.

O ncology educators, administrators, clinicians, and researchers are committed to excellence in providing evidence-based care and leadership, in developing new knowledge that can be used to improve care outcomes and care systems, and to excellence in influencing healthcare policy that will benefit all who are affected by cancer. Commitment is an admirable qualityVit is, after all, a pledge to a positive course of action. Our commitment to patients and their families, to team members and care settings, and to care excellence, prevention, cure, and advocacy is unmistakably strong in oncology. But commitment without a plan that both guides and inspires could put us at risk of working very hard to improve care and care outcomes with only contained success that is limited to an immediate situation. Commitment that does not extend beyond a pressing immediate situation risks personal and professional disappointment or a sense of work and dreams unfinished despite best intentions and much personal effort. Instead, we need a well-articulated, longer-term plan beyond ‘‘this patient,’’ ‘‘this study,’’ ‘‘this role,’’ or ‘‘this project’’Va plan that has real meaning and inner significance for us. Because we are vulnerable to best intentions specific to an immediate or short-term purpose that may not be embedded in a longer-term plan, we could particularly benefit from a formal process of declaring our legacy in oncology. Declaring a legacy in oncology can be at the level of each of us as individuals and at the level of groups of us such as a legacy declared by a team, a department, or an entire system of cancer care for a nation. The act of declaring a legacy begins almost immediately to provide benefit in terms of guiding our efforts. A declaration of each person’s individual legacy in oncology is an explicit statement of a plan to achieve ‘‘that which is better’’ in oncology, and the something better is of personal and professional importance to the person making the declaration verbally and in writing. This articulated plan is an individual’s resolve to pursue a committed direction in order to achieve one or more highly valued end points. It is more than ‘‘doing good works’’ as the legacy seeks tomake a lasting positive change in the state of what is. In this way, the declaration becomes a guide to achieving what we have proclaimed to be our legacy. A legacy in oncology is what we are determined to make better by our focused efforts. A legacy is more rewarding than either mission statement or strategic plan or even the combination of these two. A legacy is not what our patients, teammates, colleagues, or our students expect us to giveVrather it is what we want to give to them based on our interpretation of our interactions with these groups about what needs to be better; it is about what inspires us most regarding these identified needs. An individual’s legacy does not replace or compete with other patient, family, team, or system priorities and may in fact be quite complementary to those. A legacy may be about how we want to be professionally remembered. Although a legacy is declared, it is not completely within the control of the individual or the team or group making the declaration. However, a key value of declaring the legacy is the inherent act of reflecting on one’s life or career purpose and priorities. The act of declaring thoughtfully combines purpose, priorities, values, and strategies. Once the declaration is made, returning regularly to review, revise, and update the legacy is central to maintaining the focus and perspective on the status of the efforts and focus. Regularly revisiting the declared legacy also reaffirms our efforts. Giving at the individual, team, or system level always requires a plan. A declared legacy is having a plan that inspires and sustains our efforts. We have a much better chance of giving what we seek to give and of making our ‘‘something better’’ if we have declared our legacy. Our very best,