Change in the Parent-Clinician Relationship Throughout the First Year of Treatment in Pediatric Oncology

Abstract

IMPORTANCEChallenges in the therapeutic relationship between clinicians and parents of children with cancer have been shown to emerge immediately after diagnosis, but little is known about whether such relationships improve over time. OBJECTIVE To better understand the potential evolution of parent-clinician relationships over the first year after diagnosis of pediatric cancer. DESIGN, SETTING, AND PARTICIPANTS This survey study was conducted from November 2015 to September 2020 at Dana-Farber Cancer Institute/Boston Children's Hospital and Texas Children's Hospital. Participants were oncology clinicians (attending physicians and fellows or nurse practitioners) and parents of children (aged <18 years) with a cancer diagnosis. Surveys were completed at study enrollment (soon after diagnosis [baseline]) and at the 3-month and 12-month follow-up. EXPOSURES Children had to have had at least 3 previous clinical visits with a primary oncology clinician. MAIN OUTCOMES AND MEASURES Survey instruments included the parent and clinician versions of the Relationship Challenges Scale, and factors associated with changes in relationships, including parental, clinician, and health care system attributes, were measured. RESULTS Survey participants included 150 parents (118 women [78.7%]; 98 with White race and ethnicity [65.3%]) and 49 clinicians (39 [79.6%] women; 39 with White race and ethnicity [79.6%]).Parents reported on 175 relationships with clinicians, and clinicians reported on 98 relationships with parents at all 3 time points (baseline, 3-month follow-up, and 12-month follow-up). Of the 175 relationships, 33 (18.9%) were considered to be challenging by parents at baseline, 27 (15.4%) were considered to be challenging at the 3-month follow-up, and 32 (18.3%) were considered to be challenging at the 12-month follow-up. Of the 33 challenging relationships at baseline, 20 (60.6%) resolved at the 12-month follow-up, whereas 13 (39.4%) had persistent challenges. However, 19 relationships that were not challenging at baseline had new challenges at the 12-month follow-up, corresponding to 59.4% of all challenges at the 12-month follow-up. No clinician behaviors were associated with improvement. Strategies used frequently (Ն50%) by clinicians in their relationships that were associated with improvement included holding family meetings, apologizing, adapting to the parent's communication style, and devoting extra time and attention. CONCLUSIONS AND RELEVANCEResults of this study showed that some parents experienced challenging relationships with their child's oncology clinicians beginning at diagnosis and throughout (continued) Key Points Question How do parent-and clinicianreported challenges in their relationship change over the first year after cancer diagnosis in children? Findings In this survey study of 150 parents and 49 oncology clinicians, nearly 20% of parents experienced challenging relationships with clinicians starting at the baseline survey, with a similar proportion of parents reporting the same challenges 1 year...

Embracing paediatric palliative care in paediatric oncology from diagnosis onwards

“…Early integration also offers the possibility of collaborative work between healthcare professionals. PPC involvement will support the PO team in creating a therapeutic alliance with the CYP and family, 45,46 in establishing goals of care and in aligning these with goals of treatment, in providing anticipatory guidance and integrating QoL metrics 44 . If death becomes likely, it will also facilitate the transition to EoL care, as there is time to build trust and relationships 43 …”