Parent and Clinician Perspectives on Challenging Parent-Clinician Relationships in Pediatric Oncology

Mack, Jennifer W.; Jaung, Tim; Uno, Hajime; Brackett, Julienne

doi:10.1001/jamanetworkopen.2021.32138

Cited by 6 publications

(22 citation statements)

References 42 publications

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“…[21][22][23] Our previous work found that not all parents of children with cancer experienced supportive relationships with their children's oncology clinicians, with nearly one-quarter of these parents identifying substantial challenges soon after diagnosis. 9 Such relationships can evolve; however, in the best case, a rough start can become smoother with time.…”

Section: Discussionmentioning

confidence: 99%

“…Candidate variables were based on previous findings and reports at baseline, including parent sociodemographic factors and mental health, clinician factors, and health care systems factors, such as care across transitions. 9 A backward variable selection procedure was used to construct the multivariable model, with a significance level of P = .05 for removal from the model. Mixed-effects multinomial logistic regression models were also used to examine the association between strategies used by clinicians to work with parents and patterns of change in challenges over time.…”

Section: Jama Network Open | Pediatricsmentioning

confidence: 99%

“…8,9 In a previous study, we found that nearly one-quarter of parents of children with newly diagnosed cancer experienced challenges in their relationship with clinicians, including threats to trust and mutual understanding. 9 Similarly, clinicians experienced challenges in more than one-third of their relationships with parents, such as difficulties communicating and delivering the best care. 9 However, the previous work was conducted shortly after diagnosis, and relationships may potentially heal over time as parents and clinicians learn to work together.…”

Section: Introductionmentioning

confidence: 97%

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

et al. 2022

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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...

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Section: Discussionmentioning

confidence: 99%

Section: Jama Network Open | Pediatricsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 97%

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

et al. 2022

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“…As such she was considering refusal of additional cancer-directed therapies to prevent further developmental regression, a course she believed would be in the interest of her child's overall wellbeing. Children with trauma histories, behavioral challenges, transitions in primary caregivers 14 Help parents to create physical and emotional safety for their child 14 Parent Psycho-education, sessions with parents to conceptualize child's trauma/behaviors, in the moment feedback on child's behaviors and parent responses 14 Higher quality attachment relationships, 6,7 positive impacts on cognitive development, 14 long-term benefits to symptoms of PTSD and reduction of mental health diagnosis 13…”

Section: Family Concernsmentioning

confidence: 99%

“…Moreover, many parents of children with cancer have expressed difficulty in finding their voice and role among their child's care team as well as build strong relationships with physicians. 7 This experience can be further exacerbated by cultural differences and language barriers. As such, mental health services that incorporate parents offer a unique opportunity to leverage the plasticity of the early brain.…”

mentioning

confidence: 99%

Regression in Early Childhood Development: An Unintended Outcome of Prolonged Hospitalization?

Dahl¹,

Kroupina²,

Lone³

et al. 2022

Journal of Pediatric Hematology/Oncology

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This brief review outlines a novel case study with targeted literature search. Patient X was a 21-month-old male who was receiving ongoing treatment for stage M MYCN-amplified highrisk neuroblastoma. Patient X's mother was considering refusal of further cancer-directed therapy because of the child's developmental regression noted during his prolonged hospitalization. Given the underlying malleability of the developing brain in early childhood, access to supportive services that facilitate ongoing neurodevelopment in hospitalized young children is of utmost importance; such services further reduce parental stress and likely enhances parental and medical team efficacy of care.

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Disparities in “Difficult Relationships” Between Clinicians and Parents of Children With Cancer

Karvonen

Rosenberg

2021

JAMA Netw Open

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Parent and Clinician Perspectives on Challenging Parent-Clinician Relationships in Pediatric Oncology

Abstract: This survey study investigates the prevalence of challenging parent-clinician relationships in pediatric oncology and factors associated with these challenges.

Cited by 6 publications

References 42 publications

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

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

Regression in Early Childhood Development: An Unintended Outcome of Prolonged Hospitalization?

Disparities in “Difficult Relationships” Between Clinicians and Parents of Children With Cancer

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