Treuman Katz Center for Pediatric Bioethics

Seattle, WA, United States

Treuman Katz Center for Pediatric Bioethics

Seattle, WA, United States
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Rosenberg A.R.,Seattle Childrens Hospital | Rosenberg A.R.,Fred Hutchinson Cancer Research Center | Rosenberg A.R.,University of Washington | Rosenberg A.R.,Treuman Katz Center for Pediatric Bioethics | And 14 more authors.
Pediatric Blood and Cancer | Year: 2014

Background: The psychosocial function of parents of children with cancer can impact the well-being of the entire family. Resilience resources are likely related to psychosocial outcomes and may be amenable to intervention. We hypothesized that parents with lower resources would report worse outcomes. Methods: In the "Understanding Resilience in Parents of Children with Cancer" study, comprehensive surveys were mailed to consecutive, English-speaking parents of children with cancer who were treated at Seattle Children's Hospital and completed therapy between January 1, 2009 and December 31, 2010. Resilience resources were measured by the Connor-Davidson Resilience Scale; outcome measures included psychological distress, health-related behaviors, social and family function, and perceived communication with the medical team. Results: Ninety-six parents (86% of contactable) completed the survey. Compared to population norms, enrolled parents had lower resilience resources, higher psychological distress, and more commonly reported binge drinking. Conversely, they reported higher social support and family adaptability (P<0.001-0.006). Lower resilience resources were associated with higher distress, lower social support, and lower family function (P<0.001-0.007). Parents in the lowest quartile of resilience resources had higher odds of frequent sleep difficulties (OR 5.19, 95% CI 1.74,15.45), lower health satisfaction (OR 5.71, 95% CI 2.05,15.92), and decreased ability to express worries to the medical team (OR 4.00, 95% CI 1.43,11.18). Conclusions: Parents of children with cancer are at risk for poor psychosocial outcomes and those with low resilience resources may be at greater risk. Interventions directed at promoting resilience resources may provide a novel and complimentary approach toward improving outcomes for families facing pediatric cancer. © 2013 Wiley Periodicals, Inc.

Rosenberg A.R.,Fred Hutchinson Cancer Research Center | Rosenberg A.R.,Treuman Katz Center for Pediatric Bioethics | Orellana L.,U.S. National Cancer Institute | Kang T.I.,Children's Hospital of Philadelphia | And 5 more authors.
Journal of Clinical Oncology | Year: 2014

Purpose Concordance between parents of children with advanced cancer and health care providers has not been described. We aimed to describe parent-provider concordance regarding prognosis and goals of care, including differences by cancer type.Patients and Methods A total of 104 pediatric patients with recurrent or refractory cancer were enrolled at three large children's hospitals. On enrollment, their parents and providers were invited to complete a survey assessing perceived prognosis and goals of care. Patients' survival status was retrospectively abstracted from medical records. Concordance was assessed via discrepancies in perceived prognosis, < statistics, and McNemar's test. Distribution of categorical variables and survival rates across cancer type were compared with Fisher's exact and log-rank tests, respectively.Results Data were available from 77 dyads (74% of enrolled). Parent-provider agreement regarding prognosis and goals of care was poor (κ, 0.12 to 0.30). Parents were more likely to report cure was likely (P < .001). The frequency of perceived likelihood of cure and the goal of cure varied by cancer type for both parents and providers (P < .001 to .004). Relatively optimistic responses were more common among parents and providers of patients with hematologic malignancies, although there were no differences in survival.Conclusion Parent-provider concordance regarding prognosis and goals in advanced pediatric cancer is generally poor. Perceptions of prognosis and goals of care vary by cancer type. Understanding these differences may inform parent-provider communication and decision making. © 2014 by American Society of Clinical Oncology.

Stokke J.,Seattle Childrens Hospital | Stokke J.,University of Washington | Sung L.,Hospital for Sick Children | Gupta A.,Hospital for Sick Children | And 7 more authors.
Pediatric Blood and Cancer | Year: 2015

Pediatric, adolescent, and young adult survivors of bone sarcomas are at risk for poor quality of life (QOL). We conducted a systematic review and meta-analysis to summarize the literature describing QOL in this population and differences in QOL based on local control procedures. Procedure: Included studies described ≥5 patients <25 years old who had completed local control treatment for bone sarcoma, defined QOL as a main outcome, and measured it with a validated instrument. Data extraction and quality assessments were conducted with standardized tools. Meta-analyses compared QOL based on surgical procedure (limb-sparing vs. amputation) and were stratified by assessment type (objective physical function, clinician-assessed disability, patient-reported disability, and patient-reported QOL). Effect sizes were reported as the standard mean difference when multiple instruments were used within a comparison and weighted mean difference otherwise. All were weighted by inverse variance and modeled with random effects. Results: Twenty-two of 452 unique manuscripts were included in qualitative syntheses, eight of which were included in meta-analyses. Manuscripts were heterogeneous with respect to included patient populations (age, tumor type, time since treatment) and QOL instruments. Prospective studies suggested that QOL improves over time, and that female sex and older age at diagnosis are associated with poor QOL. Meta-analyses showed no differences in outcomes between patients who underwent limb-sparing versus amputation for local control. Conclusion: QOL studies among children and AYAs with bone sarcoma are remarkably diverse, making it difficult to detect trends in patient outcomes. Future research should focus on standardized QOL instruments and interpretations. © 2015 Wiley Periodicals, Inc.

Opel D.J.,University of Washington | Opel D.J.,Treuman Katz Center for Pediatric Bioethics | Opel D.J.,Seattle Childrens Research Institute | Robinson J.D.,Portland State University | And 6 more authors.
Vaccine | Year: 2012

Objective: To determine the feasibility of using direct observation of provider-parent immunization discussions and to characterize provider communication practices with vaccine-hesitant parents. Methods: Over a 6 month period in 2010, we videotaped immunization discussions between pediatric providers and vaccine-hesitant parents during health supervision visits involving children 2-15 months old (N=24) in the Seattle area, Washington, USA. Videotapes were analyzed using the qualitative method of conversation analysis. Results: We approached 96 parents seen by 9 different providers. Of those who were eligible (N=56), we enrolled 43% (N=24). Four videotaped visits were excluded from analysis for failure to obtain parental HIPAA authorization. Of the remaining 20 visits, there were ≥2 visits each that involved children aged 2, 4, 6, 9, 12, and 15 months, and all videotaped visits contained at least a brief immunization discussion. We identified 6 communication practices and several behavior types within each practice relevant to immunization: Practice 1, providers' initiations of the topic of vaccination; Types: participatory or presumptive format; Practice 2, parents' responses to providers' topic initiations; Types: strong or weak acceptance or resistance; Practice 3, providers' follow-ups to parent's responses; Types: no, immediate, or delayed pursuit; Practice 4, parents' vaccine-related questions or statements; Types: fact- or concern-based; Practice 5, providers' explicit solicitations of parent's questions/concerns; Types: designed to discourage or encourage discussion; and Practice 6, parents' responses to providers' solicitations of questions/concerns; Types: no question or fact- or concern-based inquiry. Conclusion: Direct observation of immunization discussions in the primary care pediatric setting is feasible and yields insight into several provider-parent immunization communication practices that are worthy of further study to determine which are effective at improving parental acceptance of immunization. © 2011 Elsevier Ltd.

Opel D.J.,University of Washington | Opel D.J.,Treuman Katz Center for Pediatric Bioethics | Opel D.J.,Seattle Childrens Research Institute | Heritage J.,University of California at Los Angeles | And 8 more authors.
Pediatrics | Year: 2013

OBJECTIVE: To characterize provider-parent vaccine communication and determine the influence of specific provider communication practices on parent resistance to vaccine recommendations. METHODS: We conducted a cross-sectional observational study in which we videotaped provider-parent vaccine discussions during health supervision visits. Parents of children aged 1 to 19 months old were screened by using the Parent Attitudes about Childhood Vaccines survey. We oversampled vaccine-hesitant parents (VHPs), defined asa score $50. We developed a coding scheme of 15 communication practices and applied it to all visits. We used multivariate logistic regression to explore the association between provider communication practices and parent resistance to vaccines, controlling for parental hesitancy status and demographic and visit characteristics. RESULTS: We analyzed 111 vaccine discussions involving 16 providers from 9 practices; 50% included VHPs. Most providers (74%) initiated vaccine recommendations with presumptive (eg, "Well, we have to do some shots") rather than participatory (eg, "What do you want to do about shots?") formats. Among parents who voiced resistance to provider initiation (41%), significantly more were VHPs than non-VHPs. Parents had significantly higher odds of resisting vaccine recommendations if the provider used a participatory rather than a presumptive initiation format (adjusted odds ratio: 17.5; 95% confidence interval: 1.2-253.5). When parents resisted, 50% of providers pursued their original recommendations (eg, "He really needs these shots"), and 47% of initially resistant parents subsequently accepted recommendations when they did. CONCLUSIONS: How providers initiate and pursue vaccine recommendations is associated with parental vaccine acceptance. © 2013 by the American Academy of Pediatrics.

Rosenberg A.R.,Seattle Childrens Hospital | Rosenberg A.R.,Fred Hutchinson Cancer Research Center | Rosenberg A.R.,Treuman Katz Center for Pediatric Bioethics | Rosenberg A.R.,University of Washington | And 9 more authors.
Journal of Pain and Symptom Management | Year: 2015

Context. The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.Objectives. To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes.Methods. Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support).Results. Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals.Conclusion. How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes. © 2015 American Academy of Hospice and Palliative Medicine.

Beima-Sofie K.,University of Washington | John-Stewart G.,University of Washington | Shah B.,University of Washington | Wamalwa D.,University of Nairobi | And 3 more authors.
AIDS Patient Care and STDs | Year: 2014

Optimal pediatric HIV disclosure impacts illness and developmental experiences while improving access to timely treatment. However, disclosure rates in high HIV prevalence countries remain low and there are limited data on best practices. We conducted a qualitative study of disclosure practices and interviewed healthcare providers from five pediatric HIV clinics in Kenya. We identified themes central to disclosure practices, rationale for approaches, barriers to implementing disclosure, and creative strategies to overcome challenges. We used these insights to develop a practice-based framework for disclosure that is sensitive to practical challenges. Overall, providers had limited training but extensive experience in disclosure, endorsed individualized disclosure practices, invested substantial time on disclosure despite clinical burden, and noted adverse outcomes associated with unplanned or abrupt disclosure. Providers advocated for an approach to disclosure that is child-centered but respects caregiver fears and values. Caregiver support was provided to enable caregivers to be the person who ultimately disclosed HIV status to children. Unplanned or abrupt disclosure to children was reported to have severe and persistent adverse impact and was a stimulus to accelerate disclosure in scenarios when providers believed children may be suspecting their diagnosis. Based on these expert insights, the framework we developed incorporates concurrent evaluation of child and caregiver readiness, identifies cues to prompt disclosure discussions, includes caregiver education and support, and utilizes a gradual approach of unveiling HIV diagnosis to the child. © 2014 Mary Ann Liebert, Inc.

Rosenberg A.R.,Seattle Childrens Hospital | Rosenberg A.R.,Fred Hutchinson Cancer Research Center | Rosenberg A.R.,Treuman Katz Center for Pediatric Bioethics | Rosenberg A.R.,University of Washington | And 4 more authors.
Supportive Care in Cancer | Year: 2014

Purpose: Promoting parent resilience may provide an opportunity to improve family-level survivorship after pediatric cancer; however, measuring resilience is challenging.Methods: The “Understanding Resilience in Parents of Children with Cancer” was a cross-sectional, mixed-methods study of bereaved and non-bereaved parents. Surveys included the Connor–Davidson Resilience scale, the Kessler-6 psychological distress scale, the Post-Traumatic Growth Inventory, and an open-ended question regarding the ongoing impact of cancer. We conducted content analyses of open-ended responses and categorized our impressions as “resilient,” “not resilient,” or “unable to determine.” “Resilience” was determined based on evidence of psychological growth, lack of distress, and parent-reported meaning/purpose. We compared consensus impressions with instrument scores to examine alignment. Analyses were stratified by bereavement status.Results: Eighty-four (88 %) non-bereaved and 21 (88 %) bereaved parents provided written responses. Among non-bereaved, 53 (63 %) were considered resilient and 15 (18 %) were not. Among bereaved, 11 (52 %) were deemed resilient and 5 (24 %) were not. All others suggested a mixed or incomplete picture. Rater-determined “resilient” parents tended to have higher personal resources and lower psychological distress (p = <0.001–0.01). Non-bereaved “resilient” parents also had higher post-traumatic growth (p = 0.02). Person-level analyses demonstrated that only 50–62 % of parents had all three instrument scores aligned with our impressions of resilience.Conclusions: Despite multiple theories, measuring resilience is challenging. Our clinical impressions of resilience were aligned in 100 % of cases; however, instruments measuring potential markers of resilience were aligned in approximately half. Promoting resilience therefore requires understanding of multiple factors, including person-level perspectives, individual resources, processes of adaptation, and emotional well-being. © 2014, Springer-Verlag Berlin Heidelberg.

Brown A.N.,Seattle Childrens Hospital | Gonzalez G.R.,Seattle Childrens Hospital | Wiester R.T.,Seattle Childrens Hospital | Wiester R.T.,University of Washington | And 5 more authors.
Child Abuse and Neglect | Year: 2014

Three recently diagnosed cases of caregiver-fabricated illness in a child at Seattle Children's Hospital shed light on a new manifestation of their caretakers' attention seeking. The patients' mothers were actively blogging about their children's reputed illnesses. Although it is not uncommon for parents of chronically ill children to blog about their child's medical course, specific themes in these blogs of parents suspected of medically abusing their children were noted. In particular, gross distortions of the information parents had received from medical providers were presented online, describing an escalation of the severity of their children's illnesses. The mothers reported contacting palliative care teams and Wish organizations, independently from their medical providers' recommendations. They sought on-line donations for their children's health needs. We believe these blogs provide additional direct evidence of the suspected caregivers' fabrications. Although we have not performed formal content analysis, blogs might also provide insight into the caretakers' motivations. Protective Services and/or police investigators could consider querying the internet for blogs related to children at risk for caregiver-fabricated illness in a child. These blogs, if viewed in parallel with the children's medical records, could assist medical diagnosis and legal documentation of medical fabrication and assist in protective planning for the affected children. © 2013 Elsevier Ltd.

Opel D.J.,University of Washington | Opel D.J.,Treuman Katz Center for Pediatric Bioethics | Opel D.J.,Seattle Childrens Research Institute | Taylor J.A.,University of Washington | And 6 more authors.
Vaccine | Year: 2011

Objective: To assess the construct validity and reliability of the Parent Attitudes about Childhood Vaccines survey. Study Design: Cross-sectional survey of parents of 19-35. month old children in a closed model HMO. We used factor analysis to confirm survey sub-domains and Cronbach's α to determine the internal consistency reliability of sub-domain scales. Construct validity was assessed by linking parental responses to their child's immunization record. Results: Our response rate was 46% (N=230). Factor analysis identified 3 factors that explained 70% of the total variance for the 18 survey items. We deleted 3 items that failed to load highly (>4) on an identified factor, correlated poorly with other items, or had a hesitant response that was not associated with increased under-immunization. Cronbach's α coefficients for the 3 sub-domain scales created by grouping the remaining 15 items were .74, .84, and .74, respectively. Children of parents with survey scores of 50-79 had 14% more days under-immunized from birth to 19. months (95% CI: 8.0, 20.5) than those with parents who scored <50. Scores of ≥80 were associated with 51% more days under-immunized (95% CI: 38.2, 63.4). Conclusion: The revised survey is a valid and reliable instrument to identify vaccine-hesitant parents. © 2011 Elsevier Ltd.

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