Krysta Suzanne Barton
Senior Research Scholar, School of Medicine - Biomedical Ethics
Contact
https://orcid.org/0000-0002-3424-3911All Publications
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A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU
CONTEMPORARY CLINICAL TRIALS COMMUNICATIONS
2025; 44
View details for DOI 10.1016/j.conctc.2025.101455
View details for Web of Science ID 001428354300001
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A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU.
Contemporary clinical trials communications
2025; 44: 101455
Abstract
Children with severe neurological impairment (SNI) have central nervous system conditions that result in medical complexity and lifelong caregiver assistance. When children with SNI are admitted to the pediatric intensive care unit (PICU), their parents/families may experience elevated stress due to poor communication with clinicians.To address this, we created a photo-narrative intervention designed to facilitate parent-clinician communication. The intervention asks parents/families to share 3 photos with captions that inform clinicians about their child's well-being and quality-of-life. The steps include: 1) learning about photo-narratives; 2) deciding on a story; 3) selecting photos; and 4) identifying the broader context. Clinicians receive a companion guide on how to use the photo-narrative. In this pilot randomized controlled trial, N = 40 parent/family caregivers of children with SNI and their child's PICU clinicians will be randomized to receive the photo-narrative intervention or usual care. Participants will complete study surveys at enrollment and the child's PICU discharge; intervention-arm participants will also complete semi-structured interviews at discharge. The primary aim is to describe: 1) feasibility, assessed by the recruitment (approached/enrolled) and completion (intervention completion/intervention-arm) rates; and 2) acceptability (recommend the intervention/intervention-arm). We also will evaluate proof of concept by comparing changes in parent self-reported stress, perceptions of therapeutic alliance, and effects on stigma, resilience, benefit-finding, and respect as well as clinician self-reported empathy and perspective-taking.This study will evaluate the feasibility and acceptability of a novel photo-narrative intervention designed to improve caregiver stress and communication. Findings will guide the development of future multisite studies.NCT06208332.
View details for DOI 10.1016/j.conctc.2025.101455
View details for PubMedID 40034723
View details for PubMedCentralID PMC11872557
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Return-to-School Experiences of Adolescents After Allogeneic Hematopoietic Cell Transplant: A Qualitative Interview Study of Transplant Recipients.
Pediatric blood & cancer
2024: e31481
Abstract
BACKGROUND: Returning to school after allogeneic hematopoietic cell transplant (HCT) can improve quality of life and promote positive adjustment. However, this process may be challenging, and there is a limited understanding of school-aged children and adolescents' perspectives on this process.METHODS: We conducted semi-structured interviews over video with pediatric recipients of HCT (10-18years of age at HCT; 1-7years post HCT) who were treated at our institution and had returned to in-person school post HCT. We performed a thematic network analysis focused on exploring salient challenges regarding the return-to-school process post HCT and potential areas for improvement.RESULTS: We interviewed 16 participants (mean age 13.8years at HCT). Four themes emerged: (i) challenges of returning to school, (ii) keys for a successful return-to-school experience, (iii) overall perceptions of the process, and (iv) recommendations for improvement. HCT recipients described several social/emotional, physical, and academic challenges while returning to school and cited strong sources of support as critical to a successful transition. Recommendations for a better transition process included the following: (a) fostering peer support, (b) establishing social connections, (c) providing mental health support, (d) identifying a go-to point of contact for issues, and (e) maintaining academic support.CONCLUSIONS: Our findings highlight perspectives from school-aged recipients of HCT regarding gaps in support and areas for improvement to facilitate successful return to school after HCT. Additional assistance throughout the process may optimize academic and social reintegration and support recovery after HCT.
View details for DOI 10.1002/pbc.31481
View details for PubMedID 39690453
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A Photo-Narrative Intervention for Children with Severe Neurological Impairment in the PICU.
Journal of pain and symptom management
2024
Abstract
Parents of children with severe neurological impairment (SNI) face barriers in the pediatric intensive care unit (PICU) to humanistic care. Photo-narratives are a promising strategy to share perspectives about well-being. This study describes the iterative refinement and lessons learned in adapting a photo-narrative intervention for children with SNI in the PICU.This qualitative study was conducted at an academic children's hospital. Participants included parents of children with SNI who completed the photo-narrative during interviews after their child's PICU discharge and provided feedback on intervention design, implementation, and impact. Parents then selected 1-3 of their child's PICU clinicians to participate. Data from sets of 5 parents and their corresponding clinicians were transcribed, de-identified, summarized using rapid qualitative analysis, and presented to our multidisciplinary study team who either accepted or dismissed changes. This cycle was repeated a total of 3 times with new participants to arrive at the final prototype.Fifteen parents and 19 clinicians participated. Parents were a median of 39 years-old (range 28-55); 20% (n=3) were fathers. Over half (n=11) of clinicians had >5 years in their profession. Themes of refinement focused on: enhancing flexibility and ease for families; eliciting information to diminish disability-based biases; and streamlining integration in the PICU environment. Lessons learned included the ability of photos to share family perspectives on quality-of-life, contextualize the child's health status, and enhance child-clinician connection.Themes and lessons learned from the successful adaptation and refinement of a photo-narrative can inform the other interventions designed to humanize care.
View details for DOI 10.1016/j.jpainsymman.2024.11.021
View details for PubMedID 39675393
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Parents' Experiences With and Preferences for Receiving Information About Tumor Genomic Sequencing: Findings From a Qualitative Study and Implications for Practice.
JCO precision oncology
2024; 8: e2400543
Abstract
The use of up-front tumor genomic sequencing (TGS) is becoming increasingly common in pediatric oncology. Despite this, little is known about how parents receive information about TGS at the time of their child's cancer diagnosis. We aimed to describe parents' experiences with and preferences for receiving information about TGS and to use these findings to inform practical guidance for pediatric oncology clinicians.We conducted semistructured interviews with English-speaking parents (older than 18 years) of patients (younger than 18 years) who had TGS for a new diagnosis of cancer. We analyzed the interviews thematically. Participants also completed a short demographic survey, and we obtained medical information about participants' children via chart review.We interviewed 20 parents (14 mothers; median age, 38 years) of children who underwent TGS for a newly diagnosed cancer (10 leukemias/lymphomas, three CNS tumors, seven other solid tumors). Children were 6 months to 17 years at diagnosis (median, 6 years). Fifteen parents and their children were White, two of whom were Hispanic and four of whose children were Hispanic. No participants identified themselves or their child as Black. We identified the following themes regarding information delivery about genomic testing from the interviews: (1) those in the parent role have some universal information needs; (2) information delivery preferences vary among parents, even within one family; and (3) parents desire standard yet tailored information delivery.Parents made suggestions consistent with elements of established high-quality communication in pediatric oncology. As genomic testing is more standardly incorporated into childhood cancer care, communication with parents may need to adapt to reflect this. Our findings highlight potential opportunities to support parents in receiving information about genomic testing.
View details for DOI 10.1200/PO-24-00543
View details for PubMedID 39626161
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"Before Facebook and before social media...we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process
JOURNAL OF COMMUNITY GENETICS
2019; 10 (3): 375–83
View details for DOI 10.1007/s12687-018-0400-6
View details for Web of Science ID 000472908300006
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"Before Facebook and before social mediawe did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process.
Journal of community genetics
2018
Abstract
Parents of children who undergo clinical genetic testing have significant informational and emotional support needs at different stages of the testing process. We analyzed parent views about use of both the internet and social media to help meet these needs. We interviewed 20 parents of children who underwent clinical genetic testing and analyzed transcripts to identify themes related to internet and social media use. Parents described using the internet to search for information at three stages of the genetic testing process: before testing, pending results return, and after results return. Each stage corresponded to different information vacuums and needs. Parents also described using condition-specific Facebook groups to learn more about their child's condition and to find support networks of families with similar experiences in ways that were challenging using non-social media approaches. Both the internet and social media play important roles in meeting informational and support needs in pediatric genetic testing, especially for rare conditions. Providers should consider engaging parents at different stages of the testing process about their use of the internet and social media, and consider directing them to vetted sites and groups as part of shared decision making and to improve satisfaction and outcomes.
View details for PubMedID 30569339
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Pathways from autism spectrum disorder diagnosis to genetic testing.
Genetics in medicine : official journal of the American College of Medical Genetics
2017
Abstract
PurposeThis study examined challenges faced by families and health providers related to genetic testing for autism spectrum disorder (ASD).MethodsThis qualitative study of 14 parents and 15 health providers identified an unstandardized three-step process for families who pursue ASD genetic testing.ResultsStep 1 is the clinical diagnosis of ASD, confirmed by providers practicing alone or in a team. Step 2 is the offer of genetic testing to find an etiology. For those offered testing, step 3 involves the parents' decision whether to pursue testing. Despite professional guidelines and recommendations, interviews describe considerable variability in approaches to genetic testing for ASD, a lack of consensus among providers, and questions about clinical utility. Many families in our study were unaware of the option for genetic testing; testing decisions by parents appear to be influenced by both provider recommendations and insurance coverage.ConclusionConsideration of genetic testing for ASD should take into account different views about the clinical utility of testing and variability in insurance coverage. Ideally, policy makers from the range of clinical specialties involved in ASD care should revisit policies to clarify the purpose of genetic testing for ASD and promote consensus about its appropriate use.GENETICS in MEDICINE advance online publication, 19 October 2017. doi:10.1038/gim.2017.166.
View details for PubMedID 29048417