Parent Perceptions of Team-Delivered Care for Children with Advanced Cancer: A report from the PediQUEST study
Childhood Cancer; Interdisciplinary Care; Interprofessional Healthcare Teams; Multidisciplinary Care; Pediatric Oncology; Psychosocial Oncology; Team-Delivered Care
CONTEXT: Childhood cancer care is delivered by interprofessional healthcare teams however little is known about how parents perceive overall team-delivered care (TDC). OBJECTIVES: We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics. METHODS: Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multi-site symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding 3 months. Likert scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork and other factors. Factors associated with parent perceptions of "excellent" TDC were identified using Fisher's Exact test. RESULTS: Eighty-six parents (83%) responded. Over the preceding 3 months, 63% (n=54) of parents reported excellent TDC. However, only 47% (n=40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%, n=60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, primary nurse) was associated with excellent TDC (all p
Feraco AM; Ananth P; Dussel V; Al-Sayegh H; Ma C; Rosenberg AR; Feudtner C; Wolfe J
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.05.019</a>
Parental views on communication between children and clinicians in pediatric oncology: a qualitative study
Children; Communication; Pediatric oncology; Physician-patient relationship; Psychosocial oncology; Supportive oncology
Communication is essential to providing family-centered care in pediatric oncology. Previously, we developed a functional model of communication between parents and clinicians. Prior research has not examined the domains and purposes of communication between children and clinicians. We explored parental perspectives to begin understanding this communication.
Sisk BA; Schulz GL; Blazin LJ; Baker JN; Mack JW; DuBois JM
Supportive Care in Cancer
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00520-021-06047-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06047-6</a>
Palliative care for adolescents and young adults with cancer
quality of life; end of life; Disease Specific; Pediatric oncology; psychosocial needs; psychosocial oncology; psychosocial outcomes; Supportive care
Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.
2013
Rosenberg A; Wolfe J
Clinical Oncology In Adolescents And Young Adults
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2147/COAYA.S29757" target="_blank" rel="noreferrer">10.2147/COAYA.S29757</a>