Background: Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking.
Methods: We performed 37 semistructured interviews with AYAs aged 12-24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care.
Results: We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other's emotions. Additionally, we identified five factors that influenced AYAs' roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills.
Conclusions: AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family's unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9681027 | PMC |
| http://dx.doi.org/10.1002/pbc.29813 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
The system can change: a feasibility study of a doula-clinician collaborative at a large tertiary hospital in the United States.
Implement Sci Commun
December 2024
Beth Israel Deaconess Medical Center, 330 Brookline Ave, Boston, MA, 02115, USA.
Background: Doulas, non-clinical professionals who provide support throughout the perinatal period, can positively impact patient experiences and clinical outcomes during birth. Doulas often support hospital-based births without being employed by the hospital system, resulting in varied relationships with hospitals and clinicians. Systems-level changes are needed to maximize collaboration between hospitals and doulas to ensure facilitation of, and not barriers to, doula support.
View Article and Find Full Text PDFEffect of short message service reminders in improving optimal antenatal care, skilled birth attendance and postnatal care in low-and middle-income countries: a systematic review and meta-analysis.
BMC Med Inform Decis Mak
December 2024
Department of Health Informatics, Institute of Public Health, College of Medicine and Health Sciences, University of Gondar, Gondar, Ethiopia.
Background: Digital health has emerged as a promising solution for enhancing health system in the recent years, showing significant potential in improving service outcomes, particularly in low and middle-income countries where accessing essential health service is challenging. This review aimed to determine the effectiveness of short message services on focused antenatal care, skilled birth attendance, and postnatal care improvement in low and middle-income countries.
Method: Electronic databases such as PubMed, EMBASE, Scopus, Cochrane, and Google and Google Scholar were searched.
Emergency care experiences of patients known to palliative care services and their family: A qualitative interview study.
Australas Emerg Care
December 2024
School of Nursing, University of Auckland, Auckland, New Zealand. Electronic address:
Background: With aging and comorbid populations and healthcare services under pressure, emergency department presentations related to palliative care needs are increasing. Little is known about patient and family experiences of care in this context. This study explores the emergency department care experiences of palliative patients and their family members.
View Article and Find Full Text PDFBackground: Allied health professionals (AHPs) in inpatient mental health, learning disability and autism services work in cultures dominated by other professions who often poorly understand their roles. Furthermore, identified learning from safety incidents often lacks focus on AHPs and research is needed to understand how AHPs contribute to safe care in these services.
Methods: A rapid literature review was conducted on material published from February 2014 to February 2024, reporting safety incidents within adult inpatient mental health, learning disability and autism services in England, with identifiable learning for AHPs.
Patient- and Family-Centered Outcomes After Intensive Care Unit Admission.
Am J Crit Care
January 2025
Eliotte L. Hirshberg is an assistant professor of pediatrics, Shock Trauma Intensive Care Unit, Intermountain Medical Center, Murray, Utah; Center for Humanizing Critical Care, Intermountain Health, Murray, Utah; Pulmonary and Critical Care Medicine, Intermountain Medical Center, Salt Lake City, Utah; and Pulmonary and Critical Care Medicine, University of Utah School of Medicine, Salt Lake City.
Background: Family satisfaction with intensive care is a measure of patient experience and patient-centered care. Among the factors that might influence family satisfaction are the timing of patient admittance to the intensive care unit (ICU), the ICU environment, and individual health care providers.
Objective: To evaluate family satisfaction with the ICU and to explore associations between satisfaction and specific characteristics of the ICU stay.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!