Patient Involvement in RSV Research: Towards Patients Setting the Research Agenda
Respiratory syncytial virus (RSV) causes a substantial disease burden among children, elderly and immunocompromised adults. Recognition of patient involvement in research is gradually increasing. Most research is being carried out without active patient involvement other than patients participating as study subjects, and most knowledge gained through research only partially reaches the general public. Since 2016, the RSV Patient Advisory Board has officially been involved as an advisory group in the Respiratory Syncytial Virus Consortium in Europe (RESCEU). What started as a small single-center initiative, is now growing towards an international organization providing patient perspectives as inputs to scientists, and improving awareness of RSV. This article summarizes the history, current role, and future aims of the RSV Patient Advisory Board as an advocate to improve patient involvement in research. RSV patients and their representatives are important stakeholders in setting the global research agenda, and educating patients, professionals, and the general public.
Derksen-Lazet ND; Parmentier CEJ; Wildenbeest JG; Bont LJ
Journal of Infectious Diseases
2022
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/10.1093/infdis/jiac110" target="_blank" rel="noreferrer noopener">10.1093/infdis/jiac110</a>
Breaking Bad News: What Parents Would Like You to Know
comm child health; palliative care; patient perspective; qualitative research
OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of communication of bad news. DESIGN: A qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents. SETTING: The Netherlands. PARTICIPANTS: Sixty-four parents-bereaved and non-bereaved-of 44 children (aged 1-12 years, 61% deceased) with a life-threatening condition. INTERVENTIONS: None. RESULTS: Based on parents' experiences, the following 10 barriers to the communication of bad news were identified: (1) a lack of (timely) communication, (2) physicians' failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (4) a lack of clarity about future treatment, (5) physicians' failure to voice uncertainties, (6) physicians' failure to schedule follow-up conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents' misunderstanding of medical terminology. CONCLUSIONS: This study shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns practical aspects of communication. The results provide practical pointers on how the communication of bad news can be improved to better suit the needs of parents. From the parents' perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place.
Brouwer MA; Maeckelberghe ELM; van der Heide A; Hein IM; Verhagen EAA
Archives of Disease in Childhood
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/10.1136/archdischild-2019-318398" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-318398</a>
Adult childhood cancer survivors' narratives of managing their health: the unexpected and the unresolved
Health Services; Childhood cancer survivor; Narrative research; Patient perspective; Qualitative
PURPOSE: Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong follow-up care. The purpose of this study was to identify the different ways that adult survivors of childhood cancer manage their medical and psychological challenges. METHODS: Data from in-depth interviews with 30 adult survivors of a childhood cancer (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, thematic narrative analysis methods. RESULTS: The survivors had not expected the medical, psychological, and social challenges that arose over time and that often remained unresolved. Five narrative themes revealed distinct ways that survivors managed their health challenges: (1) trying to forget cancer, (2) trusting the system to manage my follow-up care, (3) being proactive about my health, (4) stumbling from one problem to the next, and (5) struggling to find my way. CONCLUSIONS: Variation exists in the ways in which childhood cancer survivors frame their health, their perceived significance of health challenges, strategies used to manage health, interactions with healthcare professionals and the health system, and parental involvement. IMPLICATIONS FOR CANCER SURVIVORS: This research provides novel insights that can be used to inform the development of patient-centered health services that promote the assessment and tailoring of care to the diverse ways survivors enact their agency, as well as their psychoeducational coping styles, therapeutic relationship needs, and information needs.
2016-08
Howard AF; Goddard K; Tan de Bibiana J; Pritchard S; Olson R; Kazanjian A
Journal Of Cancer Survivorship: Research And Practice
2016
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/10.1007/s11764-016-0517-8" target="_blank" rel="noreferrer">10.1007/s11764-016-0517-8</a>
End-of-life Decisions for Fragile Neonates: Navigating between Opinion and Evidence-based Medicine
Ethics; Mortality; Neonatology; Palliative Care; Patient Perspective
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations shed some light on this topic. Durrmeyer et al systematically described the management of 73 delivery room deaths in the EPIPAGE-2 cohort. The vast majority of neonates had LSI withheld, at a median gestational age of 24 weeks. Pain was usually assessed: 50% of infants received comfort medication, the administration of which was not associated with the evaluation of pain but rather with the presence of gasping. Satisfaction of healthcare providers was strongly associated with the occurrence of parent-child contact, which frequently occurred. Aladangady et al describe the short-term outcome of LSI-limitation discussions with parents in a prospective multicentre trial in the UK (the WILST study). Half of the parents did not agree with providers and opted to continue LSI. When this occurred, it was not rare for the neonates to survive. When parents and providers agreed that LSI should be limited, neonates rarely survived.
Janvier A; Farlow B; Verhagen E; Barrington K
Archives of Disease in Childhood
2016
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://dx.doi.org/10.1136/archdischild-2016-311123">10.1136/archdischild-2016-311123</a>