Parental opinions about clinical research
OBJECTIVE: To characterize parental perception of clinical research, particularly in emergency settings. To identify specific aspects of clinical research that concern parents and to discuss how these concerns can be addressed. STUDY DESIGN: Quantitative and qualitative survey in tertiary care children's hospital and affiliated clinics. RESULTS: Family caregivers (n = 136) participated in this study; 81% of study participants agreed or strongly agreed that physicians should do research involving children, with 5% disagreeing. However, 18% felt that researchers care more about the research than about the patient, and 13% believed that when a child is in a research study, physicians must follow the research protocol even if it is not in the best interest of the child. Participants were significantly less likely to endorse the conduct of research in an emergency setting than in a nonspecified setting (P < .001). Parents' foremost concern about emergency research was that it could delay therapy or distract physicians' attention from the child's needs. CONCLUSION: Parents largely support pediatric clinical research, but they have specific concerns that should be addressed in research planning and in communicating with parents about clinical research.
2007
Morris MC; Besner D; Vazquez H; Nelson RM; Fischbach RL
The Journal Of Pediatrics
2007
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/10.1016/j.jpeds.2007.04.032" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.04.032</a>
Decisions around long-term ventilation for children: Perspectives of directors of pediatric home ventilation programs
Artificial Ventilation; Shared Decision Making; Child; Data Analysis; Female; Human; Human Experiment; Male; North America; Physician; Semi Structured Interview; Stress
Rationale: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. Objectives: To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. Methods: Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. Results: A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources. Conclusions: As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.
Edwards JD; Morris MC; Nelson JE; Panitch HB; Miller RL
Annals Of The American Thoracic Society
2017
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></a> <a href="http://doi.org/10.1513/AnnalsATS.201612-1002OC" target="_blank" rel="noreferrer">10.1513/AnnalsATS.201612-1002OC</a>