What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback. 2015

Vicki Xafis, and Dominic Wilkinson, and Jane Sullivan
Discipline of Obstetrics and Gynaecology, The University of Adelaide, Adelaide, Australia. vicki.xafis@adelaide.edu.au.

BACKGROUND The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their main source of information, they also turn to a variety of additional sources of written information in an attempt to source facts, discover solutions, and find hope. Much has been written about the needs of parents faced with end-of-life decisions for their child but little is known about the written information needs such parents have. Research in the adult intensive care context has shown that written resources impact positively on the understanding of medical facts, including diagnoses and prognoses, communication between families and healthcare professionals, and the emotional wellbeing of families after their relative's death. METHODS A meta-synthesis of predominantly empirical research pertaining to features which assist or impede parental end-of-life decisions was undertaken to provide insight and guidance in our development of written resources (short print and online comprehensive version) for parents. RESULTS The most prominently cited needs in the literature related to numerous aspects of information provision; the quantity, quality, delivery, and timing of information and its provision impacted not only on parents' ability to make end-of-life decisions but also on their emotional wellbeing. The meta-synthesis supports the value of written materials, as these provide guidance for both parents and healthcare professionals in pertinent content areas. CONCLUSIONS Further research is required to determine the impact that written resources have on parental end-of-life decision-making and on parents' wellbeing during and after their experience and time in the hospital environment.

UI MeSH Term Description Entries
D007722 Health Knowledge, Attitudes, Practice Knowledge, attitudes, and associated behaviors which pertain to health-related topics such as PATHOLOGIC PROCESSES or diseases, their prevention, and treatment. This term refers to non-health workers and health workers (HEALTH PERSONNEL). Knowledge, Attitudes, Practice
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D003142 Communication The exchange or transmission of ideas, attitudes, or beliefs between individuals or groups. Miscommunication,Misinformation,Social Communication,Communication Programs,Communications Personnel,Personal Communication,Communication Program,Communication, Personal,Communication, Social,Communications, Social,Miscommunications,Misinformations,Personnel, Communications,Program, Communication,Programs, Communication,Social Communications
D003657 Decision Making The process of making a selective intellectual judgment when presented with several complex alternatives consisting of several variables, and usually defining a course of action or an idea. Credit Assignment,Assignment, Credit,Assignments, Credit,Credit Assignments
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D013727 Terminal Care Medical and nursing care of patients in the terminal stage of an illness. End-Of-Life Care,End of Life Care,Care, End-Of-Life,Care, Terminal,End-Of-Life Cares
D013997 Time Factors Elements of limited time intervals, contributing to particular results or situations. Time Series,Factor, Time,Time Factor
D015278 Intensive Care Units, Pediatric Hospital units providing continuous surveillance and care to acutely ill infants and children. Neonates are excluded since INTENSIVE CARE UNITS, NEONATAL is available. ICU, Pediatric,Pediatric ICU,Pediatric Intensive Care Unit,Pediatric Intensive Care Units,ICUs, Pediatric,Pediatric ICUs
D020380 Needs Assessment Systematic identification of a population's needs or the assessment of individuals to determine the proper level of services needed. Assessment of Health Care Needs,Determination of Health Care Needs,Educational Needs Assessment,Assessment of Healthcare Needs,Determination of Healthcare Needs,Assessment, Educational Needs,Needs Assessment, Educational,Needs Assessment, Healthcare,Needs Assessments,Needs Assessments, Educational,Needs Assessments, Healthcare
D065026 Hope Belief in a positive outcome. Hopefulness,Hopes

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