- Email: [email protected]
Understanding parents' informational needs in the pediatric intensive care unit: A qualitative study
Journal Pre-proof Understanding parents' informational needs in the pediatric intensive care unit: A qualitative study
Nina Laudato, Lauren Yagiela, Susan Eggly, Kathleen L. Meert PII:
S1058-9813(19)30172-9
DOI:
https://doi.org/10.1016/j.ppedcard.2019.101172
Reference:
PPC 101172
To appear in:
Progress in Pediatric Cardiology
Received date:
14 October 2019
Accepted date:
19 October 2019
Please cite this article as: N. Laudato, L. Yagiela, S. Eggly, et al., Understanding parents' informational needs in the pediatric intensive care unit: A qualitative study, Progress in Pediatric Cardiology(2019), https://doi.org/10.1016/j.ppedcard.2019.101172
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
© 2019 Published by Elsevier.
Journal Pre-proof Understanding Parents’ Informational Needs in the Pediatric Intensive Care Unit: A Qualitative Study
Nina Laudato, MD1; Lauren Yagiela, MD, MS1; Susan Eggly, PhD2; Kathleen L. Meert, MD, FCCM1
Affiliations: 1Division of Pediatric Critical Care Medicine, Department of Pediatrics, Children's
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Cancer Institute, Wayne State University, Detroit, MI
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Hospital of Michigan, Wayne State University, Detroit, MI; 2Department of Oncology, Karmanos
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The work was performed at Children’s Hospital of Michigan, Detroit, MI
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Address for reprints: Kathleen L. Meert, MD, Division of Pediatric Critical Care Medicine,
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Children’s Hospital of Michigan, 3901 Beaubien, Detroit, MI 48201. Phone (313) 745-5629; Fax
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(313) 966-0105. Email: [email protected]
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Reprints will not be ordered.
Key words: Health Information; Children, Parents; Pediatric Intensive Care Unit; Communication; Interviews
Financial Support: Dr. Laudato received funding for the study from an Ashok P. Sarnaik Resident and Fellow Research Grant, Children’s Research Center of Michigan, Detroit, MI.
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Journal Pre-proof ABSTRACT Objective: Information provided to parents in pediatric intensive care units (PICU) is often complex and uncertain. Our objective is to gain a better understanding of parents’ informational needs regarding their child’s critical illness, and their sources and mechanisms for gaining information. Patients and Methods: Parents whose children were discharged from a Midwestern university-
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affiliated children’s hospital PICU in the prior 30 days, and health professionals who worked in the PICU for at least one year were eligible. Semi-structured audio-recorded interviews were
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conducted, transcribed, and analyzed using established qualitative methods.
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Results: Of 40 participants, 28 were parents and 12 were health professionals. Types of
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information needed by parents included information related to their child’s PICU stay and hospitalization (e.g., diagnosis, prognosis, treatment plans), and post-discharge care (e.g.,
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home instructions, warning signs, emergency plans). Some parents reported wanting to know
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everything about their child’s condition whereas others reported little to no need for information. Sources of information included health professionals, Internet, family, and other parents.
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Mechanisms of gaining information included interpersonal interactions between parents and
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health professionals (e.g., asking questions, rounds, family conferences, modeling, hands-on learning, knowledge testing) and materials that could be viewed independently (e.g., printed materials, parent diaries, videos, white boards, patient portals). Conclusions: Types and amount of information needed by parents of critically ill children are wide ranging and include details of their child’s immediate condition and long-term postdischarge care. Parents use many sources and mechanisms to gain health information and most parents use more than one source or mechanism.
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Journal Pre-proof INTRODUCTION Parents of critically ill children have a need for accurate, comprehensive, and timely health information (1-3). Medical information shared empathically by health professionals can increase parents’ knowledge and confidence in caring for their child and is an important factor contributing to parent empowerment (4,5). Based on the World Health Organization’s definition of patient empowerment (4), parent empowerment has been described as the process through which parents are able to increase the control they have over decisions and actions affecting
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their child’s health (5). Parent empowerment may result in better outcomes for children and
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families (5,6). These outcomes include greater parental involvement in their child’s daily care,
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better symptom control, increased information seeking and decision making capacity, increased
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advocacy for the child, and engagement in activities that empower others. Parents have described the challenge of understanding complex and uncertain
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information concerning their child’s critical illness (7), as well as the importance of making informed decisions in order to fulfill their role as a good parent (8). Anxiety and distress
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experienced by some parents during their child’s pediatric intensive care unit (PICU) stay can
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interfere with their comprehension of health information (9-12). Lack of comprehension can reciprocally increase parents’ anxiety and distress (1). Additionally, the numerous health
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professionals involved in a critically ill child’s care and their workloads, schedules, and handoffs may make provision of consistent information difficult to achieve (2,13-15). This can further contribute to parents’ struggle to gain a clear understanding of their child’s health. Much of the research on communication in PICUs has focused on describing clinician attitudes and behaviors that impact parental understanding and satisfaction with health information (2,11,15). Less is known about the actual content of information provided to parents, and the sources and mechanisms by which parents prefer to gain information regarding their child’s health. Studies investigating informational needs of parents of children with serious conditions commonly cared for in PICUs such as asthma, diabetes, and cancer suggest that 3
Journal Pre-proof parents’ informational needs are not always met in the acute or chronic phases of illness (1618). Our objective is to gain a better understanding of parents’ informational needs regarding their child’s critical illness, and their sources and mechanisms for gaining information.
METHODS Design and setting The study is a qualitative analysis of parent and health professional interviews
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conducted at a Midwestern university-affiliated children’s hospital between September 2016 and
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March 2017. The PICU from which participants were recruited is a mixed medical and surgical
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unit with over 2,000 admissions annually. The PICU is a training site for residents and fellows.
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The study was approved by the institutional review board and informed consent was obtained from all participants.
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Participants
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We recruited a convenience sample of parents and health professionals to participate in an interview. A sample size of 40 (28 parents and 12 health professionals) was planned to
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qualitatively explore parents’ informational needs, and sources and mechanism of gaining
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information. Parents (i.e., biological parents or legal guardians) whose child was discharged from the PICU in the prior 30 days were eligible to participate. Parents were recruited after their child’s PICU discharge so that they would be more at ease discussing their informational needs during their child’s PICU stay. Only one parent from each family was eligible. Parents who did not speak English were excluded. Health professionals who worked in the PICU for at least one year were also eligible to participate. Health professionals were interviewed to complement the parent interviews because health professionals may have insight into information important to the child’s care that parents may not identify. Participants were recruited with the intent of obtaining a racially diverse sample. Data collection 4
Journal Pre-proof Interviews were scheduled at a time convenient for the participant and conducted by a single investigator (NL) in person or by telephone. Interviews were semi-structured and used parallel interview guides, one for parents and one for health professionals. Interview guides were developed by the investigators (KLM and SE) and included open-ended questions exploring participants’ views on parents’ informational needs and ways of gaining information during their child’s PICU stay, and closed-ended demographic questions (e.g., sex, race,
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ethnicity). All interviews were audio-recorded. Medical records were also reviewed to obtain the age, gender, diagnosis, and Pediatric Risk of Mortality (PRISM) score at PICU admission for
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children of participating parents (19).
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Data analysis
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Interviews were transcribed verbatim and imported into a qualitative software program (NVIVO 10, QSR International, Doncaster, Australia) to facilitate data analysis. Three
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investigators analyzed the transcripts (NL, LY, KLM). The investigators independently read the transcripts to identify codes pertaining to parents’ informational needs, and sources and
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mechanisms of gaining information during their child’s PICU stay. After every two to three
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transcripts, the investigators met to discuss and reach consensus on the codes identified and
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their meaning. A coding dictionary was developed based on the identified codes. The investigators reread the transcripts together and used the dictionary to code the transcripts. Examples of each code were selected for presentation. Demographic and clinical data were summarized using counts and percentages for categorical variables, and medians and interquartile ranges for continuous variables.
RESULTS Forty interviews were conducted, 28 with parents and 12 with health professionals (Table 1). Of the parents interviewed, 26 (93%) were female, 18 (64%) were Black, and 25 (89%) had at least a high school education. Of the health professionals interviewed, 8 (67%) 5
Journal Pre-proof were female, 8 (67%) were White and 5 (42%) were nurses, 4 (33%) attending physicians and 3 (25%) other health professionals. Children of the interviewed parents had median age 2.5 (0.3, 10) years and 15 (54%) were male. Diagnostic categories for the children were respiratory for 16 (57%), neurologic for 5 (18%), trauma for 2 (7%), cardiac for 1 (4%), malignancy for 1 (4%), and other for 3 (11%). PRISM score at PICU admission had a median predicted probability of mortality of 3% (1%, 9.5%). Thirty-seven interviews were conducted in-person and three by
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telephone. Types of information
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Table 2 illustrates the types of information parents needed regarding their child’s critical
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illness. Information was needed pertaining to the child’s PICU stay and hospitalization and the
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child’s post-discharge care. The most frequent type of information pertaining to the PICU stay and hospitalization was information about medications the child was receiving. Other needed
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information included the child’s diagnosis, prognosis, treatment plan, test results, procedures,
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symptoms, course of illness, and aspects of routine child life that could be maintained in the hospital. Participants also reported that parents need information about the roles of health
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professionals caring for their child, and PICU and hospital facilities.
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Information pertaining to the child’s post-discharge care included general instructions for home care, device use at home, and ways to prevent critical illness from recurring. Prevention of critical illness included information about warning signs and emergency plans. Some participants reported parents’ need to know everything about their child’s condition whereas others reported that some parents have no need/desire for information. Overlap between the informational needs mentioned by parents and health professionals is illustrated in Figure 1. Sources of information
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Journal Pre-proof Table 3 illustrates the sources of information used by parents in PICU. The most frequent sources of information were nurses and physicians. Other sources of information included the Internet, family members, other parents, and other types of health professionals. Mechanisms of gaining information Table 4 illustrates the mechanisms used by parents to gain information in PICU. Mechanisms of gaining information included interpersonal interactions between parents and
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health professionals or others, and materials that could be viewed independently if desired. The most frequent mechanism for gaining information through interpersonal interaction was parents
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asking questions to the health professionals caring for their child. Other mechanisms involving
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interpersonal interactions included parent participation on rounds; telephone communication
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with staff; family conferences; bedside learning including observation, modeling of care, handson learning and knowledge testing by staff; individual counseling; and peer teaching by other
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parents. Mechanisms of gaining information that could be viewed independently included
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printed materials, parent diaries, educational videos, medical record review, patient portals, and
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DISCUSSION
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daily plans presented on whiteboards.
Our findings describe a wide range of informational needs parents have regarding their child’s critical illness. Types of information parents need included information related to their child’s immediate condition in the PICU, expectations for the subsequent hospital course, and long-term post-discharge care. Participants identified several sources and mechanisms for gaining information, and most parents relied on more than one source or mechanism. The types of information that participants reported parents need during their child’s PICU stay were mostly congruent between parents and health professionals. The topics included diagnosis, prognosis, and treatments such as medications and procedures to which the child was exposed. Participants also reported that parents need information about prevention of 7
Journal Pre-proof recurrence of critical illness after discharge. Warning signs and emergency plans may need to be discussed early during the hospital course, when possible, rather than waiting until discharge to help reduce parents’ anxiety and fears. Parents more than health professionals expressed parents’ need for information about their child’s symptoms and the interpretation of data displayed on bedside monitors. Some parents expressed very concrete informational needs (e.g., insurance coverage) while others expressed the need for answers to more philosophical questions (e.g., why me/my child). Some parents reported wanting to know everything about
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their child’s condition whereas others reported little to no need for information. Individual
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differences in information seeking in medical settings may be related to coping style (20). Some
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individuals cope with threatening situations by seeking and monitoring information whereas
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others cope by distracting themselves.
The most frequent sources of health information identified in our study were nurses and
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physicians, followed by the Internet, then family. Research suggests that parents rely on the sources of health information they trust the most (21-23). Our findings parallel those of the
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National Cancer Institute’s Health Information National Trends Survey (HINTS) designed to
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collect nationally representative data on Americans’ need for, access to, and use of information about cancer (24). The most recent HINTS survey found 94% of Americans reported “some” or
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“a lot” of trust in health professionals, 64% in the Internet, and 55% in family and friends (24). Consistent with other reports (9,12), participants in our study reported that nurses’ continuous presence at the bedside and ability to reformulate information provided by physicians increased parents’ comprehension of health information. Parents in our study also reported accessing the Internet on smart phones or hospital computers available in the PICU waiting room, and using the Internet primarily to clarify or add to information provided by PICU staff. Health professionals often reported their frustration with helping parents decipher health information obtained via the Internet that was not specific to their child’s condition.
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Journal Pre-proof Several mechanisms of gaining health information were experienced or suggested by participants in our study including interpersonal interactions with health professionals or others, and materials that could be viewed independently if desired. The most frequent mechanism by which participants in our study reported parents gain information is by asking questions to health professionals. Through the process of asking questions, parents not only gain information but also feel heard by health professionals. Feeling heard contributes to the development of
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trust, ultimately contributing to parent empowerment and better child and family outcomes (5,6). Some parents expressed difficulty knowing what questions to ask. Professional training to elicit
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and respond to parents’ questions and the use of question prompt lists have been suggested to
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encourage parent question-asking during interactions with health professionals (25-27).
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Family participation on rounds was appreciated by parents in our study and considered by parents and staff as an important mechanism for gaining information. Purported benefits of
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family participation on rounds include increased family satisfaction and better perceived
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communication, coordination of care, patient safety, and resident education (28). However, participants in our study also expressed that parental responsibilities outside the hospital and
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feeling overwhelmed when present on rounds interfered with parents gaining information from
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rounds consistent with other reports (13,28-31). Participants in our study also acknowledged the value of family conferences in enhancing informed decision-making (32); however, participants reported that it can be difficult to get health professionals from various services together at a scheduled time and place. Remote participation in rounds and family conferences via telemedicine has been suggested as a possible alternative to physical presence for some centers (30,33). In addition to group activities such as rounds and family conferences, participants in our study also reported the need for individual counseling by health professionals and peer support. Modeling, hands-on-learning, and knowledge testing were additional mechanisms of gaining information, typically described as one-on-one interactions between nurses and parents. 9
Journal Pre-proof Modeling refers to health professionals demonstrating to parents how to perform a specific procedure or aspect of care. Hands-on-learning involves parents practicing a procedure or aspect of care under the supervision of a health professional. Knowledge testing refers to parents answering questions about or demonstrating their newly acquired skills. These one-onone interactions typically occurred sequentially. Recent literature suggests that the use of high fidelity simulation with parents may complement the one-on-one teaching performed by nurses
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at the bedside (34,35). Materials that could be viewed independently to gain information included printed
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materials, parent diaries, videos, white boards, medical record reviews and patient portals.
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Printed materials described by our study participants mainly referred to discharge packets with
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medication schedules and step-by-step instructions for home procedures. Diaries were suggested by some parents as a way to record information on daily events, treatments and test
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results for later review. Recent studies describe PICU diary methods that include entries by
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parents, staff and others, and suggest that diaries can serve as a personal narrative of the PICU experience, help fill in memory gaps later on, and give parents language to use when providing
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explanations regarding their child’s critical illness to others (36,37). Educational videos are
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easily accessible via YouTube and other outlets and mentioned by some of our participants as a desired mechanism for gaining information. Parents accessing YouTube as a source of health information are likely to encounter a large volume of general low quality information (38,39). Recent studies have cautioned that parents may be misled by online videos that are of high technical quality but which are poor clinical examples, and have advised health professionals to create repositories of suggested viewing materials for parents (38,39). One health professional in our study recommended writing the child’s daily care plans on a white board within the child’s room to be viewed by parents. A study that employed white boards as a communication tool in a pediatric cardiac ICU found that visual display of daily goals on a white board facilitated development of a comprehensive care plan, fostered goal-directed care, and provided a 10
Journal Pre-proof checklist for parents and health professionals that could be reviewed throughout the day (40). Access to the child’s electronic medical record directly or through a patient portal was suggested as a mechanism for gaining health information by some study participants. The Office of the National Coordinator for Health Information Technology defines a patient portal as a secure online website that gives patients convenient, 24-hour access to personal health information via the internet (41). A recent investigation on parents’ use and perceptions of a
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pediatric inpatient portal reported that parents found the portal easy to use and perceived that the information obtained via the portal helped them to monitor, understand, make decisions, and
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care for their child (42,43).
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Strengths of our study include our racially diverse participant sample and the use of
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qualitative methods to explore parents’ informational needs, sources and mechanisms of gaining information. Limitations include the majority of female participants; only six males were
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interviewed including two fathers. Limitations also include our inability to claim data saturation
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for the broad topic of informational needs explored in this report. Further interviews may have revealed additional types, sources, or mechanisms of gaining information important to parents.
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Our sample size prevented detailed comparison of informational needs perceived by parents and health professionals, and evaluation of whether parents’ informational needs were
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associated with parent demographics or specific features of the child’s clinical course.
CONCLUSIONS Parents of critically ill children have informational needs ranging from information about the acute illness to long-term post-discharge care. Parents rely on health professionals and the Internet as sources of health information. Parents use a variety of mechanisms to gain health information including direct engagement with health professionals and materials that can be viewed independently and over time. Further multicenter research should confirm these
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Journal Pre-proof findings. These findings can inform the development of educational toolls and resources to
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improve parents’ understanding of health information in PICUs.
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Journal Pre-proof FIGURE LEGEND Figure 1. Types of information needed by parents (A), sources of information (B), and mechanisms of gaining information (C) used by parents organized according to whether codes
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were noted by parents alone, healthcare providers alone, or both.
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Journal Pre-proof Table 1. Participant Characteristics Characteristic Parents Gender, N (%) Female Male Age, years, median (IQR) Race, N (%) Black White Asian Unknown or not reported Ethnicity, N (%) Hispanic or Latino Not Hispanic or Latino Relationship to child, N (%) Biological mother Biological father Othera Education level, N (%) Some high school Completed high school Technical/trade school Some college Completed college
Value N=28 26 (93) 2 (7) 34 (26.5, 43)
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18 (64) 9 (32) 1 (4) 0
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Health professionals Gender, N (%) Female Male Age, years, median (IQR) Race, N (%) Black White Asian Unknown or not reported Ethnicity, N (%) Hispanic or Latino Not Hispanic or Latino Occupation, N (%) Nurse Physician Social work Other Work experience in PICU, N (%) >1-5 years 6-10 years >10 years
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0 28 (100) 24 (86) 2 (7) 2 (7) 3 (11) 5 (18) 1 (4) 10 (36) 9 (32) N=12
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8 (67) 4 (33) 32.5 (26-39) 2 (17) 8 (67) 0 2 (17) 0 12 (100) 5 (42) 4 (33) 1 (8) 2 (17) 8 (67) 2 (17) 2 (17) 19
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Relationship to child, other, included one foster mother and one grandmother with legal guardianship.
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Journal Pre-proof Table 2. Types of Information Needed by Parents Type of information Medications Diagnosis Prognosis Treatment plan Home care Test results Devices Procedures Warning signs Roles of health professionals Prevention Know everything Facilities Routine child life Symptoms No need/desire Course of illness
Emergency plan Insurance Monitors Meaning
Example “I wanted to know what kind of medications he was taking and how much of it and what was each medication for." [P17] "I wanted to know what was wrong with him." [P13] “At that moment, at that time, I just wanted to know whether he was going to live or die." [P26] "Once they knew what was going on with her, what we would have to do to make her better." [P14] "I just want to know moving forward if there's any long-term things we need to do, any special home care instructions that we need to do." [P22] "So I wanted to understand not only just the medication that she takes but also the blood work, the tests to understand, okay so what does this mean?" [P24] "I needed information on all of her equipment and how to work it, who to contact if anything was to go wrong regarding the equipment." [P16] "So prior to any type of procedure, you wanted to know risks and benefits, what was going to happen, and then afterwards, how like - how it went." [P2] "This is what to watch for, and this is who to call if you see it." [HP12] "I would think knowing what teams are involved in their child's care. So the different disciplines, as well as I think it would help knowing kind of the roles of everybody." [HP7] "How to avoid another - I don't want her to have to come back here with this." [P20] "I want everything about my child - I'm a mom." [P8] "Orienting them to the room is important. I see nurses do that a lot-or to the unit, and I think that’s important so they can feel comfortable trying to find where everything is." [HP8] "When can my kid eat?" It's a big question." [HP10] "What was causing her symptoms?" [P22] "Um…nothing, basically." [P27] "They want a very specific timeframe, even though, as the people taking care of them, you know that there is no particular time frame necessarily because 100 million different things can happen." [HP1] "When to call for help whether its 911 or to bring their child to pediatrician or to the emergency department or to provide CPR if that’s likely to be necessary." [HP9] "Does my insurance cover it?" [P21] "What the machines was there for? And like what was it calculating? Like what did the numbers mean?" [P4] "You know, I've got so many questions-I sit here, and I think about everything that's going on, and it’s like, "why?" [P9]
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N (%) 29 (73) 27 (68) 27 (68) 21 (53) 20 (50) 16 (40) 16 (40) 13 (33) 13 (33) 10 (25) 10 (25) 9 (23) 7 (18) 7 (18) 6 (15) 6 (15) 6 (15)
5 (13) 1 (3) 1 (3) 1 (3)
Journal Pre-proof Participant identification numbers are in brackets following each quote. P is parent; HP is health professional. N (%) represents the number and percentage of participants who made at least one comment during the interview consistent with the code.
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Journal Pre-proof Table 3. Sources of Information Source of information Nurse
Example "So I think definitely the nurse is going to be that front-line person where parents are going to get most of that information about what's going on with them, what changes are happening and those kinds of things." [HP7] Physician "Well, it was all the doctors really. I mean, I had to rely on them to, you know, tell me what was going on." [P10] Internet “It (Internet) helped me to understand, you know, kind of what was going on after everything was explained to me” [P18]. Family "I'll ask some of my family about things they knew." [P27] Other parents "Somebody like a parent volunteer to walk around like on this floor or whatever, and you know, just talk to the families as a parent that went through it, you know?" [P9] Case manager "What I know is the case managers, in particular are really good at coordinating all the care that the kids need." [HP1] Pharmacist "The pharmacist told me about the medications." [P9] Social worker "So I wish we had more, so that social workers would take care of more patient and talk with them, update them the plan about what's happening, calm them down, I think." [HP11] Participant identification numbers are in brackets following each quote. P is parent; HP is health professional.
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N (%) 36 (90)
35 (88) 11 (28) 4 (10) 3 (8) 2 (5) 1 (3) 1 (3)
N (%) represents the number and percentage of participants who made at least one comment during the interview consistent with the code.
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Journal Pre-proof Table 4. Mechanisms of Gaining Information Mechanism Parent questions Printed material
Rounds Telephone Parent diary Modeling Video Family conference
Hands-on learning Counseling
Knowledge test
Observation Peer teaching
Medical record White board
Example "You know, there's just a lot of questions that you ask, a lot of information that you have to seek." [P17] "They gave us a whole, like whole pamphlet on it explaining it even more, like giving us papers ... and that was just-that was really a lot easier 'cause I could read it on my own time, too, and have them come in." [P2] "I like the fact that they huddled every day- they gathered day shift and then gathered night shift, so if I had any questions that was my opportunity to come..." [P22] "When I would be home I wasn’t spending the night there, I would call sometimes like in the middle of the night." [P11] "We wrote down every single thing, so-I mean, I don't know if a lot of people do that or-it definitely helped us, though, 'cause we can keep track." [P2] "We had a teacher, we had one-on-one; she showed me things step by step." [P11] "If they have like a video you can watch so you can see, you know, somebody performing any procedure that you need to do." [P1] “Everybody was together at one time and everybody went around the table and discussed his status—where he was, where he’s been, where he’s going, what they all needed to do, what the top priorities were, and what they needed to focus on, what the plan was, who was executing the plan…It was valuable...not only for the parents but even the doctors themselves thought it was a valuable sit-down.” [P10] "The most helpful was having them teach me hands-on...It kind of like gave me like practice." [P16] I feel like if somebody was there who could have just for the moment been like, you know, “Let’s pray,” or a counselor, “Do you want to talk about it? We have other moms who’ve been through this,” or anything. [P12] "She more or less tested me to what gets done at what time and what, you, which one was the most important that he had to have-she told me everything, and then she had questions as topertaining to it to make sure I knew what I was doing." [P9] "Watching the nurses do X’s care while she was in her room." [P16] "And probably have like a parent that, you know, went through that in there so they can explain and then sometime they can be like ‘well, this is how the doctor wants you to do it, but this was easier for me.’" [P1] "I wish I would have known to like get a copy of her medical record like every day." [P16] "But I think families really liked it, because they had a plan written on the board for them every day, the date and what the plan was, and who the doctors were that were there for the day." [HP8]
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N (%) 31 (78) 16 (40)
15 (38) 10 (25) 7 (18) 6 (15) 6 (15) 6 (15)
5 (13) 4 (10)
4 (10)
3 (8) 2 (5)
2 (5) 1 (3)
Journal Pre-proof Parent portal "Maybe a website or something where you can log in to get daily information on your child." [P13] Participant identification numbers are in brackets following each quote. P is parent; HP is health professional.
1 (3)
N (%) represents the number and percentage of participants who made at least one comment during the interview consistent with the code.
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Journal Pre-proof Highlights
Types and amounts of information needed by parents in PICUs are wide ranging.
Information sources include health providers, Internet, family, and other parents.
Most parents use more than one source and mechanism to gain health information.
Parents informational needs can inform the development of educational resources.
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Figure 1
Nina Laudato, Lauren Yagiela, Susan Eggly, Kathleen L. Meert PII:
S1058-9813(19)30172-9
DOI:
https://doi.org/10.1016/j.ppedcard.2019.101172
Reference:
PPC 101172
To appear in:
Progress in Pediatric Cardiology
Received date:
14 October 2019
Accepted date:
19 October 2019
Please cite this article as: N. Laudato, L. Yagiela, S. Eggly, et al., Understanding parents' informational needs in the pediatric intensive care unit: A qualitative study, Progress in Pediatric Cardiology(2019), https://doi.org/10.1016/j.ppedcard.2019.101172
This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
© 2019 Published by Elsevier.
Journal Pre-proof Understanding Parents’ Informational Needs in the Pediatric Intensive Care Unit: A Qualitative Study
Nina Laudato, MD1; Lauren Yagiela, MD, MS1; Susan Eggly, PhD2; Kathleen L. Meert, MD, FCCM1
Affiliations: 1Division of Pediatric Critical Care Medicine, Department of Pediatrics, Children's
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Cancer Institute, Wayne State University, Detroit, MI
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Hospital of Michigan, Wayne State University, Detroit, MI; 2Department of Oncology, Karmanos
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The work was performed at Children’s Hospital of Michigan, Detroit, MI
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Address for reprints: Kathleen L. Meert, MD, Division of Pediatric Critical Care Medicine,
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Children’s Hospital of Michigan, 3901 Beaubien, Detroit, MI 48201. Phone (313) 745-5629; Fax
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(313) 966-0105. Email: [email protected]
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Reprints will not be ordered.
Key words: Health Information; Children, Parents; Pediatric Intensive Care Unit; Communication; Interviews
Financial Support: Dr. Laudato received funding for the study from an Ashok P. Sarnaik Resident and Fellow Research Grant, Children’s Research Center of Michigan, Detroit, MI.
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Journal Pre-proof ABSTRACT Objective: Information provided to parents in pediatric intensive care units (PICU) is often complex and uncertain. Our objective is to gain a better understanding of parents’ informational needs regarding their child’s critical illness, and their sources and mechanisms for gaining information. Patients and Methods: Parents whose children were discharged from a Midwestern university-
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affiliated children’s hospital PICU in the prior 30 days, and health professionals who worked in the PICU for at least one year were eligible. Semi-structured audio-recorded interviews were
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conducted, transcribed, and analyzed using established qualitative methods.
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Results: Of 40 participants, 28 were parents and 12 were health professionals. Types of
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information needed by parents included information related to their child’s PICU stay and hospitalization (e.g., diagnosis, prognosis, treatment plans), and post-discharge care (e.g.,
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home instructions, warning signs, emergency plans). Some parents reported wanting to know
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everything about their child’s condition whereas others reported little to no need for information. Sources of information included health professionals, Internet, family, and other parents.
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Mechanisms of gaining information included interpersonal interactions between parents and
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health professionals (e.g., asking questions, rounds, family conferences, modeling, hands-on learning, knowledge testing) and materials that could be viewed independently (e.g., printed materials, parent diaries, videos, white boards, patient portals). Conclusions: Types and amount of information needed by parents of critically ill children are wide ranging and include details of their child’s immediate condition and long-term postdischarge care. Parents use many sources and mechanisms to gain health information and most parents use more than one source or mechanism.
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Journal Pre-proof INTRODUCTION Parents of critically ill children have a need for accurate, comprehensive, and timely health information (1-3). Medical information shared empathically by health professionals can increase parents’ knowledge and confidence in caring for their child and is an important factor contributing to parent empowerment (4,5). Based on the World Health Organization’s definition of patient empowerment (4), parent empowerment has been described as the process through which parents are able to increase the control they have over decisions and actions affecting
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their child’s health (5). Parent empowerment may result in better outcomes for children and
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families (5,6). These outcomes include greater parental involvement in their child’s daily care,
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better symptom control, increased information seeking and decision making capacity, increased
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advocacy for the child, and engagement in activities that empower others. Parents have described the challenge of understanding complex and uncertain
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information concerning their child’s critical illness (7), as well as the importance of making informed decisions in order to fulfill their role as a good parent (8). Anxiety and distress
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experienced by some parents during their child’s pediatric intensive care unit (PICU) stay can
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interfere with their comprehension of health information (9-12). Lack of comprehension can reciprocally increase parents’ anxiety and distress (1). Additionally, the numerous health
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professionals involved in a critically ill child’s care and their workloads, schedules, and handoffs may make provision of consistent information difficult to achieve (2,13-15). This can further contribute to parents’ struggle to gain a clear understanding of their child’s health. Much of the research on communication in PICUs has focused on describing clinician attitudes and behaviors that impact parental understanding and satisfaction with health information (2,11,15). Less is known about the actual content of information provided to parents, and the sources and mechanisms by which parents prefer to gain information regarding their child’s health. Studies investigating informational needs of parents of children with serious conditions commonly cared for in PICUs such as asthma, diabetes, and cancer suggest that 3
Journal Pre-proof parents’ informational needs are not always met in the acute or chronic phases of illness (1618). Our objective is to gain a better understanding of parents’ informational needs regarding their child’s critical illness, and their sources and mechanisms for gaining information.
METHODS Design and setting The study is a qualitative analysis of parent and health professional interviews
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conducted at a Midwestern university-affiliated children’s hospital between September 2016 and
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March 2017. The PICU from which participants were recruited is a mixed medical and surgical
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unit with over 2,000 admissions annually. The PICU is a training site for residents and fellows.
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The study was approved by the institutional review board and informed consent was obtained from all participants.
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Participants
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We recruited a convenience sample of parents and health professionals to participate in an interview. A sample size of 40 (28 parents and 12 health professionals) was planned to
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qualitatively explore parents’ informational needs, and sources and mechanism of gaining
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information. Parents (i.e., biological parents or legal guardians) whose child was discharged from the PICU in the prior 30 days were eligible to participate. Parents were recruited after their child’s PICU discharge so that they would be more at ease discussing their informational needs during their child’s PICU stay. Only one parent from each family was eligible. Parents who did not speak English were excluded. Health professionals who worked in the PICU for at least one year were also eligible to participate. Health professionals were interviewed to complement the parent interviews because health professionals may have insight into information important to the child’s care that parents may not identify. Participants were recruited with the intent of obtaining a racially diverse sample. Data collection 4
Journal Pre-proof Interviews were scheduled at a time convenient for the participant and conducted by a single investigator (NL) in person or by telephone. Interviews were semi-structured and used parallel interview guides, one for parents and one for health professionals. Interview guides were developed by the investigators (KLM and SE) and included open-ended questions exploring participants’ views on parents’ informational needs and ways of gaining information during their child’s PICU stay, and closed-ended demographic questions (e.g., sex, race,
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ethnicity). All interviews were audio-recorded. Medical records were also reviewed to obtain the age, gender, diagnosis, and Pediatric Risk of Mortality (PRISM) score at PICU admission for
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children of participating parents (19).
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Data analysis
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Interviews were transcribed verbatim and imported into a qualitative software program (NVIVO 10, QSR International, Doncaster, Australia) to facilitate data analysis. Three
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investigators analyzed the transcripts (NL, LY, KLM). The investigators independently read the transcripts to identify codes pertaining to parents’ informational needs, and sources and
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mechanisms of gaining information during their child’s PICU stay. After every two to three
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transcripts, the investigators met to discuss and reach consensus on the codes identified and
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their meaning. A coding dictionary was developed based on the identified codes. The investigators reread the transcripts together and used the dictionary to code the transcripts. Examples of each code were selected for presentation. Demographic and clinical data were summarized using counts and percentages for categorical variables, and medians and interquartile ranges for continuous variables.
RESULTS Forty interviews were conducted, 28 with parents and 12 with health professionals (Table 1). Of the parents interviewed, 26 (93%) were female, 18 (64%) were Black, and 25 (89%) had at least a high school education. Of the health professionals interviewed, 8 (67%) 5
Journal Pre-proof were female, 8 (67%) were White and 5 (42%) were nurses, 4 (33%) attending physicians and 3 (25%) other health professionals. Children of the interviewed parents had median age 2.5 (0.3, 10) years and 15 (54%) were male. Diagnostic categories for the children were respiratory for 16 (57%), neurologic for 5 (18%), trauma for 2 (7%), cardiac for 1 (4%), malignancy for 1 (4%), and other for 3 (11%). PRISM score at PICU admission had a median predicted probability of mortality of 3% (1%, 9.5%). Thirty-seven interviews were conducted in-person and three by
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telephone. Types of information
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Table 2 illustrates the types of information parents needed regarding their child’s critical
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illness. Information was needed pertaining to the child’s PICU stay and hospitalization and the
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child’s post-discharge care. The most frequent type of information pertaining to the PICU stay and hospitalization was information about medications the child was receiving. Other needed
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information included the child’s diagnosis, prognosis, treatment plan, test results, procedures,
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symptoms, course of illness, and aspects of routine child life that could be maintained in the hospital. Participants also reported that parents need information about the roles of health
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professionals caring for their child, and PICU and hospital facilities.
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Information pertaining to the child’s post-discharge care included general instructions for home care, device use at home, and ways to prevent critical illness from recurring. Prevention of critical illness included information about warning signs and emergency plans. Some participants reported parents’ need to know everything about their child’s condition whereas others reported that some parents have no need/desire for information. Overlap between the informational needs mentioned by parents and health professionals is illustrated in Figure 1. Sources of information
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Journal Pre-proof Table 3 illustrates the sources of information used by parents in PICU. The most frequent sources of information were nurses and physicians. Other sources of information included the Internet, family members, other parents, and other types of health professionals. Mechanisms of gaining information Table 4 illustrates the mechanisms used by parents to gain information in PICU. Mechanisms of gaining information included interpersonal interactions between parents and
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health professionals or others, and materials that could be viewed independently if desired. The most frequent mechanism for gaining information through interpersonal interaction was parents
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asking questions to the health professionals caring for their child. Other mechanisms involving
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interpersonal interactions included parent participation on rounds; telephone communication
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with staff; family conferences; bedside learning including observation, modeling of care, handson learning and knowledge testing by staff; individual counseling; and peer teaching by other
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parents. Mechanisms of gaining information that could be viewed independently included
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printed materials, parent diaries, educational videos, medical record review, patient portals, and
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DISCUSSION
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daily plans presented on whiteboards.
Our findings describe a wide range of informational needs parents have regarding their child’s critical illness. Types of information parents need included information related to their child’s immediate condition in the PICU, expectations for the subsequent hospital course, and long-term post-discharge care. Participants identified several sources and mechanisms for gaining information, and most parents relied on more than one source or mechanism. The types of information that participants reported parents need during their child’s PICU stay were mostly congruent between parents and health professionals. The topics included diagnosis, prognosis, and treatments such as medications and procedures to which the child was exposed. Participants also reported that parents need information about prevention of 7
Journal Pre-proof recurrence of critical illness after discharge. Warning signs and emergency plans may need to be discussed early during the hospital course, when possible, rather than waiting until discharge to help reduce parents’ anxiety and fears. Parents more than health professionals expressed parents’ need for information about their child’s symptoms and the interpretation of data displayed on bedside monitors. Some parents expressed very concrete informational needs (e.g., insurance coverage) while others expressed the need for answers to more philosophical questions (e.g., why me/my child). Some parents reported wanting to know everything about
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their child’s condition whereas others reported little to no need for information. Individual
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differences in information seeking in medical settings may be related to coping style (20). Some
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individuals cope with threatening situations by seeking and monitoring information whereas
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others cope by distracting themselves.
The most frequent sources of health information identified in our study were nurses and
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physicians, followed by the Internet, then family. Research suggests that parents rely on the sources of health information they trust the most (21-23). Our findings parallel those of the
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National Cancer Institute’s Health Information National Trends Survey (HINTS) designed to
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collect nationally representative data on Americans’ need for, access to, and use of information about cancer (24). The most recent HINTS survey found 94% of Americans reported “some” or
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“a lot” of trust in health professionals, 64% in the Internet, and 55% in family and friends (24). Consistent with other reports (9,12), participants in our study reported that nurses’ continuous presence at the bedside and ability to reformulate information provided by physicians increased parents’ comprehension of health information. Parents in our study also reported accessing the Internet on smart phones or hospital computers available in the PICU waiting room, and using the Internet primarily to clarify or add to information provided by PICU staff. Health professionals often reported their frustration with helping parents decipher health information obtained via the Internet that was not specific to their child’s condition.
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Journal Pre-proof Several mechanisms of gaining health information were experienced or suggested by participants in our study including interpersonal interactions with health professionals or others, and materials that could be viewed independently if desired. The most frequent mechanism by which participants in our study reported parents gain information is by asking questions to health professionals. Through the process of asking questions, parents not only gain information but also feel heard by health professionals. Feeling heard contributes to the development of
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trust, ultimately contributing to parent empowerment and better child and family outcomes (5,6). Some parents expressed difficulty knowing what questions to ask. Professional training to elicit
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and respond to parents’ questions and the use of question prompt lists have been suggested to
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encourage parent question-asking during interactions with health professionals (25-27).
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Family participation on rounds was appreciated by parents in our study and considered by parents and staff as an important mechanism for gaining information. Purported benefits of
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family participation on rounds include increased family satisfaction and better perceived
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communication, coordination of care, patient safety, and resident education (28). However, participants in our study also expressed that parental responsibilities outside the hospital and
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feeling overwhelmed when present on rounds interfered with parents gaining information from
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rounds consistent with other reports (13,28-31). Participants in our study also acknowledged the value of family conferences in enhancing informed decision-making (32); however, participants reported that it can be difficult to get health professionals from various services together at a scheduled time and place. Remote participation in rounds and family conferences via telemedicine has been suggested as a possible alternative to physical presence for some centers (30,33). In addition to group activities such as rounds and family conferences, participants in our study also reported the need for individual counseling by health professionals and peer support. Modeling, hands-on-learning, and knowledge testing were additional mechanisms of gaining information, typically described as one-on-one interactions between nurses and parents. 9
Journal Pre-proof Modeling refers to health professionals demonstrating to parents how to perform a specific procedure or aspect of care. Hands-on-learning involves parents practicing a procedure or aspect of care under the supervision of a health professional. Knowledge testing refers to parents answering questions about or demonstrating their newly acquired skills. These one-onone interactions typically occurred sequentially. Recent literature suggests that the use of high fidelity simulation with parents may complement the one-on-one teaching performed by nurses
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at the bedside (34,35). Materials that could be viewed independently to gain information included printed
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materials, parent diaries, videos, white boards, medical record reviews and patient portals.
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Printed materials described by our study participants mainly referred to discharge packets with
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medication schedules and step-by-step instructions for home procedures. Diaries were suggested by some parents as a way to record information on daily events, treatments and test
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results for later review. Recent studies describe PICU diary methods that include entries by
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parents, staff and others, and suggest that diaries can serve as a personal narrative of the PICU experience, help fill in memory gaps later on, and give parents language to use when providing
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explanations regarding their child’s critical illness to others (36,37). Educational videos are
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easily accessible via YouTube and other outlets and mentioned by some of our participants as a desired mechanism for gaining information. Parents accessing YouTube as a source of health information are likely to encounter a large volume of general low quality information (38,39). Recent studies have cautioned that parents may be misled by online videos that are of high technical quality but which are poor clinical examples, and have advised health professionals to create repositories of suggested viewing materials for parents (38,39). One health professional in our study recommended writing the child’s daily care plans on a white board within the child’s room to be viewed by parents. A study that employed white boards as a communication tool in a pediatric cardiac ICU found that visual display of daily goals on a white board facilitated development of a comprehensive care plan, fostered goal-directed care, and provided a 10
Journal Pre-proof checklist for parents and health professionals that could be reviewed throughout the day (40). Access to the child’s electronic medical record directly or through a patient portal was suggested as a mechanism for gaining health information by some study participants. The Office of the National Coordinator for Health Information Technology defines a patient portal as a secure online website that gives patients convenient, 24-hour access to personal health information via the internet (41). A recent investigation on parents’ use and perceptions of a
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pediatric inpatient portal reported that parents found the portal easy to use and perceived that the information obtained via the portal helped them to monitor, understand, make decisions, and
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care for their child (42,43).
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Strengths of our study include our racially diverse participant sample and the use of
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qualitative methods to explore parents’ informational needs, sources and mechanisms of gaining information. Limitations include the majority of female participants; only six males were
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interviewed including two fathers. Limitations also include our inability to claim data saturation
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for the broad topic of informational needs explored in this report. Further interviews may have revealed additional types, sources, or mechanisms of gaining information important to parents.
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Our sample size prevented detailed comparison of informational needs perceived by parents and health professionals, and evaluation of whether parents’ informational needs were
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associated with parent demographics or specific features of the child’s clinical course.
CONCLUSIONS Parents of critically ill children have informational needs ranging from information about the acute illness to long-term post-discharge care. Parents rely on health professionals and the Internet as sources of health information. Parents use a variety of mechanisms to gain health information including direct engagement with health professionals and materials that can be viewed independently and over time. Further multicenter research should confirm these
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Journal Pre-proof findings. These findings can inform the development of educational toolls and resources to
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improve parents’ understanding of health information in PICUs.
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neonatal intensive care unit. MCN Am J Matern Child Nurs. 2017; 42:95-100. 36. Herrup EA, Wieczorek B, Kudchadkar SR. Feasibility and perception of PICU diaries. Pediatr Crit Care Med. 2019; 20:e83-90. 37. Mikkelsen G. The meaning of personal diaries to children and families in the paediatric intensive care unit: a qualitative study. Intensive Crit Care Nurs. 2018; 45:25-30. 38. Knight K, van Leeuwen DM, Roland D, Moll HA, Oostenbrink R. YouTube: are parentuploaded videos of their unwell children a useful source of medical information for other parents? Arch Dis Child. 2017; 102:910-4. 39. Sorensen JA, Pusz MD, Brietzke SE. YouTube as an information source for pediatric adenotonsillectomy and ear tube surgery. Int J Pediatr Otorhinolaryngol. 2014; 78:65-70. 16
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Journal Pre-proof FIGURE LEGEND Figure 1. Types of information needed by parents (A), sources of information (B), and mechanisms of gaining information (C) used by parents organized according to whether codes
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Journal Pre-proof Table 1. Participant Characteristics Characteristic Parents Gender, N (%) Female Male Age, years, median (IQR) Race, N (%) Black White Asian Unknown or not reported Ethnicity, N (%) Hispanic or Latino Not Hispanic or Latino Relationship to child, N (%) Biological mother Biological father Othera Education level, N (%) Some high school Completed high school Technical/trade school Some college Completed college
Value N=28 26 (93) 2 (7) 34 (26.5, 43)
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18 (64) 9 (32) 1 (4) 0
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Health professionals Gender, N (%) Female Male Age, years, median (IQR) Race, N (%) Black White Asian Unknown or not reported Ethnicity, N (%) Hispanic or Latino Not Hispanic or Latino Occupation, N (%) Nurse Physician Social work Other Work experience in PICU, N (%) >1-5 years 6-10 years >10 years
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0 28 (100) 24 (86) 2 (7) 2 (7) 3 (11) 5 (18) 1 (4) 10 (36) 9 (32) N=12
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8 (67) 4 (33) 32.5 (26-39) 2 (17) 8 (67) 0 2 (17) 0 12 (100) 5 (42) 4 (33) 1 (8) 2 (17) 8 (67) 2 (17) 2 (17) 19
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Relationship to child, other, included one foster mother and one grandmother with legal guardianship.
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Journal Pre-proof Table 2. Types of Information Needed by Parents Type of information Medications Diagnosis Prognosis Treatment plan Home care Test results Devices Procedures Warning signs Roles of health professionals Prevention Know everything Facilities Routine child life Symptoms No need/desire Course of illness
Emergency plan Insurance Monitors Meaning
Example “I wanted to know what kind of medications he was taking and how much of it and what was each medication for." [P17] "I wanted to know what was wrong with him." [P13] “At that moment, at that time, I just wanted to know whether he was going to live or die." [P26] "Once they knew what was going on with her, what we would have to do to make her better." [P14] "I just want to know moving forward if there's any long-term things we need to do, any special home care instructions that we need to do." [P22] "So I wanted to understand not only just the medication that she takes but also the blood work, the tests to understand, okay so what does this mean?" [P24] "I needed information on all of her equipment and how to work it, who to contact if anything was to go wrong regarding the equipment." [P16] "So prior to any type of procedure, you wanted to know risks and benefits, what was going to happen, and then afterwards, how like - how it went." [P2] "This is what to watch for, and this is who to call if you see it." [HP12] "I would think knowing what teams are involved in their child's care. So the different disciplines, as well as I think it would help knowing kind of the roles of everybody." [HP7] "How to avoid another - I don't want her to have to come back here with this." [P20] "I want everything about my child - I'm a mom." [P8] "Orienting them to the room is important. I see nurses do that a lot-or to the unit, and I think that’s important so they can feel comfortable trying to find where everything is." [HP8] "When can my kid eat?" It's a big question." [HP10] "What was causing her symptoms?" [P22] "Um…nothing, basically." [P27] "They want a very specific timeframe, even though, as the people taking care of them, you know that there is no particular time frame necessarily because 100 million different things can happen." [HP1] "When to call for help whether its 911 or to bring their child to pediatrician or to the emergency department or to provide CPR if that’s likely to be necessary." [HP9] "Does my insurance cover it?" [P21] "What the machines was there for? And like what was it calculating? Like what did the numbers mean?" [P4] "You know, I've got so many questions-I sit here, and I think about everything that's going on, and it’s like, "why?" [P9]
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N (%) 29 (73) 27 (68) 27 (68) 21 (53) 20 (50) 16 (40) 16 (40) 13 (33) 13 (33) 10 (25) 10 (25) 9 (23) 7 (18) 7 (18) 6 (15) 6 (15) 6 (15)
5 (13) 1 (3) 1 (3) 1 (3)
Journal Pre-proof Participant identification numbers are in brackets following each quote. P is parent; HP is health professional. N (%) represents the number and percentage of participants who made at least one comment during the interview consistent with the code.
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Journal Pre-proof Table 3. Sources of Information Source of information Nurse
Example "So I think definitely the nurse is going to be that front-line person where parents are going to get most of that information about what's going on with them, what changes are happening and those kinds of things." [HP7] Physician "Well, it was all the doctors really. I mean, I had to rely on them to, you know, tell me what was going on." [P10] Internet “It (Internet) helped me to understand, you know, kind of what was going on after everything was explained to me” [P18]. Family "I'll ask some of my family about things they knew." [P27] Other parents "Somebody like a parent volunteer to walk around like on this floor or whatever, and you know, just talk to the families as a parent that went through it, you know?" [P9] Case manager "What I know is the case managers, in particular are really good at coordinating all the care that the kids need." [HP1] Pharmacist "The pharmacist told me about the medications." [P9] Social worker "So I wish we had more, so that social workers would take care of more patient and talk with them, update them the plan about what's happening, calm them down, I think." [HP11] Participant identification numbers are in brackets following each quote. P is parent; HP is health professional.
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N (%) 36 (90)
35 (88) 11 (28) 4 (10) 3 (8) 2 (5) 1 (3) 1 (3)
N (%) represents the number and percentage of participants who made at least one comment during the interview consistent with the code.
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Journal Pre-proof Table 4. Mechanisms of Gaining Information Mechanism Parent questions Printed material
Rounds Telephone Parent diary Modeling Video Family conference
Hands-on learning Counseling
Knowledge test
Observation Peer teaching
Medical record White board
Example "You know, there's just a lot of questions that you ask, a lot of information that you have to seek." [P17] "They gave us a whole, like whole pamphlet on it explaining it even more, like giving us papers ... and that was just-that was really a lot easier 'cause I could read it on my own time, too, and have them come in." [P2] "I like the fact that they huddled every day- they gathered day shift and then gathered night shift, so if I had any questions that was my opportunity to come..." [P22] "When I would be home I wasn’t spending the night there, I would call sometimes like in the middle of the night." [P11] "We wrote down every single thing, so-I mean, I don't know if a lot of people do that or-it definitely helped us, though, 'cause we can keep track." [P2] "We had a teacher, we had one-on-one; she showed me things step by step." [P11] "If they have like a video you can watch so you can see, you know, somebody performing any procedure that you need to do." [P1] “Everybody was together at one time and everybody went around the table and discussed his status—where he was, where he’s been, where he’s going, what they all needed to do, what the top priorities were, and what they needed to focus on, what the plan was, who was executing the plan…It was valuable...not only for the parents but even the doctors themselves thought it was a valuable sit-down.” [P10] "The most helpful was having them teach me hands-on...It kind of like gave me like practice." [P16] I feel like if somebody was there who could have just for the moment been like, you know, “Let’s pray,” or a counselor, “Do you want to talk about it? We have other moms who’ve been through this,” or anything. [P12] "She more or less tested me to what gets done at what time and what, you, which one was the most important that he had to have-she told me everything, and then she had questions as topertaining to it to make sure I knew what I was doing." [P9] "Watching the nurses do X’s care while she was in her room." [P16] "And probably have like a parent that, you know, went through that in there so they can explain and then sometime they can be like ‘well, this is how the doctor wants you to do it, but this was easier for me.’" [P1] "I wish I would have known to like get a copy of her medical record like every day." [P16] "But I think families really liked it, because they had a plan written on the board for them every day, the date and what the plan was, and who the doctors were that were there for the day." [HP8]
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N (%) 31 (78) 16 (40)
15 (38) 10 (25) 7 (18) 6 (15) 6 (15) 6 (15)
5 (13) 4 (10)
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Journal Pre-proof Parent portal "Maybe a website or something where you can log in to get daily information on your child." [P13] Participant identification numbers are in brackets following each quote. P is parent; HP is health professional.
1 (3)
N (%) represents the number and percentage of participants who made at least one comment during the interview consistent with the code.
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Journal Pre-proof Highlights
Types and amounts of information needed by parents in PICUs are wide ranging.
Information sources include health providers, Internet, family, and other parents.
Most parents use more than one source and mechanism to gain health information.
Parents informational needs can inform the development of educational resources.
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Figure 1