Official Title
Improving Quality and Consistency in Family Education Prior to First Discharge Following Pediatric Cancer Diagnosis
Summary:
When a child is diagnosed with cancer the family's world is turned upside down. Parents have
high levels of stress because they must learn important information about their child's
diagnosis,medications and treatments. They must also learn how to care for their child once
they have left the safety of the hospital. Parents have voiced that during this time they
receive too much information, have paper overload, and hear and read different information
causing them to feel confused. Parents have shared that small amounts of information that can
be repeated when they want and as often as they want helps them to feel more confident to
care for their child. This study will ask parents if they like and can easily learn
information about how to care for their child with cancer from short videos that highlight
key points, have visual cues, and provide case examples. If parents find short videos useful
and helpful for learning, with the goal that they will feel more confident to care for their
child and have lower levels of anxiety.
Trial Description
Primary Outcome:
- Measure acceptability and ability to understand video-based education modules for parent/caregivers of children with newly diagnosed cancer
Secondary Outcome:
- Measure the feasibility of providing video to families
- Qualitative feedback about the videos
- Measure a change in knowledge and confidence before/after video
A diagnosis of childhood cancer is overwhelming for both the child and family.
Parents/caregivers of newly diagnosed pediatric oncology patients need specialized education
to provide safe care for their child at home. Previous research and clinical experience have
highlighted that current strategies are not successful. Families report challenges with
paper, information overload and teaching provided at a time when they are unable to focus.
They describe inconsistent messages between different providers and sources of
information.Parents/caregivers have expressed that information that is concise, consistent,
with visual cues, and can be repeated, positively influences their ability to understand.
Poor quality of discharge teaching in pediatrics is associated with increased emergency room
visits and readmissions to hospital. Predictors of readmission include medical complexity and
4 or more medications prescribed at time of discharge. Pediatric oncology patients are
medically complex and at risk for significant life-threatening complications. Multiple home
medications are the standard for children receiving cancer therapy. Current parent/caregiver
education is often driven by checklists of content that health careproviders (HCP) believe
must be delivered prior to first hospital discharge. Timing of education is planned according
to HCP schedules and not consistently at a time chosen by and suitable for
parents/caregivers.
Methods for providing parent/caregiver education currently include verbal discussion with
HCPs and written information. Evaluation of educational video strategies in pediatric
oncology has been limited to taped diagnostic discussions. It is reported that 90% of
parents/caregivers of pediatric cancer patients search the internet for information. Video
education developed by pediatric oncology experts has the advantage of providing consistent
information, being available for repeat viewing, and available at times chosen by the
parents/caregivers.
Goals and Objectives
The overarching goal is to improve consistency and quality of education
provided to parents/caregivers of newly diagnosed pediatric oncology patients.
Primary Objective:
To develop two short video-based education modules for parents/caregivers of children with
newly diagnosed cancer which are acceptable and understandable.
Secondary Objectives:
1. To determine the feasibility of a trial of providing education in video modules as
demonstrated by the ability to recruit 20 parents/caregivers of newly diagnosed children
with cancer within 8 months and by having at least 90% of enrolled parents/caregivers
watch the two videos and answer 10 knowledge and confidence questions
2. To obtain qualitative feedback about the videos
3. To describe change in knowledge and confidence before and after viewing the two videos
Impact and Relevance Statement
This study is proposing a novel video-based education program
for parents/caregivers which hypothesize will lead to improved understanding and confidence
to care for their child newly diagnosed with cancer post first discharge from hospital.
Learning in this fashion can be conducted at a time best suited to each individual caregiver
and allow for repetition of the materials as often as desired. It ensures that different
caregivers for the same child receive the same information. The greatest impact will be on
the parents/caregivers with a goal to increase knowledge, preparedness and confidence and
minimize distress and anxiety.
Methods:
In this pilot study the investigators plan to develop and evaluate two video modules focused
on two essential 'prior-to-first-discharge' topics: the approach to fever and giving
medications at home. The video modules will be short, concise and will include case-based
scenarios allowing parents/caregivers to review and consolidate teaching.
The content of the videos will be developed by pediatric oncology nurses, physicians and
pharmacists from across POGO centres. The review panel will consist of 8-12 HCPs with
representation by discipline and centre. The script will be developed in a series of
teleconferences in which first the content will be developed and refined using a consensus
approach. Once the content is agreed upon, a script will be developed and refined among the
review panel. When finalized, the investigators will begin to test acceptability and
understandability with respondents. For this phase, eligible respondents will be any parent
or caregiver of a child with cancer irrespective of type or timing of diagnosis. The
investigators will exclude respondents who do not understand English. The investigators will
then test the script with consecutive parent/guardian respondents using one-on-one cognitive
interviews. The investigators will ask the respondent to read the script and the
investigators will ask them to rate acceptability and understandability on 5 Point Likert
scales which the investigators have used previously for instrument development.
Using a semi-structured interview, the investigators will ask probing questions to clarify
their understanding of content. A second interviewer will be present who will rate
understandability on a 4 point Likert scale ranging from 1=completely incorrect to
4=completely correct. After every 5 interviews, the results will be shared with the review
panel who will decide whether to modify the script. Iterations will continue until at least 4
of the last 5 respondents are correct in their interpretation, state the script is
understandable and acceptable and further modifications are not required based upon
qualitative comments.
The finalized scripts will be developed into short videos, less than 5 minutes in length. The
videos will be tested in new groups of 5 respondents and similarly evaluated for
acceptability and understandability using cognitive interviews. Respondents will be
specifically asked about length and clarity of information presented.
The videos will be considered satisfactory when at least 4 of the last 5 respondents are
correct in their interpretation, state the video is understandable and acceptable and further
modifications are not required based upon qualitative comments.
Confidence and knowledge questions will be developed in a similar method with consensus among
the Pediatric Oncology HCPs and then with parents. This will allow both clinical expert
consensus and parent validation.
Next, the investigators will test the feasibility of a trial of the educational video modules
by conduct of a pilot study based at SickKids. Eligible respondents will be parents or
caregivers of children newly diagnosed with cancer within the past 4 weeks. The investigators
will exclude parents who do not understand English. Only one parent per child will be
eligible. For eligible and consenting parents/caregivers, the investigators will ask them to
watch the two videos, summarize the content of the video and provide feedback similar to the
development phase. The investigators will also ask them to answer the confidence survey and
the knowledge questions which will measure their knowledge and confidence in different
domains of fever management and medication administration. The questions will be administered
before and after watching the videos.
View this trial on ClinicalTrials.gov
