Improving Quality and Consistency in Family Education Prior to First Discharge Following Pediatric Cancer Diagnosis

Titre officiel

Improving Quality and Consistency in Family Education Prior to First Discharge Following Pediatric Cancer Diagnosis


Lorsqu’un enfant reçoit un diagnostic de cancer, l’univers de la famille est complètement bouleversé. Les parents subissent énormément de stress, car ils doivent obtenir des renseignements importants sur le diagnostic, les médicaments et les traitements de leur enfant. Ils doivent également apprendre à prodiguer des soins à leur enfant hors de l’hôpital. Des parents ont confié s’être sentis embrouillés pendant la transition entre l’hôpital et la maison après avoir reçu trop d’information et de documents à remplir et entendu et lu toutes sortes de renseignements. Ils ont déclaré que la répétition de petites quantités de renseignements au moment et à la fréquence qu’ils souhaitent les aide à se sentir plus confiants en ce qui a trait aux soins de leur enfant. Cette étude demandera aux parents s’ils apprécient recevoir des renseignements sur la façon de prendre soin de leur enfant atteint de cancer à l’aide de courtes vidéos qui soulignent des points importants et présentent des indications visuelles et des exemples de cas et que ces renseignements sont faciles à comprendre. Si les parents trouvent les courtes vidéos utiles et pratiques pour l’apprentissage, l’objectif de ces vidéos consistera à les rendre plus confiants pour prendre soin de leur enfant et à atténuer leur anxiété.

Description de l'essai

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.

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