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

NCT03752801 | Completed

• 1 other identifier: REB1000060860
• Study Type: observational
• Target: 67
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Oncology

Keywords

education; pediatric; family

Outcome Measures

Primary Outcomes (1)

• Measure acceptability and ability to understand video-based education modules for parent/caregivers of children with newly diagnosed cancer

  Develop 2 short video-based education modules for parents/caregivers of children with newly diagnosed cancer which are acceptable and understandable. This will be achieved when 90% of enrolled parents/caregivers watch the two videos and correctly answer 10 knowledge and confidence questions.

  parents will watch video one (approx. 10 minutes)

Secondary Outcomes (3)

• Measure the feasibility of providing video to families

  parents will watch video one (approx. 10 minutes)

• Qualitative feedback about the videos

  parents will watch video one (approx. 10 minutes)

• Measure a change in knowledge and confidence before/after video

  parents will watch video one (approx. 10 minutes) asked questions before the video and same questions at end of video

Study Arms (2)

Script Review Parents/Caregivers

will have script reviewed and evaluated by parents/caregivers in groups of 5 up to 40 participants until 4/5 parents/caregivers demonstrate that script is understandable and acceptable.

Video Review Parents/Caregivers

review and evaluation of the developed educational videos by parents/caregivers up to 20 parents who have not participated in the script review

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

parents or caregivers of children diagnosed with cancer

You may qualify if:

• for the first phase - review of script, eligible respondents will be any parent or caregiver of a child with cancer irrespective of type of timing of diagnosis.
• for the video review phase - must be a parent/caregiver of a child diagnosed with cancer in the last 8 months

You may not qualify if:

• must have written and spoken English

Sponsors & Collaborators

• The Hospital for Sick Children: lead
• Pediatric Oncology Group of Ontario: collaborator

Study Sites (1)

Sickkids

Toronto, Ontario, Canada

Location

Related Publications (6)

• Landier W, Ahern J, Barakat LP, Bhatia S, Bingen KM, Bondurant PG, Cohn SL, Dobrozsi SK, Haugen M, Herring RA, Hooke MC, Martin M, Murphy K, Newman AR, Rodgers CC, Ruccione KS, Sullivan J, Weiss M, Withycombe J, Yasui L, Hockenberry M. Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients. J Pediatr Oncol Nurs. 2016 Nov/Dec;33(6):422-431. doi: 10.1177/1043454216655983. Epub 2016 Jul 9.

  PMID: 27385664 BACKGROUND

• Haugen MS, Landier W, Mandrell BN, Sullivan J, Schwartz C, Skeens MA, Hockenberry M. Educating Families of Children Newly Diagnosed With Cancer. J Pediatr Oncol Nurs. 2016 Nov/Dec;33(6):405-413. doi: 10.1177/1043454216652856. Epub 2016 Jul 8.

  PMID: 27268501 BACKGROUND

• Rodgers CC, Laing CM, Herring RA, Tena N, Leonardelli A, Hockenberry M, Hendricks-Ferguson V. Understanding Effective Delivery of Patient and Family Education in Pediatric OncologyA Systematic Review From the Children's Oncology Group [Formula: see text]. J Pediatr Oncol Nurs. 2016 Nov/Dec;33(6):432-446. doi: 10.1177/1043454216659449. Epub 2016 Jul 27.

  PMID: 27450361 BACKGROUND

• Rodgers CC, Stegenga K, Withycombe JS, Sachse K, Kelly KP. Processing Information After a Child's Cancer Diagnosis-How Parents Learn. J Pediatr Oncol Nurs. 2016 Nov/Dec;33(6):447-459. doi: 10.1177/1043454216668825.

  PMID: 28084180 BACKGROUND

• Weiss ME, Costa LL, Yakusheva O, Bobay KL. Validation of patient and nurse short forms of the Readiness for Hospital Discharge Scale and their relationship to return to the hospital. Health Serv Res. 2014 Feb;49(1):304-17. doi: 10.1111/1475-6773.12092. Epub 2013 Jul 16.

  PMID: 23855675 BACKGROUND

• O'Sullivan C, Dupuis LL, Gibson P, Johnston DL, Baggott C, Portwine C, Spiegler B, Kuczynski S, Tomlinson D, de Mol Van Otterloo S, Tomlinson GA, Sung L. Refinement of the symptom screening in pediatrics tool (SSPedi). Br J Cancer. 2014 Sep 23;111(7):1262-8. doi: 10.1038/bjc.2014.445. Epub 2014 Aug 7.

  PMID: 25101569 BACKGROUND

MeSH Terms

Conditions

Neoplasms

Study Officials

• Denise Mills

  The Hospital for Sick Children

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Nurse Practitioner

Study Record Dates

• First Submitted: November 13, 2018
• First Posted: November 26, 2018
• Study Start: May 1, 2018
• Primary Completion: August 30, 2019
• Study Completion: September 30, 2019
• Last Updated: March 10, 2021

Record last verified: 2021-03

Locations

CA (1)