Welcome to SIOP 2022 Interactive Programme

The Congress will officially run on CET time zone (Central European Time, Barcelona)

Displaying One Session

0740 - CCI: NOTHING ABOUT US WITHOUT US! ENGAGING PATIENTS AND PARENTS IN PAEDIATRIC CANCER RESEARCH & CARE

Session Type
CCI
Date
09/28/2022
Session Time
05:30 PM - 06:30 PM
Room
Rooms 122+123
Chair(s)
  • Hannah Gsell (Austria)

INTRODUCTION

Session Type
CCI
Date
09/28/2022
Session Time
05:30 PM - 06:30 PM
Room
Rooms 122+123
Lecture Time
05:30 PM - 05:35 PM

PARENTAL ROLE IN PEDIATRIC CANCER TREATMENT DECISION MAKING AT TIKUR ANBESSA SPECIALIZED HOSPITAL, ETHIOPIA: MIXED METHOD STUDY

Session Type
CCI
Date
09/28/2022
Session Time
05:30 PM - 06:30 PM
Room
Rooms 122+123
Presenter
  • Daniel B. Wolde (Ethiopia)
Lecture Time
05:35 PM - 05:50 PM

Abstract

Background and Aims

TikurAnbessa Specialized Hospital (public), Addis Ababa, Ethiopia (>120 million people) has 42 pediatric oncology inpatient beds, and outpatient sees 150-200 children/week. Annually, >500 children with cancer are diagnosed late (advanced disease) and in pain. Aim: Explore parental role in pediatric cancer treatment decision-making and identify influencing factors.

Methods

A convergent mixed-method study from April-May 2020 used Control Preference Scale for Pediatrics (CPS-P), Krantz Health Opinion Survey (KHOS), and Trust in Physicians Scale (TPS) (interpersonal trust between the parent and health-care provider). In-depth interviews provided qualitative data. Tools translated to Amharic and back-translated to English. Final tool reviewed by five pediatric oncology nurses/doctors; necessary modifications made. Two data collectors (nurses) trained. Eligibility: parent of a child with any cancer (<13 years) attending inpatient or outpatient unit and < 30 days post-diagnosis. IRB approved.

Results

A total of 167 parents (70 mothers and 97 fathers) completed all tools. Parental role in treatment decision-making was passive 129 (77.2%), collaborative 37 (22.2%), and active 1 (0.6%). Most (82.6%) parents had a role they preferred. Interpersonal trust and parental information preference were statistically significant predictors of passive role matched interview data. Parents seeking much information had an increased role in treatment decision-making. Parents with high trust in the healthcare team became less involved and relinquished more decisions to health providers than parents who were suspicious about all aspects of their child's care and maintained a high decision-making role.

Conclusions

Preferred parental role in treatment decision-making was passive and affected by parent trust in the health provider and informational preference. Therefore, it is essential to improve these relationships and interpersonal trust. Factors influencing parent preferences included understanding of the health provider role in the health system, communication, previous clinical experiences, educational level, level of satisfaction with care, and preferred level of involvement, as documented in in-depth interviews.

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PATIENT AND PUBLIC INVOLVEMENT AND ENGAGEMENT IN PEDIATRIC ONCOLOGY – THAT'S IS HOW IT WORKS!

Session Type
CCI
Date
09/28/2022
Session Time
05:30 PM - 06:30 PM
Room
Rooms 122+123
Presenter
  • Liesa J. J. Weiler-Wichtl (Austria)
Lecture Time
05:50 PM - 06:05 PM

Abstract

Background and Aims

Patient and Public Involvement and Engagement (PPIE) in research, advocates for research conducted ‘with’ not ‘for’ the patients and their families (Polanco, 2021). Considering PPIE in the research process is associated with a higher patient-oriented outcome and meets patients’ needs best. Unfortunately, disparities in PPIE activities and ambiguity of terminology across Europe is more than evident.

Methods

In a multilevel and interdisciplinary approach (including patient representatives) all levels of PPIE (participation, engagement and involvement) were integrated (1) to investigate in a Europe-wide online survey the current knowledge about and attitude towards PPIE among the HCP (n=134) and patients (n=168). (2) To develop effective ways to practice PPIE, a workshop was held with N=47 participants, including dual moderation teams (HCP and patient expert). (3) The outcome resulted in an awareness film.

Results

Generally, PPIE was classified as relevant: HCPs assume to involve in many research areas (participation in Studies, communication on data). However, this is not perceived to the same extent by patients (X2 = 42.70, p < .001). Although, there is willingness on both sides to integrate PPIE, both HCP and patients indicate a low level of knowledge (patients: t(334) = -2.817, p = .004; HCPs: t(270) = -2.883, p = .004). Within HCP, incongruent perspective issues are mentioned significantly more often: disease-related constraints in patients (X2 = 11.86, p < .001) and a lack of objectivity in patients (X2 = 25.52, p < .001). However, HCP and patients are fairly unanimous considering obstacles of implementing PPIE in research (social barriers, lack of resources).

Conclusions

The results highlight the necessity of raising awareness on the “What and How” to implement PPIE in the research process: impart knowledge about the concept via specialist trainings, improve communication and to develop measures that close the gap and meet the needs of both, HCP and patients, equally.

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INTERACTIVE DISCUSSION

Session Type
CCI
Date
09/28/2022
Session Time
05:30 PM - 06:30 PM
Room
Rooms 122+123
Lecture Time
06:05 PM - 06:30 PM