Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Communicating with trust: physicians' and parents' perspectives on treatment decision-making in retinoblastoma (126664)

Shraddha Namjoshi 1 , Mahati Chittem 1 , Rajisha Sharma 2 , Lauren Kelada 3 4 5 , Claire Wakefield 3 4 6
  1. Indian Institute of Technology Hyderabad, Sangareddy, TELANGANA, India
  2. Department of Psychology, Jesus and Mary College, University of Delhi, New Delhi, India. , New Delhi, India
  3. School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Sydney, New South Wales , Australia
  4. Discipline of Paediatrics & Child Health, UNSW, Sydney, Sydney, New South Wales, Australia
  5. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, RANDWICK 2031, Sydney, New South Wales, Australia
  6. Division of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University and Stanford Medicine Children’s Health, Palo Alto, California, USA

Objectives

Retinoblastoma is an aggressive eye cancer that affects infants and young children. Treatment usually entails heavy dosage chemotherapy and removal of the eye. Consequently, conversations and decision-making around these treatment options can be challenging for physicians and parents alike. This study aimed to explore: (1) experiences of physicians in developing trust regarding treatment-related discussions with parents, (2) experiences of trust for parents when communicating about the treatment with physicians, and (3) factors that aid in trust-building between physicians and parents.

 

Sample and setting

Physicians (n=6; male=2, female=4; mean age= 40 years) treating children for retinoblastoma and parents (n=15; male=8, female=7; mean age=32 years) were recruited to participate in three distinct focus group discussions: one with physicians, conducted online and two with parents conducted at the treating hospital.

Procedures

The FGD questions centered on both the groups’ experiences and views on trust during retinoblastoma treatment decision-making. Thematic analysis was used to analyze the transcripts and identify patterns across data from all three groups.

 

Results

We developed three overarching themes across both groups: (1) language barriers and cultural taboos pose significant challenges to building trust during treatment-related discussions, (2) reputable and approachable physicians, transparent in their communication elicit greater trust, and (3) physicians valuing the parents’ insights and encouraging their participation was pivotal in trust-building and parents trusted their physicians when they were listened to and reassured and were given specific and accurate information.

 

Conclusions and clinical implications

Findings indicate a need to develop multilingual information aids to address language barriers in retinoblastoma treatment communication. It may be beneficial to design treatment-specific communication skills training for physicians which focus on transparency, reassurance, and provision of information in an empathic and accurate manner. In addition, communication aids (e.g., decision aids) may be one way to help increase parent participation in treatment discussions.