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

Exploring the supportive care and information needs of parents of children with retinoblastoma (126673)

Shraddha Namjoshi 1 , Mahati Chittem 1 , Swathi Kaliki 2 3 , Lauren Kelada 4 5 6 , Claire E Wakefield 4 5 7
  1. Indian Institute of Technology Hyderabad, Sangareddy, TELANGANA, India
  2. Department of Ophthalmic Plastic & Facial Aesthetic Surgery, Orbit & Ocular Oncology, LV Prasad Eye Institute, Hyderabad, Telangana, India
  3. Department of Ophthalmology, URMC, University of Rochester, Monroe County, New York, New York, USA
  4. School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Sydney, New South Wales , Australia
  5. Discipline of Paediatrics & Child Health, UNSW, Sydney, Sydney, New South Wales, Australia
  6. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, RANDWICK 2031, Sydney, New South Wales, Australia
  7. 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

India has around 1500 new cases of retinoblastoma each year, with common treatments being systemic chemotherapy and enucleation. Parents’ information and supportive care needs may be unmet. This study aimed to: (1) identify unmet support and information needs of parents of children undergoing treatment for retinoblastoma, (2) explore differences in unmet needs between mothers versus fathers, and (3) explore needs of parents whose child underwent an enucleation as well as the needs of those whose children received chemotherapy (exclusively or after enucleation).

 

Sample and setting

Mothers (n=32; mean age=28.46 years) and fathers (n=30; mean age=32.42 years) of children being treated for retinoblastoma at a tertiary care hospital in India were invited to participate in the study.

Procedures

Individual, semi-structured, audio-recorded interviews were conducted at the treating hospital. Data saturation was reached, as no new themes were emerging from the interviews. Framework analysis followed by thematic analysis was used to analyze the transcripts.

 

Results

Three themes emerged, outlining unmet needs for: (1) emotional and financial support, (2) improved communication with healthcare providers and other family members and (3) logistical and peer support from parents of other children being treated for retinoblastoma. Mothers’ most commonly reported (1) need for support taking care of the unwell child and their siblings, and (2) for familial support for domestic labor tasks. Parents of children who underwent enucleations reported emotional distress over the loss of a vital organ, while parents of children who underwent chemotherapy reported need for more treatment-related and prognostic information.

 

Conclusions and clinical implications

Findings indicate the need for systemic solutions at the treating hospital including psychosocial support by trained counsellors and facilitating peer support between parents offering solutions to caregiving needs. It would also be beneficial for mothers and fathers to receive person-centered and treatment-specific interventions (e.g., targeted psychoeducation).