We spoke to researcher Munachiso Samuel-Onyeka about her studies, and also her experiences of her son having retinoblastoma (Rb).

What is your working or educational background? 

I studied Optometry and worked as an Optometrist before my master’s degree studies that commenced in September of 2022 at the University of Bedfordshire, Luton Campus. 

Joseph with his parents

What is your research about? 

The study looked at the general Rb community involving under-developed, developing, and developed nations and was called “A systematic review on the impact of Caregiving to Children with Retinoblastoma: A lived experiences of Caregivers.”  

How did you conduct your research? 

I carried out a thorough step-by-step systematic review in line with the PRISMA reporting guidelines. A systemic review means secondary research that involves synthesising already existing primary research on caregivers’ lived experiences in different places. 

Joseph has a bandage over his eye. He is looking at his mum as she cuddles him smiling

What were your findings? What do you hope may be changed/improved as a result of this research? 

Findings from my research showed that the caregiving burden is a significant public health issue that needs great attention, especially in underdeveloped and developing nations. Hence, the need for an increase in raising awareness of Rb, improved care pathways, and the duty of care is very important; these can only be achieved through regular engagement with the carers by the treating multidisciplinary professionals on how to treat the people for whom the care is designed as well as health need assessments. 

Building trust and improving patient-provider communication will help practitioners and healthcare providers raise knowledge of retinoblastoma’s early signs and symptoms, and the need for better health-seeking behaviour in the local communities of both developing, underdeveloped, and developed nations. 

Additionally, the findings revealed that cognitive-behavioural interventions could reduce the elevated levels of depression, anxiety, and stress in the parents of children with retinoblastoma. Following their therapy sections, they found that the parents of children with retinoblastoma experienced considerably lower levels of stress, anxiety, and sadness after treatment sessions therefore my research is recommending more cognitive-behavioural interventions for Rb Caregivers. 

Joseph is sat on his mum's lap

What inspired you to take on this research?  

I was inspired by my own lived experiences which accounts from my son being diagnosed with unilateral Rb, the treatment processes and period, and the follow-ups. I know lots of caregivers are going through such or even more, so I felt I could come up with the research to enlighten and reemphasise on existing recommendations that could help policymakers in the health and social sector, support organisations, NGOs (Non-governmental/Profitable Organisations) and the general public at large. 

Joseph is smiling in a white hospital gown

Can you tell us about Joseph’s Rb? 

Joseph was diagnosed in November 2018, he was about 8 months old at the Lagos State University Teaching Hospital, Lagos, Nigeria. His diagnosis was delayed due to nationwide doctors’ indefinite strike action at that time. We sought for his treatment in South Africa where we had got the best-considered treatment quote among other locations in the US, the UK, and UAE. 

Joseph had a white glow in the right eye – which we discovered after we took a photograph with him, one of the eyes (the affected right eye) was glowing with a reflective white background. He also had a squint in his right eye and reduced vision in the right eye when I used my hand to close the left eye. Meanwhile, I did a fundoscopy [examination of the eye] for him and got a red reflex in the left eye and a very dark background in the right eye which got us worried. 

 I took Joseph to see an ophthalmologist. Initially he did not see anything, until he carried out an Ocular Bscan which showed the tumour protruding from the retina layer. An Ocular Bscan, otherwise known as brightness scan, is a method of eye assessment via ultrasound. It can be performed directly on the anaesthetised eye in cases of tumours or trauma in children. 

Joseph is with his parents after his eye was enucleated

He was referred to a teaching hospital for further examinations and confirmation by a Paediatric Ophthalmologist. 

Joseph had his right eye enucleated (removed) and 6 cycles of chemotherapy (Vincristine, Etoposide, Carboplatin). Now, he is doing great and very well.