Living with Retinoblastoma : psychological and social consequencesThe Childhood Eye Cancer Trust, along with the Open University, jointly funded a project to look into the psychological consequences of living with retinoblastoma after treatment.
The research was carried out by Dr Sarah Norgate and Dr Karen Littleton from the Centre for Childhood Development and Learning, Open University, Milton Keynes.
 You can download a summary of the report here
Below is an extract from the report, written for the Spring 2005 issue of our newsletter, Infocus.
Research Findings from the project ‘Living with Retinoblastoma:
Psychological and Social Consequences’
The project involved a series of studies investigating the impact of Rb on 34 families living in the UK, with a child aged under 6 years, diagnosed with either
uni-lateral or bi-lateral form of the disease.
Of these, 24 participated in the ‘comprehensive’ study, involving home visits and 10 families were involved by questionnaire. As the project addressed a wide number of areas, just a selection of the main research findings appear below.
FINDING 1: What sort of wording might be used in future campaigns to raise public awareness of the first signs of Retinoblastoma?
The most common reason for parents deciding not to seek immediate medical attention was the attribution of their concerns to various lighting conditions rather than there being anything wrong with the child’s eye. This outcome suggests it would be important to use wording in public awareness raising campaigns that focuses not only on the nature of presentation of the first signs but also emphasises that even one sighting of any eye-related anomaly (or other relevant behaviour like not looking at faces) - irrespective of the lighting conditions - might not feel sufficient but actually is sufficient to seek medical advice.
FINDING 2: What are parental information and support needs at different points in the treatment process?
A listing of 59 parental needs items were organised in order of perceived importance and according to the extent to which each need was perceived as being met. Listed below are examples of items parents rated as being of high importance. These examples were selected for covering the two extremes, either where parents either perceived needs as being ‘well met’ (+) or ‘not being met’ (-).
Before diagnosis
Knowing that enucleation might be a necessary procedure (+)
Having written information about what to expect on the first hospital appointment (-)
Knowing what technical medical terms mean (-)
After diagnosis and before enucleation
Knowing what Retinoblastoma is (+)
Having written information about Retinoblastoma (+)
Having access to ‘My Pretend Eye’ or similar (+)
Knowing about others’ personal experiences of living with an artificial eye (-)
Adapting to living with an artificial eye.
Knowing how to work with your orbital prosthesist to get what you want for your child (+).
FINDING 3: What were parental preferences for the timing of information and support?
Although there can be no single ‘recipe’ for timing access to information and support, there were nevertheless clear parental preferences throughout the treatment process, for example, written information about The Artifical Eye Service (AES) was mostly preferred a week after enucleation whereas a ‘phone call from the AES would have been preferred about 2 weeks after enucleation.
FINDING 4: What parental reactions were typical at different time-points?
The study drew together examples of ‘typical’ parental reactions at various points in the treatment process so that they could potentially be used as a resource for parents of children newly diagnosed with the condition, as well aiding the identification of areas where further support and information is needed.
FINDING 5: Were there any key coping strategies used by parents?
The coping strategies parents found most helpful in the month following enucleation were maintaining family integration, gaining family cooperation and keeping an optimistic definition of the difficult situation.
FINDING 6: Overview of child reactions
Although no severe or substantive behavioural changes were found to be typical of the group of children with Retinoblastoma as a whole, parental reports of sustained/increased anxiety over successive EUAs shows that should be an urgent area for investigation.
FINDING 7: What were the concerns of the brothers and sisters of affected children?
- Being left out of conversations.
- Not understanding a word that anyone was saying.
- How to fight it? Is it common? What is normal? Whether it comes back?
- Fear over whether their affected sibling would die.
- The meaning of their experience in terms of faith/loss of faith.
- Other people’s reactions to their brother or sister.
- Knowing about how other families coped with it, and how it affected them.
- Things that they did not want to ask mum or dad because it would upset them.
- The chance to talk to another sibling who was going through a similar thing .
FINDING 8: Do unilaterally enucleated children adapt their head movements so that they can access information on their affected side?
Initial findings were encouraging because they showed children making adaptative head movements on the side of their non-functioning eye, which shows that at least around the familiar situation of the kitchen table, affected children are capable of compensating for monocular vision by moving their head around closer to their parent. However, what remains unknown is whether time since enucleation, or age at enucleation, affects children’s ability to effectively adapt. Nor do we know whether more complex situations (e.g. hazards while walking on pavement) would still result in the same successful adaptation. In the event that individual children are identified at risk or certain situations are identified as more difficult for children with Retinoblastoma, there is scope to design intervention studies.
FINDING 9: What kinds of explanations do children give for an eye being poorly?
Children enucleated as babies gave explanations for a toy’s poorly eye such
as “his eye is dirty”, “a hurting eye” or “needing a new eye”. Children enucleated at an older age, made references to “bad eye” “the tonsil is making the eye wrong”, “sore eye”, “nasty lumps” or “little bad cells”. By finding out why children think their eye is affected offers the chance to ‘nip in the bud’ any misconceptions, which might in the longer term impact on their self-understanding, confidence and self-esteem.
FINDING 10: What issues do families face when their child is living with an artificial eye?
Parents and children were very satisfied in the quality of the appearance of their prosthesis, but there appear to be conflicting views between professionals and parents over the extent to which children feel physical pressure when their parent is trying to remove or insert their prosthesis. From a psychological point of view, regardless of whether the child senses pain or feels pressure, the majority of children are likely to be showing distress in response to their memory of previous experiences where health professionals have touched their eye.
There is a need to develop resources which reflect the diversity of ways parents and children use labels to differentiate their prosthetic eye from their other eye. There were concerns about the use of the word ‘pretend’ in the context of a young children making sense of their visual status. |
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