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An analysis of the appropriateness of information available to parents and carers of brain-injured children. 

Is the available information clear and understandable?

This research aimed to assess the readability and understandability of the information material currently available for parents and carers of children with brain injury or other neurological conditions. The practice involved assessing the readability of the information material by administering a readability test, gaining parents’ opinions and a test of factual accuracy. The readability test used was the Flesch Ease of Reading Score, which gives a document a score between 0 and 100 depending on how readable it is. A score of between 60-70 is considered readable for the majority of the population.

The need for information

Relevant and accessible information is vitally important for families with a disabled child. Information and knowledge are necessary for family members with a disabled child to enable an understanding of the changes that take place, and to find support and ways of coping with the demands and problems they encounter. The need for information and knowledge regarding their child’s disability, available services, benefit entitlements, and to support their child’s development is common to all families of disabled children. Providing parents with as much information and support as possible not only benefits the parents, but also, ensures that the child develops fully and achieves as much as possible. Parents or carers of a disabled child rely greatly on information available to them regarding the child’s diagnosis and the potential sources of practical help and financial support available. Previous research, however, has revealed that there are problems with accessing and understanding that information. The research aimed to address these issues by investigating the following issues:
  • Is the information material and knowledge available to parents and carers of children with brain injuries or neurological conditions appropriate?
  • How satisfied are parents and carers with current information and knowledge?
  • Is there any specific information that parents and carers are most or least satisfied with?
  • Is it possible to develop a protocol for the assessment of written information currently being directed at parents or carers of children with a brain injury or other neurological condition that includes an assessment of factual accuracy, readability and understandability?

Project design

Parents and carers of children with brain injuries were invited to take part in the study by letter. Participants were then sent a mail questionnaire to complete and were asked if they would be willing to take part in an interview. Face-toface and telephone interviews were carried out with willing parents and carers.

Parents interviewed were shown three pieces of written material (from websites and leaflets) and asked their opinions on readability. This information was then tested for readability by applying a readability formula (Flesch Reading Ease Test) and testing it for its factual accuracy. Forty nine parents and carers took part in the study.

Results

The results showed that parents need different knowledge concerning their child’s disability at different stages of their child’s life. Important periods identified included at birth, when receiving the diagnosis, when starting or changing schools, during puberty and transition into adult services. Parents’ satisfaction with the knowledge available varied between the sources. The best sources identified included other parents and charities or organisations, and the worst sources included social workers, social services and medical professionals. The majority of parents were most satisfied with the facts available on their child’s education but were least satisfied with those that related to changes that occur when their child reaches adulthood. Parents made a number of suggestions for improvements¸ which included: ensuring knowledge is ‘more accessible’, regularly updated and that care is taken to ensure that parents and carers are fully informed at each stage of the child’s development.

Readability of information material available to parents and carers

When parents were asked how, in general, they rated the available information, i.e. the readability and understandability of the material, the responses were varied. Less than half of the sample felt information was just right, therefore, indicating that information is not written at an appropriate level for the general population.

When tested for readability with the Flesch Reading Ease formula, 35.7% of the written information material scored below the standard 60 and therefore, is considered difficult to read. However, when the written information was presented to parents, they rated it more positively; many parents rated over half of the written material favourably and a further 22% had mixed opinions. The research revealed that the Flesch Reading Ease Score and an individual’s opinion do not match. However, the majority of the written information was found to be factually accurate, which differs from previous research.

Discussion/recommendations

The parents and carers of disabled children work twenty four hours a day, seven days a week and it is clear that the availability and understandability of information is crucial to their wellbeing.

Parents made several suggestions to improve information and help make their lives easier. Therefore, by listening to the parents and carers, improvements can be made.

Information, services and professionals need to be more co-ordinated, and knowledge should be shared with all those involved with the disabled child and their family.

Information should be regularly available and combined in one place so parents do not have to struggle and plough through services. This information should be combined in a pack, booklet or package. Having a single information point, source, person or service would be helpful for parents.

Improvements need to be made in many areas including diagnosis, benefits, equipment, transition and adult services. In addition, information should be updated regularly and given to parents at relevant or particular times, for example, at diagnosis, school age, and at transition etc.

Parents needs change and different information is required at different periods during the child’s life. Professionals and services need to take note of this and present information to parents at a time that is suitable for them.

Information needs to be more accessible so parents do not have to search and fight for it. Many parents are unaware of what is available.

The whole family; parents, the disabled child, siblings, grandparents and the wider family need information and support.

More support and input from professionals including health, social and medical professionals is needed.

Information needs to be made easier to understand for those whose first language is not English or those who are less literate.

It is important that attention is paid to the presentation of information. Professionals need to be aware of how they present information to parents.

Attention needs to be paid to the readability of written information including that placed on websites. Readability measures need to take into account individuals’ opinions.

This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.

Page last updated: 22/12/2011 10:36 
 
 
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