10. Public awareness and communication

Chapter editors: Birkena Qirjazi, Anna Horwood

The way the population perceives a screening programme is exceptionally important when a new programme is starting. As with all aspects of screening, local circumstances should be taken into account when developing means of communication. A health ‘profile’ of the population the communication will be aimed at (parents of children to be screened) needs to be known and taken into account. Questions that should be answered are:

  • what is the level of health literacy of the population?
  • is the population accustomed to preventive healthcare, or are they used to only going to the doctor when obviously ill?
  • what is the level of trust the population has in medical professionals?
  • is healthcare embedded in children’s education? Are there, for example, school nurses?

If the answers to any of these questions would be a barrier to uptake, acceptance or access to follow up, these issues should be addressed before implementing or modifying a service. Pilot projects are recommended before any large scale change is implemented. In general, communication should deliver accurate, practical and concise information, worded in simple and clear language. Whatever medium of communication is used, public communication should always give clear and accurate messages and avoid complex sentences and specialist language.

Any communication should also take into account ethno-cultural values, and beliefs. Different groups will respond differently to various communication methods.

 

Example

When implementing hearing screening in three counties in Albania, it was found that in general, in cities social media such as Facebook were an effective way of communication. In remote towns and villages television and radio were more effective.

 

All communication strategies should be included as part of the screening programme budget. Communication materials take time to be produced and disseminated. It is important that these are considered as part of the programme’s planning. Both the cost and time required to produce communication materials should be considered before deciding whether these are suitable for a specific screening programme.

 

a. Public awareness barriers and facilitators

There are three categories of people to be addressed: 

  • medical staff at child healthcare centres and medical services for children (GPs, paediatricians, ENTs, school nurses, etcetera)
  • general public (parents, preschool- and school teachers, other caregivers)
  • administrative and decision-making professionals

 

General public (parents)

Creating awareness among the general public is a long and ongoing process, which will need continuous input. It is very important though, because low parental awareness, attitudes, misunderstanding and mistrust of a screening programme are significant barriers to participation1.

Different forms of mass communication should be utilised to reach different parts of the population. The medium with the biggest impact is television, especially national channels that broadcast in a vast area. Using television can however be expensive and require extra funds. Radio channels and local television channels can be cheaper alternatives. Given the increasing importance of social media in many people’s lives, using social media as a communication channel could be considered.

Word of mouth from parents of successfully treated children can be very powerful, so case studies, audio or video clips or verbatim quotes can be very valuable and it advisable to incorporate these in communication media.

One should be aware of the possibility that participation in a screening programme may be negatively influenced by activity on the internet in general, and social media in particular. The latter may discourage participation or even propagate disinformation, as has been the case with agitation against vaccinations2.

Leaflets and posters may also be a good way of communication. People can take leaflets home and read them when it suits them. In areas where literacy levels are low, infographics may need to be included in leaflets. It should be noted that when leaflets are simply distributed at a location, people often will not pick them up of their own accord so a more active approach to bringing the leaflets to people’s attention may be required. Maternity hospitals’ lobbies, gynaecologists’ waiting rooms, hospitals and health centre corridors and waiting areas are especially suitable because in these locations expecting parents can be reached so they have the opportunity to learn about screening in advance.

When health institutions have projection screens in the lobbies, these can also be used to inform the public about a screening programme by for example showing a screening test.

Leaflets with facts, pictures, instructions and so forth can be distributed to mothers after delivery and before leaving the hospital together with other information they receive. This can also be done in mothers’ or children’s health centres. It should be noted that leaflets distributed nearer the time of the screening are more likely to be read than if in a general bundle given out when, for example, a child starts school.

Advocacy groups of parents of children with hearing or vision problems can also be relevant partners in communicating a screening programme. In some countries these groups are very well organised and play an active role, both as information providers as well as lobbying for issues important to them.

In some cases, however, these groups have opinions on how hearing or vision problems should be handled, that are different from commonly accepted medical practice. Some organisations of deaf people, for example, do not see deafness as a condition that needs to be cured and therefore oppose certain interventions such as cochlear implants (CIs)3. Therefore their positions on screening and follow-up should be understood first. However, even if the positions of these groups differ from what the programme advocates, they can still be involved in parts of the screening and follow-up that they do not oppose. If their positions are compatible, the parents’ associations can also be partners in communication with the public.

 

Medical staff

When starting a screening programme, the medical staff also needs to be addressed, because they are in direct contact with the public and the information they deliver is crucial. They are involved at all stages of the journey from screening to long term outcomes and are also generally respected community influencers. A pregnant woman and a young mother have regular checks with various medical workers; therefore the information given by them regarding the screening should be clear and uniform.  An informed health worker can be a facilitator while an uninformed one can be a barrier.

When a new programme is starting it is understandable that some healthcare workers without previous experience with screening are not aware of all the intricacies involved in screening or of the implications of the condition they will be screening for. Many may not know much about screening and for example be unaware of what to do when a child does not pass the test. 

This is why it is very important to ensure that as many health workers in the area as possible, and not just the screeners, learn about the screening programme: why it is necessary, how it is done, where the screening tests are offered, what is to be expected from the tests and what follows. They should also have a general idea about clinical pathways. This is particularly important for GPs and personnel working in mother and child centres.

This information can be disseminated in different ways: educational days, special informative sections within an established medical conference or congress or inclusion of the information in general educational curricula for health workers. In countries where Continuing Medical Education (CME) is obligatory, efforts should be made to incorporate the screening information in the existing CME structure. Certificates or diplomas should be awarded at the end of the training courses or seminars, to provide testimony of training to a satisfactory standard.

 

Administrative and decision-making professionals

For advice on communication with administrative and decision-making professionals, see chapter 4.

 

b. Communication plan and materials

The general communication plan should be tailored to the needs of the area where screening will take place, in accordance with the funds available and developed well in advance. Considering the fact that it will take time to effectively communicate the screening programme and influence the public’s perception, it is important to plan different communication activities for an extended period of time.

Written and verbal information should be provided before and at the screening appointment, to avoid unnecessary anxiety and misconceptions about screening. It is of paramount importance that parents get the right message. Especially when parents are informed their child failed the screening test and they may experience anxiety and stress. These negative effects may be countered by providing adequate information and education on follow-up testing4.

The establishment and continuation of a screening programme largely is an issue of available funds and public support for a programme can be a significant asset in acquiring funds. Therefore high levels of participation in the programme are important.

In many new or adapted programmes, great effort is often put into communication at the inception of the programme, but communication also needs to be regularly updated and refreshed and adapted as new parents engage with the service. Low attendance may, for example, be an indication that the communication strategy is not effective in reaching the target audience. Like all other aspects of a screening programme, the communication strategy should be evaluated regularly. Questionnaires for parents can be used to evaluate whether the communication methods chosen have been effective or whether there is a need to modify the communication. Alternatively, before commencing communication parental focus groups or telephone interviews could be set up to help determine the best ways to overcome local communication issues.

Along with the communication plan the materials to be used should be developed such as leaflets, posters, television, social media and radio spots and so forth. For all these it is important to keep the information clear and short and the language simple.

 

 

The following points should always be made when communicating a screening programme:

  • the condition being screened for (hearing or vision loss)
  • information on how common and serious the condition being screened for is
  • why screening is done (early detection of conditions, detection of conditions that would not be noticed in everyday life)
  • the benefits of early detection of the condition
  • an explanation of the screening test and how it is performed
  • what happens if the child does not pass the screening test (a second test, referral)
  • the importance of diagnosis and treatment following not passing the screening test
  • screening is not infallible: false positives and false negatives
  • screening is a snapshot: a negative result does not rule out hearing or vision problems occurring at a later stage
  • possible adverse effects of screening

 

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  1. Vongsachang H, Friedman DS, Inns A et al. (2020): Parent and Teacher Perspectives on Factors Decreasing Participation in School-Based Vision Programs. Ophthalmic Epidemiology 27(3):226-236.
  2. Dubé E, Vivion M, MacDonald NE (2014): Vaccine hesitancy, vaccine refusal and the anti-vaccine movement: influence, impact and implications. Expert Rev Vaccines 14(1):99-117.
  3. Power D (2005): Models of Deafness: Cochlear Implants in the Australian Daily Press. The Journal of Deaf Studies and Deaf Education 10(4):451–459.
  4. Hewlett J, Waisbren SE (2006): A review of the psychosocial effects of false-positive results on parents and current communication practices in newborn screening. J Inherit Metab Dis 29(5):677-82.