NIHR DC Discover

NIHR Signal Parents want more balanced information on risks and benefits in advance of vaccinations

Published on 27 June 2017

doi: 10.3310/signal-000434

Parents say that insufficient information can lead them to regret their vaccination decision. They often want more information from trusted sources and expect practitioners to discuss both benefits and risks in good time before vaccination.

England and Wales are below World Health Organization (WHO) targets for the uptake of several immunisations. This Cochrane review of 38 qualitative studies focused on the views of parents in relation to communications about vaccinations for children under six. It found that parents who have not had their children vaccinated may distrust information received from state healthcare and government.

These findings could influence future NHS vaccination information, reminders and campaigns. Providing greater access to clear, simple and trustworthy information may be key to making informed choices. Enhanced training for practitioners could help too.

Share your views on the research.

Why was this study needed?

Immunisation is one of the most successful, cost-effective public health measures and consequently a focus for UK healthcare providers. The childhood immunisation programme includes 12 vaccines routinely given to children aged up to nine years.

The WHO regional action plan (2015-20) for Europe aims for countries to achieve at least 95% coverage with three doses of DTP-containing vaccine. Uptake of most individual vaccines in England in 2015-16 had fallen below 95%. For example, around half of healthy five and six year olds had received the flu vaccine. In contrast, nearly 95% of five year olds had received the MMR vaccination, a record high.

Policymakers would like to understand the reasons for this uneven uptake. An NIHR-funded survey of parents (2017) found that concerns about the flu vaccine were associated with non-vaccination. An evaluation of a catch-up campaign aimed at teenagers in 2013 suggested publicity contributed to a rise in uptake amongst younger children.

This Cochrane qualitative review aimed to explore parents and informal caregivers’ experiences of communications about vaccination; and their perceptions of the impacts of communications on decisions.

What did this study do?

This Cochrane systematic review drew on 38 small-scale qualitative studies in 15 mostly high income countries. Ten studies were from the UK. The studies asked parents and informal caregivers about vaccination information and communications relating to children under six years. Most studies used focus groups or interviews. The communications could take place in or be distributed by any setting.

Over a third of the included studies were published before 2010. Settings, populations, vaccination information and practitioner training varied between countries.

To find studies, the authors searched health-focused databases.  In doing so they might have missed research in psychology, educational studies and other social sciences.

The qualitative studies were assessed for reliability using appropriate tools for this study type and the overall confidence in the evidence supporting the statements was rated using a relatively new tool called the GRADE-CERQual approach.

What did it find?

The findings of this qualitative research were presented narratively.

  • Parents generally found the amount of vaccination information they received to be inadequate and wanted more. High confidence; meaning it is highly likely that this review finding is a reasonable representation of the ‘phenomenon of interest’ – in this case parent experience and views.
  • Parents wanted an opportunity to reflect on detailed information and get questions ready before first and booster vaccinations. Moderate confidence; meaning that this is likely to represent parent experience and views.
  • Parents expected to talk about vaccination with health workers in tailored non-judgmental discussions. They would like conversations outside of vaccination appointments, including non-health settings and online. Low confidence; meaning that it is possible this is a reasonable representation of parent experience and views.
  • Some parents spoke of their mistrust of the objectivity of healthcare providers, the mass media and government sources. They believed that practitioners were influenced by financial incentives. This appeared to be especially amongst parents who held uncertain or negative attitudes towards vaccination. Moderate confidence; meaning that this is likely to represent parent experience and views.
  • Endorsement of vaccines from helpful trusted practitioners could lead to decisions to vaccinate. However, parents thought that pressure to vaccinate and prominent health campaigns could push them in either direction. High confidence; meaning that it is highly likely
  • Some UK parents remained concerned about the discredited link between MMR and autism.
  • Migrants (including those to the UK) could find it difficult to access translated information.

The last two findings were based on a limited number of studies and judged as lower quality.

What does current guidance say on this issue?

The 2009 NICE guideline on reducing differences in immunisation uptake recommended that healthcare workers provide tailored information and support, and discuss concerns with parents. In the linked 2017 Quality Standard, NICE proposes that services measure the number of recalls and reminders that are sent to non-vaccinated children.

Public Health England’s 2009 Core Curriculum for Immunisation Training stated that practitioners should address parents’ misperceptions, explain risks, provide leaflets in advance of vaccinations, and respect differing views. A recently published Royal College of Nursing quality framework in 2015 advises that all clinical and non-clinical children’s services staff should know how to signpost to vaccination information, and deal with controversies.

What are the implications?

Given the continued mistrust and confusion, NHS vaccination reminders and campaigns might wish to focus more on dispelling misinformation spread by media and social media.

The NHS could, for example, distribute balanced information from independent organisations trusted by parents. Disseminating through non-NHS settings such as children’s centres, supermarkets and pharmacies might help to inform parents before vaccination appointments. Enhanced training and advice for practitioners, and funding additional time spent with parents, may be needed.

The review findings support immunisation guidance from NICE, PHE and the Royal College of Nursing. Further research is needed to understand the decisions of groups highlighted in NICE guidance, such as homeless families, non-English speaking parents and teenage parents.

Citation and Funding

Ames HM, Glenton C, Lewin S. Parents' and informal caregivers' views and experiences of communication about routine childhood vaccination: a synthesis of qualitative evidence. Cochrane Database Syst Rev. 2017;(2):CD011787.

The UK’s Effective Health Care Research Consortium contributed funding to this review.

Bibliography

NHS Choices. Childhood vaccines timeline. London: Department of Health; 2016.

NICE. Immunisations: reducing differences in uptake in under 19s. PH21. London: National Institute for Health and Care Excellence; 2009.

NICE. Vaccine uptake in under 19s. QS145. London: National Institute for Health and Care Excellence; 2017.

PHE. Core Curriculum for Immunisation Training. London: Health Protection Agency; 2009.

PHE. The Green Book (Immunisation against infectious disease).  London: Public Heath England; 2013.

RCN. Supporting the delivery of immunisation education: A quality framework to support the implementation of national standards and guidelines on immunisation training. London: Royal College of Nursing; 2015.

Why was this study needed?

Immunisation is one of the most successful, cost-effective public health measures and consequently a focus for UK healthcare providers. The childhood immunisation programme includes 12 vaccines routinely given to children aged up to nine years.

The WHO regional action plan (2015-20) for Europe aims for countries to achieve at least 95% coverage with three doses of DTP-containing vaccine. Uptake of most individual vaccines in England in 2015-16 had fallen below 95%. For example, around half of healthy five and six year olds had received the flu vaccine. In contrast, nearly 95% of five year olds had received the MMR vaccination, a record high.

Policymakers would like to understand the reasons for this uneven uptake. An NIHR-funded survey of parents (2017) found that concerns about the flu vaccine were associated with non-vaccination. An evaluation of a catch-up campaign aimed at teenagers in 2013 suggested publicity contributed to a rise in uptake amongst younger children.

This Cochrane qualitative review aimed to explore parents and informal caregivers’ experiences of communications about vaccination; and their perceptions of the impacts of communications on decisions.

What did this study do?

This Cochrane systematic review drew on 38 small-scale qualitative studies in 15 mostly high income countries. Ten studies were from the UK. The studies asked parents and informal caregivers about vaccination information and communications relating to children under six years. Most studies used focus groups or interviews. The communications could take place in or be distributed by any setting.

Over a third of the included studies were published before 2010. Settings, populations, vaccination information and practitioner training varied between countries.

To find studies, the authors searched health-focused databases.  In doing so they might have missed research in psychology, educational studies and other social sciences.

The qualitative studies were assessed for reliability using appropriate tools for this study type and the overall confidence in the evidence supporting the statements was rated using a relatively new tool called the GRADE-CERQual approach.

What did it find?

The findings of this qualitative research were presented narratively.

  • Parents generally found the amount of vaccination information they received to be inadequate and wanted more. High confidence; meaning it is highly likely that this review finding is a reasonable representation of the ‘phenomenon of interest’ – in this case parent experience and views.
  • Parents wanted an opportunity to reflect on detailed information and get questions ready before first and booster vaccinations. Moderate confidence; meaning that this is likely to represent parent experience and views.
  • Parents expected to talk about vaccination with health workers in tailored non-judgmental discussions. They would like conversations outside of vaccination appointments, including non-health settings and online. Low confidence; meaning that it is possible this is a reasonable representation of parent experience and views.
  • Some parents spoke of their mistrust of the objectivity of healthcare providers, the mass media and government sources. They believed that practitioners were influenced by financial incentives. This appeared to be especially amongst parents who held uncertain or negative attitudes towards vaccination. Moderate confidence; meaning that this is likely to represent parent experience and views.
  • Endorsement of vaccines from helpful trusted practitioners could lead to decisions to vaccinate. However, parents thought that pressure to vaccinate and prominent health campaigns could push them in either direction. High confidence; meaning that it is highly likely
  • Some UK parents remained concerned about the discredited link between MMR and autism.
  • Migrants (including those to the UK) could find it difficult to access translated information.

The last two findings were based on a limited number of studies and judged as lower quality.

What does current guidance say on this issue?

The 2009 NICE guideline on reducing differences in immunisation uptake recommended that healthcare workers provide tailored information and support, and discuss concerns with parents. In the linked 2017 Quality Standard, NICE proposes that services measure the number of recalls and reminders that are sent to non-vaccinated children.

Public Health England’s 2009 Core Curriculum for Immunisation Training stated that practitioners should address parents’ misperceptions, explain risks, provide leaflets in advance of vaccinations, and respect differing views. A recently published Royal College of Nursing quality framework in 2015 advises that all clinical and non-clinical children’s services staff should know how to signpost to vaccination information, and deal with controversies.

What are the implications?

Given the continued mistrust and confusion, NHS vaccination reminders and campaigns might wish to focus more on dispelling misinformation spread by media and social media.

The NHS could, for example, distribute balanced information from independent organisations trusted by parents. Disseminating through non-NHS settings such as children’s centres, supermarkets and pharmacies might help to inform parents before vaccination appointments. Enhanced training and advice for practitioners, and funding additional time spent with parents, may be needed.

The review findings support immunisation guidance from NICE, PHE and the Royal College of Nursing. Further research is needed to understand the decisions of groups highlighted in NICE guidance, such as homeless families, non-English speaking parents and teenage parents.

Citation and Funding

Ames HM, Glenton C, Lewin S. Parents' and informal caregivers' views and experiences of communication about routine childhood vaccination: a synthesis of qualitative evidence. Cochrane Database Syst Rev. 2017;(2):CD011787.

The UK’s Effective Health Care Research Consortium contributed funding to this review.

Bibliography

NHS Choices. Childhood vaccines timeline. London: Department of Health; 2016.

NICE. Immunisations: reducing differences in uptake in under 19s. PH21. London: National Institute for Health and Care Excellence; 2009.

NICE. Vaccine uptake in under 19s. QS145. London: National Institute for Health and Care Excellence; 2017.

PHE. Core Curriculum for Immunisation Training. London: Health Protection Agency; 2009.

PHE. The Green Book (Immunisation against infectious disease).  London: Public Heath England; 2013.

RCN. Supporting the delivery of immunisation education: A quality framework to support the implementation of national standards and guidelines on immunisation training. London: Royal College of Nursing; 2015.

Parents' and informal caregivers' views and experiences of communication about routine childhood vaccination: a synthesis of qualitative evidence

Published on 9 February 2017

Ames, H. M.,Glenton, C.,Lewin, S.

Cochrane Database Syst Rev Volume 2 , 2017

BACKGROUND: Childhood vaccination is an effective way to prevent serious childhood illnesses, but many children do not receive all the recommended vaccines. There are various reasons for this; some parents lack access because of poor quality health services, long distances or lack of money. Other parents may not trust vaccines or the healthcare workers who provide them, or they may not see the need for vaccination due to a lack of information or misinformation about how vaccinations work and the diseases they can prevent.Communication with parents about childhood vaccinations is one way of addressing these issues. Communication can take place at healthcare facilities, at home or in the community. Communication can be two-way, for example face-to-face discussions between parents and healthcare providers, or one-way, for instance via text messages, posters or radio programmes. Some types of communication enable parents to actively discuss vaccines and their benefits and harms, as well as diseases they can prevent. Other communication types simply give information about vaccination issues or when and where vaccines are available. People involved in vaccine programmes need to understand how parents experience different types of communication about vaccination and how this influences their decision to vaccinate. OBJECTIVES: The specific objectives of the review were to identify, appraise and synthesise qualitative studies exploring: parents' and informal caregivers' views and experiences regarding communication about childhood vaccinations and the manner in which it is communicated; and the influence that vaccination communication has on parents' and informal caregivers' decisions regarding childhood vaccination. SEARCH METHODS: We searched MEDLINE (OvidSP), MEDLINE In-process and Other Non-Index Citations (Ovid SP), Embase (Ovid), CINAHL (EbscoHOST), and Anthropology Plus (EbscoHost) databases for eligible studies from inception to 30 August 2016. We developed search strategies for each database, using guidelines developed by the Cochrane Qualitative Research Methods Group for searching for qualitative evidence as well as modified versions of the search developed for three related reviews of effectiveness. There were no date or geographic restrictions for the search. SELECTION CRITERIA: We included studies that utilised qualitative methods for data collection and analysis; focused on the views and experiences of parents and informal caregivers regarding information about vaccination for children aged up to six years; and were from any setting globally where information about childhood vaccinations was communicated or distributed. DATA COLLECTION AND ANALYSIS: We used maximum variation purposive sampling for data synthesis, using a three-step sampling frame. We conducted a thematic analysis using a constant comparison strategy for data extraction and synthesis. We assessed our confidence in the findings using the GRADE-CERQual approach. High confidence suggests that it is highly likely that the review finding is a reasonable representation of the phenomenon of interest, while very low confidence indicates that it is not clear whether the review finding is a reasonable representation of it. Using a matrix model, we then integrated our findings with those from other Cochrane reviews that assessed the effects of different communication strategies on parents' knowledge, attitudes and behaviour about childhood vaccination. MAIN RESULTS: We included 38 studies, mostly from high-income countries, many of which explored mothers' perceptions of vaccine communication. Some focused on the MMR (measles, mumps, rubella) vaccine.In general, parents wanted more information than they were getting (high confidence in the evidence). Lack of information led to worry and regret about vaccination decisions among some parents (moderate confidence).Parents wanted balanced information about vaccination benefits and harms (high confidence), presented clearly and simply (moderate confidence) and tailored to their situation (low confidence in the evidence). Parents wanted vaccination information to be available at a wider variety of locations, including outside health services (low confidence) and in good time before each vaccination appointment (moderate confidence).Parents viewed health workers as an important source of information and had specific expectations of their interactions with them (high confidence). Poor communication and negative relationships with health workers sometimes impacted on vaccination decisions (moderate confidence).Parents generally found it difficult to know which vaccination information source to trust and challenging to find information they felt was unbiased and balanced (high confidence).The amount of information parents wanted and the sources they felt could be trusted appeared to be linked to acceptance of vaccination, with parents who were more hesitant wanting more information (low to moderate confidence).Our synthesis and comparison of the qualitative evidence shows that most of the trial interventions addressed at least one or two key aspects of communication, including the provision of information prior to the vaccination appointment and tailoring information to parents' needs. None of the interventions appeared to respond to negative media stories or address parental perceptions of health worker motives. AUTHORS' CONCLUSIONS: We have high or moderate confidence in the evidence contributing to several review findings. Further research, especially in rural and low- to middle-income country settings, could strengthen evidence for the findings where we had low or very low confidence. Planners should consider the timing for making vaccination information available to parents, the settings where information is available, the provision of impartial and clear information tailored to parental needs, and parents' perceptions of health workers and the information provided.

Qualitative research usually uses interviews, focus groups, documents or observations to explore the range of participants’ perceptions, experiences and behaviours. Findings are presented narratively rather than using statistics or numbers. Samples are typically much smaller than in quantitative research.

The parents who participated in the research studies were mainly mothers. No evidence was available specifically for fathers or informal caregivers such as grandparents.

Communications with parents can be one-way, as in information leaflets or mass media. They can be interactive, such as discussions with practitioners, or social media. The settings included in this review included healthcare, community venues and homes.

Expert commentary

Often in evidence based medicine, qualitative evidence is not seen to be as important as quantitative, but this paper demonstrates how valuable it can be. Recent measles outbreaks in the UK remind us of the importance of good childhood vaccination coverage. In addition, the MMR scandal reminded all healthcare professionals of the need for evidence-based policy and the harm that can occur when caregivers find it hard to navigate evidence.

This work helps inform healthcare professionals about the information parents and caregivers want and expect to allow them to give informed consent for vaccination. We ignore this information at our peril.

Dr Allison Duggal, Deputy Director Public Health, Kent County Council