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Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children
  1. Deborah Bird1,
  2. Lorraine Culley2,
  3. Monica Lakhanpaul3
  1. 1Department of Medical and Social Care Education, University of Leicester, Leicester, UK
  2. 2School of Applied Social Science, De Montfort University, Leicester, UK
  3. 3General and Adolescent Paediatrics Unit, UCL Institute of Child Health, London, UK
  1. Correspondence to Professor Monica Lakhanpaul, General and Adolescent Paediatrics Unit, UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; m.lakhanpaul{at}ucl.ac.uk

Abstract

Involvement of service users in decision making, in both clinical and research settings, has become a central feature of many health and research funding policies in the last 15 years. Over the same timeframe, there has been an increasing focus on children's rights, promoted by the UN Convention of the Rights of the Child, which gives children a right to be involved in decisions that affect their lives. In a research setting, this has resulted in increased engagement of children in research, as opposed to relying on parents or carers to represent their children, and a shift from research on children to research with children.

In this article, we discuss collaboration with children under the age of 16 years in health research: what this means and why (or why not) to do it. The definition of collaboration is discussed and the lines among collaboration, involvement, participation and participatory research considered. The risks and benefits of collaboration are reviewed, both theoretical and evidence based, where evidence exists. The review ends with a look towards the future including the need for agreed definitions, better reporting of collaboration and other patient and public involvement activities with children to build up the much needed evidence base, the need for cost–benefit evaluations and, most importantly, the need for careful consideration as to whether collaborating with children is appropriate in each circumstance.

  • Health services research
  • Children's Rights
  • Paediatric Practice
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Introduction

Over the past 15 years the involvement of service users in decision making, in both clinical and research settings, has become a central feature of health service and research policy.1 Over the same timeframe, there has been an increasing focus on children's’ rights, promoted by the UN Convention of the Rights of the Child2 which gives children a right to be involved in decisions that affect their lives and a requirement for their views to be listened to. In a research setting, this has resulted in a shift towards engaging children directly in research, as opposed to relying on parents or carers to represent their children, and the move from research on children to research with children.3 ,4

Organisations have been established to promote patient and public involvement (PPI) in many aspects of public life and research, for example, INVOLVE, an organisation established as part of the UK National Institute of Health Research to promote and assist PPI in health research. PPI is defined as ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants’. INVOLVE further describes three approaches to PPI: consultation, collaboration and user-led. INVOLVE stresses that these approaches are equal in value and represent a continuum;5 others suggest a more hierarchical approach and that collaboration achieves better quality research than consultation.6 Yet despite one in four A&E visits, one in three calls to National Health Service (NHS) direct and 40% of general practitioner consultations being for children,7 consideration of how PPI and collaboration in particular with children should or could be achieved has been minimal.

In this article, we discuss collaboration with children in health research: what this means and why (or why not) to do it.

Defining children

The UN Convention of the Rights of the Child defines a child as a person under the age of 18 years, but not all organisations follow this; for example, the UK Department of Health (DoH)8 defines a child as a person under the age of 16 years. In research reporting, children and young people are often combined as one group, CYP, and again, definitions of ‘young people’ vary: the UK DoH uses those aged 16–19 years while others use 16–25 years. While there are similarities with regard to the benefits and challenges of engaging CYP with research, we would argue that ‘children’ and ‘young people’ are still different demographic groups with different needs, especially with regard to ethical and practical considerations that research with those under 16 years old entails. This article therefore does not use CYP as a demographic, and instead focuses on children as those under the age of 16 years, including data from young people only where CYP were combined and data cannot be separated.

Defining collaboration with children

Collaboration can be defined as ‘an ongoing partnership between the public/patients and the research team such that decision making is shared, such as taking part in an advisory group or collaborating with researchers to design, undertake and/or disseminate the results of a research project’.5 Examples of collaboration with children in health research are limited but include:

  • ‘Invisible Families: The Strengths and Needs of Black Families in which Young People have Caring Responsibilities’.9 This study involved 13 children aged 5–16 years who worked with the research team on formulating the study design.

  • ‘Understanding Children's Communication of their Emotional and Psychological Well-being’.10 This study conducted at Swansea University and supervised by Barnardo's Cymru Research and Policy Unit was run in partnership with Cardiff's Children and Young People's Partnership (CCYP). The CCYP, which includes children aged 14 and 15 years, identified the need for and prioritised the project.

In other fields of research there are additional excellent examples of collaboration with children, including:

  • ‘Children as Research Collaborators: issues and reflections from a mobility study in sub-Saharan Africa’.11 The research team collaborated with 19 children initially to develop the study methods, then trained the children in research methods and ethical procedures and supported them in conducting parts of the research directly, with a further 51 children aged between 10 and 18 years involved in a similar manner over the life of the project.

  • ‘Involving Children in the Design and Development of Research Instruments and Data Collection Procedures’.12 In this study, children aged 8–14 years were involved in reviewing and revising questionnaires and data collection methods prior to the use of the revised tools across 23 primary schools in Northern Ireland.

In these examples, the children collaborated with researchers to set the research topics, design the studies, collect data and conduct data analysis. Importantly, they were not the research subjects. This distinction between being involved with research and participating in research has been carefully delineated by some research organisations; for example, INVOLVE specifically states that involvement (which encompasses collaboration) refers to ‘active involvement between people who use services, carers and researchers, rather than the use of people as participants in research or as research subjects’.5 However, this is not an internationally accepted divide: there are research reports that use involvement to mean being a research subject,13 while others use participation to indicate being a research subject,14–16 and others who use participation to mean involvement2 ,17 ,18 and some who use other terms entirely, such as partnership.19 Understanding and clarifying these terms is important for various reasons:

  1. Gathering and comparing evidence is problematic when terminology varies from one research paper to another and is not clearly defined within the paper.

  2. Medical research funders often request details of the presence and nature of any PPI activities, including collaboration, to be undertaken with any research study; therefore, joint and clear understandings of PPI definitions and activities are vital. A recent report ‘Public involvement in research applications to the National Research Ethics Service20 highlighted the fact that 43% of researchers responding had misunderstood what involvement means: they ticked the box to say they were involving the public but their free-text responses described plans for recruitment or dissemination, not public involvement. Such misunderstandings could lead to applications being rejected or unrealistic expectations on either side.

  3. Defining activities as involvement, participation or collaboration may have implications for research funding and ethical approvals. Funding opportunities for PPI activities (as opposed to research activities) can be limited, leading to the potential for under-resourced attempts to collaborate with children without the necessary training or tools. With regard to ethics, different organisations require different ethical approvals for different activities. For example, in the UK all research activities (eg, focus groups, interviews, blood tests, scans, drug trials) involving NHS patients (and their families) require stringent ethical approvals to be sought. However, if the same activities with the same children and families were labelled collaboration as part of PPI, they would not require the same ethical approvals. While this might not work for drug trials, focus groups, interviews and workshops are commonly used collaboration activities. This division between research and other activities was intended to minimise the red tape in preapplication and service evaluation work but can be exploited to conduct collaboration activities without ethical review. While this issue may be specific to the UK, it is still concerning.

Further complicating the divides and definitions between involvement and participation is participatory research (PR). PR is an approach to research that involves establishing an ongoing partnership between a specific group of people and researchers to then work together to set research agendas, design research components, conduct, evaluate and implement the research.21 PR studies are often reported in terms of involvement, participation, collaboration or partnership. While partnership and shared decision making, the hallmarks of collaboration, are part of PR, the participants in a PR project are also recruited and consented into the research study as any other research subject would be. So they are research subjects, which excludes them from being collaborators in some definitions, yet there are usually strong elements of collaboration within PR studies: can someone be a research subject and collaborator at the same time?

To answer this, we look at an example of a PR project and the role of the participants. Involving young people as co-researchers in a photography project is a PR study that recruited 102 children aged 13–17 years.22 Children were not involved in designing the study, setting methods or analysing results, although they did collect the data by taking photographs and participated in workshops and discussion groups to share their opinions. Although an excellent example of PR with children and engaging children in research, we would not consider this collaboration, particularly in view of the following: as the study progressed, four of the study participants aged 15–17 years expressed an interest in taking a more active role and were trained to be able to lead discussion groups themselves and partnered the researchers in data analysis. These activities are now an excellent example of collaboration with children (and young people); however, these four children held a different status to the other 98 children in the research study, received additional training and support and the study's ethical approvals had to be amended to encompass their change in status from participant to collaborator. Thus, being a participant in a PR project is not the same as being in collaboration with the researchers, although we acknowledge that the remaining 98 children in the study had greater opportunity to direct and influence the research than research subjects in a non-PR study would normally have.

Thus, the lines among involvement (encompassing collaboration), participation and PR are not clear. While the examples given here do indicate that collaboration with children to set research agendas, design studies and research tools, collect and analyse data is possible, we must consider whether collaboration with children is always desirable and/or advisable.

Why collaborate with children?

PPI in health research is reported to result in more accessible services, improved research questions that are more relevant to patients’ needs and research designs that are more acceptable to patients and carers.23 The UN Convention on the Rights of the Child2 specified children's right to be involved in making decisions about their lives, which paved the way for children's involvement in all walks of life including research to be embedded in national policy and law. Similarly, research guidelines such as the Medical Research Council guidance for designing and evaluating complex interventions24 advocate and expect the use of staged approaches involving the end-users in the design process, that is, the involvement of children in designing interventions for children's health. Therefore, researchers can find themselves required to collaborate with children.

There are many reported benefits to collaborating with children in research, mostly from social science literature, including: identifying different perspectives on research topics and methods; improving the suitability of research tools for use with other children; improving the quality and depth of interview data by enabling other children to be more relaxed and open; improving the dissemination and uptake of research by enabling target children to identify with a child of similar age and characteristics; enhancing adults’ perceptions of children's knowledge and value in research; increasing children's self-confidence and self-esteem; teaching children valuable research and problem solving skills; heightening children's awareness of ethical conduct; and facilitating more effective communication between children and adults.17 ,25–28 However, finding evidence to support these potential benefits proved problematic with little data specific to health. A 2006 evaluation of the impact of PPI on health services29 did not reference children's services nor did a 2009 overview of PPI evidence, policy and activity.23 A 2004 report ‘Patient and Public Involvement in Health: The Evidence for Policy Implementation30 looked at 12 examples of PPI, two of which engaged children, and concluded that PPI with children had resulted in ‘greater confidence, reduction in anxiety, greater understanding of personal needs, improved trust, better relationships with professionals and positive health effects’. This is encouraging although as the report references PPI as a whole, these findings may not be specific to collaboration. Turtle et al12 in reporting a health research study on children also reported that their data collection tools were improved as a result of collaboration with children and that the following benefits for the children were reported by the children themselves: learning new skills; learning not to be shy; and feeling that they had been listened to and feeling that they had been involved in something important.

Due to the lack of data in health research, we have drawn from a report of service evaluation work which provides some valuable data as to the potential benefits of collaboration with children. This 2002 survey of UK NHS Trusts identified 27 examples of children's involvement in service development (16 consultative and 11 collaborative).31 The trusts reported the following benefits:

  • Children's views were different from adults

  • The children provided information that was useful to the Trusts

  • Involvement increased children's self-confidence

  • Involvement increased compliance and uptake of services.

As the details of the work conducted by each trust have not been published, we cannot assess the quality of the collaboration, the methods used to collaborate with children or the robustness of the reported benefits. Neither can we entirely separate which benefits may relate to consultation activities and which to collaboration activities. What is clear is that the 27 Trusts25 also identified a number of problems related to working with children, specifically:

  • Encouraging children to get involved was challenging

  • Encouraging adults to take children's views seriously was problematic

  • Trusts were concerned about raising unrealistic expectations in the children

  • Trying to please everyone/ensure that everyone's views are heard was challenging

  • The time required for consultation with children was considerable.

These problems are reflected in the literature. Cooke and Kothari32 suggested that the ‘fanfare’ associated with PPI can be misleading either due to inadequate organisational ability to affect change or by overenthusiastic selling. A Health Technology Assessment report noted that organisational boundaries were a key factor in restricting PPI in prioritising research funding.33 Equally important as ensuring organisation readiness is ensuring that adults are ready and willing to collaborate with children. As noted above, adults may be resistant to listening to or working with children. Some suggest that adults’ reluctance to ask children their opinions is based on fear of what the answers will be and thus fear of being obliged to allow children to take control.3 ,34 ,35

One can argue that it would be inherently unethical to conduct any kind of collaboration with children whereby unrealistic or unachievable expectations are raised, or to do so knowing that the child's opinions are likely to be dismissed. Collaboration as a ‘tick box’ exercise is therefore unethical and may damage children's self-confidence, particularly if they leave a research project feeling that their opinions and input were pointless. In addition, negative experiences of collaboration in one project may result in a general lack of trust in research, impacting on future research participation and future collaboration. These risks are particularly problematic if the collaboration is in relation to sensitive topics where children might already feel undervalued and ignored, such as issues around abuse, fostering, self-harm or terminating treatment regimes.

There is also a question of whether collaboration, with the partnership and shared decision making that it involves, is ever a reasonable expectation for children. There is a view that children should be protected from the adult world and not expected to take on adult roles in research in order to guard against exploitation and harm.34 However, Kitzinger36 noted that the desire to protect children can at times deny children access to knowledge and power and thereby increase their vulnerability to exploitation. Some hold the opinion that parents and carers ‘know best’ such that the child's voice is unnecessary34 ,35 ,37 or that inherent power imbalance between adults and children makes genuine and equal partnership impossible. However, there is an increasingly popular view that children have knowledge that is separate from their parent's/carer's knowledge, that this knowledge is worthy of consideration, and that a child can function as a social actor independent of his or her parents (a social actor is an individual or organisation with the capacity to think about the world around them and about the choices available to them, and by doing so influences that world and those choices).17 ,38 To answer these questions, we borrow an example from outside the field of health research. Ridge39 conducted the Listening to Children Study, a PR study with children aged 10–17 years and their families. By engaging directly with children as well as parents, this study found that children struggled to protect their parents from the effects of childhood poverty as much as parents worked hard to protect their children from the effects of poverty in childhood, yet the parents were mostly unaware of this. While this demonstrates the valuable and unknown information that children can posses, it also demonstrates how easily children can slip into adult roles. It is important to enable children to express their views and take an active role in research, but equally important to guard against requiring them (deliberately or unintentionally) to take adult roles beyond their level of maturity.

Financial cost is another important consideration of collaboration. INVOLVE estimates that PPI activities cost £1 billion per year in the UK40and the Health Technology Assessment reported costs for PPI of £30 000 per annum.33 For researchers and research funders, collaborating with children will require additional time commitments by trained personnel, additional training for the child-collaborators and provision of child-friendly resources and locations to allow the children's ongoing collaboration. There may also be financial and lifestyle cost to the children or their families in terms of time and costs of travel to and from meetings. We have been unable to identify any data reporting costs specific to children or any cost–benefit analysis of collaborating with children in health research.

Ethical review procedures may be able to mitigate some of these risks by ensuring that expectations are reasonable, information is clear and appropriate and methods are suitable. However, as mentioned above, in the UK PPI activities are not subject to the same level of ethical scrutiny as research activities. This reduced scrutiny extends to the information provided to encourage collaboration, the methods of approaching children to invite their collaboration and the methods used to enable collaboration. Add to this the differing opinions of what constitutes collaboration and there is a risk of unregulated and unethical practice occurring.

Discussion

Collaboration with children, as part of the wider concept of involvement of children with health research, has been swiftly adopted as a fundamental ‘right’, become embedded in national policies and laws and is rapidly becoming a requirement in grant funding. Yet most of this appears to be based on evidence for the benefits of PPI as a whole, rather than collaboration specifically, on adult data, or the assumption that collaboration must be beneficial rather than clear evidence that it is.23 There are some potential benefits of collaborating with children in health research, both in terms of improving the relevance of the research that could be conducted and personal, social and academic benefits for the children, yet the evidence base for these benefits is poor. Where evidence exists, it is challenging to separate work with children from that with young people, yet the two groups are not interchangeable. Equally there are potential risks, including raising unrealistic expectations, placing unreasonable burdens on children and the risk of unreported and unethical activities taking place under the guise of PPI.41 Cost effectiveness and cost benefit analyses have not been conducted in relation to children's research.

Some researchers argue that all research with or on children should be part of a spectrum of research that moves between research on children, through research with children to research conducted by children, with each strategy carrying its own risks and benefits.26 There are some positive advantages to this strategy: it is important that the rise of collaboration with children does not diminish or replace the basic concept of good quality research on children. Removing strict boundaries between collaboration with research and participation in research may increase funding options and could bring all research with children under one set of ethical review procedures. However, there are also potentially negative implications of uniting all activities under one umbrella: this could change the nature of the relationship between researcher and child, putting children back into the ‘participant’ role and potentially minimising the shared decision making and partnership elements that are central to collaboration.

For research studies where collaboration is deemed appropriate, the ‘pockets of participation’ approach described by Franks4 may be the best option (participation here is used to mean collaboration). Franks4 reports on two projects where children collaborated with some elements of project design but not all aspects, with pockets of shared decision making but with control largely resting with the researchers. This pragmatic approach incorporates flexibility and may help promote ethical practice by only working with children when there is a genuine contribution to be made.

Although how to achieve collaboration with children is not within the scope of this article, there are a number of excellent books, toolkits and guidelines that contain advice and recommendations for working with children, covering ethical considerations, conducting research on children, enabling children's participation and involvement and facilitating research led by children, some of which are referenced here.27 ,42–47

Recommendations

The lack of evidence relating to children's collaboration with research and, more broadly, children's involvement with research needs to be urgently addressed. To achieve this, more collaboration with children needs to take place, but this must be done with caution, including considerations of how to ensure children's collaboration is given due weight while avoiding unrealistic expectations, and a clear statement of what the collaboration was intended to achieve and clear outcome measures to assess this. This may be aided by the use of one of the many existing models of participation and involvement to define and delineate children's roles in research and the expected benefits.18 ,48–50 At present, the different models use different terminology to refer to different activities, but if one of these models was adopted as a standard that all involved could adhere to, children's roles and expected benefits in research could be clearly understood and accurately assessed by researchers, Ethics Committees, children and their parents.

The lack of evidence also relates partially to the lack of a standardised definition for collaboration which hampers any attempt to collate and analyse data.23 Thus, the terminology of collaboration needs clarification and standardisation on an international level so that data from across the globe and across research disciplines can be shared. This includes the distinctions between collaborating with children, children's participation in research and working with children in a PR study.

The introduction of standardised methods for measuring and reporting the impact of collaboration would also help establish an evidence base.23 Publishing collaboration work can be problematic as methods sections for articles in peer-reviewed journals tend to focus on recruitment, sampling and data collection rather than preapplication/preresearch collaborations or the activities of steering panels and advisory groups, resulting in collaborative aspects being left unpublished. For example, the Participating in care: children and the NHS study, one of 12 projects funded by the Health in Partnership research programme,30 invited children who had initially been study participants to sit on the study steering panel. While the data collected from the children were reported, the research team did not publish any data on the role the children subsequently played on the advisory panel, the techniques or resources used to enable the children to join the steering committee nor the benefits or problems identified. Researchers should be encouraged to publish examples of successful and unsuccessful collaborations with children to build up a database of methods and share of good practice and an assessment of the added value (either to the project or to the children) of collaboration. Some research funders request that researchers specify how they involve users in a study and therefore may be able to monitor the outcomes of user involvement and this could provide a valuable source of data.23 The 2011 GRIPP checklist51 is intended to strengthen the quality of PPI reporting in research, just as CONSORT52 and PRISMA53 have strengthened and standardised reporting of Randomised Controlled Trials and Systematic Reviews. GRIPP will provide journals and authors with a standardised method for reporting PPI activities within health research and should be widely adopted.

Conclusions

The aim of collaborating with children is not to prioritise children's perspectives to the exclusion of parents or other adults, but to encourage dialogue and the sharing of information and, in doing so, increase the likelihood of finding workable solutions to real health problems. More collaboration with, methods for balancing adult and child opinions, with all the differentials in power that exist particularly in relation to parent and child and doctor and patient. Additionally, reporting of collaborations with children must improve, necessitating agreement between research fields about standard definitions of terms such as collaboration, involvement and participation and the standardisation of outcome measures. Routes of detailed reporting and publishing of collaboration also need to be established. Without these changes, successful and unsuccessful methodologies cannot be assessed, the risks and benefits of collaboration cannot be determined, nor can any assessment of cost–benefit be made, an absolute necessity in this time of fiscal austerity. Finally, we suggest that all researchers wishing to collaborate with children consider carefully what they hope to achieve, both for the research and for the children, and whether collaboration is the most appropriate way to achieve their goals, so that the rise of collaboration with children does not diminish the value of good quality research on children. When collaboration is deemed to be suitable, middle grounds such as the pockets of participation approach or PR may be viable approaches.

Acknowledgments

The authors wish to acknowledge the members of the MIA Research Team and Mrs Stephanie Langan.

References

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Footnotes

  • Competing interests None.

  • Provenance and peer review Commissioned; externally peer reviewed.

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