Area: Health Care Research

Research Involving Children

Overview: This article focuses on children as research participants, capable of effectively articulating their perceptions. However, the challenges in interviewing children and finding new ways and means of communicating, collecting and interpreting research data are discussed

Although children are major users of health services they are not often consulted as health care consumers[i] and have been traditionally represented by the social and health sciences as passive in the sickness process[ii]. Their views are often obtained by proxy, via adult accounts such as those of teachers and parents[iii]. One researcher describes children as 'the silent consumers of health care'[iv].

There are two competing perspectives held by researchers who are studying children as being either 'competent interpreters of their world' or 'unable to describe and understand their life experiences due to developmental immaturity (both cognitive and linguistic) and to a lack of socialisation experiences'[v]. Prominent social scientists focussing on children and childhood have clearly steered from the traditional developmental perspective[vi] [vii]:

"Children have belonged to psychology, which a century ago, developed out of biological enquiry. It established itself as an experimental, testing, fact –finding discipline, focusing on the mental life of people and especially on the mental development of children. The mental and the social were split apart, with the mental now recast as the cognitive, and deemed the central focus of study, and the social relegated to the status of descriptive backcloth." [viii]

The approach that rests on developmental stages has been criticised by early years' professionals: a traditional behaviourist ideology can over-simplify the learning process and it fails to provide an acceptable explanation for human creativity and original thought[ix]. Other prominent researchers in the field of health care psychology accept that children develop in line with the timing of their individual experiences[x] and may react to the same experience differently[xi].

Contemporary social science views children as active in the construction and determination of their own social lives, the lives of those around them and the societies in which they live[xii] . Until the early nineties there was scant literature on representing children as active users of health services. In more recent years, however, the contribution of children as consumers of health care has been taken seriously and been encouraged[xiii]. Strategies for listening to children and involving them in decision-making have developed, particularly in the field of children's nursing. Individual case studies have been used in teaching health professionals how to communicate with ill children and their families [xiv]. Other learning tools include a video on hospitalisation as experienced by the ill child, hence given the name 'the child's eye'[xv]. More recently, research has focused on the traditionally 'hard to reach' groups such as children with educational difficulties[xvi], and teenagers[xvii].

Involving children in research and communicating their perspectives, however, still remains an important and underdeveloped area. For example, Hayes (1997) in providing a synthesis of literature in the area of childhood chronic illness found that research about children frequently depends on parents as informants[xviii]. The result of this is an undeveloped understanding of children's perspectives and responses in chronic illness.

Although research aiming to explore children's opinions and experiences is essential, it is not always welcomed by the health profession, for the following reasons:

· Fears of upsetting children

· Possibility of disrupting their care

· Children may say something which reflected badly on the care they received [xix]

Such views endorse a perception that society is promoting 'learned helplessness' in children, through an explicit wish to protect their welfare. We need to further our knowledge about how children can participate in their own health care and our research methods in synthesising the perspectives of children, their parents and professionals.

Children can be their own historians and storytellers. There are some practical and ethical issues in doing research with children, particularly around their vulnerability as informants. The research method of interviewing and questioning children falls within the category of 'minimal harm' within medical guidelines. The risk involved is minimal, although not negligible, if interviews are carried out in a sensitive way and the child's agreement is obtained[xx]. Allmark (2002) provides a reasonable overview of the ethics of doing research with and about children[xxi].

Data collection methods that seek to give children a voice need to have three prime characteristics:

1. Allow the individual scope to be descriptive about their experiences

2. Match the communicative abilities of the individual

3. Provide a mechanism that allows the individual to express things that they are afraid or unable to articulate[xxii].

Researchers need to be flexible in their research with children and be mindful of the strategies that can be used to enhance the quality of responses from children[xxiii]. Thus the credibility of data collection from children can be strengthened by a number of strategies:

The use of neutral territory for data collection: Interviews are best conducted in an environment that is familiar and comfortable for children e.g. home, but neutral to the researcher.

Avoiding tiredness or anxiety: This refers in particular to children with health care problems, who may find an interview tiring if it goes beyond twenty minutes. Care should be taken to ensure that children are well enough to participate in an interview and a time limit should then be set by the researcher.

Responding appropriately to emotional reactions during the interview: Sensitivity is needed by the researcher to enable them to tailor the depth of questioning to individual situations, thus allowing children to withhold information despite having given consent to participating in the interview.

Data recording reliability: As a further method of participation, children should be encouraged to test recording equipment before the interview.

Projection methods: A drawing interview is a useful projection method in conducting research with children. Drawing techniques are more commonly used in psychology as a method of augmentation with children to help them to communicate and recall stressful events associated with abuse or trauma[xxiv].

Children's drawings have been studied in order to further understandings of the different stages of child development[xxv]. More recently drawings have been used as a psychometric measure, for example, to measure the emotional status of hospitalised children[xxvi]. Within the social sciences a drawing interview has been used to investigate children's perceptions of their experiences of illness. For example, researchers have used the drawing technique to explore the perception of pain in children with sickle cell disease, as well as childhood and medicine use[xxvii] [xxviii]. Drawing is a practical way of bringing children into an interview situation and getting them to talk about themselves and their experiences. The drawing itself often generate additional questions to further inform the research.

To conclude, children have great potential as research participants, and are capable of effectively articulating their perceptions. They challenge researchers to find new ways and means of communicating, collecting and interpreting research data. Are you up to the challenge?

References

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[xix] Carter B. Children – silent consumers of health care. Journal of Child Health Care 2(2): 57, 1998.

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[xxiv]Davie R., Varma V. & Upton G., eds. The Voice of the Child: A Handbook for Professionals. Falmer, London , 1996.

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[xxvi] Clatworthy S., Simon k. & Tiedman M. E. Child Drawing: Hospital Manual. Journal of Pediatric Nursing 14(1): 10-18, 1999.

[xxvii] Stefanatou A. & Bowler D. Depiction of pain in the self-drawings of children with sickle cell disease. Child: Care Health and development 23(2): 135-155, 1997.

[xxviii] Trakas D. & Sanches E. (eds). Childhood and Medicine Use: Zhata, Athens , 1992.