Researchers are responsible for using techniques that allow children to contribute their perspectives in a way that is most suited to their strengths and preferences. The draw and write technique is a method that needs to be used carefully and sensitively if children are to become active participants in revealing their world as they see it. In this article, we explore the issues for the child and researcher of using the draw and write technique as a participatory research methodology. Reflections on the technique are drawn from our experience of using it with children aged 6 to 12 years. This was part of a larger study undertaken to enable children aged 4 to 18 years with a diagnosis of cancer to give their views about hospital care. The participating children's verbal and artistic contributions illustrate how children are able to convey their opinions when there is an enabling climate created.
This paper reports on a participatory research project exploring children’s experiences and views of cancer care services. It focusses on findings from interviews conducted with 10 children aged four and five years old. Play and puppets were used to help children express their views. The themes elicited reveal important aspects of hospital care for young children, such as having ‘lots of toys’ available and that ‘mummy and daddy are near’. The use of play and puppets as a data‐collection method is discussed, along with the implications of findings for the care and support of young children who have cancer.
This article aims to share critical debate around undertaking interviews with children in the home setting and draws on the authors' extensive research fieldwork. The paper focuses on three key processes: planning entry to the child's home, conducting the interviews and exiting the field. In planning entry, we include children's engagement and issues of researcher gender.In conducting the interviews, we consider issues such as the balance of power, the importance of building a rapport, the voluntary nature of consent and the need for a flexible interview structure. Finally, we address exiting from the child's home with sensitivity at the end of the interview and/or research study. Whilst undertaking research in the child's home provides a more known and familiar territory for the child, it does mean that the researcher faces a number of challenges, that require solutions while they are a guest in a child's home.
Background
Children aged 4–10 years with cancer rely on their parents for information. Inadequate and incomplete information about diagnosis and treatment increases children's worries and fears and compromises their abilities to participate more fully in their care and decision-making in later life.
Aims
(1) To investigate the roles that parents and health professionals play in providing children (aged 4–10 years) with information about acute lymphoblastic leukaemia (ALL). (2) To develop and feasibility test an intervention to support parents in sharing information about ALL with their children.
Methods
The two-phase study conducted interviews, online forums, and focus groups with 28 parents and 26 professionals over 12 months at one principal treatment centre in London. Grounded theory was used to code data, create concepts and theory. Guided by the MRC Framework for developing and evaluating complex interventions,1 an information-sharing package was developed and feasibility tested.
Analysis
Data analysis revealed that professionals in specialist areas shared medical information with families primarily at diagnosis, with little formal follow-up. No systematic communication ‘protocol’ existed to review basic concepts of leukaemia throughout treatment; informal assumptions were made between health professionals about how to build on families’ knowledge. Parents had no support in translating information to their child, but saw it as their role.
Intervention
A multi-disciplinary analysis team created HELP (Harmonising Education on Leukaemia for Parents), an internet-based and leaflet information package to follow the treatment phases of the MRC UKALL2010 protocol and consolidate information about medical and non-medical issues (eg, procedures, return to school), encourage family discussion, and suggest key questions for families to ask professionals. HELP aims to increase parents' self-efficacy of sharing information with their child, and in the long-term, to prepare children to become active participants in healthcare and decision-making.
Conclusion
Parents expressed the need for more support in providing information to their children. Formal evaluation of the effectiveness of HELP in affecting parents' and children's knowledge, parents' self-efficacy and anxiety, children's behaviour and coping is required. Evaluation would add to the literature on communication interventions in children's cancer care, which lack an exploration of parents' significant communication and information-sharing roles.
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