An Exploration of the Data Collection Methods Utilised with Children, Teenagers and Young People (CTYPs)

Background: The impact of cancer upon children, teenagers and young people can be profound. Research has been undertaken to explore the impacts upon children, teenagers and young people with cancer, but little is known about how researchers can ‘best’ engage with this group to explore their experiences. This review paper provides an overview of the utility of data collection methods employed when undertaking research with children, teenagers and young people. A systematic review of relevant databases was undertaken utilising the search terms ‘young people’, ‘young adult’, ‘adolescent’ and ‘data collection methods’. The full-text of the papers that were deemed eligible from the title and abstract were accessed and following discussion within the research team, thirty papers were included. Findings: Due to the heterogeneity in terms of the scope of the papers identified the following data collections methods were included in the results section. Three of the papers identified provided an overview of data collection methods utilised with this population and the remaining twenty seven papers covered the following data collection methods: Digital technologies; art based research; comparing the use of ‘paper and pencil’ research with web-based technologies, the use of games; the use of a specific communication tool; questionnaires and interviews; focus groups and telephone interviews/questionnaires. The strengths and limitations of the range of data collection methods included are discussed drawing upon such issues as of the appropriateness of particular methods for particular age groups, or the most appropriate method to employ when exploring a particularly sensitive topic area. Conclusions: There are a number of data collection methods utilised to undertaken research with children, teenagers and young adults. This review provides a summary of the current available evidence and an overview of the strengths and limitations of data collection methods employed.

Undertaking Sensitive Interviews: a Researcher’s Experience of Interviewing Bereaved Parents and Family GPs

The presentation describes the researcher’s experience of undertaking sensitive interviews. Background The interviews form part of a current study that is examining bereaved parents’ experience of caring for their child at home as well as the experience of their GP. This study builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived as the gatekeeper for care within the community. Presentation aim To describe the process of both the preparation for, and undertaking of, sensitive interviews. Study methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM). QM will be used to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40-60 GPs will be involved in the QM. Findings The preparation for these interviews will be discussed and compared to the supportive bereavement visits undertaken within the researcher’s role as a paediatric Macmillan nurse. The experience of undertaking the interviews will be exemplified with findings from the initial and the current, study. Papers’ contribution The researcher’s experience of preparing for and undertaking sensitive interviews may prove beneficial to other researchers.

Undertaking Sensitive Interviews: Reflections on Interviewing Bereaved Parents

Paediatric palliative care is a rare experience for many GPs. Although they recognise that they have a role to play, and can be is value in providing palliative care, their ability to fulfil this role can be hindered by a lack of role clarity. A qualitative study set in the West Midlands, examined the role of the GP in children's oncology palliative care from the perspective of the GP who had cared for the child receiving palliative scare for cancer at home and the bereaved parent. One-to-one semi-sturcured interviews were undertaken with 18 GPs an 11 bereaved parent following the death. A ground theory data analysis was undertaken: identifying generated themes through chronological comparative data analysis. Reflecting on my experiences working with bereaved families both as a paediatric Macmillan nurse and a researcher, the challenges of undertaking sensitive research, in relation to the vulnerability of the particular group and the nature of questions being asked will be explored.