To Örebro University

Background: Previously, researchers have pointed out the importance of giving voice to children’s experiences of health care, as well to follow these experiences over time.

Objective: To describe experiences of fear in 5-9 year-old children, related to having Acute Lymphoblastic Leukemia (ALL).

Method: 3 girls and 10 boys participated in one to three interviews during their treatment period. The interviews were performed approximately two months after diagnosis, after one year and at the end of treatment (after 2.5 years). The data comprised 35 interviews in total, with an average length of 35 minutes. To capture the longitudinal perspective, a qualitative matrix methodology was adopted. First, individual matrices for each child was developed, where all narratives about their fears during the entire treatment period were inserted. Next, a cross-case matrix was developed, where all text from all the individual case-matrices were compiled for each time point. The general idea of the matrices was to visualize data, thus enabling the researchers to easier identify common patterns, between cases and over time. In this step, common fears experienced by the children were identified, and finally, summary cross-case matrices were created. These were used to summarize how many children who had experienced various fears at the three time points, during treatment.

Results: Fear of needles was the most commonly reported fear. This fear was most prominent and most often reported at the start of treatment. For >50% of the children this fear remained at the end of treatment. Fear related to the physical changes caused by the ALL or treatment, on the other hand increased during the treatment period.

Conclusion: The qualitative matrix based methodology was found to be useful when analyzing qualitative longitudinal interview-data from children with ALL. The analysis was quite manifest, which suited the data derived from young children.