Identifying support issues of parents of children with leukemia

One of the important factors in helping both children with acute lymphoblastic leukemia (ALL) and their family members during the difficult treatment period is the support they receive. However, there is a scarcity of research that examines the adaptation to such an experience from the family's perspective. This discussion presents the findings from recent research on accessing support from the perspective of parents with a child undergoing treatment for ALL.

A longitudinal, qualitative study informed by a phenomenological methodology. The results are taken from parent interviews undertaken during the time period from the end of induction-remission to the end of the 5-week period (time period T1), collected over the first year of operation of the study.

The need for support was reported as intense, and offers of support tend to lessen over time. Among the sources of support noted were partners, family, friends, employers, hospital staff, and other parents in the same situation. However, community resources appeared to be lacking, underused, or both.

Suggestions for support include the provision of practical assistance through appropriately trained volunteers, the involvement of a liaison person to mentor families through the initial stages of treatment, development of parent support groups, and the opportunity for families to meet children who are successfully off treatment. Such support strategies involve sensitivity to particularly vulnerable families who have limited support available and respect for the variation in individual styles of accessing support.