Being there: parenting the child with acute lymphoblastic leukaemia

To gain insight into the lived experience of parenting a child with leukaemia during treatment.

Diagnosis of leukaemia in children leads to an existential shock for parents and a reversal of normal family life. Today, in the Netherlands, after diagnosis, children stay at home most of the time. Therefore, their parents face considerable responsibilities for administering home-based treatment and for the support of their child during illness and treatment.

A grounded theory study was undertaken at a Dutch University Hospital and involved one-time individual in-depth interviews with 12 mothers and 11 fathers (n = 23) of 12 children.

'Being there', was identified as the core concept. It means: 'I'll be there for you; I will never let you down'. 'Being there' is described as a parental response to the perceived vulnerability of the child and the parental need to give meaning to parenthood. It serves two purposes: protection and preservation. Protection means guarding the child against the negative aspects of illness and treatment. Preservation refers to the way parents influence the child's perception of his/her life, thus contributing to his/her coping and willingness to undergo treatment, to maximise the chances for survival. Six aspects were identified: a trusting relationship, presence, emotional support, advocacy, routines and rituals and effacing oneself.

The concept provides a theoretical frame for parenting the child with cancer. It clarifies the actions and reactions of parents and increases insight into the underlying force that enables parents to provide continuing care despite their personal burden.

The concept offers an essential insight into parenting the child with acute lymphoblastic leukaemia and has relevance for nursing practice and education. Understanding of the concept would improve the ability to understand, communicate and work pro-actively in partnership with parents.