Beginning treatment for pediatric acute myeloid leukemia: the family connection.

There is a loud silence on psycho-oncology research in relation to pediatric Acute Myeloid Leukemia (AML). This article is part of a series that begins to address the psycho-social hiatus. The present article documents the less obvious, often hidden, aspect of beginning treatment for pediatric AML--the "behind the scenes" experience of the home and family connection. The findings are from the first stage of a five year longitudinal study that examines through qualitative research the experience of childhood leukemia from the perspective of the child, siblings and parents. Open-ended interviews, audio-recorded and transcribed verbatim, were thematically analyzed with the assistance of the Non-numerical Unstructured Data by processes of Indexing Searching and Theory-building (NUD*IST) computer program. The findings emphasize the disruption to normalcy in relation to home life, school, and work, which is exacerbated for families who relocate for specialist treatment. The findings emphasise the need for support for families coping with childhood AML.

Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience.

Despite the plethora of clinical literature on the medical treatment for paediatric acute myeloid leukaemia (AML), there is a dearth of psycho-social literature on how families cope with either the disease or its treatments. The present article seeks to make a contribution by placing psychosocial aspects of childhood AML on the agenda. The findings are from a 5-year longitudinal, qualitative study on the psychosocial aspects of paediatric leukaemia. Qualitative data is gathered from open-ended interviews at three points in time on the experience of illness. The holistic findings from T1 present the impact of diagnosis and early treatment for childhood AML from the perspective of mothers, father, sibling and child patients. The study is also following up families with related disorders, thus it is possible to assess difference to other haematological groups. The findings indicate that the families bring scant prior understanding of the illness, and experience the diagnosis with fear and seriousness as a confrontation with death. At the point of entering treatment they are in a profound sense of shock and grief, which is exacerbated by a distressing, all pervading, sense of uncertainty. Families can be overwhelmed by the exhaustion of attending to the escalating practical demands of the situation combined with fatigue, worry and poor nutrition. All families find dealing with the invasive procedures and aggressive drug protocols emotionally challenging. However, in spite of the difficulties, parents have a strong desire to be with their child and find any separation painful. Families come to view the ward as a comfort zone where they have the support of the health and allied health team and the camaraderie of others experiencing a similar situation. However, even this support has to be qualified by the need for personal space, the difficulty of handling complex emotions, and the fear of being overwhelmed by difficulties other families face. The insights argue strongly for sensitive support for all individuals coping with childhood AML.