'Building a new normality': Mothers' experiences of caring for a child with acute lymphoblastic leukaemia

E. A. Earle, S. A. Clarke, C. Eiser, L. Sheppard

Research output: Contribution to journalArticle

37 Citations (Scopus)

Abstract

Background: Treatment of childhood cancer occurs over a 2- to 3-year period, with initial intense phases of chemotherapy followed by less severe treatment periods. From first diagnosis, families are encouraged by healthcare professionals (following government guidelines) to try to maintain a normal life. The aim of this paper is to contribute to our understanding of how 'normal' family life is compromised from the perspective of the families themselves during this period of extreme stress and concern for the health and well-being of their child. Methods: This study was longitudinal and involved a cross section of 32 mothers of children recently diagnosed with acute lymphoblastic leukaemia (ALL) currently participating in the Medical Research Council ALL-97 randomized control trial. Mothers were interviewed at three time points (3-4months post diagnosis, 15 and 27months) using a semi-structured format with open-ended questions. A qualitative methodology was employed to analyse interview data using Thematic analysis. Results: Mothers reported understanding the importance of achieving normal life, but described how this was difficult to realize. At first interview, mothers were optimistic that they could achieve the 'normal life' as advised by healthcare workers. At 12 and 24 months, although all mothers reported that life was not back to normal, there were differences in how they perceived this lack of normality. Whereas some families experienced frustration and disappointment, others had adjusted and managed to accept the new order. Conclusions: Families felt encouraged on diagnosis to be told that despite the severity of the disease and treatment regime, a normal life was possible and should be pursued. Our findings indicate that over time, more concrete information is needed to guide parents through the treatment process in order to help them achieve this.

Original languageEnglish
Pages (from-to)155-160
Number of pages6
JournalChild: Care, Health and Development
Volume33
Issue number2
DOIs
Publication statusPublished - 1 Mar 2007
Externally publishedYes

Keywords

  • Acute lymphoblastic leukaemia
  • Family functioning
  • Normal life
  • Quality of life

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Psychology(all)
  • Developmental and Educational Psychology

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