‘Building a new normality’: mothers’ experiences of caring for a child with acute lymphoblastic leukaemia
- 2 June 2006
- journal article
- research article
- Published by Wiley in Child: Care, Health and Development
- Vol. 33 (2), 155-160
- https://doi.org/10.1111/j.1365-2214.2006.00638.x
Abstract
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. 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 (3-4 months post diagnosis, 15 and 27 months) using a semi-structured format with open-ended questions. A qualitative methodology was employed to analyse interview data using Thematic analysis. 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. 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.Keywords
This publication has 11 references indexed in Scilit:
- Benefit of dexamethasone compared with prednisolone for childhood acute lymphoblastic leukaemia: results of the UK Medical Research Council ALL97 randomized trialBritish Journal of Haematology, 2005
- Quality of life in children newly diagnosed with cancer and their mothersHealth and Quality of Life Outcomes, 2005
- HRQOL implications of treatment with dexamethasone for children with acute lymphoblastic leukemia (ALL)Pediatric Blood & Cancer, 2005
- AS NORMAL A LIFE AS POSSIBLE: MOTHERS AND THEIR DAUGHTERS WITH CONGENITAL HEART DISEASEHealth Care for Women International, 2002
- Findings on the impact of treatment for childhood acute lymphoblastic leukaemia on family relationshipsChild & Family Social Work, 2001
- Needs and responses of parents following the diagnosis of childhood cancerChild: Care, Health and Development, 1996
- Needs and responses of parents following the diagnosis of childhood cancerChild: Care, Health and Development, 1996
- Managing Life with a Chronic Condition: The Story of NormalizationQualitative Health Research, 1993
- Behavioral effects of corticosteroids in children with acute lymphoblastic leukemiaMedical and Pediatric Oncology, 1992
- Successful 'normalizing' tactics of parents of chronically-ill childrenJournal of Advanced Nursing, 1980