In their own words: advice from parents of children with cancer

Author:

Davies Jenny1ORCID,O’Connor Moira12ORCID,Halkett Georgia K B3ORCID,Kelada Lauren45ORCID,Gottardo Nicholas G67ORCID

Affiliation:

1. Faculty of Health Sciences, School of Population Health, Curtin University , Perth, WA, Australi a

2. School of Population Health, Curtin Health Innovation Research Institute (CHIRI)/Enable Institute Curtin University , Perth, WA, Australia

3. Curtin School of Nursing/Curtin Health Innovation Research Institute (CHIRI), Curtin University , Perth, WA, Australia

4. School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney , Sydney, NSW, Australia

5. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital , Randwick, NSW, Australia

6. University of Western Australia Brain Tumour Research Program, Telethon Kids Cancer Centre, Telethon Kids Institute, , Perth, Western Australia, Australia

7. Perth Children’s Hospital Department of Paediatric and Adolescent Oncology/Haematology, , Perth, Western Australia, Australia

Abstract

Abstract Background Approximately 770 children are diagnosed with cancer in Australia every year. Research has explored their experiences and developed recommendations for improving support provided to families. These have included the provision of psychology services, improved communication between healthcare professionals and parents, and increased information for families. Methodology In our hermeneutic phenomenological study, 44 participants (21 fathers and 23 mothers), with ages ranging from 28 to 51 years (M = 37 years, SD = 5.6 years) were interviewed. Interviews ranged from 45 to 150 min (M = 65 min, SD = 18 min) duration. Findings Thematic analysis of the data generated seven themes. Take it second by second; Find some normality; Take care of yourself; You need to talk to someone; Just take all the help; Speaking up for your child; and Take care of the siblings. Conclusion The results of our study provide firsthand advice from parents. The overwhelming theme that emerged is that while many parents revealed that they had not asked for or received support, in hindsight they unanimously reflected that they wished they had sought out services. The strength of this study is that parents are more likely to accept the advice of other parents with a shared lived experience. The results of our study can be used to develop resources that could be provided to parents. These resources would emphasize that the recommendations come from parents who have traveled the same path and have learnt from hindsight and experience.

Funder

Cancer Council of WA Research Fellowship

Perth Children’s Hospital Foundation Stan Perron Chair of Pediatric Hematology and Oncology

Stan Perron Charitable Foundation

Publisher

Oxford University Press (OUP)

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