Select Publications
Journal articles
2024, 'The feasibility and acceptability of collecting psychosocial outcome measures embedded within a precision medicine trial for childhood cancer', Cancer Medicine, 13, http://dx.doi.org/10.1002/cam4.7339
,2024, 'Captains on call: A qualitative investigation of an intervention to support children with retinoblastoma undergoing regular eye examinations', Psycho-Oncology, 33, http://dx.doi.org/10.1002/pon.6315
,2024, 'Quality of life in caregivers of a child with a developmental and epileptic encephalopathy', Developmental Medicine and Child Neurology, 66, pp. 206 - 215, http://dx.doi.org/10.1111/dmcn.15695
,2024, 'A Pilot Evaluation of an Educational Video to Support Consent to a Pediatric Malignancy Biobank', Biopreservation and Biobanking, http://dx.doi.org/10.1089/bio.2024.0011
,2024, 'Communicating with families of young people with hard-to-treat cancers: Healthcare professionals’ perspectives on challenges, skills, and training', Palliative and Supportive Care, http://dx.doi.org/10.1017/S1478951523001992
,2024, 'Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study', Journal of Child Health Care, http://dx.doi.org/10.1177/13674935241238485
,2023, 'Parents’ and adolescents’ perspectives and understanding of information about childhood cancer precision medicine', Cancer, 129, pp. 3645 - 3655, http://dx.doi.org/10.1002/cncr.34914
,2023, 'Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives', British Journal of Cancer, 129, pp. 1634 - 1644, http://dx.doi.org/10.1038/s41416-023-02429-1
,2023, '“Somewhere to turn to with my questions”: A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic Encephalopathy', European Journal of Paediatric Neurology, 47, pp. 94 - 104, http://dx.doi.org/10.1016/j.ejpn.2023.09.010
,2023, 'A Review of Creative Play Interventions to Improve Children’s Hospital Experience and Wellbeing', Hospital Pediatrics, 13, pp. E355 - E364, http://dx.doi.org/10.1542/hpeds.2022-006994
,2023, 'The effects of cancer clinical decision support systems on patient-reported outcomes: A systematic review', European Journal of Oncology Nursing, 66, http://dx.doi.org/10.1016/j.ejon.2023.102398
,2023, 'Going Virtual: Adapting an Institutional Annual Bereavement Event During the COVID-19 Pandemic', Journal of Pediatrics, 257, http://dx.doi.org/10.1016/j.jpeds.2023.03.007
,2023, 'Medical experts and trusted confidants: parent perceptions of the clinician-parent relationship in childhood cancer', Supportive Care in Cancer, 31, http://dx.doi.org/10.1007/s00520-023-07575-z
,2023, 'Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor', JCO global oncology, 9, pp. e2200281, http://dx.doi.org/10.1200/GO.22.00281
,2022, 'Parents’ understanding of genome and exome sequencing for pediatric health conditions: a systematic review', European Journal of Human Genetics, 30, pp. 1216 - 1225, http://dx.doi.org/10.1038/s41431-022-01170-2
,2022, 'Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: A mixed-method pilot study protocol', BMJ Open, 12, pp. e063249, http://dx.doi.org/10.1136/bmjopen-2022-063249
,2022, 'What’s in a Name? Parents’ and Healthcare Professionals’ Preferred Terminology for Pathogenic Variants in Childhood Cancer Predisposition Genes', Journal of Personalized Medicine, 12, pp. 1327, http://dx.doi.org/10.3390/jpm12081327
,2022, 'Facilitating the Voice of Adolescents in Hospitals Through Art: A Case Report', Journal of Adolescent Health, 70, pp. 507 - 513, http://dx.doi.org/10.1016/j.jadohealth.2021.09.027
,2021, 'Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future', Cancers, 13, pp. 5597, http://dx.doi.org/10.3390/cancers13225597
,2021, 'Starlight's “Captains on Call” Initiative: A partnership model that aims to positively distract children during medical procedures', International Journal of Integrated Care, 20, pp. 109 - 109, http://dx.doi.org/10.5334/ijic.s4109
,2021, 'Parents' experiences of postmortem tumor donation for high-grade gliomas: Benefits and suggested improvements', Neuro-Oncology Advances, 3, pp. vdab087, http://dx.doi.org/10.1093/noajnl/vdab087
,2020, 'A decision aid for nutrition support is acceptable in the pediatric hospital setting', Journal of Pediatric Nursing, 55, pp. 165 - 173, http://dx.doi.org/10.1016/j.pedn.2020.08.013
,2020, 'Positive distraction for children during burn wound care in Australia — An evaluation of the ‘Captains on Call’ pilot', Journal of Pediatric Nursing, 54, pp. 10 - 17, http://dx.doi.org/10.1016/j.pedn.2020.05.001
,2020, 'What instruments should we use to assess paediatric decision-making interventions? A narrative review', Journal of Child Health Care, 24, pp. 458 - 472, http://dx.doi.org/10.1177/1367493519869717
,2019, 'Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions', Supportive Care in Cancer, 27, pp. 4331 - 4340, http://dx.doi.org/10.1007/s00520-019-04728-x
,2019, 'Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer', Psycho-Oncology, 28, pp. 1520 - 1529, http://dx.doi.org/10.1002/pon.5109
,2018, 'Adolescent and young adult cancer survivors' memory and future thinking processes place them at risk for poor mental health', Psycho-Oncology, 27, pp. 2709 - 2716, http://dx.doi.org/10.1002/pon.4856
,2018, 'Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors', Psycho-Oncology, 28, pp. 284 - 292, http://dx.doi.org/10.1002/pon.4938
,2018, 'Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review', Patient Education and Counseling, 101, pp. 1157 - 1174, http://dx.doi.org/10.1016/j.pec.2018.02.001
,2018, 'Health-related quality of life of survivors of childhood acute lymphoblastic leukemia: a systematic review', Quality of Life Research, 27, pp. 1431 - 1443, http://dx.doi.org/10.1007/s11136-018-1788-5
,2018, 'The development of delta: Using agile to develop a decision aid for pediatric oncology clinical trial enrollment', JMIR Research Protocols, 7, pp. e119, http://dx.doi.org/10.2196/resprot.9258
,2017, 'Therapeutic Alliance and Group Cohesion in an Online Support Program for Adolescent and Young Adult Cancer Survivors: Lessons from "recapture Life"', Journal of Adolescent and Young Adult Oncology, 6, pp. 568 - 572, http://dx.doi.org/10.1089/jayao.2017.0001
,2017, 'Adolescent and Young Adult Cancer Survivors’ Experiences of the Healthcare System: A Qualitative Study.', Journal of Adolescent and Young Adult Oncology, 7, pp. 88 - 96, http://dx.doi.org/10.1089/jayao.2017.0015
,2017, 'The impact of long-term follow-up care for childhood cancer survivors: A systematic review', Critical Reviews in Oncology/Hematology, 114, pp. 131 - 138, http://dx.doi.org/10.1016/j.critrevonc.2017.04.007
,2016, 'Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis', Journal of Psychosocial Oncology, 34, pp. 347 - 362, http://dx.doi.org/10.1080/07347332.2016.1196806
,2016, 'Sexual and romantic relationships: Experiences of adolescent and young adult cancer survivors', Journal of Adolescent and Young Adult Oncology, 5, pp. 286 - 291, http://dx.doi.org/10.1089/jayao.2015.0061
,2016, 'The Reality of Relapse: Impact of Cancer Relapse on Survivorship Interventions and Patient-Reported Outcomes Data', Pediatric Blood and Cancer, 63, pp. 1492 - 1493, http://dx.doi.org/10.1002/pbc.26001
,2016, 'Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: “Cascade”', Supportive Care in Cancer, 24, pp. 2685 - 2694, http://dx.doi.org/10.1007/s00520-016-3077-6
,2016, 'Health Literacy in Adolescents and Young Adults: An Updated Review', Journal of Adolescent and Young Adult Oncology, 5, pp. 106 - 118, http://dx.doi.org/10.1089/jayao.2015.0059
,2016, 'Relationships between Russian mothers and their children with, and without, cancer: A controlled study', International Journal of Healthcare, 2, http://dx.doi.org/10.5430/ijh.v2n2p73
,2015, 'Strategies to improve adherence to treatment in adolescents and young adults with cancer: a systematic review', Clinical Oncology in Adolescents and Young Adults, Volume 5, pp. 35 - 49, http://dx.doi.org/10.2147/coaya.s85988
,Conference Papers
2020, 'Parents' Expectations and Experiences of a Precision Medicine Trial for High-Risk Paediatric Cancer', in PEDIATRIC BLOOD & CANCER, WILEY, pp. S47 - S47, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000581769200091&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
,2018, 'Enrolment in early phase paediatric oncology clinical trials: the healthcare professionals’ perspective (poster)', in Enrolment in early phase paediatric oncology clinical trials: the healthcare professionals’ perspective (poster), Australian and New Zealand Children’s Haematology and Oncology Group (ANZCHOG), Sydney, presented at Australian and New Zealand Children’s Haematology and Oncology Group (ANZCHOG), Sydney, 14 June 2018 - 16 June 2018
,2017, 'Decision-Making in Pediatric Oncology: Needs, Preferences and Experiences of Families', in PEDIATRIC BLOOD & CANCER, WILEY, pp. S491 - S492, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000408978204230&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
,Conference Presentations
2015, 'Clinical challenges in implementing psychosocial support in the online space: experiences from the 'Recapture Life' trial', Vol. 24, pp. 14 - 14, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000358255000027&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
,Conference Abstracts
2022, 'PARENTS' AND PATIENTS' UNDERSTANDING OF A PRECISION MEDICINE TRIAL FOR HIGH-RISK CHILDHOOD CANCER', in PEDIATRIC BLOOD & CANCER, WILEY, Vol. 69, pp. S399 - S399, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000859203901450&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
,2019, 'Delta: A Parent and Patient Decision Aid to Support Clinical Trial Decision-Making in Childhood Cancer', in PEDIATRIC BLOOD & CANCER, WILEY, Vol. 66, pp. S118 - S118, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000488458001090&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
,2018, 'The Development of Delta: A Decision Aid to Help Parents Considering Enroling their Child in a Paediatric Oncology Clinical Trial', in PEDIATRIC BLOOD & CANCER, WILEY, Vol. 65, pp. S587 - S587, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000445195005094&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
,2018, 'Enrolment in early phase paediatric oncology clinical trials: the healthcare professionals’ perspective.', Hong Kong, presented at International Psycho-Oncology Society, Hong Kong, 31 October 2018 - 02 November 2018
,2018, 'The development of Delta: A decision aid to help parents considering enroling their child in a paediatric oncology clinical trial', in PSYCHO-ONCOLOGY, WILEY, Vol. 27, pp. 215 - 215, https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000448188000574&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1
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