Select Publications
Journal articles
2024, 'Adapting a Preparatory Skills-Building Programme for Carers of People With Cancer Through Co-Design: The iCanSupport Project', Health Expectations, 27, http://dx.doi.org/10.1111/hex.70061
,2024, 'Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis', Palliative and Supportive Care, 22, pp. 1353 - 1359, http://dx.doi.org/10.1017/S1478951524001056
,2024, 'Communicating with families of young people with hard-to-treat cancers: Healthcare professionals’ perspectives on challenges, skills, and training', Palliative and Supportive Care, 22, pp. 539 - 545, http://dx.doi.org/10.1017/S1478951523001992
,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, '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
,2024, 'Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer', JMIR Research Protocols, 13, http://dx.doi.org/10.2196/56403
,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, 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)', 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', 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
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