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Dr Clarissa Schilstra

Dr Clarissa Schilstra

Postdoctoral Fellow

BA Psych (Hons), PhD

Medicine & Health
School of Clinical Medicine

Dr Clarissa Schilstra is a postdoctoral research fellow within Australia's largest paediatric psycho-oncology research group: the Behavioural Sciences Unit at the Kids Cancer Centre, Sydney Children's Hospital and UNSW. Dr Schilstra's research focuses on the lived experience of people affected by cancer, assessing lived experiences on an international scale, and playing a key role in paediatric cancer consumer-led research and care improvement initiatives across Australia.
E-mail
c.schilstra@unsw.edu.au
Location
Kids Cancer Centre, Level 1 South Sydney Children's Hospital, High Street Randwick NSW 2031
  • Book Chapters | 2024
    Schilstra C, 2024, 'The Value of Social Media: A Patient's Perspective', in Applying Social Media Technologies in Healthcare Environments, pp. 7 - 13, http://dx.doi.org/10.4324/9781003580393-2
  • Journal articles | 2026
    Burns MA; Lah S; Law C; Schilstra CE; Ellis SJ; Wakefield CE; Sansom-Daly UM; Cohn RJ; Marshall GM; Lum A; Donnan B; Walwyn T; Carter A; Fielden P; De Luca CR; Barton B; Drew D; Maguire F; O'Dwyer C; Fardell JE, 2026, 'High School Cancer Experience and Age at Diagnosis: Perspectives of Adolescents, Young Adults, and Parents', JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY, http://dx.doi.org/10.1177/21565333261438095
    Journal articles | 2026
    De Silva G; Robertson EG; Bowers A; Schilstra C; Patel SK; McCarthy MC; McLoone J; Pole JD; Sansom-Daly UM; Oppelaar S; Cummings J; Bradford N, 2026, 'What Matters Most: The Top 10 Child and Adolescent Cancer Research Priorities in Australia', Health Expectations, 29, http://dx.doi.org/10.1111/hex.70689
    Journal articles | 2026
    De Silva G; Robertson EG; Bowers A; Schilstra C; Patel SK; McCarthy MC; McLoone J; Pole JD; Sansom‐Daly UM; Oppelaar S; Cummings J; Bradford N, 2026, 'Cover Image', Health Expectations, 29, http://dx.doi.org/10.1111/hex.70697
    Journal articles | 2026
    Ghows C; Schilstra CE; McCleary K; Briggs NE; Kotecha RS; Lourenco RDA; Ramachandran S; Cockcroft R; Conyers R; Cross S; Dalla-Pozza L; Downie P; Revesz T; Osborn M; Alvaro F; Wakefield CE; Marshall GM; Trahair T; Mateos MK; Fardell JE, 2026, 'Tracking Health Related Quality of Life From Diagnosis to Follow-Up Among Australian Children With Acute Lymphoblastic Leukaemia.', Pediatr Blood Cancer, pp. e70539, http://dx.doi.org/10.1002/1545-5017.70539
    Journal articles | 2026
    Sansom-Daly UM; Irestorm E; Houweling R; Hetherington K; McGill BC; Ellis SJ; Schilstra CE; Donoghoe MW; Bravery BD; Cohn RJ; Anazodo A; Wakefield CE, 2026, 'Do young people who have been treated for cancer identify as ‘survivors’? Adolescents and young adults’ preferences for cancer-related identities in survivorship', Journal of Cancer Survivorship, http://dx.doi.org/10.1007/s11764-026-02074-6
    Journal articles | 2026
    Wakefield CE; Schilstra CE; Bedia GE; Wiener L; Ilbawi A; Palacios-Derflingher L; Dovers E; Cayrol J, 2026, 'Enduring grief after cancer: Global findings from bereaved families in the WHO Lived Experience of Cancer study', JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 71, pp. e838 - e839, http://dx.doi.org/10.1016/j.jpainsymman.2026.04.103
    Journal articles | 2025
    McLoone JK; Wakefield CE; Glasson N; Wiener L; Ortiz R; Ilbawi A; Schilstra CE; Hoffman R; Cayrol J, 2025, 'The Lived Experience of Childhood Cancer Survivors and Their Parents: A Multi-National Study of Access to Survivorship Care and Information and Support Needs', Pediatric Blood and Cancer, 72, http://dx.doi.org/10.1002/pbc.31593
    Journal articles | 2025
    Parker C; Schilstra CE; McCleary K; Martin M; Trahair TN; Kotecha RS; Ramachandran S; Cockcroft R; Conyers R; Cross S; Dalla-Pozza L; Downie P; Revesz T; Osborn M; Marshall GM; Wakefield CE; Mateos MK; Fardell JE, 2025, 'Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment', Cancers, 17, http://dx.doi.org/10.3390/cancers17071238
    Journal articles | 2025
    Sansom-Daly UM; McLoone JK; Fardell JE; Evans HE; McGill BC; Robertson EG; Signorelli C; Ellis S; Ha L; Hetherington K; Houweling RE; Nevin SM; Schilstra CE; Mitchell R; Haber M; Cohn RJ; Wakefield CE, 2025, 'Bridging the Gap: Embedding Psychosocial Oncology Research into Comprehensive Cancer Care for Children and Young People', Cancers, 17, pp. 2123 - 2123, http://dx.doi.org/10.3390/cancers17132123
    Journal articles | 2025
    Schilstra CE; Ellis SJ; Sedger A; Burns MA; Miller KA; Wakefield CE; Cohn RJ; Lah S; Sansom-Daly UM; Anazodo AC; Fardell JE, 2025, 'Social Participation Among Long-Term Survivors of Childhood and Adolescent Cancer', Pediatric Blood and Cancer, 72, http://dx.doi.org/10.1002/pbc.32042
    Journal articles | 2025
    Schilstra CE; Wakefield CE; McLoone J; Wiener L; Donoghoe MW; Hoffman RI; Echodu M; Ortiz R; Ilbawi A; Cayrol J, 2025, 'Development of a World Health Organization international survey assessing the lived experience of people affected by cancer: outcomes from pilot testing, user feedback, and survey revision', Supportive Care in Cancer, 33, http://dx.doi.org/10.1007/s00520-025-09372-2
    Journal articles | 2024
    Cayrol J; Wakefield CE; Ilbawi A; Donoghoe M; Hoffman R; Echodu M; Schilstra C; Ortiz R; Wiener L, 2024, 'The lived experience of people affected by cancer: A global cross-sectional survey protocol', Plos One, 19, pp. e0294492, http://dx.doi.org/10.1371/journal.pone.0294492
    Journal articles | 2024
    Fardell JE; Schilstra C; Hikila J; Collins D; Kelada L; Lah S; Cohn RJ; Wakefield CE; Ellis S, 2024, 'Survivors of child and adolescent cancer experiences of bullying at school or work: self-report and parent proxy report', Journal of Psychosocial Oncology Research and Practice, 6, http://dx.doi.org/10.1097/OR9.0000000000000130
    Journal articles | 2024
    Schilstra CE; Ellis SJ; Cohen J; Gall A; Diaz A; Clarke K; Dumlao G; Chard J; Cumming TM; Davis E; Dhillon H; Burns MA; Docking K; Koh ES; O'Reilly J; Sansom-Daly UM; Shaw J; Speers N; Taylor N; Warne A; Fardell JE, 2024, 'Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study', Jmir Cancer, 10, http://dx.doi.org/10.2196/47944
    Journal articles | 2024
    Schilstra CE; Sansom-Daly UM; Ellis SJ; Anazodo AC; Trahair TN; Lindsay T; Amiruddin A; O’Dwyer C; Maguire F; Nevin S; Battisti R; Fardell JE, 2024, 'Social Anxiety Symptoms in Adolescents and Young Adults Recently Diagnosed with Cancer', Journal of Adolescent and Young Adult Oncology, 13, pp. 674 - 682, http://dx.doi.org/10.1089/jayao.2023.0186
    Journal articles | 2024
    Schilstra CE; Sansom-Daly UM; Ellis SJ; Trahair TN; Anazodo AC; Amiruddin A; Lindsay T; Maguire F; Wakefield CE; Lah S; Bland E; Lenthen K; Rifkin A; Awan A; Kittos T; Hanbury N; Tsalidis S; Patterson P; McDonald F; Fardell JE, 2024, 'Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia', Journal of Adolescent and Young Adult Oncology, 13, pp. 8 - 29, http://dx.doi.org/10.1089/jayao.2023.0027
    Journal articles | 2022
    Schilstra CE; Fardell JE; Ellis SJ; Jones KM; Anazodo AC; Trahair TN; Lah S; Cohn RJ; Wakefield CE; Sansom-Daly UM, 2022, 'Social Anxiety Symptoms in Survivors of Childhood and Adolescent Cancer', Journal of Adolescent and Young Adult Oncology, 11, pp. 129 - 137, http://dx.doi.org/10.1089/jayao.2021.0050
    Journal articles | 2022
    Schilstra CE; McCleary K; Fardell JE; Donoghoe MW; McCormack E; Kotecha RS; Lourenco RDA; Ramachandran S; Cockcroft R; Conyers R; Cross S; Dalla-Pozza L; Downie P; Revesz T; Osborn M; Alvaro F; Wakefield CE; Marshall GM; Mateos MK; Trahair TN, 2022, 'Prospective longitudinal evaluation of treatment-related toxicity and health-related quality of life during the first year of treatment for pediatric acute lymphoblastic leukemia', BMC Cancer, 22, pp. 985, http://dx.doi.org/10.1186/s12885-022-10072-x
    Journal articles | 2022
    Schilstra CE; Sansom-Daly UM; Schaffer M; Fardell JE; Anazodo AC; McCowage G; Fletcher JI; Marshall GM; Buchhorn-White J; Evtushenko M; Trahair TN; Ellis SJ, 2022, '"we Have All This Knowledge to Give, so Use Us as a Resource": Partnering with Adolescent and Young Adult Cancer Survivors to Determine Consumer-Led Research Priorities', Journal of Adolescent and Young Adult Oncology, 11, pp. 211 - 222, http://dx.doi.org/10.1089/jayao.2021.0052
    Journal articles | 2021
    Schilstra CE; Fardell JE; Burns MA; Ellis SJ; Anazodo AC; Trahair TN; Sansom-Daly UM, 2021, 'Determinants of social functioning among adolescents and young adults with cancer: A systematic review', Psycho-Oncology, 30, pp. 1626 - 1642, http://dx.doi.org/10.1002/pon.5740
    Journal articles | 2020
    Nevin SM; Wakefield CE; Schilstra CE; McGill BC; Bye A; Palmer EE, 2020, 'The information needs of parents of children with early-onset epilepsy: A systematic review', Epilepsy and Behavior, 112, pp. 107382, http://dx.doi.org/10.1016/j.yebeh.2020.107382
    Journal articles | 2019
    Ellis SJ; Fardell JE; Wakefield CE; Schilstra CE; Burns MA; Donnan B; Walwyn T; Lum A; Marshall G; Carter A; Barton B; Cohn RJ, 2019, 'Are we meeting the training needs of healthcare and education professionals supporting children with cancer in their return to school?', Pediatric Blood and Cancer, 66, pp. e27575, http://dx.doi.org/10.1002/pbc.27575
    Journal articles | 2018
    Sendak MD; Schilstra C; Tye E; Brotkin S; Maslow G; Gok C, 2018, 'Positive Youth Development at Camps for Youth with Chronic Illness: A Systematic Review of the Literature', Journal of Youth Development, 13, pp. 201 - 215, http://dx.doi.org/10.5195/jyd.2018.551
  • Conference Abstracts | 2026
    Wakefield CE; Schilstra CE; Bedia GE; Wiener L; Ilbawi A; Palacios-Derflingher L; Dovers E; Cayrol J, 2026, 'Enduring grief after cancer: Global findings from bereaved families in the WHO Lived Experience of Cancer study', in JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, ELSEVIER SCIENCE INC, Vol. 71, pp. e838 - e839, http://dx.doi.org/10.1016/j.jpainsymman.2026.04.103
    Preprints | 2023
    Schilstra CE; Ellis SJ; Cohen J; Gall A; Diaz A; Clarke K; Dumlao G; Chard J; Cumming TM; Davis E; Dhillon H; Burns MA; Docking K; Koh E-S; O'Reilly J; Sansom-Daly UM; Shaw J; Speers N; Taylor N; Warne A; Fardell JE, 2023, Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study (Preprint), http://dx.doi.org/10.2196/preprints.47944
    Conference Papers | 2020
    Jackson ER; Duchatel RJ; Mannan A; Douglas A; Skerrett-Byrne DA; Smith N; Cain J; Hulleman E; Carcaboso AM; Monje M; McCowage GB; Alvaro F; Yadavilli S; Waszak SM; Koschmann C; Mueller S; Nazarian J; Dun MD, 2020, 'Panelist Invited Speakers', in ASIA-PACIFIC JOURNAL OF CLINICAL ONCOLOGY, WILEY, pp. 15 - 16, http://dx.doi.org/10.1111/ajco.13470

Dean's Award for Outstanding PhD Thesis, UNSW

Dr Schilstra currently leads the the World Health Organisation Global Survey on the Lived Experience of People Affected by Cancer and serves as a consumer representative for the International Late Effects of Childhood Cancer Guidelines Harmonization Group.