Select Publications

Journal articles

Harris KW; Schweiberger K; Kavanaugh-McHugh A; Arnold RM; Merlin J; Chang JC; Kasparian NA, 2024, 'An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease', PEC Innovation, 4, http://dx.doi.org/10.1016/j.pecinn.2024.100265

Verrall CE; Tran DL; Kasparian NA; Williams T; Oxenham V; Ayer J; Celermajer DS; Cordina RL, 2024, 'Cognitive Functioning and Psychosocial Outcomes in Adults with Complex Congenital Heart Disease: A Cross-sectional Pilot Study', Pediatric Cardiology, 45, pp. 529 - 543, http://dx.doi.org/10.1007/s00246-023-03376-7

Sholler GF; Selbie LA; Tallon M; Keating J; Ayer J; Burchill L; Cheung MMH; Cordina R; Culnane E; Donovan S; Eastaugh L; Elliott C; Fletcher J; Justo RN; Kasparian NA; Kelly A; Morsman D; Nicolae M; Orr Y; Pendrick E; Ramsay JM; Reményi B; Shipton S; Weintraub RG; Van Wijk E; Wheaton G; Venugopal P, 2024, 'Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards). 1st Edition', Heart Lung and Circulation, 33, pp. 153 - 196, http://dx.doi.org/10.1016/j.hlc.2023.03.017

Paguinto SG; Kasparian NA; Carroll K; Thomas N; Bray P; Farrar MA, 2024, 'Getting Wheels: development and evaluation of a psychoeducational resource for parents of children with a neuromuscular condition following recommendation of wheelchair equipment', Disability and Rehabilitation: Assistive Technology, http://dx.doi.org/10.1080/17483107.2024.2310282

Marshall KH; Pincus HA; Tesson S; Lingam R; Woolfenden SR; Kasparian NA, 2024, 'Integrated psychological care in pediatric hospital settings for children with complex chronic illness and their families: a systematic review', Psychology and Health, 39, pp. 452 - 478, http://dx.doi.org/10.1080/08870446.2022.2072843

Tesson S; Swinsburg D; Nielson-Jones C; Costa DSJ; Winlaw DS; Badawi N; Sholler GF; Butow PN; Kasparian NA, 2024, 'Mother-Infant Dyadic Synchrony and Interaction Patterns after Infant Cardiac Surgery', Journal of Pediatric Psychology, 49, pp. 13 - 26, http://dx.doi.org/10.1093/jpepsy/jsad069

Phillips K; Callaghan B; Rajagopalan V; Akram F; Newburger JW; Kasparian NA, 2023, 'Neuroimaging and Neurodevelopmental Outcomes Among Individuals With Complex Congenital Heart Disease: JACC State-of-the-Art Review', Journal of the American College of Cardiology, 82, pp. 2225 - 2245, http://dx.doi.org/10.1016/j.jacc.2023.09.824

Elhoff JJ; Kasparian NA, 2023, 'If Not Now, When? Taking Action to Improve Mental Health Outcomes for Families of Children With Heart Disease', Pediatric Critical Care Medicine, 24, pp. 966 - 969, http://dx.doi.org/10.1097/PCC.0000000000003319

Miles KG; Farkas DK; Laugesen K; Sørensen HT; Kasparian NA; Madsen N, 2023, 'Mental Health Conditions among Children and Adolescents with Congenital Heart Disease: A Danish Population-Based Cohort Study', Circulation, 148, pp. 1381 - 1394, http://dx.doi.org/10.1161/CIRCULATIONAHA.123.064705

Schweiberger K; Harris KW; Kavanaugh-McHugh A; Soudi A; Arnold RM; Merlin JS; Kasparian NA; Chang JC, 2023, '“I Just Want You to Hear That Term”: Characterizing Language Used in Fetal Cardiology Consultations', Journal of Cardiovascular Development and Disease, 10, http://dx.doi.org/10.3390/jcdd10090394

Johnson S; Kasparian NA; Cullum AS; Flanagan T; Ponting C; Kowalewski L; Main EK, 2023, 'Addressing Adverse Childhood and Adult Experiences during Prenatal Care', Obstetrics and Gynecology, 141, pp. 1072 - 1087, http://dx.doi.org/10.1097/AOG.0000000000005199

Kim ME; Kasparian NA; Zang H; Pater C; Chlebowski MM; Marcuccio E; Florez A; Morales DLS; Madsen N; Moore RA, 2023, 'Are Parent Discharge Readiness Scores Effective for Patients With Congenital Heart Disease After Cardiac Surgery?', Journal of Pediatrics, 257, http://dx.doi.org/10.1016/j.jpeds.2023.02.008

Eagleson KJ; Mccombs D; Gerlich TM; Justo RN; Kasparian NA; Bora S, 2023, 'Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease', Journal of Pediatric Psychology, 48, pp. 537 - 552, http://dx.doi.org/10.1093/jpepsy/jsad015

Verrall CE; Patel S; Travitz L; Tchieu J; Dale RC; Kasparian NA; Winlaw DS; Blue GM, 2023, 'Biological and structural phenotypes associated with neurodevelopmental outcomes in congenital heart disease', Translational Pediatrics, 12, pp. 768 - 786, http://dx.doi.org/10.21037/tp-22-687

Kasparian NA; Sadhwani A; Sananes R; Blumenfeld E; Butcher JL; Cassidy AR; Cox SM; Kenowitz J; Miller TA; Sanz JH; Wolfe KR; Ilardi D, 2023, 'Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: A site survey from the Cardiac Neurodevelopmental Outcome Collaborative', Cardiology in the Young, 33, pp. 280 - 287, http://dx.doi.org/10.1017/S1047951122000579

Siegel R; McGrady ME; Dynan L; Kharofa R; Stackpole K; Casson P; Siegel F; Kasparian NA, 2023, 'Effects of Loss and Gain Incentives on Adherence in Pediatric Weight Management: Preliminary Studies and Economic Evaluation of a Theoretical Trial', International Journal of Environmental Research and Public Health, 20, http://dx.doi.org/10.3390/ijerph20010584

Chlebowski MM; Stark C; Khoury PR; Zang H; Baenziger J; Kasparian NA, 2023, 'Evaluation of the use of visual storytelling as an educational intervention in the cardiac ICU: reaching parents before they are in crisis', Cardiology in the Young, http://dx.doi.org/10.1017/S1047951123004201

Paguinto SG; Kasparian NA; Bray P; Farrar M, 2023, 'Multidisciplinary perspectives and practices of wheelchair prescription for children with neuromuscular conditions', Disability and Rehabilitation: Assistive Technology, 18, pp. 166 - 174, http://dx.doi.org/10.1080/17483107.2020.1839793

Akram F; Pidcock M; Oake D; Sholler GF; Farrar MA; Kasparian NA, 2023, '"The usual challenges of work are all magnified": Australian paediatric health professionals' experiences during the COVID-19 pandemic.', Int J Cardiol Congenit Heart Dis, 11, pp. 100434, http://dx.doi.org/10.1016/j.ijcchd.2022.100434

Kavanaugh-McHugh A; Arnold R; Merlin J; Kasparian N; Chang J, 2023, '“I just want you to hear that term”: Characterizing language used in fetal cardiology consultations', Patient Education and Counseling, 109, pp. 107 - 107, http://dx.doi.org/10.1016/j.pec.2022.10.247

Harris KW; Schweiberger K; Kavanaugh-McHugh A; Arnold RM; Merlin J; Kasparian NA; Chang JC, 2023, 'Introducing Uncertainty: An Observational Study of Conversations on Prenatal Diagnosis of Complex Congenital Heart Disease (Sci238)', Journal of Pain and Symptom Management, 65, pp. e660 - e661, http://dx.doi.org/10.1016/j.jpainsymman.2023.02.288

Miles K; Kasparian NA; Farkas D; Laugesen K; Sorensen HT; Madsen N, 2022, 'Abstract 10042: Mental Health Conditions In Congenital Heart Disease: A Danish Population Based Cohort Study', Circulation, 146, http://dx.doi.org/10.1161/circ.146.suppl_1.10042

Perazzo D; Moore R; Kasparian NA; Rodts M; Horowitz-Kraus T; Crosby L; Turpin B; Beck AF; Hutton J, 2022, 'Chronic pediatric diseases and risk for reading difficulties: a narrative review with recommendations', Pediatric Research, 92, pp. 966 - 978, http://dx.doi.org/10.1038/s41390-022-01934-y

Marshall KH; D'udekem Y; Winlaw DS; Dalziel K; Woolfenden SR; Zannino D; Costa DSJ; Bishop R; Celermajer DS; Sholler GF; Kasparian NA, 2022, 'The Australian and New Zealand Fontan Registry Quality of Life Study: Protocol for a population-based assessment of quality of life among people with a Fontan circulation, their parents, and siblings', BMJ Open, 12, http://dx.doi.org/10.1136/bmjopen-2022-065726

Kovacs AH; Brouillette J; Ibeziako P; Jackson JL; Kasparian NA; Kim YY; Livecchi T; Sillman C; Kochilas LK, 2022, 'Psychological Outcomes and Interventions for Individuals with Congenital Heart Disease: A Scientific Statement from the American Heart Association', Circulation: Cardiovascular Quality and Outcomes, 15, pp. 672 - 688, http://dx.doi.org/10.1161/HCQ.0000000000000110

Cox SM; Butcher JL; Sadhwani A; Sananes R; Sanz JH; Blumenfeld E; Cassidy AR; Cowin JC; Ilardi D; Kasparian NA; Kenowitz J; Kroll K; Miller TA; Wolfe KR, 2022, 'Integrating Telehealth Into Neurodevelopmental Assessment: A Model From the Cardiac Neurodevelopmental Outcome Collaborative', Journal of Pediatric Psychology, 47, pp. 707 - 713, http://dx.doi.org/10.1093/jpepsy/jsac003

Kasparian NA; Kovacs AH, 2022, 'Quality of Life and Other Patient-Reported Outcomes Across the Life Span Among People With Fontan Palliation', Canadian Journal of Cardiology, 38, pp. 963 - 976, http://dx.doi.org/10.1016/j.cjca.2022.04.025

Carey KA; Farrar MA; Kasparian NA; Street DJ; De Abreu Lourenco R, 2022, 'Family, healthcare professional, and societal preferences for the treatment of infantile spinal muscular atrophy: A discrete choice experiment', Developmental Medicine and Child Neurology, 64, pp. 753 - 761, http://dx.doi.org/10.1111/dmcn.15135

Tacy TA; Kasparian NA; Karnik R; Geiger M; Sood E, 2022, 'Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease', Seminars in Perinatology, 46, http://dx.doi.org/10.1016/j.semperi.2022.151587

Luigjes-Huizer YL; Tauber NM; Humphris G; Kasparian NA; Lam WWT; Lebel S; Simard S; Smith AB; Zachariae R; Afiyanti Y; Bell KJL; Custers JAE; de Wit NJ; Fisher PL; Galica J; Garland SN; Helsper CW; Jeppesen MM; Liu J; Mititelu R; Monninkhof EM; Russell L; Savard J; Speckens AEM; van Helmondt SJ; Vatandoust S; Zdenkowski N; van der Lee ML, 2022, 'What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis', Psycho-Oncology, 31, pp. 879 - 892, http://dx.doi.org/10.1002/pon.5921

McDonald HM; Sherman KA; Kasparian NA, 2022, 'How Mindful Awareness and Psychological Distress Influence Mother-Infant Bonding and Maternal Perceptions of Infant Temperament', Mindfulness, 13, pp. 955 - 966, http://dx.doi.org/10.1007/s12671-022-01848-0

Sood E; Gramszlo C; Perez Ramirez A; Braley K; Butler SC; Davis JA; Divanovic AA; Edwards LA; Kasparian N; Kelly SL; Neely T; Ortinau CM; Riegel E; Shillingford AJ; Kazak AE, 2022, 'Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease', Journal of Patient Experience, 9, http://dx.doi.org/10.1177/23743735221092488

Thompson JR; Smith AL; Lo SN; Kasparian NA; Saw RP; Dieng M; Seaman L; Martin LK; Guitera P; Milne D; Schmid H; Cust AE; Bartula I, 2022, 'Protocol for the implementation of a stepped-care model to address fear of cancer recurrence in patients previously diagnosed with early-stage (0-II) melanoma', BMJ open, 12, pp. e054337, http://dx.doi.org/10.1136/bmjopen-2021-054337

Tesson S; Butow PN; Marshall K; Fonagy P; Kasparian NA, 2022, 'Parent-child bonding and attachment during pregnancy and early childhood following congenital heart disease diagnosis', Health Psychology Review, 16, pp. 378 - 411, http://dx.doi.org/10.1080/17437199.2021.1927136

Kularatna S; Jadambaa A; Senanayake S; Brain D; Hawker N; Kasparian NA; Abell B; Auld B; Eagleson K; Justo R; McPhail SM, 2022, 'The Cost of Neurodevelopmental Disability: Scoping Review of Economic Evaluation Methods', ClinicoEconomics and Outcomes Research, 14, pp. 665 - 682, http://dx.doi.org/10.2147/CEOR.S370311

Akram F; Pidcock M; Oake D; Sholler G; Farrar M; Kasparian N, 2022, '“The Usual Challenges of Work Are All Magnified”: Australian Paediatric Health Professionals’ Experiences During the COVID-19 Pandemic', Heart, Lung and Circulation, 31, pp. S278 - S278, http://dx.doi.org/10.1016/j.hlc.2022.06.468

Kularatna S; Jadambaa A; Sennanayake S; Brain D; Hawker N; Kasparian N; Abell B; Auld B; Eagleson K; Justo R; McPhail S, 2022, 'Economic Justification for Neurodevelopmental Support for Children With Congenital Heart Disease: A Scoping Review of Economic-Modelling and Recommendations for Future Practice', Heart, Lung and Circulation, 31, pp. S270 - S270, http://dx.doi.org/10.1016/j.hlc.2022.06.455

Eagleson K; Chin T; Justo R; Kasparian N; Bora S, 2022, 'Lucky and Valuing a “Normal” Life: A Qualitative Study of Parents and Siblings of Children With Dextro-Transposition of the Great Arteries', Heart, Lung and Circulation, 31, pp. S272 - S272, http://dx.doi.org/10.1016/j.hlc.2022.06.458

Chu KA; Schwartz C; Towner E; Kasparian NA; Callaghan B, 2021, 'Parenting under pressure: A mixed-methods investigation of the impact of COVID-19 on family life', Journal of Affective Disorders Reports, 5, http://dx.doi.org/10.1016/j.jadr.2021.100161

Kan JM; Dieng M; Butow PN; Mireskandari S; Tesson S; Menzies SW; Costa DSJ; Morton RL; Mann GJ; Cust AE; Kasparian NA, 2021, 'Identifying the ‘Active Ingredients' of an Effective Psychological Intervention to Reduce Fear of Cancer Recurrence: A Process Evaluation', Frontiers in Psychology, 12, http://dx.doi.org/10.3389/fpsyg.2021.661190

Sood E; Lisanti AJ; Woolf-King SE; Wray J; Kasparian N; Jackson E; Gregory MR; Lopez KN; Marino BS; Neely T; Randall A; Zyblewski SC; Brosig CL, 2021, 'Parent mental health and family functioning following diagnosis of CHD: A research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative', Cardiology in the Young, 31, pp. 900 - 914, http://dx.doi.org/10.1017/S1047951121002134

McDonald HM; Sherman KA; Kasparian NA, 2021, 'Factors associated with psychological distress among Australian women during pregnancy', Personality and Individual Differences, 172, http://dx.doi.org/10.1016/j.paid.2020.110577

Tesson S; Swinsburg D; Kasparian NA, 2021, 'Maintaining Momentum in Infant Mental Health Research during COVID-19: Adapting Observational Assessments', Journal of Pediatric Psychology, 46, pp. 254 - 263, http://dx.doi.org/10.1093/jpepsy/jsab020

Verrall CE; Yang JYM; Chen J; Schembri A; D'Udekem Y; Zannino D; Kasparian NA; Du Plessis K; Grieve SM; Welton T; Barton B; Gentles TL; Celermajer DS; Attard C; Rice K; Ayer J; Mandelstam S; Winlaw DS; Mackay MT; Cordina R, 2021, 'Neurocognitive Dysfunction and Smaller Brain Volumes in Adolescents and Adults with a Fontan Circulation', Circulation, 143, pp. 878 - 891, http://dx.doi.org/10.1161/CIRCULATIONAHA.120.048202

McDonald HM; Sherman KA; Kasparian NA, 2021, 'A mediated model of mindful awareness, emotion regulation, and maternal mental health during pregnancy and postpartum', Australian Journal of Psychology, 73, pp. 368 - 380, http://dx.doi.org/10.1080/00049530.2021.1908846

Paguinto SG; Kasparian NA; Bray P; Farrar M, 2020, '“It’s not just the wheelchair, it’s everything else”: Australian parents’ perspectives of wheelchair prescription for children with neuromuscular disorders', Disability and Rehabilitation, 42, pp. 3457 - 3466, http://dx.doi.org/10.1080/09638288.2019.1595749

Farrar MA; Carey KA; Paguinto SG; Kasparian NA; De Abreu Lourenço R, 2020, '“The Whole Game is Changing and You’ve Got Hope”: Australian Perspectives on Treatment Decision Making in Spinal Muscular Atrophy', Patient, 13, pp. 389 - 400, http://dx.doi.org/10.1007/s40271-020-00415-w

Lisy K; Lai-Kwon J; Ward A; Sandhu S; Kasparian NA; Winstanley J; Boyle F; Gyorki D; Lacey K; Bishop J; Jefford M, 2020, 'Patient-reported outcomes in melanoma survivors at 1, 3 and 5 years post-diagnosis: a population-based cross-sectional study', Quality of Life Research, 29, pp. 2021 - 2027, http://dx.doi.org/10.1007/s11136-020-02464-y

Carazo MR; Kolodziej MS; Dewitt ES; Kasparian NA; Newburger JW; Duarte VE; Singh MN; Opotowsky AR, 2020, 'Prevalence and prognostic association of a clinical diagnosis of depression in adult congenital heart disease: Results of the boston adult congenital heart disease biobank', Journal of the American Heart Association, 9, http://dx.doi.org/10.1161/JAHA.119.014820

Coffey MJ; Mckay IR; Doumit M; Chuang S; Adams S; Stelzer-Braid S; Waters SA; Kasparian NA; Thomas T; Jaffe A; Katz T; Ooi CY, 2020, 'Evaluating the Alimentary and Respiratory Tracts in Health and disease (EARTH) research programme: a protocol for prospective, longitudinal, controlled, observational studies in children with chronic disease at an Australian tertiary paediatric hospital', BMJ Open, 10, http://dx.doi.org/10.1136/bmjopen-2019-033916


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