Brehmer, B. Brunswikian psychology in the 1990’s. In: Lagerspetz, K, Niemi, P (eds). Psychology in the 1990’s. Elsevier, Amsterdam, 1984: 383–398.
Christensen-Szalanski, J. Improving the practical utility of judgement research. In: Brehmer, B, Jungermann, H, Lourens, P, Sevon, G (eds). New Directions for Research in Judgement and Decision Literature. Elsevier, Holland, 1986: 383–410.
Kahneman, D, Tversky, A. Thinking Fast, Thinking Slow. Macmillan, New York, 20
Pfeil, M. Parents’ experience of giving consent for their child to undergo surgery. J Child Health Care 2011; 15: 380–388.
Clark, AM. Qualitative research: what it is and what it can contribute to Cardiology in the Young. Cardiol Young 2009; 19: 131–144.
Slovic, P. The Perception of Risk. Routledge, London, 2016.
Ahmed, S, Bryant, LD, Tizro, Z, Shickle, D. Interpretations of informed choice in antenatal screening: a cross-cultural, Q-methodology study. Soc Sci Med 2012; 74: 997–1004.
Ahmed, S, Atkin, K, Hewison, J, Green, J. The influence of faith and religion and the role of religious and community leaders in prenatal decisions for sickle cell disorders and thalassaemia major. Prenat Diagn 2006; 26: 801–809.
Gitsels-van der Wal, JT, Manniën, J, Ghaly, MM, Verhoeven, PS, Hutton, EK, Reinders, HS. The role of religion in decision-making on antenatal screening of congenital anomalies: a qualitative study amongst Muslim Turkish origin immigrants. Midwifery 2014; 30: 297–302.
Bécares, L, Shaw, R, Nazroo, J, et al. Ethnic density effects on physical morbidity, mortality, and health behaviors: a systematic review of the literature. Am J Public Health 2012; 102: e33–e66.
Erikson, SL. Post-diagnostic abortion in Germany: reproduction gone awry, again? Soc Sci Med 2003; 56: 1987–2001.
Sawyer, SM, Cerritelli, B, Carter, LS, Cooke, M, Glazner, JA, Massie, J. Changing their minds with time: a comparison of hypothetical and actual reproductive behaviors in parents of children with cystic fibrosis. Pediatrics 2006; 118: e649–e656.
Weil, J. Psychosocial genetic counseling in the post-nondirective era: a point of view. J Genet Couns 2003; 12: 199–211.
Clarke, A. The process of genetic counselling. In: Harper, P, Clarke, A (eds). Genetics, Society and Clinical Practice. BIOS Scientific Publishers, Oxford, 1997: 179–200.
O’Neill, O. Autonomy and Trust in Bioethics. Cambridge University Press, Cambridge, 2002.
Lotto, R, Smith, LK, Armstrong, N. Clinicians’ perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study. BMJ Open 2017; 7: e014716.
Lotto, R, Smith, LK, Armstrong, N. Diagnosis of a severe congenital anomaly: a qualitative analysis of parental decision making and the implications for healthcare encounters. Health Expectations 2018; 21: 678–684.
Stavropoulou, C, Glycopantis, D. Conflict in the doctor-patient relation and non-adherence: a game theory approach. London School of Economics, London, 2008.
Kennedy, I. Bristol Royal Infirmary Inquiry; Learning from Bristol: The Report of the Public Inquiry into Children’s Heart Surgery at the Bristol Royal Infirmary 1984–1995. The Stationary Office, London. 2001.
Palinkas, LA, Horwitz, SM, Green, CA, Wisdom, JP, Duan, N, Hoagwood, K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health Ment Health Serv Res 2015; 42: 533–544.
Jenkins, KJ, Gauvreau, K, Newburger, JW, Spray, TL, Moller, JH, Iezzoni, LI. Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002; 123: 110–118.
Westaby, S, Archer, N, Manning, N, et al. Comparison of hospital episode statistics and central cardiac audit database in public reporting of congenital heart surgery mortality. BMJ 2007; 335: 759.
Smith, LK, Budd, JL, Field, DJ, Draper, ES. Socioeconomic inequalities in outcome of pregnancy and neonatal mortality associated with congenital anomalies: population based study. Br Med J 2011; 343: 4306.
Francis, J, Johnston, M, Robertson, C, et al. What is an adequate sample size? Operationalising data saturation for theory-based interview studies. Psychol Health 2010; 25: 1229–1245.
O’Reilly, M, Parker, N. ‘Unsatisfactory saturation’: a critical exploration of the notion of saturated sample sizes in qualitative research. Qual Res 2013; 13: 190–197.
Strauss, A, Corbin, J. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage, Newbury Park, CA, 1990.
Silverman, D. Interpreting Qualitative Data: Methods for Analyzing Talk, Text and Interaction. Sage, Thousand Oaks, CA, 2006.
Seale, C, Gobo, G, Gubrium, J, Silverman, D. Qualitative Research Practice. Sage, London, 2007.
Greenhalgh, T, Annandale, E, Ashcroft, R, et al. An open letter to the BMJ editors on qualitative research. BMJ 2016; 352: i563.
Manera, KE, Craig, JC, Johnson, DW, Tong, A. The power of the patient voice: conducting and using qualitative research to improve care and outcomes in peritoneal dialysis. Periton Dialysis Int 2018; 38: 242–245.
Lincoln, Y, Guba, E. Naturalistic Inquiry. Sage, Beverly Hills, CA, 1985.
Creswell, J, Miller, D. Determining validity in qualitative inquiry. Theor Pract 2000; 39: 124–131.
Barusch, A, Gringeri, C, George, M. Rigor in qualitative social work research: a review of strategies used in published articles. Soc Work Res 2011; 35: 11–19.
Charmaz, K, Belgrave, L. Qualitative interviewing and grounded theory analysis. SAGE Handb Inter Res complexity Craft 2012; 2: 347–365.
Morse, JM. Critical analysis of strategies for determining rigor in qualitative inquiry. Qual Health Res 2015; 25: 1212–1222.
Birt, L, Scott, S, Cavers, D, Campbell, C, Walter, F. Member checking: a tool to enhance trustworthiness or merely a nod to validation? Qual Health Res 2016; 26: 1802–1811.
Petrilli, CM, Mack, M, Petrilli, JJ, Hickner, A, Saint, S, Chopra, V. Understanding the role of physician attire on patient perceptions: a systematic review of the literature — targeting attire to improve likelihood of rapport (TAILOR) investigators. BMJ Open 2015; 5: e006578.
Woolf‐King, SE, Arnold, E, Weiss, S, Teitel, D. “There’s no acknowledgement of what this does to people”: a qualitative exploration of mental health among parents of children with critical congenital heart defects. J Clin Nurs 2018; 27: 2785–2794.
Lotto, R, Armstrong, N, Smith, LK. Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly ‐ A qualitative study of what is important to parents. Midwifery 2016; 43: 14–20.
Beach, L, Lipshitz, R. Why classical decision theory is an inappropriate standard for evaluating and aiding most human decision making. In: Klein, G, Orasanu, J, Calderwood, R, Zsambok, CE (eds). Decision Making in Action. Ablex Publishing Corporation, New Jersey, 1993: 21–36.
Zinn, JO. ‘In-between’and other reasonable ways to deal with risk and uncertainty: a review article. Health Risk Soc 2016; 18: 348–366.
Meakins, L, Ray, L, Hegadoren, K, Rogers, LG, Rempel, GR. Parental vigilance in caring for their children with hypoplastic left heart syndrome. Pediatr Nurs 2015; 41: 31–50.
Sjostrom-Strand, A, Terp, K. Parents’ experiences of having a baby with a congenital heart defect and the child’s heart surgery. Compr Child Adolesc Nurs 2017; 42: 10–23.
Tregay, J, Wray, J, Crowe, S, et al. Going home after infant cardiac surgery: a UK qualitative study. Arch Dis Child 2016; 101: 320–325.
Spiegelhalter, D, Pearson, M, Short, I. Visualizing uncertainty about the future. Science 2011; 333: 1393–1400.
Schapira, MM, Nattinger, AB, McHorney, CA. Frequency or probability? A qualitative study of risk communication formats used in health care. Med Decis Making 2001; 21: 459–467.
Tversky, A, Kahneman, D. The framing of decisions and the psychology of choice. Science 1981; 211: 453–458.
Malenka, DJ, Baron, JA, Johansen, S, Wahrenberger, JW, Ross, JM. The framing effect of relative and absolute risk. J Gen Intern Med 1993; 8: 543–548.
Mazur, DJ, Hickam, DH. Patients’ preferences for risk disclosure and role in decision making for invasive medical procedures. J Gen Intern Med 1997; 12: 114–117.
Brown, SR, Mathew, R, Keding, A, Marshall, HC, Brown, JM, Jayne, DG. The impact of postoperative complications on long-term quality of life after curative colorectal cancer surgery. Ann Surg 2014; 259: 916–923.
Pinto, A, Faiz, O, Davis, R, Almoudaris, A, Vincent, C. Surgical complications and their impact on patients’ psychosocial well-being: a systematic review and meta-analysis. BMJ Open 2016; 6: e007224.
Lloyd, A, Hayes, P, Bell, PR, Naylor, AR. The role of risk and benefit perception in informed consent for surgery. Med Decis Making 2001; 21: 141–149.