Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research



Following their child’s cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents’ difficulties when interacting with health-care professionals (HCPs). We examined parents’ health-care experiences during and after the child’s cancer treatment.


We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the psychosocial adjustment to illness scale while recruiting for the “CASCADE” survivorship intervention. We used grounded theory to explore parents’ health-care experiences.


Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents’ experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents’ engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents’ experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms.


Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents’ flexibility in acting as a dynamic buffer between HCP-interactions and their child.

This is a preview of subscription content, log in to check access.

Access options

Buy single article

Instant unlimited access to the full article PDF.

US$ 39.95

Price includes VAT for USA

Subscribe to journal

Immediate online access to all issues from 2019. Subscription will auto renew annually.

US$ 199

This is the net price. Taxes to be calculated in checkout.

Fig. 1
Fig. 2


n :


SD :

Standard deviation


Technical and further education

BM :

Bone marrow


Stem cell transplant


Health-care professionals


  1. 1.

    Sultan S, Leclair T, Rondeau E, Burns W, Abate C (2016) A systematic review on factors and consequences of parental distress as related to childhood cancer. Eur J Cancer Care 25(4):616–637.

  2. 2.

    Hewitt M, Weiner SL, Simone JV (2003) The trajectory of childhood cancer care. In: Childhood cancer survivorship: improving care and quality of life. The National Academies Press, Washington D.C., pp 37–48

  3. 3.

    Alderfer MA, Navsaria N, Kazak AE (2009) Family functioning and posttraumatic stress disorder in adolescent survivors of childhood cancer. J Fam Psychol 23:717–725.

  4. 4.

    Davies S, Young B, Salmon P (2016) Towards understanding problems in the parent-practitioner relationship when a child has cancer: meta-synthesis of the qualitative literature. Psycho-oncology:1252 - 1260.

  5. 5.

    Coyne I, Amory A, Kiernan G, Gibson F (2014) Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences. Eur J Oncol Nurs 18(3):273–280.

  6. 6.

    Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA, Klip EC (2001) Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. J Pediatr Psychol 26(4):225–235

  7. 7.

    Fuertes JN, Toporovsky A, Reyes M, Osborne JB (2017) The physician-patient working alliance: theory, research, and future possibilities. Patient Educ Couns 100(4):610–615.

  8. 8.

    Michel G, Gianinazzi ME, Eiser C, Bergstraesser E, Vetsch J, von der Weid N, Kuehni CE, Group SPO (2016) Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care 25(6):1024–1033.

  9. 9.

    Vetsch J, Rueegg CS, Mader L, Bergstraesser E, Rischewski J, Kuehni CE, Michel G, Group tSPO (2016) Follow-up care of young childhood cancer survivors: attendance and parental involvement. Support Care Cancer 24(7):3127–3138.

  10. 10.

    Doshi KK, A. E.; Hocking, M. C.; Derosa, B. W.; Schwartz, L. A.; Hobbie, W. L.; Ginsberg, J. P.; Deatrick, J. (2014) Why mothers accompany adolescent and young adult childhood cancer survivors to follow-up clinic visits. J Pediatr Oncol Nurs 31(1):51–57.

  11. 11.

    Baenziger J, Roser K, Mader L, Christen S, Kuehni CE, Gumy-Pause F, Tinner EM, Michel G (2018) Can the theory of planned behavior help explain attendance to follow-up care of childhood cancer survivors? Psychooncology.

  12. 12.

    Vetsch J, Fardell JE, Wakefield CE, Signorelli C, Michel G, McLoone JK, Walwyn T, Tapp H, Truscott J, Cohn RJ, group Ass (2017) “Forewarned and forearmed”: long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care. Patient Educ Couns 100(2):355–363.

  13. 13.

    Vetsch J, Rueegg CS, Gianinazzi ME, Bergsträsser E, von der Weid NX, Michel G, for the Swiss Paediatric Oncology G (2015) Information needs in parents of long-term childhood cancer survivors. Pediatr Blood Cancer 62 (5):859–866. doi:

  14. 14.

    Wakefield CE, Sansom-Daly UM, McGill BC, Ellis SJ, Doolan EL, Robertson EG, Mathur S, Cohn RJ (2016) Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: Cascade. Support Care Cancer 24:2685–2694.

  15. 15.

    Morrow GR, Chiarello RJ, Derogatis LR (1978) A new scale for assessing patients’ psychosocial adjustment to medical illness. Psychol Med 8(04):605.

  16. 16.

    Bradley EH, Curry LA, Devers KJ (2007) Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 42(4):1758–1772.

  17. 17.

    Robertson EG, Sansom-Daly UM, Wakefield CE, Ellis SJ, McGill BC, Doolan EL, Cohn RJ (2016) Sexual and romantic relationships: experiences of adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol 5(3):286–291.

  18. 18.

    Nvivo - QSR international (2018) Run a coding comparison query.

  19. 19.

    Santiago Delefosse M (2011) An embodied-socio-psychological perspective in health psychology? Soc Personal Psychol Compass 5(5):220–230.

  20. 20.

    Rocque R, Leanza Y (2015) A systematic review of patients’ experiences in communicating with primary care physicians: intercultural encounters and a balance between vulnerability and integrity. PLoS One 10(10):e0139577.

  21. 21.

    Davies S, Salmon P, Young B (2017) When trust is threatened: qualitative study of parents' perspectives on problematic clinical relationships in child cancer care. Psycho-Oncology 26(9):1301–1306.

  22. 22.

    Park CL (2010) Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events. Psychol Bull 136(2):257–301.

  23. 23.

    Lyons AC, Chamberlain K (2006) Being ill. In: Lyons AC, Chamberlain K (eds) Health Psychology: A critical introduction. Cambridge University Press, Cambridge, pp 279–318.

  24. 24.

    Lin M, Sansom-Daly UM, Wakefield CE, McGill BC, Cohn RJ (2017) Health literacy in adolescents and young adults: perspectives from Australian Cancer survivors. J Adolesc Young Adult Oncol 6(1):150–158.

  25. 25.

    May EA, McGill BC, Robertson EG, Anazodo A, Wakefield CE, Sansom-Daly UM (2018) Adolescent and young adult cancer survivors’ experiences of the healthcare system: a qualitative study. J Adolesc Young Adult Oncol 7(1):88–96.

  26. 26.

    Sansom-Daly UM, Lin M, Robertson EG, Wakefield CE, McGill BC, Girgis A, Cohn RJ (2016) Health literacy in adolescents and young adults: an updated review. J Adolesc Young Adult Oncol 5(2):106–118.

  27. 27.

    Signorelli C, Wakefield CE, Fardell JE, Brierley ME, Darlington AS, Williamson J, Downie P, Cohn RJ, Group ASS (2019) Perceptions of future health and cancer risk in adult survivors of childhood cancer: implications for engagement in follow-up care. Cancer 125(6):1008–1009.

  28. 28.

    Sisk BA, Kang TI, Mack JW (2018) How parents of children with cancer learn about their children’s prognosis. Pediatrics 141(1).

  29. 29.

    Sisk BA, Mack JW, Ashworth R, DuBois J (2018) Communication in pediatric oncology: state of the field and research agenda. Pediatr Blood Cancer 65(1).

  30. 30.

    McKenzie SE, Curle C (2012) ‘The end of treatment is not the end’: parents’ experiences of their child’s transition from treatment for childhood cancer. Psycho-Oncology 21:647–654.

  31. 31.

    Vetsch J, McGill BC, Sansom-Daly UM, Hetherington K, Ellis SJ, Marshall KH, Wakefield CE (2019) Comorbidity of distress experienced by parents of childhood cancer survivors points to the importance of understanding transdiagnostic cognitive-affective mechanisms. Acta Oncol 58(2):189–190.

  32. 32.

    Lown EAP, Farya, Schwartz LA, Rosenberg AR, Jones B (2015) Psychosocial follow-up in survivorship as a standard of care in pediatric oncology. Pediatr Blood & Cancer 62(S5):S531–S601.

  33. 33.

    Wiener L, Shaw Weaver M, Bell CJ, Sansom-Daly UM (2015) Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults 5:1–18.

  34. 34.

    Ryan P, Luz S, Albert P, Vogel C, Normand C, Kennedy E, Elwyn G (2019) Using artificial intelligence to assess clinicians’ communication skills. BMJ 364:l161. doi:doi:

  35. 35.

    McGill BC, Wakefield CE, Sethu V, Epps J (2019) Collaboration between engineering and the behavioural sciences is critical for the advancement of artificial intelligence in medicine. BMJ rapid response. Doi:

  36. 36.

    Koch KD, Jones BL (2018) Supporting parent caregivers of children with life-limiting illness. Children 5(7).

  37. 37.

    Australian Bureau of Statistics (2018) 6227.0 - Education and Work, Australia, May 2018. vol Series. Commonwealth of Australia, Canberra

  38. 38.

    Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ (2010) Parental adjustment to the completion of their child's cancer treatment. Pediatr Blood Cancer 56(4):524–531.

Download references


The authors thank the parents who participated in this study and wish to acknowledge the valuable contributions of Emma Doolan, Sarah Ellis, Holly Evans, Kate Marshall, Sanaa Mathur, Eden Robertson, and Helen Wilson from the Behavioural Sciences Unit (Kids Cancer Centre, Sydney Children’s Hospital).

Funding information

The CASCADE project is funded by Cancer Australia, Priority-Driven Collaborative Cancer Research Scheme (APP1065428). U.M. Sansom-Daly is supported by an Early Career Fellowship from the Cancer Institute of NSW (ID: 14/ECF/1–11) and an Early Career Fellowship from the National Health and Medical Research Council of Australia (NHMRC, APP1111800). C.E. Wakefield is supported by a Career Development Fellowship from the NHMRC (APP1143767). The Behavioural Sciences Unit is proudly supported by the Kids with Cancer Foundation, the Kids Cancer Alliance, and Cancer Council NSW (PG16–02) with the support of the Estate of the Late Harry McPaul. J. Baenziger is supported by the Swiss National Science Foundation (SNSF, P1LUP1_178330).

Author information

Correspondence to Ursula M. Sansom-Daly.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Baenziger, J., Hetherington, K., Wakefield, C.E. et al. Understanding parents’ communication experiences in childhood cancer: a qualitative exploration and model for future research. Support Care Cancer (2020) doi:10.1007/s00520-019-05270-6

Download citation


  • Childhood cancer
  • Adolescent
  • Communication
  • Parents
  • Survivorship
  • Health-care professionals