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

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Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

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Abbreviations

n :

Number

SD :

Standard deviation

TAFE :

Technical and further education

BM :

Bone marrow

SCT :

Stem cell transplant

HCP :

Health-care professionals

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Acknowledgements

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

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).

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Authors and Affiliations

  1. Department of Health Sciences and Medicine, University of Lucerne, Frohburgstrasse 3, 6002, Luzern, Switzerland

    Julia Baenziger & Gisela Michel

  2. School of Women’s and Children’s Health, UNSW Sydney, NSW, Australia

    Julia Baenziger, Kate Hetherington, Claire E. Wakefield, Lauren Carlson, Brittany C. McGill, Richard J. Cohn & Ursula M. Sansom-Daly

  3. Behavioural Sciences Unit, Kids Cancer Centre, Level 1 South, Sydney Children’s Hospital, High St., Randwick NSW, 2031, Australia

    Julia Baenziger, Kate Hetherington, Claire E. Wakefield, Lauren Carlson, Brittany C. McGill, Richard J. Cohn & Ursula M. Sansom-Daly

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  1. Julia Baenziger
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Correspondence to Ursula M. Sansom-Daly.

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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 28, 4467–4476 (2020). https://doi.org/10.1007/s00520-019-05270-6

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  • DOI: https://doi.org/10.1007/s00520-019-05270-6

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