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Information-sharing challenges between adolescents with cancer, their parents and health care providers: a qualitative study

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Abstract

Purpose

We aimed to assess the viewpoints, experiences, and preferences within the clinical communication triangle (parent, adolescent, health care team) concerning the information-sharing process for adolescents with cancer.

Methods

This is a qualitative descriptive-exploratory study. Overall, 33 participants were recruited (adolescents diagnosed with cancer aged 15–20 years, their parents, oncologists, and nurses). In-depth semi-structured interviews were conducted and data were analyzed using constant comparative analysis.

Results

Data analysis yielded three main themes. Disaffiliation of adolescents in information-sharing process with three subthemes: confusion and unanswered questions; and, seeking information from inferior sources. Barriers to information-sharing with three subthemes: parents as gatekeepers in the information-sharing process, cultural background creating strong barriers for information-sharing, and the negative attitude of the medical team towards information-sharing. The last theme is cornerstones in information-sharing process with three subthemes: trust and honesty to enhance communication between adolescents and the medical team, the necessity of paving the way for information-sharing, and the value of gradual information-sharing based on the adolescents need and mental readiness.

Conclusion

Participants believed that information-sharing was insufficient and provided recommendations for facilitating this process. Information-sharing process needs to be gradual and based on the adolescent’s need and mental capacity. Future research needs to focus on devising a protocol for information-sharing with adolescents with cancer that accounts for familial and cultural factors, is carefully timed, and provides clearer and more efficacious communication between parents, adolescents, and the health care team.

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Author information

Authors and Affiliations

  1. Cancer Prevention Research Center, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran

    Masoud Bahrami

  2. Nursing and Midwifery Care Research Centre, Faculty of Nursing and Midwifery, Isfahan University of Medical Sciences, Isfahan, Iran

    Mahboobeh Namnabati & Parastoo Oujian

  3. Cancer Prevention Research Center, Isfahan University of Medical Sciences, Isfahan, Iran

    Fariborz Mokarian

  4. Flinders University, Adelaide, Australia

    Paul Arbon

Authors
  1. Masoud Bahrami
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  2. Mahboobeh Namnabati
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  3. Fariborz Mokarian
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  4. Parastoo Oujian
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  5. Paul Arbon
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Corresponding author

Correspondence to Parastoo Oujian.

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Funding sources

This study was financially supported by Isfahan University of Medical Sciences (No.393502).

Conflict of interest

The authors declare that they have no conflict of interest.

The study was approved by the Local Research Ethics Committee of Isfahan University of Medical Sciences (No.393502). All participants provided written informed consent for participation. Anonymity and confidentiality were assured and participants were allowed to withdraw from the study at any time, and for any reason. All data including audio tapes and transcripts were stored securely in the principal researcher’s office and were accessible only to the researchers.

Additional information

Implications and Contribution

All three groups of participants believed that information-sharing was insufficient and they presented a solution for facilitating this process. Health care providers need further training on communication and information-sharing skills. Future research needs to focus on devising a protocol for information-sharing with adolescents with cancer.

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Bahrami, M., Namnabati, M., Mokarian, F. et al. Information-sharing challenges between adolescents with cancer, their parents and health care providers: a qualitative study. Support Care Cancer 25, 1587–1596 (2017). https://doi.org/10.1007/s00520-016-3561-z

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  • DOI: https://doi.org/10.1007/s00520-016-3561-z

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