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Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives

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Abstract

Purpose

Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients’ and FMs’ perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancer patients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement.

Methods

Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancer patient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods.

Results

Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs’ provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of ‘messenger’ between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs).

Conclusions

FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs’ needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

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Notes

  1. An accurate response rate could not be determined for participants recruited through the advocacy group as numbers receiving the invitation email were not recorded. All participants who returned a questionnaire completed the interview.

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Acknowledgments

We gratefully acknowledge the Informed Medical Decisions Foundation for providing funds to support this project [Grant Number 0176-1]

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Authors and Affiliations

  1. Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology, The University of Sydney, Level 6, Chris O’Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia

    Rebekah Laidsaar-Powell, Phyllis Butow, Stella Bu, Alana Fisher & Ilona Juraskova

Authors
  1. Rebekah Laidsaar-Powell
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  2. Phyllis Butow
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  3. Stella Bu
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  4. Alana Fisher
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  5. Ilona Juraskova
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Corresponding author

Correspondence to Rebekah Laidsaar-Powell.

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Ethics approval for the study was obtained from The Cancer Institute NSW Human Research Ethics Committee.

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Laidsaar-Powell, R., Butow, P., Bu, S. et al. Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives. Support Care Cancer 24, 4131–4140 (2016). https://doi.org/10.1007/s00520-016-3237-8

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  • DOI: https://doi.org/10.1007/s00520-016-3237-8

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