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Worried together: a qualitative study of shared anxiety in patients with metastatic non-small cell lung cancer and their family caregivers

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Abstract

Purpose

Anxiety is prevalent, distressing, and understudied among patients with advanced lung cancer and their family caregivers. Preliminary evidence suggests that anxiety is not only present in both patients and caregivers but shared by the dyad. Few studies have examined the nature of shared anxiety and its impact on patient-caregiver dyads.

Methods

This study was developed to identify shared causes and manifestations of anxiety experienced by patients with stage IV non-small cell lung cancer (NSCLC) and their primary caregivers. Data were collected through in-depth semi-structured interviews with ten matched patient-caregiver dyads and one unmatched patient (N = 21) recruited from two comprehensive cancer care centers.

Results

Using grounded theory, eight themes emerged characterizing shared causes and manifestations of anxiety: (1) uncertainty, (2) loss and impending loss, (3) changing roles, (4) conflict outside the dyad, (5) finances, (6) physical symptoms, (7) fears of decline and dying, and (8) life after the patient’s passing. All themes were shared by patients and caregivers.

Conclusions

Implications for future research include the development and evaluation of interventions to reduce anxiety in cancer patient-caregiver dyads.

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Acknowledgments

This study was supported by grant number 5R03CA159707-02 from the National Cancer Institute. The authors would like to thank the patients and caregivers who participated in this study and the thoracic oncology teams at the Massachusetts General Hospital Cancer Center and the Stanford Cancer Center.

Conflict of interest

The authors do not have any conflicts of interest to disclose. The authors have full control of all primary data and agree to allow the journal to review their data if requested.

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Authors and Affiliations

  1. Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, MC: 5718, Stanford, CA, 94305-5718, USA

    Ellen Hendriksen & Cheryl Koopman

  2. PGSP-Stanford Psy.D. Consortium, Palo Alto, CA, USA

    Emma Williams & Alexandra DeGrange

  3. Department of Psychology, University of Kansas, Lawrence, KS, USA

    Nora Sporn

  4. Massachusetts General Hospital Cancer Center, Boston, MA, USA

    Joseph Greer

  5. Harvard Medical School, Boston, MA, USA

    Joseph Greer

Authors
  1. Ellen Hendriksen
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  2. Emma Williams
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  3. Nora Sporn
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  4. Joseph Greer
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  5. Alexandra DeGrange
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  6. Cheryl Koopman
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Correspondence to Ellen Hendriksen.

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Hendriksen, E., Williams, E., Sporn, N. et al. Worried together: a qualitative study of shared anxiety in patients with metastatic non-small cell lung cancer and their family caregivers. Support Care Cancer 23, 1035–1041 (2015). https://doi.org/10.1007/s00520-014-2431-9

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  • DOI: https://doi.org/10.1007/s00520-014-2431-9

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