Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer



While spouses play a vital role in the care of cancer patients, caregiving exerts a physical and psychological toll. Caregiving burden may not only compromise spouses’ quality of life but also the quality of care and support they are able to provide. Consequently, spousal caregiving burden may also negatively impact patients’ psychological adjustment. However, the effect of caregiving burden on patients’ psychological distress is unknown. Thus, this 6-month longitudinal study examined the associations between caregiving burden and distress in both lung cancer patients and their spouses.


Patients and their spouses individually completed questionnaires within 1 month of treatment initiation (baseline) and at 3- and 6-month follow-up. Distress was measured with the Brief Symptom Inventory and caregiving burden with the Caregiver Reaction Assessment.


Multilevel modeling of data from 158 couples revealed that baseline spouses’ reports of caregiving-related health problems were significantly associated with 3-month (p < 0.001) and 6-month (p = 0.01) follow-up distress in both patients and spouses even when controlling for baseline distress and dyadic adjustment. Furthermore, there was evidence that baseline spouses’ reports of schedule disruption (p = 0.05) predicted 3-month patients’ distress and baseline spouses’ reports of financial strain (p < 0.05) and lack of support (p < 0.10) predicted their own distress at 6 month.


Caregiving burden is problematic for both patients and spouses. Couples in which spouses report caregiving-related health problems may be at particular high risk of long-term elevated distress. Targets of future couple-focused interventions such as self-care and use of social support are discussed.

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The authors have no conflict of interest to disclose.

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Correspondence to Kathrin Milbury.

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Milbury, K., Badr, H., Fossella, F. et al. Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Support Care Cancer 21, 2371–2379 (2013). https://doi.org/10.1007/s00520-013-1795-6

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  • Lung cancer
  • Caregiving reactions
  • Couples
  • Distress
  • Prospective research