Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study

Authors

Elizabeth A. Lobb, Calvary Health Care SydneyFollow
Christine Sanderson, Calvary Health Care Sydney, Kogarah, NSW, Australia
Jane Mowll, Calvary Health Care Sydney, Kogarah, NSW, Australia
Phyllis N. Butow, Centre for Medical Psychology & Evidence-Based Decision-Making (CeMPED), School of Psychology, The University of Sydney, Camperdown, NSW, Australia
Naomi McGowan, Centre for Medical Psychology & Evidence-Based Decision-Making (CeMPED), School of Psychology, The University of Sydney, Camperdown, NSW, Australia
Melanie A. Price, Centre for Medical Psychology & Evidence-Based Decision-Making (CeMPED), School of Psychology, The University of Sydney, Camperdown, NSW, Australia

Publication Details

Lobb, E. A., Sanderson, C., Mowll, J., Butow, P. N., McGowan, N., & Price, M. A. (2013). Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study. Palliative Medicine, 27 (7), 625-631.
https://doi.org/10.1177/0269216313483663

Abstract

Background: Complications of grief are an important area of investigation with potential to improve the well-being of palliative care caregivers. There has been little study of the prevalence or significance of post-traumatic stress disorder for those bereaved after an expected death.

Aim: To identify evidence suggestive of post-traumatic stress disorder symptoms in a population of bereaved caregivers of patients who have died of ovarian cancer.

Design: Caregivers’ recollections of their end-of-life experiences were coded and analysed, using qualitative data obtained from interviews 6 months after the patient’s death.

Setting/participants: Australian Ovarian Cancer Study–Quality of Life Study is a population-based epidemiological study using mixed methods to explore caregivers’ experiences following the expected death of a woman with ovarian cancer. Thirty-two caregivers from the Australian Ovarian Cancer Study–Quality of Life Study participated in semi-structured telephone interviews 6 months post-bereavement.

Results: When describing the patient’s death at their 6-month interview, all interviewees used language consistent with some degree of shock and traumatisation. For the majority, there was also evidence suggesting resilience and resolution. However, a number of interviewees describe intrusive memories associated with physical sights and sounds that they witnessed at the deathbed.

Conclusions: This exploratory study demonstrates the phenomenon of the ‘shocked caregiver’. If trauma symptoms are present in bereaved carers in palliative care, it has implications for palliative care provision. Given that trauma symptoms may be distinct from prolonged grief disorder, this may also have implications for provision of bereavement counselling. Further research into this phenomenon is required.

Keywords

caregivers, bereavement, Post-traumatic-stress-disorder, palliative