Cancer and seeking normality: a longitudinal, qualitative study to explore how patients with advanced cancer and their carers cope and maintain psychological wellbeing

Roberts, D., Grande, G., Lloyds-Williams, M., Calman, Lynn, Appleton, L., Large, P., Kernaghan, S. and Walshe, C. (2013) Cancer and seeking normality: a longitudinal, qualitative study to explore how patients with advanced cancer and their carers cope and maintain psychological wellbeing. National Cancr Research Institute (NCRI) Conference, Liverpool, United Kingdom. 03 - 06 Nov 2013.

Abstract

Background: many people live with the stresses and uncertainty of advanced cancer, affecting quality of life, physical and mental health. Current professional responses pathologise the experience, largely ignoring patients' and carers' own, often successful, coping strategies. By exploring how people with advanced (stage 3/4) cancer and their carers use coping strategies to recover or maintain psychological well being and ‘normality' this innovative study examines lived experience to better understand how professionals can provide proactive support.

Method: patients (n=26) and their nominated carers (n=28) were recruited to a qualitative longitudinal interview study, purposively selected by gender and disease group: palliative care, breast, prostate, colorectal and lung. Two interviews, 4-12 weeks apart, were scheduled to recognise potential points of change and examined a range of ‘everyday' challenges. Themes were generated from dual independent coding and confirmed through discussion with patients, carers and health professionals.

Results: individuals employ a variety of coping strategies to achieve individualised perceptions of the ‘good days' which are fundamental to psychological wellbeing and achieving a new ‘normality'. These include self-indulgence, socialising and gaining support from others. Patients and carers often use the same or similar strategies but in different contexts, at different time-points and for different purposes. Participants attach great value to information from peers and highlight how this is substantively different from interactions with professionals.

Conclusion: exploring the experiences of patient and carer dyads longitudinally enables better understanding not only of strategies used, but also how they are deployed and change over time. The results indicate that better access to ‘everyday' information from peers is likely to stimulate development of coping strategies independently of professional input.

There is a need to develop initiatives which actively engage with patient and carer perspectives, and focus away from purely professional responses

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Contributors

Author: Lynn Calman

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