‘Trapped in a double cage’: How patients’ partners experienced the diagnosis of advanced cancer during the COVID-19 pandemic.

We’re delighted to present this month’s ‘Editor’s Choice’ from Palliative Medicine, the official research journal of the EAPC. You can read the longer article in ‘Palliative Medicine’ which EAPC members can access free from the EAPC website. Dr. Sophie Opsomer is a General Practitioner and a PhD student based in Belgium whose research focuses on resilience in partners of patients diagnosed with advanced or palliative cancer.


Photo of Dr. Sophie Opsomer
Dr. Sophie Opsomer

Cancer often affects the mental wellbeing of both the patient and their relatives, especially once all curative cancer treatment has been exhausted.  Therefore, researchers and healthcare professionals are currently looking to learn more about how people successfully adapt to a new cancer diagnosis.1

This resilience process starts with the experience of a potentially traumatic event of a diagnosis of incurable cancer of the informal caregiver’s loved one. Our literature review told us that whether one follows a resilient path or not is dependent upon factors such as the caregiver’s personal characteristics, professional support and their informal support network, and that these influences may be moderated by one’s coping strategies.2, 3 Building on this literature, we then looked at how caregivers experienced their loved one’s diagnosis of incurable cancer while simultaneously being confronted with the global threat of the COVID-19 pandemic.  We thought it was possible that being confronted simultaneously with these two potentially traumatic events could have a significant impact on psychological wellbeing, and hence on the development of the resilience process of our study’s participants.

An in-depth analysis of twelve interviews with caregivers allowed us to gain insight into their experiences. The interviews were conducted in the first six months after a relative was diagnosed with advanced cancer. These participants felt they were ‘living in a double cage’. They discussed how the imposed lockdown measures meant the pace of their lives slowed. They could no longer manage to ‘escape from the cancer’ and it felt that their lives came to a halt as their partner raced toward death. On the other hand, the quality time spent with their partner was much appreciated.

Under normal circumstances, resilience may evolve while caring for a person with advanced cancer. Our research showed that surprisingly the pandemic seemed to act as a catalyst for resilient coping strategies such as maintaining normality, assuming responsibility, and managing or mastering the situation. The resilience process seemed to be promoted under these unusual circumstances and a new equilibrium was established by the participants with striking ease. As such, they accepted the pandemic and its imposed measures, continuously balanced the risk of infecting the patient against their needs to maintain wellbeing and created inventive ways to do this. For instance, patio furniture was arranged in such a way as to safely accommodate a few friends or caregivers experimented with new recipes in order to replicate food from their partner’s favourite restaurants.

However our findings also show that important resilience-supporting characteristics—such as balanced dependency (the participants willingness to ask for and to accept help)2; being the information processor (stipulating what and how much information they wanted to receive and what information or how much detail they communicated with others)2; and finally positivity—are all at risk when dealing with two potentially traumatic events at the same time. Although the coping strategies used were a creative response to a specific set of circumstances, it was also clear that caregivers were struggling with the situation, and questions arose about how long they could deal with this in the longer term. Hence, the risk for ‘burn out’ or exhaustion could certainly be a possibility for these individuals if additional professional and personal support was not provided.

Even in circumstances of increased pressure and unpredictability as demonstrated during the COVID-19 pandemic, we found that caregivers who already face life-challenging tasks seemed to build on a rich and creative repertoire in dealing with a very difficult situation. However, it is still a struggle and one that may be difficult to sustain for a long time period.  Our research shows the vital importance of healthcare professional support of people with advanced cancer and their partners as well as informal social support networks in building and maintaining resilience. Overall, we found that exploring the caregiver’s personal experiences in this unique situation could increase understanding on resilience and more particularly the dynamic interplay between personal resources and those available to them in their community and from healthcare services.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’

We hope you’ll read the longer article in ‘Palliative Medicine’ – EAPC members can access a FREE copy from the EAPC website. ‘Trapped in a double cage: How patients’ partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis’ by Sophie Opsomer, Sofie Joossens, Jan De Lepeleire, Peter Pype and Emelien Lauwerier. Issue published: Palliative Medicine 2022, Vol. 36(5) 810–820. https://doi.org/10.1177/02692163221080660

References

  1.  Opsomer S, De Lepeleire J, Lauwerier E, et al. Resilience in family caregivers of patients diagnosed with advanced cancer – unravelling the process of bouncing back from difficult experiences, a hermeneutic review. Eur J Gen Pract 2020; 26: 79-85.
  2. Opsomer S, Lauwerier E, De Lepeleire J, et al. Resilience in advanced cancer caregiving. A systematic review and meta-synthesis. Palliative Medicine 2022;36(1):44-58.
  3. Bonanno GA, Romero SA and Klein SI. The temporal elements of psychological resilience: an integrative framework for the study of individuals, families, and communities. Psychological Inquiry 2015; 26: 139-169.

Links

  • Read Palliative Medicine Editor’s Choice posts on the EAPC blog.
  • Follow Palliative Medicine on Twitter @palliativemedj.

About the author

Sophie is a Belgian General Practitioner, experienced in palliative care, elderly care, and communication in healthcare and a PhD student at the Academic Center for General Practice, Katholieke Universiteit Leuven and at the Department of Public Health and Primary Care at Ghent University. Her research focuses on resilience in partners of patients diagnosed with advanced or palliative cancer, using qualitative research methods to gain more insights into this area. LinkedIn & Twitter: @opsomersophie.

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE

If you are currently an Individual or Associate EAPC Member, you have full access to the Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s Choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles for 2022.

Join, or renew your membership here. Members of our national associations can join the EAPC for free.


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