"The Less I Think About It, the Better I Feel": A Thematic Analysis of the Subjective Experience of Malignant Mesothelioma Patients and Their Caregivers

Our plain-English summary of "The Less I Think About It, the Better I Feel": A Thematic Analysis of the Subjective Experience of Malignant Mesothelioma Patients and Their Caregivers, by F. Guglielmucci, I.G. Franzoi, M. Bonafede, et al (Frontiers in Psychology, 2018).

The study

• Authors: F. Guglielmucci, I.G. Franzoi, M. Bonafede, F.V. Borgogno, F. Grosso, A. Granieri
• Journal: Frontiers in Psychology
• Published: 2018;9:205
• Cited by: 28 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Aim: A cancer diagnosis-and in particular a Malignant Mesothelioma (MM) one-breaks the somatopsychic balance of the individual, compromising the quality of residual life and giving rise to many negative emotions difficult to integrate and to elaborate (such as depression, fears, anxieties, hopelessness, guilt, shame, and rage). Several national and international guidelines acknowledged the importance of evaluating psychological and socio-relational features in MM patients and their caregiver. However, only few studies have investigated the subjective experience of MM patients and even less research has focused on the caregivers' experience. Thus, the aim of the present study is to investigate the lived experience of both MM patients and their caregivers, providing an in-depth comprehension of the psychological sequelae of the disease. Materials and Methods: Within a psychoanalytically-informed conceptual framework, open-ended interviews were conducted with 10 MM patients and 9 caregivers. Thematic analysis was employed: interviews were audio-recorded, transcribed verbatim, and coded in order to identify the main recurring themes across the narratives. Results: We detected four different themes: (1) bodily symptoms and embodied emotions; (2) living in or near a National Priority Contaminated Site (NCPS); (3) "nothing is like it was" (that is, the impact of the diagnosis on everyday life, the changes it causes in the family relationships, the things that are still possible to do, the mourning process); (4) "what will become of us?" (that is, worries about the impact of the diagnosis on the beloved ones, death and legacy). Discussion: MM patients and caregivers seem to be stuck in a concrete mental functioning focused on symptoms and they find it difficult to openly think and talk about the affective and emotional consequences of the diagnosis. Alongside this, they express the need to find new and less conflictual ways to stay together and talk to each other during the period of active treatments for the illness (i.e., chemotherapy, radiotherapy, etc) and the end-of-life. The results of this study have important implications for the clinical management of MM and can help develop multi-professional specialist interventions addressed to both patients and caregivers.

In plain English

This qualitative interview study took place in Casale Monferrato, Italy, a town the authors describe as a National Priority Contaminated Site, polluted by the former Eternit asbestos factory. Between October 2014 and January 2015, the authors interviewed 10 people newly diagnosed with malignant mesothelioma (nine pleural, one peritoneal) together with 9 of their first-degree caregivers. Of 21 new diagnoses in that period, 11 did not take part. The interviews were analysed for recurring themes, without statistics. Four themes emerged: bodily symptoms and emotions, living in a contaminated area, how life had changed, and worry about the future. Eight of the 10 patients began by describing their medical history, and participants had difficulty putting feelings into words. All participants linked the disease to where they lived, and 12 of the 19 talked about the Eternit factory and compensation claims. The authors concluded that patients and caregivers seemed stuck on concrete talk about symptoms, and that interventions are needed to help them think and talk about the diagnosis. They noted the small sample and that the findings may not apply elsewhere.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Qualitative study of open-ended, audio-recorded interviews analysed by inductive thematic analysis within a psychoanalytic framework. Patients and caregivers were interviewed together, and the authors chose not to quantify the data.
• Who was studied: 19 participants: 10 patients with malignant mesothelioma (3 biphasic pleural, 5 epithelioid pleural, 1 sarcomatoid pleural, 1 peritoneal) and 9 first-degree caregivers. They were recruited consecutively at the Interdepartmental Functional Unit for Malignant Mesothelioma (UFIM), Casale Monferrato, Italy, between October 2014 and January 2015. Of 21 new diagnoses in that period, 3 were excluded for critical clinical condition, 2 were followed in another district and 6 declined consent.
• Exposure: Living in or near Casale Monferrato, a National Priority Contaminated Site where the authors link pollution to the Eternit asbestos factory, which closed in 1986. The interviews covered asbestos exposure and work history. The article does not name fiber types or measure individual doses.
• Main results:
  • Four themes were identified: bodily symptoms and embodied emotions; living in or near a National Priority Contaminated Site; "nothing is like it was"; and "what will become of us?"
  • 8 of the 10 patients began their accounts by talking about their medical history and the physical aspects of the disease.
  • Patients and caregivers appeared unable to put into words feelings of shame, guilt and blame linked to the illness.
  • 7 of the 10 patients were in clinical trials at the UFIM and described feeling like "guinea pigs".
  • All participants connected the cause of mesothelioma with the area where they lived.
  • 12 of the 19 participants talked about the Eternit factory and the legal battle over compensation.
  • Some participants expressed a need for support, preferably from someone outside the family who was going through the same experience.
  • Patients more often than caregivers expressed worry about the diagnosis's impact on their relatives. Caregivers tended to stress that the patient had changed since the diagnosis.
  • Only 2 of the 10 patients were able to imagine their loved ones' lives after their own death.
• The authors' conclusion: The authors concluded that patients and caregivers seemed stuck in a concrete way of thinking focused on symptoms. In their opinion, interventions are needed that increase the possibility of thinking about the diagnosis and its multidimensional impact.
• Limitations the authors state:
  • Qualitative methods cannot provide statistically representative data.
  • The sample was small.
  • Patients and caregivers with the most severe symptoms or psychological suffering may have declined to be interviewed.
  • All participants lived in or near a contaminated site and no patient was in the end-of-life phase, so the findings may not apply to patients in other phases of illness or to people in towns without community-wide asbestos exposure.

Topics

Medical terms in this study, explained in our Lexicon: Mesothelioma, Chemotherapy.

Related studies

• Is less also better? A single-institution experience on treatment of early stage Malignant Pleural Mesothelioma — P. Bertoglio, M.C. Ambrogi, et al. (2017)
• Psychological Distress after a Diagnosis of Malignant Mesothelioma in a Group of Patients and Caregivers at the National Priority Contaminated Site of Casale Monferrato — M. Bonafede, A. Granieri, et al. (2020)
• Preliminary validation of a questionnaire assessing psychological distress in caregivers of patients with malignant mesothelioma: Mesothelioma Psychological Distress Tool-Caregivers — M. Bonafede, C. Chiorri, et al. (2022)
• Gender and the experiences of living with mesothelioma: A thematic analysis — S. Ejegi-Memeh, S. Robertson, et al. (2021)
• Confirmatory validation of a brief patient-reported outcome measure assessing psychological distress in caregivers of malignant mesothelioma patients: the Mesothelioma Psychological Distress Tool-Caregivers — A. Granieri, I.G. Franzoi, et al. (2024)
• A survey of patient and caregiver experience with malignant pleural mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)

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