Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review

Abstract

Background: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. Aim: To describe the palliative care needs and experiences of people with mesothelioma and their family carers. Design: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115). Data sources: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers. Results: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients. Conclusion: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.

Preliminary validation of a questionnaire assessing psychological distress in caregivers of patients with malignant mesothelioma: Mesothelioma Psychological Distress Tool—Caregivers

“…4 This unique combination is central to understanding the psychological distress related to MM. [5][6][7] Often, family members became involved in the care process of an ill relative, experiencing emotional reactions comparable with those experienced by the patient. 8 Managing the care needs and the high symptom burden of patients can lead to several negative consequences for caregivers.…”

“…8 Under these circumstances, caregivers may experience difficulty in handling their own personal needs as well as building up a psychological representation of what is happening to them and what they are going to face in the course of the disease. 5 Some authors have found clinically higher levels of somatic and cognitive complaints, anxiety-depressive symptoms, and posttraumatic conditions in the caregivers of MM patients, suggesting that the psychological sequelae of MM could be even more traumatic for caregivers than patients. 9 Caregivers are confronted with a traumatic reality in which their own need to be supported often remains unseen.…”

“…Clinically, with its high symptom burden, incurability, rarity, and primarily occupational–industrial causation, MM has a unique psychosocial impact 4 . This unique combination is central to understanding the psychological distress related to MM 5–7 …”

“…Under these circumstances, caregivers may experience difficulty in handling their own personal needs as well as building up a psychological representation of what is happening to them and what they are going to face in the course of the disease 5 …”

Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers

“…Other studies indicate that specialist lung and MPM nursing teams may be providing non-specialist palliative care. 28 29 Variability in support for participants from primary care was evident. The need for better collaboration between primary, secondary and tertiary care has been recognised elsewhere.…”