Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs

Breen, Lauren J.; Huseini, Taha; Same, Anne; Peddle-McIntyre, Carolyn J.; Lee, Y.C. Gary

doi:10.1016/j.pec.2022.02.017

Cited by 9 publications

(17 citation statements)

References 66 publications

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“…For example, the perspective of carers has been brought to the fore. Nine studies combined the analysis of patient and carer experiences; 8 9 22–28 seven studies analysed experiences of patients and carers and presented these findings separately 29–35 and eight studies focused solely on the carers’ experiences and perspectives. 36–43 Caregiver burden was assessed for the first time.…”

Section: Resultsmentioning

confidence: 99%

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Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers

Sherborne,

Ejegi-Memeh,

Tod

et al. 2024

BMJ Open

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ObjectivesMesothelioma is an aggressive cancer predominantly affecting the lung and abdominal linings. It can have a unique impact on mental health and well-being (MHWB) due to its incurability, poor prognosis and asbestos-exposure causation. This review’s aims were to identify/synthesise international evidence on mesothelioma’s MHWB impacts; explore MHWB interventions used by patients and carers; and identify evidence of their effectiveness.DesignSystematic review.Data sourcesDatabases, searched March 2022 and March 2024, were MEDLINE; CINAHL; PsycINFO; Cochrane Library; ASSIA.Eligibility criteriaWe included study designs focusing on psychological impacts of living with mesothelioma and MHWB interventions used by patients and informal carers, published in English since January 2002.Data extraction and synthesisA team of reviewers screened included studies using standardised methods. Quality was assessed using validated tools: Mixed-Methods Appraisal tool for primary research and Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews.ResultsForty-eight studies met the inclusion criteria: 20 qualitative, 16 quantitative, nine reviews, two mixed-methods, one combined systematic review/qualitative study. UK studies predominated. Many MHWB impacts were reported, including traumatic stress, depression, anxiety and guilt. These were influenced by mesothelioma’s causation, communication issues and carer-patient relational interactions. Participants used wide-ranging MHWB interventions, including religious/spiritual practice; talking to mental-health professionals; meaning-making. Some strategies were presented as unhelpful, for example, denial. Participants reported lack of access to support.ConclusionsMost qualitative studies were rated high quality. The quality of the quantitative studies and reviews varied. The sparse literature regarding MHWB in mesothelioma means more research is needed into impacts on patients and carers, including trauma. To enable access to evidence-based support, research is recommended concerning MHWB interventions’ effectiveness in mesothelioma.PROSPERO registration numberCRD42022302187.

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Section: Resultsmentioning

confidence: 99%

“…The literature on the psychosocial side of mesothelioma is very sparse. 8 We decided to include review articles in our searches as this can provide desirable breadth. 10 We hoped to glean further insights from reviewers’ presentations of data, for example, Lond et al ’s 6 novel use of the term ‘complex trauma’.…”

Section: Methodsmentioning

confidence: 99%

Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers

Sherborne,

Ejegi-Memeh,

Tod

et al. 2024

BMJ Open

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“…A cancer diagnosis, as well as the subsequent phases of the disease and its treatment, can be a source of intense stress both for the patient and the family as they face the challenge of uncertainty, treatment routines, and the threat of treatment failure [ 46 ]. Poor prognosis for patients with MPM and lack of treatment options may cause ever-increasing emotional challenges for the patient; many MPM patients and caregivers indicate their psychosocial care needs are not being met [ 47 ]. Harrison et al showed caregivers receiving a referral to a specialist palliative care team were significantly more satisfied than those that did not, particularly because of the emotional support provided by these services [ 48 ].…”

Section: Discussionmentioning

confidence: 99%

Caregivers of patients with malignant pleural mesothelioma: who provides care, what care do they provide and what burden do they experience?

et al. 2023

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Purpose There are limited data on the impact of caregiving for patients with malignant pleural mesothelioma (MPM) on the caregiver. We aimed to identify the demographic characteristics of these caregivers, the caregiving activities they perform and how caregiving burden impacts their work productivity and overall activity. Methods This cross-sectional study collected data from caregivers of patients with MPM across France, Italy, Spain and the United Kingdom January-June 2019. Caregiver demographics, daily caregiving tasks and the impact of caregiving on physical health was collected via questionnaire. The Zarit Burden Interview (ZBI) was used to assess caregiver burden and the Work Productivity and Activity Impairment questionnaire (WPAI) assessed impairment at work and during daily activities. Analyses were descriptive. Results Overall, 291 caregivers provided data. Caregivers were mostly female (83%), living with the patient (82%) and their partner/spouse (71%). Caregivers provided over five hours of daily emotional/physical support to patients. ZBI scores indicated 74% of caregivers were at risk of developing depression. Employed caregivers had missed 12% of work in the past seven days, with considerable presenteeism (25%) and overall work impairment (33%) observed. Overall, the mean activity impairment was 40%. Conclusion Caregivers provide essential care for those with MPM. We show caregiving for patients with MPM involves a range of burdensome tasks that impact caregivers’ emotional health and work reflected in ZBI and WPAI scores. Innovations in the management of MPM must account for how caregivers may be impacted and can be supported to carry out this important role.

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“…This was informed by a literature review and the team's previous research experience. Reviews of the literature have recently highlighted the depression, anxiety and distress experienced by patients with a mesothelioma diagnosis and their informal carers (Breen et al, 2022;Ejegi-Memeh et al, 2022;Sherborne et al, 2020). The devastation and shock often experienced from receiving this diagnosis have been emphasised (Lond et al, 2022;Taylor et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

67 The mental health and well-being implications of a mesothelioma diagnosis: a mixed methods study

Ejegi-Memeh,

Sherborne,

Wood

et al. 2024

Lung Cancer

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Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs

Cited by 9 publications

References 66 publications

Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers

Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers

Caregivers of patients with malignant pleural mesothelioma: who provides care, what care do they provide and what burden do they experience?

67 The mental health and well-being implications of a mesothelioma diagnosis: a mixed methods study

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