• Madeleine Harrison, Clare Gardiner, Bethany Taylor, Stephanie Ejegi-Memeh, and Liz Darlison.
• Division of Nursing and Midwifery, Health Sciences School, University of Sheffield, Sheffield, UK.
• Palliat Med. 2021 Jun 1; 35 (6): 103910511039-1051.

BackgroundPeople with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness.AimTo describe the palliative care needs and experiences of people with mesothelioma and their family carers.DesignIntegrative systematic review with narrative synthesis (PROSPERO: CRD42020190115).Data SourcesMEDLINE, 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.ResultsThe 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.ConclusionThe 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.

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