People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population which is one of the biggest health inequalities in the UK. People with SMI and terminal illnesses also face multiple barriers, including stigma and prejudice from clinical staff, when accessing palliative and end of life (PEOLC) services. Little is known about the PEOLC needs and expectations of people with SMI and terminal conditions. There has been very limited research conducted which aims to develop improvements to the quality and accessibility of PEOLC for people with SMI.
The aims of this research were; to seek views of patients, and their carers, with severe mental illnesses and terminal conditions on their expectations of care; to co-design the concept and content of a clinical resource to improve care and to contribute to the development of co-design research methodologies.
The co-design process involved two stages of data collection. Initially, eight interviews were carried out, five patients and three carers were interviewed. Interview transcripts were thematically analysed and key themes developed which informed the second stage of the co-design process. Subsequently, three cohorts of participants (32 participants) took part in a series of workshops, using visual and creative methods, including stakeholders from a range of backgrounds; patients, carers, mental health and palliative and end of life care clinical staff. An iterative data analysis process was carried out throughout the rounds of data collection and the content, format and concept for a clinical resource was developed by the co-design participants and researchers.
The interview stage led to the development of four overarching themes: Stigma and Prejudice - ‘See Me, Not My Diagnosis’ Hesitancy and Avoidance – ‘Treading on Eggshells’, Collaborators in Care – ‘The Ignored Experts’ and Connections – ‘Leaning In, Not Stepping Back’.
The workshop findings identified the content and key features of a clinical resource to improve care. Key features included accessibility, interactivity, the use of patient and carer stories, the use of visual methods and the need to challenge attitudes not just provide information. Co-design methods provided a valuable approach to developing the concept and content of a clinical resource which uses visual and creative methods to improve clinician confidence. The creative and visual methods used in the workshops allowed the development of an innovative solution grounded in end user need.
This study offers novel understanding of the views and expectations of patients with SMI and terminal conditions, and those who care for them, on their palliative and end of life care needs. It presents the concept and content for an innovative clinical resource which aims to improve care by building confidence and knowledge in clinical staff from all healthcare settings, particularly PEOLC and mental health. The findings and recommendations are useful for clinicians, patients, carers, commissioners and policy makers.
|Date of Award||Jun 2019|
|Supervisor||Jane Coad (Supervisor), Diane Phimister (Supervisor), Nikki Holliday (Supervisor) & Gillian Ward (Supervisor)|