SOCH: South Asian Opinions and Care needs: Helping people to think about their future care wishes
Funded by NHS England, this project began in November 2019 and was completed in December 2020.
Role: Co-researcher
Background:
It is recognised that the ability to offer the opportunity for personalised care and support planning is significantly more challenging for people whose first language is not English. In Wolverhampton, local advance care planning documents are in place -“Me” and “My Care” but are currently only available in English. Following on from the CCUES project, funding was received from NHS England to promote advanced care planning amongst the South Asian community. The aim of this project is therefore to improve South Asian people’s access to personalised/advance care planning discussions and raise awareness in this community.
Design:
Following the guidance of an expert advisory group, this project produced a short awareness film (see below) specifically targeted at the South Asian community. This short film has now been completed and small scale evaluation has taken place prior to becoming publicly available
An on-line survey was developed and circulated in confidence amongst the Expert Advisory Group for this project consisting of representatives from: Compton Care, Wolverhampton City Council, NHS Wolverhampton CCG, University of Wolverhampton, Healthwatch, BME United, The Open University, and members of the South Asian community with an active role such as a Gulshan (Wolverhampton’s Asian) radio presenter and local group facilitators. We also asked members of local networks to complete the survey which consisted of health care workers, educators, and lay members. Participants were invited to watch the film via a private link and then to complete the on-line survey. Participants stated their age, ethnicity and occupation to help us make comparisons in the responses received.
Results:
A total of 18 participants completed the survey and reported that the short awareness film improves people’s understanding of Advance Care Planning; provides clarity on where to go to complete an Advance Care Plan and; will encourage people to document their future wishes. They also noted the best place/platforms to advertise the short film.
It was felt that the short film reaches out to people on a ‘human level’ with ‘real life stories and cases that felt real and connected.’ It was also described as ‘thought provoking, compassionate, and serious and balanced with gentle humour.’ The light hearted nature of the film was important to people as it was felt that ‘the film was beautifully done, with humour, respect and honesty.’ Furthermore, ‘it involves people from all walks of life and someone they can all relate to and plants “the seed” of planning ahead!’
Next Steps:
It is intended that an on-going evaluation will be conducted to capture the films impact. Furthermore, Compton Care are going to introduce and test the translated ‘My Care and Me’ ACP documents and are working in partnership with Royal Wolverhampton Trust to engage South Asian patients who have been diagnosed with Chronic Kidney Disease and have decided to take the conservative route for treatment. They will develop a 2-day pilot education programme which will help to introduce the ACP documents and highlight the importance of conversations with loved ones. The programme will provide participants the opportunity to gain an improved understanding of how to document their wishes relating to their end of life care and also discussions on what is important for their wellbeing, funeral planning and putting their personal affairs in order.