Alpa Thakar is a Community Engagement Office at St Giles Hospice (SGH), working primarily in Walsall which has a diverse population. Her remit includes raising awareness of hospice care through sharing and exchanging information with local communities, and her recent involvement with a South Asian women’s discussion group identified a keen desire to open up a dialogue on death, dying and bereavement.
Since 2011, St Giles Hospice has been delivering hospice care in Walsall through a 12 bedded inpatient unit. Data showed that patients from certain groups with the local community have not accessed hospice care. Since her appointment in October 2017 Alpa wanted to explore how a community engagement and conversational approach could develop links and build connections with local community groups.
Following an introduction from a contact in the community Alpa began engaging with a group of women aged between 40 and 90, mainly of South Asian origin (India, Pakistan and Bangladesh), who met on a weekly basis in Walsall.
The group was originally established in March 2018 to bring women together from different generations for health and wellbeing activities, with the objective of reducing social isolation and supporting those living with long term physical and mental health conditions.
Alpa attended the group on an informal basis and learnt through individual conversations that members of the group wanted to know more about the work of the hospice and the role of community engagement.
The hospice team were invited to facilitate two taster sessions for the group who had stated that they had little or no opportunity to discuss matters around death, dying and bereavement within their own families or communities.
Alpa and her colleagues anticipated a small number attending the sessions but were surprised when over 40 people attended each group. At the beginning of each session following a short introduction where everyone was asked if they wished to participate – no one declined. On both occasions, most if not all of the group wanted to engage, with some women confident to share their experiences whilst others listened.
Due to the range of languages spoken the women within the group translated where necessary, enabling them to own the session and empowering them to support each other. This led to different cultures applauding and supporting each other and it was evident that through developing a shared understanding of experiences their connections with one another became stronger.
During the conversations the women were asked to pick a Grave Talk Card which the group then discussed. One woman then shared her first-hand experience of St Giles Hospice of when her father was dying. This proved to be instrumental in vividly illustrating the impact and value of hospice care; as a voice from within the community it had a greater impact on the group than words from a professional might have had.
The value of conversation
A number of key issues were discussed during the conversations:
Firstly, the apparent confusion around the differences between hospice and hospital care and how this lack of clarity may be a factor in stopping people accessing hospice care.
Secondly, how within Western culture there is an assumption that a stereotypical South Asian family includes intergenerational living, with younger family members acting as a support network for older family members including those at the end of life. The stereotype of families looking after their own can also be a barrier to accessing hospice care.
From conversations within the group it became clear that many of the women live without that support network as children have moved away leaving some group members isolated by language. Some of the women lived alone due to bereavement whilst others lived in residential homes and had little or no interaction with anyone.
The conversations around death, dying and bereavement covered a wide spectrum with women sharing their experiences openly and honestly.
There was a clear appetite from the group to continue beyond the taster sessions and explore the issues further. One woman said, “It can be sad but we need to talk about this, as it’s something which will happen to all of us”.
SGH Community Engagement Team now plan to continue to meet with the group monthly to have conversations about death and dying as well as discussions around advance care planning and end of life choices.
These taster sessions have demonstrated the value of a conversational community engagement approach to raise awareness of hospices and end of life support across local communities, without allowing stereotypes to dictate conversations or activities.
People need to know about the services available so that they can make informed choices when making decisions about their own life and death. Although death and bereavement can be difficult to talk about, the group readily engaged with the team and each other, sharing and exchanging their experiences whilst listening and respecting each other. It has started the dialogue around death, dying and bereavement.
“You may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them” (from ‘Being mortal: illness, medicine and what matters in the end’ by Atul Gawande, 2015).
In undertaking this piece of work St Giles Hospice were supported by Sadat Hussain, Co-ordinator of the Womens Intergenerational group & Walsall BME Advice Centre, and Naheed Razzaq, Outreach Support Officer – Walsall Palliative Care Centre, and a wonderful group of volunteers who help out with refreshments.
Alpa wishes to thank all the women from the group who actively engaged with SGH to start the conversations around death, dying and bereavement.
For further information please contact Alpa Thakar