When a child is diagnosed with a life-limiting or life-threatening condition, a family can feel very isolated. Their lives change completely and it can be a very lonely journey through the darkness of the nights when they are caring for their loved ones.
When there is a language barrier and parents cannot understand what the professionals are saying, this adds to the feelings of isolation and frustration.
Additionally, families may not know what a hospice is, and so may be reluctant to use the hospice’s services.
For the past 26 years I have played a two-fold role in service development and family support to ensure that Acorns provides for the cultural needs of Asian children and their families. I also support staff at Acorns’ hospices in Birmingham, Walsall and Worcester.
Part of my work involves contributing to Acorns’ policy and services to ensure they cater for the specific needs of Asian families. For example, I advise on dietary needs, make sure that families receive support and information in their own language and that translation services are available. I also ensure that religious needs are met at all times.
I believe that families should feel comfortable and welcomed at Acorns and look upon it as a home-from-home.
An important and fulfilling part of my job has been establishing the Asian Mothers’ Support Group.
The support group was established in 1992 in order to bring together mothers who may share things in common but who would not normally meet, as they may come to Acorns at different times.
The aim is for mothers of children with life-limiting or life-threatening conditions, and mothers who have been bereaved, to meet in a safe and supportive environment where they can talk about their situation and share information and support each other.
The group has also played an important role in shaping Acorns’ services for ethnic communities. The women have offered ideas and suggestions that have been taken up by Acorns and helped improve services for other Asian families.
I love meeting with the mothers, sharing their stories and supporting them in whatever way I can. After 21 years, we are still going strong with new mothers joining the group and supporting each other.
You are not alone
Last year the mothers in the group decided to try and capture some of their experiences and from this project a book entitled ‘You are not alone’ was published.
The book captures the ‘lived experiences’ of those in the group. For many mothers, hearing others’ stories has helped and supported them. This book was designed to share those stories and personal reflections and it is hoped that other parents not part of the group can also gain support.
Stories are representative of the group and include reflections from mothers whose child or children are currently using hospice support in addition to stories from mothers receiving bereavement support. A large proportion of mothers within the group have had more than one child with the same condition and experienced multiple losses as a consequence.
Many mothers spoke of the challenges of caring for their child whilst also managing the many tasks expected of them. So, in addition, quick, easy, nutritious, ‘tried and tested’ recipes have been shared by the mothers and are included in the book.
This book is a testament to the resourcefulness of our Asian mothers and I am extremely grateful to each of them. All donations received from the book are given to Acorns Children’s Hospice.
Copies of the book are available for a minimum donation of £5 (plus p&p) and can be obtained by contacting me on 0121 248 4850 or hardev.notta@acorns.org.uk
We also have other cultural publications to help staff working in the care sector:
- Religious practices wallchart – end of life care Sikh/Hindu/Muslims
- Welcome poster in 17 languages (A3 size)
- Cultural customs and religious practices guidance booklet for Sikh/Hindu/Muslim families
If anyone would like any support or advice about providing a culturally sensitive service to Asian families within their organisations then I would be happy to assist.
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