In a category where each finalist would have made a deserving winner, Demelza Hospice Care for Children claimed the prize for incorporating creative arts into the very core of its service delivery. The hospice was praised for its authenticity, passion and willingness to share its methods and learning outcomes with other sector organisations.
Continuing in a series of features celebrating 2020’s winners, we caught up with Victoria Swan, Senior Music Therapist at Demelza Hospice Care for Children, who explores the crucial role that creative arts play in supporting children and their families in palliative care.
Preserving family life
At Demelza, our driving factors have always been, and will always be, the crucial importance in managing quality of life in babies, children and young people with serious or terminal conditions, and those who love them. We use creative arts to embrace the fun, the sad, the silly and the precious, unforgettable moments of family life, intertwining the arts amongst regular care service provision in every way possible.
Worry and uncertainty contribute immensely to parental stress in children’s palliative care. Besides not knowing with any certainty what will happen to their child, families have to deal with a huge lack of intimacy when resident in a medical setting, having very few private moments with their child. Creative arts offer a private space to reflect and to simply ‘be with’ their child to play, sing, dance, make art and tell stories. Families can bond through the arts because they offer a shared, playful experience which, in stark contrast to their everyday life, is not about the next medical procedure.
It can be very easy to forget the importance of play when a child has medical needs, so it is crucial for families to see their child actively engaged in play, and creative arts at Demelza offer something unique in this way. We spend time together with families to set aside the medical procedures and worries, and just play, relax and create positive memories. Creative arts therapies can also provide an emotional release and support children, young people and their families undergoing extreme stress and trauma, allowing them to express feelings in a safe way.
To assist in countering some of the increased anxiety in young people around surgeries and hospital admissions, especially during a pandemic, we have been able to provide virtual creative arts therapy sessions for young people during hospital stays. Music Therapists have joined families virtually at the bedside of children in intensive care units to play calming music. Art Therapists have also joined young people as they nervously await major surgery, reducing anxiety pre- and post-op.
Versatile and dependable workforce
We pride ourselves in having a dedicated Creative Arts Therapy Team that provides individual, family and group sessions. Music and art therapy use creative experiences to target specific therapeutic outcomes. At the hospice sites in Kent and South East London, there are dedicated music and art rooms, where feelings that are often too difficult to put into words are played out or drawn.
Family Liaison Practitioners use arts and crafts in their weekly virtual support groups run for siblings, to promote social opportunities and reduce feelings of isolation often felt by siblings of children with a serious or terminal condition. They have taken great delight in sharing their stories through writing, pictures and puppets and have created their own Show and Tell times to celebrate their works of art.
As well as the expert medical care the children receive you will often find the Care Team dancing in full PPE with the children, making hand and footprints and creating lasting memories. Creative arts are used as part of the end of life care Demelza provides, which can include families singing together to their dying child accompanied by a Music Therapist, or a creation of beautiful hand and foot castings. Demelza Health Care Assistants run Little Dots, a pre-school group, which supports parents and carers and is great fun for the children, involving inclusive songs and stories.
Accessible and inclusive services
We have a Facebook page for families and an information email, which includes a weekly virtual support timetable that we ran throughout lockdown and continue to run for children who are unable to safely access their communities. Our group sessions are open to all who access Demelza’s services and families are invited to attend when they wish. For some, this means they attend several groups every week, and others may only attend at times of heightened anxiety or when they need additional support. Others may not want to join groups, so videos have been made to help raise confidence with crafting, relaxing story telling or age-appropriate songs and music.
For more formalised creative arts therapies, families can self-refer for therapeutic support via our website, a dedicated email and our Family Support Helpline which runs Monday to Friday, 10.00am to 4.00pm. We receive referrals from hospitals, Social Workers and schools – essentially, anybody who recognises an unmet need.
Creative arts therapies can be a space to hold difficult emotional states, enabling them to begin to be processed. Acknowledging fear and feelings surrounding the potential death of a child is often immensely difficult for people of all ages and it can be a challenge to talk about. Creative Arts Therapists at Demelza support people to acknowledge these feelings and to express them in a creative way within a nurturing environment. Demelza offers specialist creative arts therapy sessions six days a week, through digital platforms into family homes, schools, hospitals and at our hospice sites.
For those with disabilities that significantly affect their ability to communicate and be independent, Demelza created music sensory bags, which are sent to families. Each bag has an accompanying digital playlist of songs. This music was composed and recorded for Demelza by an honorary Musician in Residence. Each song has an accompanying sensory item which is provided in the bag and includes greaseproof paper for crunchy leaves in the autumn bag, knitted seaweed (knitted by our volunteers) for the summer bag, a red feather to represent a robin in the winter bag, and rainbow ribbons in the spring bag.
Creative arts are a part of the family journey; even after a child has died. When accessing end of life care, we support families to compose songs, record music to play at a child’s funeral or memorial service and support with a playlist to be played to the child whilst in Demelza’s Bereavement Suite. At a parent’s request, a Music Therapist sang and gently played the guitar next to a dead infant in a moses basket, as the parents’ culture believed that the baby’s spirit should depart with music.
Reacting positively to change
Until last year, the creative services at Demelza were delivered primarily within the hospice setting or in the family home. COVID-19 changed all that, and in the chaos and uncertainty of lockdowns and shielding, the teams worked tirelessly to adapt rapidly and continue working closely with families. Virtual music therapy groups, one-to-one music therapy, sibling support groups, Little Dots groups for pre-schoolers, art therapy groups and one-to-one art therapy were all delivered virtually to children and families.
We have been challenged to consider the wider home environments and incorporate every day household objects and materials to provide stimulating, creative, fun and inclusive experiences. Our Family Support Team has been able to secure funding for families that haven’t had access to iPads, so they can access therapy sessions through digital platforms. Through our dedication to rigorous COVID-19 procedures, our Creative Arts Therapists were able to offer their service face-to-face for children receiving
end of life care.
Holding on to hope
In the first virtual music group of May 2020, children excitedly recognised each other in a Zoom session and spent several minutes laughing and pulling faces on screen, having not seen each other for several weeks because of lockdown, allowing connections to be made that had been absent for many. Creative arts at Demelza give space for laughter and tears.
It’s about being in that moment. Creative sessions have enabled families to hear their child sing for the first time or become relaxed after a traumatic seizure or give direct eye contact and engage. The improvised music in sessions follows breathing patterns and tiny body movements. In this way, the creative sessions are empowering and focus on what children can do rather than what they are unable to do.
We will continue to use the arts in our hospice care to provide a beacon of hope in what can be at times a deeply sad setting. Creative arts are embedded into the everyday care and support Demelza gives to families who have a child with a serious or terminal condition, and we will continue to use the flexibility and power of the creative arts to hold and acknowledge difficult feelings, to facilitate positive change
and develop emotional growth.