From coffee shops and leisure centres, to hospitals and homes, many difference places play a valuable role in people’s lives. When we consider families with children with complex needs, children with life-limiting conditions, children with palliative care needs, place becomes vitally important. For many parents caring for the complex needs of their child is a 24/7 responsibility within the home setting. Sometimes this caring responsibility is so challenging that parents begin to consider the need for help and support.
Prior to the coronavirus pandemic lockdown, children’s hospices, while continuing to deliver palliative care and end-of-life services, also provided short-break respite care for families of children with life-limiting conditions. This respite by some hospices has helped bridge a gap in service provision for many families. However for some parents, the idea of entering and accessing services from a children’s hospice is a difficult decision to make.
Dr Helena Dunbar is an Associate Professor at DMU’s Leicester School of Nursing and Midwifery. Her PhD, sponsored by Rainbows Hospice for Children and Young People in the East Midlands, explored how parents perceived a children’s hospice and how they could be influenced to access services. Here, Dr Dunbar takes a closer look at the notion of bonding at a children’s hospice.
Place is a complex phenomenon drawing on ideas of identity, belongingness and attachment. Place identity refers to the bonds that people form or do not form with a place and is achieved as people develop thoughts, feelings, attitudes, memories and behaviours regarding a specific location or space. While abstract knowledge about a place can be acquired quickly, the emotional attachment can take a lot longer to achieve and originates from the notion of whether somewhere is perceived as safe or a threat. If an individual feels as though they belong, they will identify positively with a place. The opposite happens when a person experiences negativity and a sense of not belonging prevails. The need to belong is a powerful motivator for human beings and people deprived of belonging often experience physical health problems, decreased wellbeing, sadness and longing.
Sometimes the image created by the word ‘hospice’ can generate meanings for some parents that make them reluctant to be associated with the hospice. In my study, some parents did not admit they used services there, while others did not use the term ‘hospice’ but chose instead to associate going there with other labels such as, ‘it’s like going to play group’ or ‘Jimmy’s place’. While there was no physical differentiation of space in the hospice, some parents described a dual purpose – two sides: one for respite care and the other for end-of-life care. Many parents recognised that one day they would need support with end-of-life care for their child, however it appeared to be more acceptable to enter the less threatening side first. Yet for some parents who had never used a hospice, the perception that it was a place associated purely with end-of-life remained.
Physical environment will play a role in parents’ perceptions, first impressions will last and affect decision making of whether to stay, go or come back again. Getting families across the threshold of a hospice is the first step to helping them see that their child can be cared for in the way they want them to. My research found that the initial apprehension that parents talked about in using the hospice was dispelled once they had entered and began to realise it was a safe place for their child. As children were cared for by staff with the appropriate knowledge and expertise, staff who tailored care to the needs of the child and family, relationships and trust were built which ultimately ended in the formation of an attachment with the hospice. As views and perception of the hospice as a place changed, and parents interacted with it more, it became somewhere that they wanted to go again and again and in some cases, somewhere they missed when they were not there.
During this pandemic many hospices have continued to support families virtually but the reality is the services that were offered prior to lockdown for many children have been suspended during this period. While the number of children across the UK requiring short breaks is increasing, the provision of these services for families is diminishing. In addition, the pandemic has resulted in many charities losing considerable amounts of income. If hospices are no longer able to provide respite care how will we help parents overcome their concerns about accessing services and truly understand the potential benefits of hospice care? How will staff working in this sector show that a place where many parents initially dreaded entry, can become a place of belonging, a place which they will miss when they no longer have it?
Earlier this year, Dr Helena Dunbar was awarded a Churchill Fellowship by the Winston Churchill Memorial Trust to travel to the Canadian provinces of Quebec, Ontario, Alberta and British Columbia to visit children’s hospitals, children’s hospices and universities to explore how education and practice are linked, and continue her work in understanding the geography of palliative care settings. Unfortunately the pandemic has meant that travel plans have been postponed but Dr Dunbar is hoping to do this later in 2021.
Posted on Wednesday 7 October 2020