How do you capture the power of a dream?
Issued from the 7th International Cardiff Conference on Paediatric Palliative Care How do you capture the power of a dream?
How do you capture the power of a dream? An innovative study reports on the impact of dream fulfilment for children with life-limiting conditions
A dream come true for a child with life-limiting illness can have an impact across the whole process of a dream experience and some of the effects may be enduring, according to the results of a new study presented at the 7th International Cardiff Conference on Paediatric Palliative care.
“The study has shown that the effects of a dream are complex”, said PhD researcher Jayne Galinsky, “and include a sense of empowerment and hope for the future, validation of illness, a sense of normalisation and engagement in a world outside of illness and an opportunity for the child and their family to create memories that strengthen family bonds.”
While the inspirational power of a dream come true seems intuitive, few studies have been done and current understanding of the way in which dream or wish fulfilment impacts upon the lives of children and young people with life limiting conditions is based mainly on case studies. The number of children and young people with such conditions in the UK now tops 50,000 and while medical advances continue to improve life expectancy, treatments remain largely supportive. The potential for additional interventions to enhance life experience and wellbeing therefore has increasing importance
This study, a collaborative research project between the University of Stirling and children’s charity Dreams Come True, aimed to explore the impacts of dream fulfilment as a potential intervention in the holistic care of children with life limiting conditions and to inform the work of charities in this arena. The Stirling team, headed by Dr Liz Forbat, Reader and Co-Director of the Cancer Care Research Centre within the School of Health Sciences, has considerable experience of studying this population of life-limited children but with so little known about the nature and impact of dream fulfilment, selecting the optimal methodology for this early exploratory work was critical.
To respond to the challenge, the researchers chose a grounded theory methodology to generate theory grounded in the data of real life experiences - in this instance, collected from semi-structured in-depth interviews which were modified as themes emerged. Conclusions are based on a total of 62 interviews with children and family members drawn from a cohort of families who had been recipients of a dream with the Dreams Come True charity.
From the outset of the dream process, acceptance of their application provided validation for a child and their family that the child’s condition had been recognised and taken seriously. This was particularly apparent for those children with non-cancer diagnoses. At this stage the selection of their dream also gave children a sense of empowerment and this sense of agency and control, often lacking in these children’s lives, extended through the planning phases. Here the anticipation of the dream also provided distraction and a focus for a positive conceptualisation of the future.
With respect to the dream itself, families sharing dream experiences, such as dream holidays where several families travel together, described a sense of normalisation and a decentralisation of the role of the illness in their lives. The dream also provided a framework for the creation of memories that became important as a source of comfort for those families who were subsequently bereaved and, through retelling, provided an ongoing sense of validation for surviving children.
“It seems that dream fulfilment provides something outside of their normal experience that is a point of punctuation in these families’ lives. The dream becomes a significant milestone around which memories are curated and positive experiences can be reinforced” said Jayne Galinsky.
One negative impact that emerged from this study was the post dream ‘blues’ that arose for some families in the weeks following the completion of a dream, an effect that mirrors experiences reported by families following discharge from statutory services. A better understanding of this effect is clearly valuable for charities to understand how to optimise the dream process and perhaps find ways that the positive impacts of a dream may be carried over and reinforced. In this instance, the charity is considering extending the support process through an online patient forum for families to share experiences and peer support.
These are early indicators, but the researchers hope that the findings of this study may inform further work to tease out and quantify the impact of dream fulfilment . The results not only have implications for the supportive care of these families but also highlight the role that third sector interventions may play in enriching the lives of these children.
The importance of both medical cure and multidisciplinary care in the support of life-limited children was a key theme of the conference. Commenting on the study, conference Chair Richard Hain said: “We really need effective psychosocial supportive measures in children's palliative care, and however difficult it is to do research in this field, we also need good studies to evaluate whether such interventions make a real impact on outcomes for the child and their family. This is work that tries to answer that question, and not only in palliative care - it may have relevance to evaluating the impact of psychosocial interventions in other areas too.”