Involving Children in Palliative Care Research

Aims: In conducting research with children with life-limiting conditions, there has been reliance on the notion of competence. Different researchers have afforded different views and experiences of capacity. The current paper reports on our own experiences of involving children in palliative care research. We aimed to explore the lived experiences of children with life-limiting conditions and debate the associated developmental, ethical and methodological challenges.
Methods: Children with life-limiting conditions were involved in the study. To a degree, we ignored chronological age in our research design and instead considered how each child was able to communicate and show appreciation of their life circumstances. An interpretive phenomenological method was used, as this was viewed the most suitable for exploring the lived experiences (and total views) of children.
Results: All participants, including a child of just five years of age were very aware of their difference and of their illness and potential outcomes. Our research questions afforded us flexibility and assisted us in achieving a depth of response around living with life-limiting illness. Our questioning routes were exploratory in nature but we were also open to deviate in response to the questioning or actions of the children.
Conclusions: A ‘one rule fits all’ attitude does not work when considering the developmental capabilities and competencies of children with life limiting conditions and their ability to participate in research. Patterns of understanding in children are fluid; individual experiences, environment, intellectual capacities, emotional profiles, ethnic, cultural and religious backgrounds - all contribute to how and when a child comes to understand the meanings of their illness. In general, what developmental theories and policies that have grown out of them, fail to acknowledge, is the impact of life events on development, including life-limiting illness itself.