We are here for a good time not a long time: Being and caring for a child with a life-limiting condition

This research project sets out to explore the lived experience of Being and caring for a
child with a Life Limiting Condition. This research uses van Manen’s (1990)
conceptualisation of hermeneutic phenomenology that is both a research methodology
and a method. The first empirical work is a preliminary study using focus groups with
professionals. The findings of this work acts as a backdrop to the further two studies that
involve interviewing, in-depth, twenty eight parents and five children. The second study
details the parents’ lived experiences and the final study looks at five parent-child dyads
and their combined lifeworlds. In keeping with the phenomenological methodology, data
was analysed using Template Analysis (King, 2004).

It is a rare opportunity to observe and speak with children with Life Limiting Conditions
and so gain insight into their lives. Their vulnerability is often characterised by rare and
difficult-to-diagnose conditions, significantly shortened life spans with compromised
quality of life. For the participants, the experience of Life Limiting illness was not only
personal, but was also transactional, communicative and profoundly social. The challenge
is one of Being thrown into an abnormal unready world which compels one to consider
the paradoxical temporality of the here and now. This brings recognition of being the
same as others in a lived space, but also being different in a fundamental way that has a
significant impact. The challenge is met by adapting to the environment to find new ways
of Being.

This research encourages readers to thoughtfully reflect on what is it like for these
families and those involved in their care, and to consider practice improvements that
address the triadic experience (of child, parent and professional). The full significance of
such reflection will ideally promote further questioning and inquiry, in keeping with the
always provisional nature of phenomenological inquiry.