Conference Proceedings - School of Nursing & Midwifery - Trinity ...

School of Nursing & Midwifery, Trinity College Dublin: 8 th Annual Interdisciplinary Research Conference
Transforming Healthcare Through Research, Education & Technology: 7 th – 9 th November 2007
Conference Proceedings
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Caring in three worlds- What mothers say it’s like to care for
a child with complex needs.
Presented by
Honor Nicholl, MEd, BSc. RSCN,RGN,RCNT,RNT
School of Nursing and Midwifery,
Trinity College Dublin
Tel 003531-8963702
Email nichollh@tcd.ie
The focus of this presentation is on the outcomes from a qualitative
phenomenological study, undertaken in Ireland in which mothers’
experiences of caring for children with complex needs were
explored.
The aim of this Doctoral work was explore mothers’ experiences of
caring for children with a diverse range of complex needs at a time
when service delivery in community, respite and palliative care is
under review and development.
Using a hermeneutic phenomenological approach, based on the
approaches of Heidegger and Gadamer, data was collected by
multiple interviews and diary recordings from a group of seventeen
mothers. The mothers had children who had had rare, congenital
and genetic disorders, some of which were progressive and life-
limiting. Data were analysed using manual coding and using an
adaptation of Koch’s (1995) and Smith’s (1997) models of analysis
and NVivo for data management
Mothers in this study provided care for their children in three
worlds; an inside world of the home, an outside world and a going
between world. In each of these worlds the mother was involved in
highly technical care giving in an unstable world where support may
be limited. The mothers’ ‘knowingness’ and the ‘unknowingness’ of
others impacted on the mothers’ experiences. Experiences are
bounded by constant observation and constant connectedness.
Constant communication is also part of this experience. Technical
care-giving is one dimension of many of the mothers experiences
and involves the delivery of highly technical care and pre-emptive
care in each of these three worlds.
Mothers were involved in a no choice situation in providing care in
an unstable situation in which the children require individualised
and technical care. Paperwork and administration add significantly
to the complexity of caring.
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