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

Rodriguez, Alison (2009) We are here for a good time not a long time: Being and caring for a child with a life-limiting condition. Doctoral thesis, University of Huddersfield.

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    Abstract

    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.

    Item Type: Thesis (Doctoral)
    Subjects: R Medicine > RJ Pediatrics
    R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
    Schools: School of Human and Health Sciences
    School of Human and Health Sciences > Centre for Applied Psychological Research
    Depositing User: Pat Whitworth
    Date Deposited: 16 Feb 2010 12:01
    Last Modified: 22 Dec 2010 13:31
    URI: http://eprints.hud.ac.uk/id/eprint/6963

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