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

By Alison Rodriguez

Abstract

This research project sets out to explore the lived experience of Being and caring for a\ud child with a Life Limiting Condition. This research uses van Manen’s (1990)\ud conceptualisation of hermeneutic phenomenology that is both a research methodology\ud and a method. The first empirical work is a preliminary study using focus groups with\ud professionals. The findings of this work acts as a backdrop to the further two studies that\ud involve interviewing, in-depth, twenty eight parents and five children. The second study\ud details the parents’ lived experiences and the final study looks at five parent-child dyads\ud and their combined lifeworlds. In keeping with the phenomenological methodology, data\ud was analysed using Template Analysis (King, 2004).\ud \ud \ud It is a rare opportunity to observe and speak with children with Life Limiting Conditions\ud and so gain insight into their lives. Their vulnerability is often characterised by rare and\ud difficult-to-diagnose conditions, significantly shortened life spans with compromised\ud quality of life. For the participants, the experience of Life Limiting illness was not only\ud personal, but was also transactional, communicative and profoundly social. The challenge\ud is one of Being thrown into an abnormal unready world which compels one to consider\ud the paradoxical temporality of the here and now. This brings recognition of being the\ud same as others in a lived space, but also being different in a fundamental way that has a\ud significant impact. The challenge is met by adapting to the environment to find new ways\ud of Being.\ud \ud \ud This research encourages readers to thoughtfully reflect on what is it like for these\ud families and those involved in their care, and to consider practice improvements that\ud address the triadic experience (of child, parent and professional). The full significance of\ud such reflection will ideally promote further questioning and inquiry, in keeping with the\ud always provisional nature of phenomenological inquiry

Topics: RJ, RJ101
OAI identifier: oai:eprints.hud.ac.uk:6963

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Citations

  1. Centre for Evidence Based Health Care. The University of Huddersfield, Harold Wilson Building, Queensgate, Huddersfield HD1 3DH. APPENDIX SIX: Parent and child interview schedules. Interview Schedule for Parent(s)
  2. Could you tell me a little about what has been happening?
  3. Do you always feel in control of your emotions?
  4. (1995). If you were having arguments with your friends, what might you do? What other troubles do you have with school or your family or friends? Possible coping strategies could include Taken from Spirito et al
  5. Location of interview …………………. Socio-demographic details.
  6. Occupation of parent(s) …………/………. doi
  7. Outline faces displaying various emotions will be used to stimulate a listing and brief discussion of key emotions and situations that give or have given rise to them.
  8. Participant identification number ………………… doi
  9. Sex of child/children ………../……….. doi
  10. the children will be asked to turn over sentence completion cards which will ask about intense feelings. Common problems, e.g. school,
  11. think you get enough support? Adjustment/adaptation, personal factors, social-ecological factors
  12. What gets you stressed? Adjustment/adaptation, service evaluation.

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