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Sharing the care: The key working experiences of professionals and parents of life limited children.

Rodriguez, Alison and King, Nigel (2014) Sharing the care: The key working experiences of professionals and parents of life limited children. International Journal of Palliative Nursing, 20 (4). pp. 165-171. ISSN 1357-6321

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Aims: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC).
Method: Using van Manen’s conceptualisation of hermeneutic phenomenology, three focus groups
were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs.
Findings: Parents’ expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift
personas to respond to different contexts. Conclusions: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into
the family ‘team’ arrangements.
Key words: Children l Life-limiting conditions l Key-working l Family-centred care l Care planning l Qualitative

Item Type: Article
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > RT Nursing
Schools: School of Human and Health Sciences
School of Human and Health Sciences > Centre for Applied Psychological Research
Related URLs:
Depositing User: Alison Rodriguez
Date Deposited: 26 Jun 2014 14:30
Last Modified: 28 Aug 2021 19:07


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