Sharing the care: the key-working experiences of professionals and the parents of life-limited children.
OBJECTIVE
To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC).


METHODS
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.


RESULTS
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.
Senior Lecturer in Psychology, University of Huddersfield, Ramsden Building, Queensgate, Huddersfield, West Yorkshire, HD1 3DH, England.
Alison
A
Rodriguez
Professor in Applied Psychology and Director of the Centre for Applied Psychological Research, Department of Behavioural and Social Sciences, University of Huddersfield, Ramsden Building, Queensgate, Huddersfield, West Yorkshire, HD1 3DH, England.
Nigel
N
King
D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D005260:Female; D017144:Focus Groups; D006282:Health Personnel / Q000523:psychology; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010347:Patient Care Planning / Q000458:organization & administration*; D011368:Professional-Family Relations; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000458:organization & administration* / Q000523:psychology*; D006113:United Kingdom