title: Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: a qualitative study.
abstract: BACKGROUND
  Transition to adult services and adulthood is now a prospect for young people with life-limiting conditions requiring palliative care. Little is known about their transition experiences or how children's hospices can support a young adult population during/following transition.
  
  
  OBJECTIVE
  (1) To examine how young people with life-limiting conditions and their parents experience transition. (2) To identify families' and hospice staff's perceptions of family support needs during transition. (3) To identify the implications for children's hospices.
  
  
  METHODS
  Qualitative study using in-depth, semi-structured interviews. Analysis used a grounded theory approach.
  
  
  METHODS
  A total of 39 participants recruited from one children's hospice in the United Kingdom.
  
  
  RESULTS
  Transition planning was absent or poorly coordinated; for most families, there were no equivalent adult health/social services. Consequently, it was a time of uncertainty and anxiety for families. Moving to a young adult unit was a positive experience for young people as the building/support model recognised their adult status. However, they had unmet needs for emotional support and accessing information/services to realise their aspirations. Parents had unmet emotional needs and were unclear of support available once their children reached adulthood. Staff identified training needs in relation to working with adults, providing emotional support and acting as an advocate/key worker.
  
  
  CONCLUSIONS
  Providing an appropriate building is only one aspect of developing support for young adults. A different model of support is needed, one which promotes young people's independence and provides emotional support while continuing to support parents and siblings. Hospices could play a role in transition support and coordination.
authors.affiliation: School of Nursing Midwifery and Social Work, University of Manchester, Manchester, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Kirk
authors.forename: Claire
authors.initials: C
authors.lastname: Fraser
mesh_terms: D000293:Adolescent; D016497:Adolescent Health Services / Q000458:organization & administration*; D000328:Adult; D001291:Attitude of Health Personnel; D005190:Family / Q000523:psychology; D005260:Female; D006301:Health Services Needs and Demand; D017051:Hospice Care / Q000458:organization & administration*; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000458:organization & administration*; D017060:Patient Satisfaction; D011369:Professional-Patient Relations; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care / Q000458:organization & administration*; D006113:United Kingdom; D055815:Young Adult
keywords: Palliative care; adolescent; hospices; transition to adult services; young adults