Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices.

Katherine Knighting, Lucy Bray, J Downing, Andrew Kirkcaldy, TK Mitchell, MR O'Brien, M Pikington, Barbara Jack

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Abstract

To seek views of UK children’s and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND Internationally there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive, and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices’ views and the main challenges faced providing services for young adults. DESIGN Descriptive cross-sectional survey METHODS Children and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015-February 2016. FINDINGS Respondents (N=76 hospices) reported that children’s hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were: a lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
Original languageEnglish
JournalJournal of Advanced Nursing
Early online date6 May 2018
DOIs
Publication statusE-pub ahead of print - 6 May 2018

Keywords

  • Young adults
  • life-limiting conditions
  • palliative care
  • hospice
  • nursing
  • parents
  • family carers
  • transition

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