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Highlights from a UK Survey of Children and Adult Hospice Provision for Young Adults with Life-Limiting Conditions

Author: Dr Katherine Knighting, Senior Research Fellow, Edge Hill University
31 May 2017

Dr Katherine Knighting reports on a survey study conducted by a team from Edge Hill University with children and adult hospices in the UK.

The study explored current and planned provision for young adults with life-limiting conditions (LLCs), and the main challenges experienced in supporting the short break and respite care needs of this population. 

It is estimated that there are over 55,000 young adults, aged 18-40 years old, with complex needs or LLCs across England, which continues to rise.[1] 

There has also been growing evidence that the poor continuity of care for this population after transition to adult services, including the lack of short break or respite care, can lead to unmet needs for the young adult and their family, ultimately resulting in carer burnout for families and deterioration in the young adult’s health.[2-3]

Whilst conducting an evaluation for a children’s hospice in 2014 we were hearing real concerns from young adults and their parents about what short break and respite care provision would be available to them once the young adult could no longer go to the children’s hospice. 

At the same time we were hearing, through the Together for Short Lives transition taskforce groups, about work by children and adult hospices in some areas of the UK to fill the gaps by extending their services or developing collaborations. 

However hospices were also talking about challenges, including how to plan and fund an age-appropriate service when the population numbers in regions are small, sometimes spread out across large geographical areas and limited funding is available to support the needed service developments. 

It was also being questioned, by some providers and families, whether adult hospices were the right place to provide respite care to this young adult population who have some very different psychosocial and health needs compared to older adults who typically use adult hospices. 

We decided to start exploring this area by looking at what both children and adult hospice services were doing.  

We worked with young adults, parents and service providers to develop surveys for children and adult hospices to explore their current provision, the main challenges experienced and the perceived need for future respite care provision. 

With the support of Together for Short Lives and Hospice UK we put out an online survey to children and adult hospices in the UK which was open between October 2015 and February 2016. 

In total 76 hospices took part; 13 children’s hospices and 63 adult hospices. Respondents were from three roles: chief executives/directors, managers or heads of services, or transition-specific roles. 

Our results indicated some clear gaps in provision. The upper age limit of the children’s hospices varied from 19 to 26 years, with 40% (n=4) of hospices providing care until 25 years of age and one having no age limit for people who had been using their service since childhood. 

When asked what services they offered to young adults with LLCs, four children hospices and 18 adult hospices said they did not currently provide any. 

The remaining children and adult hospices provided a typical range of services including day services, end-of-life care, symptom management, home care, unplanned short breaks in a family emergency, and planned short breaks. 

Additionally there was provision of some activities focused on transition including social opportunities and development of independent living skills. 

The most frequently provided services were short breaks and end-of-life care for children’s hospices, and symptom management, end-of-life care, and day services for adult hospices. 

Thirteen of the adult hospices had been providing services for more than five years, with another 10 starting to provide care during the last two years, highlighting a growth in provision. 

When asked about the challenges to developing or delivering services several themes were identified: 

  • a lack of funding and capacity to develop appropriate adult services; 
  • a lack of existing age-appropriate services; 
  • a perceived lack of a skilled and confident workforce in adult hospices to support young adults who have complex and different care needs to older adults; and 
  • the need for better integrated working between children and adult hospices and services to develop and improve access to appropriate services. 

Nineteen adult hospices reported no plans to develop services for this population due to other demands for their services.

The full findings, which are being prepared for submission to a journal, describe a mixed picture of hospice provision for young adults across the UK. 

There are excellent examples of provision and collaborative working, and this picture is constantly changing. However, the challenges described by hospices still exist in some regions. 

There is also the need to hear from young adults themselves on their wishes for care to ensure it is age and developmentally appropriate. 

The team are currently conducting a study with young adults and parents/carers in the UK to explore their experiences and preferences for care to add to our existing understanding. 

The survey can be accessed here if you would like to take part as a parent or young adult or share it with families using your service https://www.surveymonkey.co.uk/r/Familyrespitesurvey

The survey will be open until 14 July 2017. 

In a time when charitable giving and statutory funding is challenging, and the number of young adults who may need services is rising, some of the key words from the Together for Short Lives conference this month of creativity, courage, compassion, change, confidence, communication and collaboration will be vital to the further development of provision to meet the needs of young adults with LLCs.

We would like to thank Together for Short Lives and Hospice UK for their support in disseminating information about the survey, and all the hospices for taking part.

Grant holders: Dr Katherine Knighting, Prof Mary O ‘Brien, Dr Lucy Bray and Prof Barbara Jack from Edge Hill University and Prof Julia Downing who is Visiting Professor at Edge Hill University and currently Chief Executive of the International Children’s Palliative Care Network. 

Corresponding author: Dr Katherine Knighting, Senior Research Fellow, Edge Hill University. knightk@edgehill.ac.uk

References

[1] Fraser L K, Miller M, Aldridge J, McKinney P A, Parslow R C. Prevalence of life-limiting and life-threatening conditions in young adults in England 2000-2010, FINAL REPORT FOR TOGETHER FOR SHORT LIVES. York: Department of Health Sciences, University of York. 2013. Available from: http://www.togetherforshortlives.org.uk/assets/0000/6736/TFSLAdultReport2013Final.pdf 

[2] Doug M, Adi Y, Williams J, Paul, M, Kelly D, Petchey R, et al. Transition into adult services for children and young people with palliative care needs: a systematic review. Archive of Disease in Childhood 2011; 96: 78-84. http://dx.doi.org/10.1136/adc.2009.163931

[3] The National Council for Palliative Care. National survey of Patient activity data for specialist palliative care services: MDS full report for the year 2011–2012. London, 2013, http://www.ncpc.org.uk/sites/default/files/MDS%20Full%20Report%202012.pdf

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