Transition from children’s to adult services for young adults with life-limiting conditions

Key factors identified which contribute to an effective transition from children’s to adult services for young adults with life-limiting conditions

In March 2017 Dr Helen Kerr of Queen’s University Belfast, won the International Journal of Palliative Nursing (IJPN) ‘Researcher of the Year’ for research completed in 2016 which identified the key factors that contribute to an effective transition from children’s to adult services for young adults with life-limiting conditions.  The award was presented by Professor Julia Downing at a ceremony in London.  Helen completed this all-Ireland research study as part of a Doctoral Fellowship supported by the All Ireland Institute of Hospice and Palliative Care, and Health and Social Care, Research and Development Division, Public Health Agency, Northern Ireland.  The research was supervised by Dr Peter O’Halloran, Dr Honor Nicholl and Professor Jayne Price. 

The need for this research emerged due to the growing numbers of young adults with life-limiting conditions living into adulthood as a result of improvements in care and treatment (Fraser et al., 2011).  This has led to an increasing cohort of young adults who must make the transition from children’s to adult services.  However, there is little evidence on transition services for young adults with life-limiting conditions, with few models of good practice in the literature. 

The study had four phases of data collection which commenced with a survey questionnaire to service providers in both statutory and non-statutory organisations to secure a picture of what transition services exist in the island of Ireland.  This was followed by interviews with young adults, then, focus groups with parents/carers and finally, interviews with service providers in the statutory and non-statutory sector.  The findings identified eight interventions associated with an effective transition from children’s to adult services.  Enabling contextual factors were also identified that influenced whether interventions were effective. 

The significance of this research has been recognised in a number of awards.  In addition to the IJPN award, the Royal College of Nursing also recognised the importance of this research as Helen was runner up in the Northern Ireland ‘Researcher of the Year’ in May 2016.  In October 2016 Helen secured the Florence Nightingale Foundation Travel Scholarship award to develop transition guidelines in Northern Ireland. 

From this research completed, Helen led in the organisation and facilitation of an all-Ireland Transition workshop in 2016, working with over 80 services users and service providers to identify the key priorities for action on an effective transition to adult services.  These priorities will be published later this year in a HSC R&D Division, Public Health Agency report*.  The study findings have also led to research currently being undertaken on the development and evaluation of a transition intervention for young adults with life-limiting conditions in Northern Ireland. 

Further information can be obtained from Helen Kerr: h.kerr@qub.ac.uk.

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References

Fraser, L., Miller, M., Aldridge, M., McKinney, P. A., Parslow, R. C. and Hain, R. (2011) Life-limiting and life-threatening conditions in children and young people in the United Kingdom; national and regional prevalence in relation to socioeconomic status and ethnicity.  Final report for Children’s Hospice, United Kingdom.  Leeds.