Transition from children’s’ to adult services for young adults with life-limiting conditions in Ireland: a realist evaluation using mixed methods (TASYL study)’
Advanced cancer, Comorbidities, Prescribing, Medication management, Palliative care, Symptom Management, Guideline development
The number of young adults with life-limiting conditions living into adulthood is increasing internationally as a result of early detection, advances in medical treatment strategies and improved health services. This has resulted in an increasing number of young adults with life-limiting conditions graduating from children’s services making the existence of programmes for effective transition increasingly important. However, despite transition being on the international healthcare agenda for over thirty years, young adults with life-limiting conditions are still not always receiving the services they need throughout the transition process. Unmet needs include a lack of emotional support, deficiency of information, issues related to adult inpatient experiences and loss of services such as short breaks. A poorly planned transition is associated with measurable adverse outcomes related to morbidity such as non-adherence to treatment and loss to follow-up, together with negative social and emotional outcomes.
The aim of the research was to identify the organisational and human factors, and interactions between factors, involved in promoting or hindering an effective transition from children’s to adult services for young adults with life-limiting conditions. A realist evaluation using a mixed methods design was employed with four phases of data collection in the island of Ireland. 1) distribution of a questionnaire survey to the statutory health and social care sector, statutory educational organisations, and non-statutory organisations known to be providing services to young adults making the transition from children’s to adult services in Northern Ireland (NI) and one Health Services Executive area in the Republic of Ireland (RoI); 2) interviews with young adults; 3) focus groups with parents/carers and 4) interviews with service providers from statutory and non-statutory organisations. Data were thematically analysed seeking to explain the impact of services and interventions, and to identify organisational factors influencing the quality, safety and continuity of care.
*(104 participants from 29 organisations participated in the survey questionnaire)
Eight interventions were identified as promoting an effective transition from children’s to adult services. Reactions triggered in individuals in response to interventions were deduced. Also, enabling contextual factors were uncovered which were considered to influence outcomes associated with an effective transition to adult services. The inter-relationships between the eight key interventions, the contextual factors and the responses of individuals produced two complementary models for successful transition. One focuses on children’s and adult service providers communicating and collaborating with the help of a transition coordinator who fosters a sense of confidence among adult service providers that they can manage the complex care of the young adult, and empowers them to make the necessary preparations in terms of facilities and staff training. The other model focuses on the young adult, with service providers collaborating to develop an autonomous young adult, whilst actively involving parents or carers. These models interact in that a knowledgeable, confident young adult who is growing in decision-making abilities is best placed to take advantage of services – but only if those services are properly resourced and run by staff with appropriate skills.
It is evident from this research that no single intervention or stakeholder group can guarantee a successful transition. Rather, service providers should take a diagnostic approach, working between services and with young people and their families to understand and address the interaction of human and organisational factors that are likely to produce important outcomes in their unique context.
Study carried out: January 2013 to December 2015
Project Team: Dr Helen Kerr, Queen’s University Belfast (QUB), Dr Peter O’Halloran, QUB, Dr Honor Nicholl, Trinity College Dublin, Professor Jayne Price, Kingston University and St Georges, University London.
Along with Dr Peter O’Halloran, Dr Honor Nicholl and Professor Jayne Price, awarded a competitive Doctoral Fellowship from the All Ireland Institute of Hospice and Palliative Care and the Health and Social Care, Public Health Agency, Research Division from 2013-2016.
‘Factors contributing to an effective transition from children’s to adult services for young adults with life-limiting conditions.’ Paper presented at:
‘A research protocol of transition to adult services by young people with life-limiting conditions in Belfast and Dublin: a realist evaluation using mixed methods (TASYL study).’ Paper presented at Community Children’s Nursing Conference: Teen Years Count, Ballymena, NI: May 2014.
‘Transition to adult services for young adults with life-limiting conditions in Ireland.’ European Association of Palliative Care, Pre conference seminars, Cellars, Spain: June 2014.
‘Transition to adult services by young people with life-limiting conditions in Belfast and Dublin: preliminary findings from interviews with young adults with neuromuscular conditions.’ Invited key note speaker: All Ireland Neuromuscular Research Information Day, Belfast, NI: May 2015.
‘Transition to adult services by young people with life limiting conditions in Ireland: a realistic evaluation using mixed methods (TASYL study).’ Paper presented at the International Children’s Palliative Care Network Conference, Buenos Aires, Argentina: May 2016.
‘Bridging the Gap: A Palliative Care approach to young adults with life-limiting conditions.’ International Congress on Palliative Care, Montreal, Canada: October 2016.
Kerr, H., Price, J. and O’Halloran, P. (2019) A cross-sectional study of services for young adults with life-limiting conditions making the transition from children’s to adult services in Ireland. Irish Journal of Medical Sciences. doi: 10.1007/s11845-019-02054-z
Kerr H., Price J., Nicholl H., and O’Halloran P. (2018) Facilitating transition from children’s to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a realist evaluation. International Journal of Nursing Studies (86), 125-138. doi : doi.org/10.1016/j.ijnurstu.2018.06.015
Kerr, H., Price, J., Nicholl, H. and O’Halloran, P. (2017) Transition from children’s to adult services for young adults with life-limiting conditions: A realist review of the literature. International Journal of Nursing Studies, 76, pp. 1-17.
Kerr, H. (2017) Palliative Nursing ‘Researcher of the Year’ winner announced. ehopsice: UK edition, April 2017 (Accessed 12th February, 2018).
Kerr, H., Nicholl, H., Price, J. and O’Halloran, P. (2016) Organisational factors affecting transition from children’s to adult services by young adults with life-limiting conditions in Ireland, Palliative Medicine, 30(6), pp. 122-3.
Kerr, H., O’Halloran, P, Nicholl, H. and Price, J. (2014) Transition from children’s to adult services for young people with life-limiting conditions: Findings from a questionnaire survey in Northern Ireland. Palliative Medicine, 28(6), pp. 783-4.
Kerr, H., O’Halloran, P., Nicholl, H. and Price, J. (2014) A Realist Literature Review Of Transition to Adult Services by Young People with Life-Limiting Conditions in Ireland. BMJ Supportive and Palliative Care. 4(Supplement 1), pp. A85.