Abstract
Purpose and aims A United Kingdom charity funds approximately 30 Youth Support Coordinators (YSCs) to work alongside Multi-Disciplinary Teams (MDT) in the provision of aspects of psycho-social support to teenagers and young adults (TYA) with cancer, whilst maintaining a youth focus. YSC’s bring experience of working with young people from various health and non-health sectors. These non–regulated workers stem from a variety of professional backgrounds. Determining how YSCs enact their day to day work with young people with cancer and MDT’s in clinical settings was the aim of this research. A knowledge and skills framework was drafted to inform and support YSC practice, the funder, and the National Health Service, which employs them. Methods An action research approach using two focus groups (Health Care Professionals (N=7) and TYA with cancer (N=7) and an online questionnaire (YSC’s N=28) was used. Thematic analysis ensued. A research steering group engaging YSC’s and Lead Nurses ensured consistency with the methodology and helped shape findings. Results The positive value of YSC contribution to patients and MDT was echoed consistently across the data. Four domains of practice emerged for inclusion in the framework - 1. Adolescent development 2. The Teenager/Young Adult with Cancer 3.Working with TYA with cancer and 4. Professional practice of YSC work. Discussion and Conclusions Understanding adolescent development from bio-psycho social perspectives, alongside how cancer and its treatment impacts this, are two fundamental domains of practice in YSC work. Youth focused activities is pivotal to the third domain as it creates space to focus on the unique psycho-social needs of AYA with cancer in clinical and non-clinical settings. Professional practice as a domain focusses on the cultures, rules and practices of working in healthcare systems alongside representing and responding to their funder. Further questions and challenges are raised; e.g., the value and challenge of holding purposeful therapeutic conversations; the provision of practice supervision and guidance for YSC whose ‘insider/outsider’ perspective brings additional practice complexity. It is suggested that these practice insights may not unique to TYA cancer care, and that the findings could have implications for other areas of adolescent healthcare provision.
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