BACKGROUND: Moving to adult care can be challenging for adolescents with a long-term condition; if not managed well it may result in non-adherence, failure to attend appointments and a decline in health post-transfer. Life expectancy for those with cystic fibrosis has improved considerably in recent decades. This patient group was selected as an exemplar for thinking about the movement of care from paediatric to adult services. OBJECTIVES: To explore young people's experience of transferring. DESIGN: A qualitative descriptive methodology, involving semi-structured interviews. SETTING: One adult cystic fibrosis unit in the United Kingdom. PARTICIPANTS: 19 patients (12=male) who had moved to the study site no more than 12 months prior to data collection, which took place between October 2010 and February 2011. METHODS: Interviews were conducted face-to-face, by telephone or email. Framework analysis was applied to interview transcripts. RESULTS: Data suggested transfer was a period of flux, during which participants progressed from a service that was relatively prescriptive to one that called for autonomy. They appeared to go through three stages during this process: fracturing, acclimatising and integrating. The concept of liminality was used as a lens to explore data. Liminality describes those on the threshold of a new social position and rituals that bring meaning to such change. Rites of passage, such as being visited by a member of the adult team and a first appointment within this new healthcare setting, were important because they allowed for initiation into the workings of the adult unit. However, the absence of certain rituals, including a ceremony marking departure from paediatrics, might hinder progression towards becoming an adult patient. CONCLUSIONS: The concept of liminality proved useful for thinking about data. Additional work should explore whether it can be applied to different long-term conditions and if initiation rituals vary across services. Nurses could play a role in preparing adolescents by assessing their readiness to transfer on a regular basis and intervening to address individual needs. This would help with young people's shift from a paediatric to adult identity, hopefully preventing them from experiencing a prolonged liminal state post-transfer.
BACKGROUND: Moving to adult care can be challenging for adolescents with a long-term condition; if not managed well it may result in non-adherence, failure to attend appointments and a decline in health post-transfer. Life expectancy for those with cystic fibrosis has improved considerably in recent decades. This patient group was selected as an exemplar for thinking about the movement of care from paediatric to adult services. OBJECTIVES: To explore young people's experience of transferring. DESIGN: A qualitative descriptive methodology, involving semi-structured interviews. SETTING: One adult cystic fibrosis unit in the United Kingdom. PARTICIPANTS: 19 patients (12=male) who had moved to the study site no more than 12 months prior to data collection, which took place between October 2010 and February 2011. METHODS: Interviews were conducted face-to-face, by telephone or email. Framework analysis was applied to interview transcripts. RESULTS: Data suggested transfer was a period of flux, during which participants progressed from a service that was relatively prescriptive to one that called for autonomy. They appeared to go through three stages during this process: fracturing, acclimatising and integrating. The concept of liminality was used as a lens to explore data. Liminality describes those on the threshold of a new social position and rituals that bring meaning to such change. Rites of passage, such as being visited by a member of the adult team and a first appointment within this new healthcare setting, were important because they allowed for initiation into the workings of the adult unit. However, the absence of certain rituals, including a ceremony marking departure from paediatrics, might hinder progression towards becoming an adult patient. CONCLUSIONS: The concept of liminality proved useful for thinking about data. Additional work should explore whether it can be applied to different long-term conditions and if initiation rituals vary across services. Nurses could play a role in preparing adolescents by assessing their readiness to transfer on a regular basis and intervening to address individual needs. This would help with young people's shift from a paediatric to adult identity, hopefully preventing them from experiencing a prolonged liminal state post-transfer.
Authors: Alenka J Brooks; Philip J Smith; Richard Cohen; Paul Collins; Andrew Douds; Valda Forbes; Daniel R Gaya; Brian T Johnston; Patrick J McKiernan; Charles D Murray; Shaji Sebastian; Monica Smith; Lisa Whitley; Lesley Williams; Richard K Russell; Sara A McCartney; James O Lindsay Journal: Gut Date: 2017-02-21 Impact factor: 23.059