"Thrown Into the Deep End": Mapping the Experiences of Young People Living in a Family Affected by a Neurological Condition. (April 2020)

• Record Type: Journal Article
• Authors: Masterson-Algar, Patricia; Williams, Sion
• Is Part Of: Qualitative health research. Volume 30:Number 5(2020)
• Page Start: 717
• Page End: 729
• Publication Date: 2020-04
• Subjects: young adult carers -- neurological conditions -- chronic conditions -- support networks -- multiple sclerosis -- stroke -- dementia -- families -- qualitative methods -- case study research; Health -- Periodicals; Health behavior -- Periodicals; Health -- Research -- Methodology -- Periodicals; Health behavior -- Research -- Methodology -- Periodicals; 610.7205
• DOI: 10.1177/1049732319900498
• Languages: English
• ISSNs: 1049-7323

Abstract

In this case study research, we investigated the impact that having a parent with a neurological condition can have on young adults' experiences of growing up and the nature of their support networks. The work was informed by models of interface of chronic conditions and the family. Stroke ( n = 6), multiple sclerosis ( n = 14), and dementia ( n = 11) were selected as discrete cases. Within each case, the researcher (a) carried out semi-structured interviews with young adults (16–25 years) living in families affected by this condition and (b) organized a workshop in which all participants reviewed preliminary themes and reflected on their support networks. A thematic analysis identified four themes: the condition has shaped me, thrown into the deep end, I need to talk about this, and they don't understand . A model of networks and support for these young adults was generated reflecting the need to increase their visibility and their access to support.