TY - JOUR

T1 - "Thrown into the deep end": Mapping the experiences of young people living in a family affected by a neurological condition

AU - Masterson Algar, Patricia

AU - Williams, Sion

PY - 2020/4/1

Y1 - 2020/4/1

N2 - 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.

AB - 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.

KW - young adult carers

KW - multiple sclerosis

KW - case study research

KW - qualitative research

KW - Dementia

KW - Stroke

KW - Families

KW - neurological conditions

KW - support networks

KW - chronic conditions

U2 - 10.1177/1049732319900498

DO - 10.1177/1049732319900498

M3 - Article

VL - 30

SP - 717

EP - 729

JO - Qualitative Health Research

JF - Qualitative Health Research

SN - 1049-7323

IS - 5

ER -