TY - CONF

T1 - Exploring the experiences of young adults living in families affected by a neurological illness

AU - Masterson Algar, Patricia

PY - 2019/9/7

Y1 - 2019/9/7

N2 - BackgroundMore than 12 million people in the UK are affected by a neurological illness such as dementia, multiple sclerosis (MS) or stroke. Strong evidence suggests that these conditions generate a variety of socio-economical stresses that can have a damaging impact on the way the person and their family live their lives. AimThe overall aim of this study was to investigate the impact that having a parent with a neurological illness can have on young adults’ experiences of growing up. This study also explored support networks of these young adults and investigated the accessibility of current peer support initiatives. MethodThe study design followed a case-study approach. Three neurological conditions were chosen as case studies: Stroke, MS and Dementia. Within each case study the researcher: 1. Carried out semi-structured interviews with young adults living in families affected by each of these conditions (Stroke n=7, Dementia n=11, MS n=15); 2. Organized 1-day workshop in which all participants were given the opportunity to provide feedback and critique initial themes identified during the analysis of interview data. During the workshop, young adults were also asked to identify and represent their support networks using a variety of materials such as Lego or Play Dough in order to engage in meaningful discussion.FindingsFour themes were identified across all case studies: 1. The illness has shaped my family, and me; 2. They (people outside my family) do not understand; 3. Thrown into the deep end (learning as I go along); 4. I need to talk about this. Support networks were identified as being highly reliant on the ‘closed knit family’. Young adults overwhelmingly stated that due to lack of understanding of their peers and teachers and fear of being stigmatized they rarely shared their challenges and did not consider school as playing a supportive role. Conclusion More needs to be done to support young people growing up in a family affected by a neurological illness. Schools in particular need to address this need and provide opportunities to share knowledge and generate meaningful conversations around these conditions and their impact on everyday life.

AB - BackgroundMore than 12 million people in the UK are affected by a neurological illness such as dementia, multiple sclerosis (MS) or stroke. Strong evidence suggests that these conditions generate a variety of socio-economical stresses that can have a damaging impact on the way the person and their family live their lives. AimThe overall aim of this study was to investigate the impact that having a parent with a neurological illness can have on young adults’ experiences of growing up. This study also explored support networks of these young adults and investigated the accessibility of current peer support initiatives. MethodThe study design followed a case-study approach. Three neurological conditions were chosen as case studies: Stroke, MS and Dementia. Within each case study the researcher: 1. Carried out semi-structured interviews with young adults living in families affected by each of these conditions (Stroke n=7, Dementia n=11, MS n=15); 2. Organized 1-day workshop in which all participants were given the opportunity to provide feedback and critique initial themes identified during the analysis of interview data. During the workshop, young adults were also asked to identify and represent their support networks using a variety of materials such as Lego or Play Dough in order to engage in meaningful discussion.FindingsFour themes were identified across all case studies: 1. The illness has shaped my family, and me; 2. They (people outside my family) do not understand; 3. Thrown into the deep end (learning as I go along); 4. I need to talk about this. Support networks were identified as being highly reliant on the ‘closed knit family’. Young adults overwhelmingly stated that due to lack of understanding of their peers and teachers and fear of being stigmatized they rarely shared their challenges and did not consider school as playing a supportive role. Conclusion More needs to be done to support young people growing up in a family affected by a neurological illness. Schools in particular need to address this need and provide opportunities to share knowledge and generate meaningful conversations around these conditions and their impact on everyday life.

KW - neurological illness

KW - young adult

KW - peer support

KW - Families

M3 - Abstract

T2 - Children and young people’s mental health and wellbeing: Communities, families, resilience and resistance

Y2 - 5 September 2019 through 7 September 2019

ER -