TY - CONF

T1 - What is it like to grow up with a parent who has multiple sclerosis?

AU - Masterson Algar, Patricia

PY - 2019/7

Y1 - 2019/7

N2 - BackgroundMore than 12 million people in the UK are affected by a neurological illness such as MS. 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 such as MS 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. Within the MS case study the researcher: 1. Carried out semi-structured interviews with young adults living in families affected by 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 or asked for help. Conclusion More needs to be done to support young people growing up in a family affected by MS. Schools in particular need to address this need and provide opportunities to share knowledge and generate meaningful conversations around these neurological conditions and their impact on everyday life.

AB - BackgroundMore than 12 million people in the UK are affected by a neurological illness such as MS. 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 such as MS 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. Within the MS case study the researcher: 1. Carried out semi-structured interviews with young adults living in families affected by 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 or asked for help. Conclusion More needs to be done to support young people growing up in a family affected by MS. Schools in particular need to address this need and provide opportunities to share knowledge and generate meaningful conversations around these neurological conditions and their impact on everyday life.

KW - multiple sclerosis

KW - peer support

KW - young adult

KW - Families

M3 - Abstract

T2 - MS Frontiers 2019

Y2 - 4 July 2019 through 5 July 2019

ER -