“Thrown Into the Deep End”: Mapping the Experiences of Young People Living in a Family Affected by a Neurological Condition

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.

Intertwined like a double helix: A meta‐synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis

“…Carers reported being excluded from a care ecosystem organized around the health care provider and the person with MS. Partners, 26 carers of persons transitioning to secondary progressive MS and 34 parents of children with MS, especially while in pursuit of a diagnosis, 55,56,61 reported feeling ignored and undervalued by clinicians who did not treat them as equal partners in the health care relationship. Young carers of a parent with MS noted, in particular, that they were marginalized by clinicians whose focus was solely on the parent 27,28 …”

“…This existential uncertainty was psychologically distressing for partners who described not knowing how to help the person with MS 66 and for carers worried about being unable to care for them if they themselves were unwell 27,36,42,46 . Faced with an uncertain future, participants in many studies reported experiencing anxiety and depression, 31,36,41,58,63,65,66 including children 27,28,30,54,60 . The MS diagnosis was overwhelming and worrying for children, and often continued into adulthood 27,60 .…”

“…Young carers of a parent with MS noted, in particular, that they were marginalized by clinicians whose focus was solely on the parent. 27,28 The initial diagnosis was described by partners and parents of people with MS as being a shared and emotionally challenging experience. 23,55 This was compounded by lack of knowledge about MS and inaccurate or negative preconceptions about MS, including expectations of severe disability.…”

“…X X X X X There is a need for health professionals to provide support that focusses on the needs of partners. children 24,28,30,33,54,[58][59][60]64 and parents of people with MS, 25,32,55 and their next of kin. 37 This existential uncertainty was psychologically distressing for partners who described not knowing how to help the person with MS 66 and for carers worried about being unable to care for them if they themselves were unwell.…”

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

“…Access to a dedicated team could reduce the level of navigation work imposed on patients and families and could also provide support to practitioners who are less comfortable diagnosing younger patients. Finally, the social, psychological, and financial challenges participants experienced provide further evidence of the need for family-centered supports during the diagnostic process and after (Masterson-Algar & Williams, 2020;Rabanal et al, 2018).…”