‘I knew it wasn’t normal, I just didn’t know what to do about it’: adversity and caregiver support when growing up in a family with Huntington’s disease

Abstract

View related articles View Crossmark dataPsychology & health 'I knew it wasn't normal, I just didn't know what to do about it': adversity and caregiver support when growing up in a family with Huntington's disease

Social support experiences when growing up with a parent with Huntington’s disease

“…Past research has shown the distressing circumstances young people in families with HD may endure, as well as showing that support from their caregivers can be severely compromised (e.g. Forrest Keenan et al, 2007 ; Kavanaugh et al, 2015 ; Kjoelaas et al, 2021 ; Vamos et al, 2007 ; van der Meer et al, 2012 ). The first main finding in this study builds on this knowledge by identifying the many important roles others’ or groups’ outside the parent–child context can serve in helping young people cope with and adapt to stressful life circumstances.…”

“…There exists a small but significant body of research reflecting how HD can impact the lives of young people. Among the multiple and ongoing stressors they may endure are the high risk of being left with overwhelming responsibilities at home (Kavanaugh, 2014 ) and being exposed to a range of adverse experiences, such as chronic unpredictability, domestic violence, and suicide (Forrest Keenan, Miedzybrodzka, Van Teijlingen, McKee, & Simpson, 2007 ; Kjoelaas, Jensen, & Feragen, 2021 ; van der Meer, van Duijn, Wolterbeek, & Tibben, 2012 ). In addition, many struggle with the constant worry about their own possibility of one day developing the disease and whether or not to get tested as they approach adulthood.…”

“…To further understand how young people with a parent with HD could be helped to cope and adapt, research from other broader categories of children at risk may be useful, such as at risk of averse childhood experiences (ACE’s; Kjoelaas et al, 2021 ; van der Meer et al, 2012 ) or with young people who grow up serving as a caregiver for their parent with physical or mental illness in general, called ‘young carers’ (Becker, 2000 ). For this group, one systematic-review shows that taking on caregiving tasks in the family can have both a positive and a negative impact on a young person’s development (Chikhradze, Knecht, & Metzing, 2017 ).…”

“…A key factor to cope and adapt for young people in families with HD, those at risk of ACEs, and young carers in general, seems to be the protection and guidance provided by having good systems of social support and strong attachments within relationships (e.g. Forrest Keenan et al, 2007 ; Pakenham, Chiu, Bursnall, & Cannon, 2007 ; Kjoelaas et al, 2021 ). Consequently, past research strongly advocates that this group is in need of social support systems that can help them cope and adapt (e.g.…”

“…The close attachments they find in their relationships with their caregivers are an important source of social support for any child or adolescent (Bowlby, 1979 ). However, in families with HD, the disease often disrupts family systems and can compromise the resources and availability of both caregivers as a source of support for their children (Forrest Keenan et al, 2007 ; Kjoelaas et al, 2021 ; Mand et al, 2015 ; Vamos, Hambridge, Edwards, & Conaghan, 2007 ; Van der Meer et al, 2006 ). For instance, as one caregiver gradually loses his or her caregiving and supportive abilities due to the progression of HD, the other caregiver may also become less available due to increasing preoccupations with the tasks of caring for their partner (Mand et al, 2015 ).…”