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Background: Due to the progressive deterioration of motor, cognitive, and psychological function, individuals with Huntington's disease (HD) rely heavily on family caregivers, including children in the home. This "young carer" role can result in responsibilities that are inappropriate for the child's age and abilities. Also referred to as parentification, this experience can result in both positive and negative outcomes for the child, spanning multiple domains of health and well-being. Objective: To explore the manifestation of parentification among young carers of a parent with HD. Method: Directed content analysis, guided by a literature-derived framework of parentification, was utilized for this qualitative study. Participants included 28 young carers (mean age of 16.6 (± 2.6)) who self-identified as engaging in caregiving activities related to HD with the majority providing care for 1–3 years (53.6%)- averaging 25.4 h of care per week. Results: Three main themes with subthemes emerged: (1) being a young carer [perceptions of caregiving, learning to be a caregiver, caregiver burden, coping], (2) living with a new normal (school and friends, feeling unheard/alone, support system, personal growth), and (3) facing HD as a young carer (stigma and isolation, parent/child relationship, end of life, genetic risk). Conclusions: Young carers in the context of HD experience many attributes and consequences of parentification generally present among young carers of ill parents. However, HD specific findings emerged from this study that can be used to inform clinicians and direct future research aimed at guiding policy and developing tailored support services. [ABSTRACT FROM AUTHOR]

Approximately 1.4 million young carers (aged 8–18) in the United States are providing multifaceted, extended care to adults with serious illness, in addition to their family, home, and/or school responsibilities. In 2015 an initial review of U.S. research on young carers highlighted the need for longitudinal research, interventions, and national policy. The aim of this review is to identify young carer research since the original review to assess progress in better serving young carers' needs and to identify persistent gaps for future research. Using Arksey & O'Malley's Scoping Review Framework to answer our research question of how many studies have been conducted since the initial review, we (1) identified relevant studies, (2) performed study selection, (3) charted the data, and (4) summarized and reported results. We also reviewed young carer research outside of the U.S. to compare transnational progress. The search yielded only four U.S. studies representing 507 CC; age range 8–25 years. Most often the young carers reported more responsibilities than the adult care recipient and a variety of factors contributing to their experience. A separate review yielded eight non-U.S. studies and similar findings. Mirroring the 2015 review, results detail a lack of consistency regarding the terminology and age range for young carers. Despite a previous call to action, there exists both a continued need for tailored interventions to prevent or mitigate potential negative outcomes related to the caregiving role, and a need for further research and global policy development. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics including lack of research on young carers around the globe; intersectional approach to the unequal conditions of care; and concept of "parentifcation".

Background: Caregiver skill training and support programs are traditionally offered to adult caregivers, leaving out the over 1 million children and youth who provide care ("young caregivers"). Skill building and support programs are critical to caregiver and patient well-being and can be informed by the knowledge of current caregiver skill and support acquisition. Objective: Using data from three studies of neurological disorders, this paper provides initial data on how young caregivers acquire caregiver skills and training needed to inform young caregiver programs. Method: Mixed method data drawn from three studies of young caregivers in neurological disorders, Huntington's disease (HD) and amyotrophic lateral sclerosis (ALS). Results: Youth (N = 96), ranged in age from 8 to 20, care for a family member with HD or ALS, and involved in tasks ranging from assistance with walking (76%), toileting (32%) and administering medications (37%). The majority (N = 59; 61%), received no training or guidance. When asked how they knew what to do, six main themes arose: (1) patient tells me what to do, (2) watching and observing, (3) common sense, (4) treating patient like child or self, (5) process of figuring it out, and (6) don't know. Conclusion: Young caregivers in neurological disorders engage in numerous caregiving tasks with little formal guidance, despite a desire for training and education by adults and professionals. Reliance on various skill methods and lack of formal guidance, points to the need for health care professionals to develop education and training programs targeting this isolated and underserved population, improving the well-being of both caregiver and care recipient. [ABSTRACT FROM AUTHOR]

Huntington's disease (HD) is a predominantly adult-onset, genetic, neurodegenerative condition. Children of affected individuals have a 50% risk of inheriting HD and often assume caregiving roles for their parent. Studies specifically focused on HD young caregivers have proposed that the genetic risk component of HD "exacerbates" the caregiving experience and identified common responsibilities, burdens, and support needs, but none have explored the relationship between the caregiving role and perception of genetic risk. In an attempt to understand this relationship, we conducted a qualitative study to explore the interaction between a young caregiver's perception of genetic risk, the caregiving experience, and thoughts about and plans for predictive testing. Thirteen individuals between 15 and 25 years who provided care for a parent with HD were recruited from two HD youth groups and local support groups. Interviews were recorded, transcribed, and analyzed thematically. Two themes emerged: (1) caregiving and thoughts about risk and (2) caregiving and perceived opinions towards genetic testing. Our findings suggest that the genetic risk colors the caregiving experience by evoking feelings about the future and a potential diagnosis of HD, in addition to impacting plans for predictive testing. Genetic counselors can use these findings to inform their understanding of caregiver experiences, which can aid them when helping patients explore their motivations for testing during a genetic counseling session. Future studies should explore the extent to which health care providers acknowledge the work of young caregivers in the home and provide support to these individuals. [ABSTRACT FROM AUTHOR]