Children and Adolescents Providing Care to a Parent with Huntington’s Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Children with ill parents: extent and nature of caring activities

“…In contrast to previous studies’ findings, such as mothers as the caregiving recipient , in single‐parent, and low‐income household , the parents demographics did not have a significant impact on the children's caring activities. Considering the low explanation power, the only exception was the significant association between the children's responsibility for health care and the families’ low income.…”

“…Children with PI parents performed more caring activities than children with MI parents (28,35), and even more when parents experienced a combination of PI and MI (28). Provisions for a parent's personal care seemed common when the parent had a severe PI (10,17), compared to children with MI (28,35). One recent study found no significant differences in extent and nature of children's caring activities among the three illness groups PI, MI and PA (2).…”

“…Young carers may be defined as children younger than 18 who provide or intend to provide care and/or support to another family member and regularly perform significant or substantial caring tasks by assuming adult-associated responsibilities' (12). Studies about 'young carers' show that they are at risk for poorer physical health (8,13), poorer mental health (2,9,14,15), lower well-being (8,(16)(17)(18)(19) and limitations in possibilities for higher education (7,20,21), than their age-matched counterparts. Positive outcomes, such as resilience and self-esteem, seem to be positively related to social recognition of the caregiving role and support from friends or family (3,(22)(23)(24)(25)(26).…”

“…Some studies of young carers found that children reported higher extents of caring activities, specifically domestic and personal care, as their ages increased (20,28). Low family income and singleparent households have been found to predict higher extents of caring activities (2,7,13,17,27,36); however, a recent study found no significant influences for single-parent households (13).…”

Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions

“…Other studies have tested for statistical association between the extent of caring and problems. Such studies are rare and show mixed findings, with some reporting that greater caring activity is associated with psychological problems (i.e., Joseph et al 2009a;Nagl-Cupal et al 2014) but not in others (i.e., Kavanaugh 2014;Becker and Sempik 2018;). Correlation does not however imply causality…”