Self- and proxy reports of quality of life among adolescents living in residential youth care compared to adolescents in the general population and mental health services

Abstract

BackgroundChild welfare services are aimed at providing care and protection, fostering well-being and prosocial behaviour. Thus, Quality of Life (QoL) should be an important outcome measure in Residential Youth Care (RYC) institutions. However, the dearth of research in this area gives rise to serious concern. The present study is the first large scale, nationwide study assessing QoL among adolescents living in RYC. To provide a reference frame, adolescent self- and primary contact proxy reports were compared to the general population and to adolescent outpatients in Child and Adolescent Mental Health Service (CAMHS). Also, we investigated the association between self-report of QoL in adolescents living in RYC and proxy reports of their primary contacts at the institution.MethodsAll residents between the ages of 12–23 years living in RYC in Norway were the inclusion criteria. Eighty-six RYC institutions (with 601 eligible youths) were included, 201 youths/ parents did not give their consent. Finally, 400 youths aged 12–20 years participated, yielding a response rate of 67 %. As a reference frame for comparison, a general population (N = 1444) and an outpatient sample of adolescents in CAMHS (N = 68) were available. We used the Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R). General Linear Model analyses (ANCOVA) were conducted with five KINDL life domains as dependent variables and group as independent variable.ResultsSelf- and proxy reports of QoL in adolescents living in RYC revealed a significantly (p < 0.001) poorer QoL compared to the general population on the life domains Physical- and Emotional well-being, Self-esteem, and relationship with Friends. Adolescents evaluated their physical well-being as worse compared to adolescents in CAHMS. Self- and proxy reports in RYC differed significantly on two of five life domains, but correlated low to moderate with each other.ConclusionsThe results in this study raise major concerns about the poor QoL of the adolescents living in RYC, thereby challenging the child welfare system and decision makers to take action to improve the QoL of this group. The use of QoL as outcome measures is highly recommended.

Childhood maltreatment, psychopathology and well-being: The mediator role of global self-esteem, attachment difficulties and substance use

“…This suggests that primary contacts do not notice the negative impact of maltreatment histories and number of types of adversities on different QoL subdomains, which is clear from the self-reports. In a previous study on the same population, significant differences were reported between self-and proxy reports on only the Physical Well-being and Friends subdomains, suggesting that primary contacts could serve as satisfactory substitutes for QoL information when selfreports are unavailable [26]. By contrast, the results of the present study suggest that primary contacts may not be reliable reporters of adolescents' QoL, at least not for adolescents with maltreatment histories.…”

“…In the Adverse Childhood Experiences (ACE) study, adversities included child abuse (physical, sexual and emotional abuse), neglect (emotional and physical) and household dysfunction (mother treated violently, household substance abuse, mental illness in the household, parental separation or divorce, or criminal household member) (25,26). However, adolescents can be exposed to many kinds of adversities and victimization.…”

“…The ACE study was one of the first large studies to document associations between childhood adversity and later psychiatric and physical diseases and problems (26,33). International research groups have found relationships between childhood adversity and later depression, anxiety, posttraumatic stress disorder (PTSD), eating disorders, sleep disorders, substance abuse, behavioral disorders, suicide ideation, and self-harm (34)(35)(36)(37)(38)(39).…”

“…However, the literature supporting an association between childhood maltreatment and later psychopathology is vast (26,(33)(34)(35)(36)(37)(38)(39)(40)(41)(42), and some literature supports an association between childhood maltreatment and later poor QoL (81,82,84,85). Kendall-Tackett described four pathways through which childhood maltreatment might influence later health: behavioral, social, cognitive and emotional pathways (89).…”

Quality of life among adolescents living in residential youth care: do domain-specific self-esteem and psychopathology contribute?

“…In Norway, foster care is the preferred form of placement and RYC institutions are a last resort [1,2]. Adolescents in RYC therefore represent a high-risk population for serious psychopathology, having a very high prevalence of mental disorders and a poorer quality of life (QoL) in most life domains compared to their peers in the general population [3,4]. Hence, child welfare services should foster wellbeing and QoL and ensure that residents in institutions gain access to evidence-based psychiatric treatment for their psychopathology.…”