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.

Thomas Jozefiak,Nanna Sønnichsen Kayed

doi:10.1186/s12955-015-0280-y

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.

Highlights

Child welfare services are aimed at providing care and protection, fostering well-being and prosocial behaviour
Attrition analyses Adolescents in the Residential Youth Care (RYC) To ensure that our sample of KINDL-R self-reports (n = 300) was representative for all included adolescents, a comparison between Internalizing and Externalizing scores on the Child Behavior Checklist (CBCL) [47] between completers and non-completers showed no significant differences
Adolescents in Child and Adolescent Mental Health Service (CAMHS) It was investigated whether the CAMHS KINDL-R subsample (n = 68) was representative for the 214 patients participating in the former study [11]

Summary

Introduction

Child welfare services are aimed at providing care and protection, fostering well-being and prosocial behaviour. Quality of Life (QoL) should be an important outcome measure in Residential Youth Care (RYC) institutions. 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). We investigated the association between self-report of QoL in adolescents living in RYC and proxy reports of their primary contacts at the institution. Adolescents are placed in Residential Youth Care (RYC) mainly because of neglect, abuse or severe behavioural problems, coming from families exposed to psycho-social strains and parental addictive- and psychiatric problems. Adolescents in RYC show a high prevalence of mental disorders [1] These factors increase the risks of adverse outcomes in adulthood with regard to physical health, mental disorders, and psychological well-being [2, 3]. The QoL concept is partly comprised of positive and negative affect towards health and life circumstances, as well as an emotional state that is determined by inter-personal aspects, temperament, etc. [11]

Methods

Results

Conclusion