Abstract
BackgroundYoung people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption.MethodsThe aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children.ResultsHRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate.ConclusionThe KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.
Highlights
Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers
Based on a commonly accepted definition by the WHO Quality of Life group [48], the following operational definition as stated by von Rüden [35] is used in this paper: health-related quality of life (HRQOL) is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in
Concerning "living in secrecy", a question like "do you have to conceal something" would be adjuvant. This shows that HRQOL measures allow for addressing young carer's problems, there is still a need to develop instruments which are desinged for use in this specific population
Summary
Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. As children might be involved in caring for their relatives -or even become the primary care giver – their burden has to be taken into account as well These young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers [10,11]. Results of national surveys in the UK state that children are in average between 8 and 10 years old when they get involved in caring for a relative, while the avarage age of young carers is 12 years [14,15]. There are more than 300 young carers projects available in the UK, where these children are supported and counseled [24]
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