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Table of contents
- Weißt du, wie viel Sternlein stehen - Wikipedia
- Associated Data
- First Edition from Fundus-Online GbR Borkert Schwarz Zerfaß
Weißt du, wie viel Sternlein stehen - Wikipedia
Comparing the instruments' items in detail, as shown in additional file 1 , there are differences in how accurate the specific problems of young carers are addressed. Items of the CHQ don't address the problems "lack of freetime" and "physical and mental exhaustion". The item "I feel lonely" allows to refer to the problems "having no one to talk to", "living in secrecy", "social isolation" and "loneliness, sadness, fear".
Four items are related to more than one problem: The item "have you had enough time for yourself" may be an indicator for the problems "lack of freetime" and "parental attachment", while "have you spent time with your friends" points to "lack of freetime" and "social isolation". The item "have you felt so bad that you didn't want to do anything" refers to "loneliness, sadness, fear" and "physical and mental exhaustion", while the item "have you felt lonely" allows for the same multiple link as CHQ's "I feel lonely". The problem "living in secrecy" is only allusively addressed by the items "have you felt lonely" and "have you been able to rely on your friends".
The PedsQL does not represent the problems "having no one to talk to", "living in secrecy" and "parental attachment". Two of its items point to multiple problems. While the item "I cannot do things that other kids my age can do" refers to the problems "lack of freetime" and "social isolation", the item "I forget things" indicates decreased ability to perform at school and is an indirect measure of the effect of "physical and mental exhaustion". The problem "lack of freetime" is covered allusively by KINDL R 's questions "I was bored" and "I played with friends", while PedsQL's item "I cannot do things that other kids my age can do" allows for an indirect link.
Regarding the problem of strong "parental attachment", the CHQ only assess the family's general "ability to get along with one another". The KINDL R asks whether "my parents stopped me from doing certain things", which can be understood as active parental interdictions. KIDSCREEN's item "have you been able to do the things you want to do in your free time" however allows to cover leisure activities which are unfeasible due to parental impairment.
The literature supports the use of HRQOL with young carers as its domains cover the problems they experience. Thus, HRQOL seems to be a suitable outcome criterion measuring the effectiveness of special young carers support. As HRQOL in children has become an important outcome indicator in evaluating health-care interventions, there are several measurements available.
Since no specific HRQOL-measures are available to address the specific situation of young carers, a generic one has to be chosen for use in this population. The literature advises to select a measure, which a has adequate psychometric testing results, b allows for self and proxy assessment, c has been devloped in the country of origin or crosscultural, and d which items cover important domnains relevant to the context.
In addition, all of these fulfill the request of self and proxy assessment. Concerning their developmental process, there is a difference between the four. The most important difference between the four instruments was found while comparing how sensitive the instruments' items cover the context under study. Nevertheless, some of young carer's problems are not directly matched by the instruments.
For example, regarding the problem "having no one to talk to" it would be helpful to ask "do you have the feeling, that there is no one you can talk to". Concerning "living in secrecy", a question like "do you have to conceal something" would be adjuvant. This shows that although 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. This even rises the question, whether we need to broaden our understanding of outcome measures.
In order to find an appropriate outcome criterion for family oriented support of young carers, we focused on individual HRQOL instruments. But if we adopt a family oriented perspective, an outcome criterion might need to address the family system as a whole. For example, for adult care givers, there are measures available which assess the impact and burden a chronically ill child has on the family e.
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However, these measures are related to specific topics, and until today none of them focuses on the situation of young carers and their families. In addition, they are designed for the use in adults only. On the other hand, although young carers support needs to be family oriented, the focus of our current study still lies on the children, their experiences and well-being. Nevertheless, future research on instrument development for use in the population of young carers and their familie should consider a systematic approach. The literature approves HRQOL to be an adequate alternative criterion to evaluate the effectiveness of a support service for young carers.
Nevertheless, as some of young carer's specific problems are not directly addressed by current HRQOL measures, there is a need to develop instruments focusing on this specific population. The manuscript is not a systematic but an integrative review. This is due to the reason that there are currently neither RCTs evaluating young carers support services nor assessment instruments focusing on young carers' specific situation available. Only items of the four instruments with the best published psychometric testing results where analysed.
The results of the literature search show a lack of standardised measures designed for the use in young carers, and thus implicates three possible approaches: a to develop independent instruments focusing on the specific problems of young carers, b to develop specific young carers modules which can be connected to the generic core of available HRQOL-measures e.
JgS carried out the literature search, included and excluded documents, and wrote the manuscript. SMB and WS revised it critically for important intellectual content. All authors read and approved the final manuscript. Young carer's problems covered by instrument items. National Center for Biotechnology Information , U. BMC Public Health. Published online Dec Author information Article notes Copyright and License information Disclaimer. Corresponding author.
Received Aug 1; Accepted Dec This article has been cited by other articles in PMC. Associated Data Supplementary Materials Additional file 1 Young carer's problems covered by instrument items. Abstract Background 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. Results 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.
Background It is well described that chronic illness not only affects the person concerned, but also the entire familial system [ 1 - 6 ].
Table 1 Type of activities according to Dearden and Becker [ 14 ]. Open in a separate window. Young Carers in Germany In Germany, hardly anything is known about the situation of children, who are involved in caring for their relatives, and, as a consequence, there are no specific support services available.
First Edition from Fundus-Online GbR Borkert Schwarz Zerfaß
Aim At present, there are no specific assessment instruments available, which focus on young carer's situation, demands and needs. Methods The review follows the method described by Polit and Hungler [ 28 ]. Figure 1. Inclusion and Exclusion criteria The search was restricted to documents written in English or German.
Procedure Documents identified by the search were checked for relevance by one reviewer JgS. Results In sum, papers were found, of which 64 fit the inclusion criteria. Health-related quality of life in children and adolescents Quality of Life QOL is a complex, abstract, and multidimensional concept which is difficult to define and has relevance to virtually all areas of human function [ 34 ]. Development of measures HRQOL can be considered as a latent theoretical construct which cannot be measured directly but only indirectly using indicators [ 35 , 57 ].
Selecting an HRQOL instrument When selecting a HRQOL instrument, it is important to consider whether the questionnaire suits the purpose of the intervention, whether it covers important domains and dimensions relevant to the context and whether it fits the age group under study [ 30 , 72 ].
Discussion testing results. Conclusion The literature approves HRQOL to be an adequate alternative criterion to evaluate the effectiveness of a support service for young carers. Limitation The manuscript is not a systematic but an integrative review. The literature search was carried out in PubMed only. Recommendation for future research The results of the literature search show a lack of standardised measures designed for the use in young carers, and thus implicates three possible approaches: a to develop independent instruments focusing on the specific problems of young carers, b to develop specific young carers modules which can be connected to the generic core of available HRQOL-measures e.
Competing interests The authors declare that they have no competing interests. Authors' contributions JgS carried out the literature search, included and excluded documents, and wrote the manuscript. Supplementary Material Additional file 1: Young carer's problems covered by instrument items. San Francisco: Jossey-Bass; Chronic Illness and the Quality of Life.
Louis: Mosby; Families and Chronic Illness. Springhouse Pub Co; Davis Company; Family burden and quality of life. Qual Life Res. Quality of life for family caregivers of people with chronic health problems. Rehabil Nurs. Handleiding Zorgkompas Vragen naar de belasting van familieleden van dementerenden [Zorgkompas manual Questions about the burden of families in which one member suffers from dementia] Utrecht: Nederlands Instituut voor Zorg en Welzijn; Partners in Caring A briefing for professionals about young carers.
Children who care: a case for nursing intervention? Br J Nurs. Research Matters. Dearden C, Becker S. Young Carers in the UK. On the My Bahn portal, you can save and retrieve your favourite routes. You do not have any saved booking profiles. On the My Bahn portal, you can save and retrieve your favourite booking profiles. Find up-to-date information on punctuality using a train number or your booked online or mobile phone ticket.
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