Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)


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Nevertheless, the overall quantity of domains differs in the literature. For example, "behavioural, cultural, and psychological dimensions" as well as "a global perception of health and well-being" are regarded as important domains of HRQOL [30,36].

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Depending on the population under study, HRQOL domains consist of several various specific dimensions or factors [47]. For example, physical factors might include aspects such as selfcare, pain, or mobility, while social factors might include aspects such as friends, work, or family. Today, there is a clear agreement that instruments originally developed for adults are not applicable to assess children's HRQOL [55]. Besides a different understanding of health and health-related domains and dimensions, children's emotional and cognitive development have to be taken into account [40,56].

Therefore, measures especially for the use with children have been created. 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.

Development of measures HRQOL can be considered as a latent theoretical construct which cannot be measured directly but only indirectly using indicators [35,57]. While most of the early instruments were based on expert opinions about important HRQOL domains [50], several new questionnaires preferred the use of focus groups with children to reflect their opinions and ideals of HRQOL in order to identify relevant domains and dimensions [29,36,50,58].

However, due to children's cognitive development and rising awareness, it has to be taken into account that their concept of health changes as they mature [59]. Addressing these developmental differences, measures are created in multiple forms, each designed for a different age group [41], since item statements have to consider the cognitive developmental level of the children at different ages [41,42,51].

This means that tools such as likert scales need to be considered from the perspective of the child's ability to understand and may require adaption using pictograms or smileys [51]. In addition the number of questions Since this definition applies to HRQOL of any person, the specific aspects of a child's life lead to different extracts and weightening of domains and factors compared to adolescents or adults [41]. Regarding "social components" for example, children state "family", "peer group" and "school" to be important factors [41,49,50].


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While younger children consider "family" as the most important, adolescents highlight "peers" [49,50]. Furthermore, in comparison with adults, children have only limited capabilities to move from disadvantageous environments [36]. The first phase in the late s was concerned with the theoretical concept of HRQOL in children, espe- Page 4 of 10 page number not for citation purposes 24 2. Another possible approach is to identify relevant items which are understood by and function in comparable ways across different age groups [36].

The level of agreement between parents and children appears to depend on the observability of a certain dimension, with generally good agreement reflecting physical dimensions and poor agreement reflecting social and emotional dimensions [65,66,68]. Davis [42] states that proxy-discordance is due to differences in parent's and children's response styles, interpretation of items, and reasons for answering. Besides this, Cremeens et al.

As the process of HRQOLresearch in children went on, it has been regarded as a limitiation that measures were developed in only one country and then were translated for use in other countries without regard to cultural differences [60,61]. A translated version must therefore undergo new tests for validity and reliability before it can be relied upon for usage in that country or culture. To avoid this problem, it has been recommended to simultaneously develop a measure across different countries using focus groups [40,50,62].

Nevertheless, according to the concept of HRQOL, the individual's own subjective perception should be measured to get valid data. This is true for children as well as for adults. Recent research shows, that children as young as eight [50,70] and even at the age of six years [44,70,71] can reliably and validly self-report their HRQOL status if the questionnaire is age- and cognitive-appropriate. In detail, measures for young children should a address their writing and reading skills [51], b consider alternative assessment methods as pictograms or smileys [51], and c avoid Likert-Scales in order to prevent extreme answers [41,42].

Generic measures are used to get information about HRQOL on healthy as well as on ill children in different populations, conditions, and settings. Thus, these results can be compared across groups [29,30]. Specific measures are designed to be valid for a specific disease or population and aim to gather information on specific disease-symptoms or health-problems [63]. Compared to generic, specific measures tend to be more sensitive to changes arising from changes in conditions and may, therefore, be more effective in identifying intervention effects [41,63].

Some measures are now being developed incorporating both a generic core and disease-specific modules [29]. A recent review [30] identified a total of 94 instruments that focus on children.

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Of these, 30 are generic and 64 are disease-specific ibid. Nevertheless, authors still complain about the limited availability of specific instruments for certain diseases [29,31]. Thus, generic instruments are warranted for the use in this population.

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Because neither the child's self report nor the parent's proxy report is without bias, Eiser [66] suggests that obtaining information from both may provide the most complete picture of HRQOL. 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]. In addition, there should be sufficient psychometric testing of the instrument.

Their problems are mainly related to the social domain and its factors, followed by the emotional and mental domain. One problem is covered by the physical domain. While in the past, children often were regarded as unreliable respondents due to their cognitive immaturity, limited social experience, and continued dependency [64], early measures were based on data provided by parents or other proxies e. These Solans et al. The PubMed search added no additional instrument Page 5 of 10 page number not for citation purposes 25 2.

According to Solans et al. Each of these instruments covers nearly all domains and factors, which are relevant for young carers table 3 , and they also have a German version the KINDLR is an original German measure. 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". 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.

The PedsQL does not represent the problems "having no one to talk to", "living in secrecy" and "parental attach- Page 6 of 10 page number not for citation purposes 26 2. 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.

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". 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.

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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. 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. Regarding the problem of strong "parental attachment", the CHQ only assess the family's general "ability to get along with one another". The KINDLRasks 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.

Discussion testing results. 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.

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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.

Conclusion The literature approves HRQOL to be an adequate alternative criterion to evaluate the effectiveness of a support service for young carers. References 1. 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.

Limitation 5. 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. The literature search was carried out in PubMed only. Only items of the four instruments with the best published psychometric testing results where analysed. 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.

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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. SMB and WS revised it critically for important intellectual content. All authors read and approved the final manuscript.

Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)
Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)
Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)
Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)
Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)
Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)
Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition) Wenn Eltern Pflege brauchen: So begleiten Sie Ihre Mutter und Ihren Vater (German Edition)

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