The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: An integrative review of the literature

BMC Public Health

Volumn 8, Issue , 2008, Pages

  Schlarmann, Jörg Große ^a   Metzing Blau, Sabine ^a   Schnepp, Wilfried ^a  

^a UNIVERSITY OF WITTEN HERDECKE   (Germany)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; CAREGIVER; CHILD; CHILD PSYCHOLOGY; FAMILY; GERMANY; HUMAN; INSTRUMENTATION; LONELINESS; METHODOLOGY; OUTCOME ASSESSMENT; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUALITY OF LIFE; QUESTIONNAIRE; REVIEW; SOCIAL ISOLATION; SOCIAL SUPPORT;

ADOLESCENT; ADOLESCENT PSYCHOLOGY; CAREGIVERS; CHILD; CHILD OF IMPAIRED PARENTS; CHILD PSYCHOLOGY; FAMILY; GERMANY; HUMANS; LONELINESS; OUTCOME ASSESSMENT (HEALTH CARE); PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; SOCIAL ISOLATION; SOCIAL SUPPORT;

EID: 58249098535     PISSN: None     EISSN: 14712458     Source Type: Journal    
DOI: 10.1186/1471-2458-8-414     Document Type: Article

References (76)

1. J Corbin AL Strauss, Unending Work and Care: Managing Chronic Illness at Home San Francisco: Jossey-Bass 1988
2. AL Strauss B Glaser, Chronic Illness and the Quality of Life St. Louis: Mosby 1975
3. LM Wright M Leahey, Families and Chronic Illness Springhouse Pub Co 1987
4. SMH Hanson JR Kaakinen V Gedaly-Duff, Family Health Care Nursing: Theory, Practice, and Research F.A. Davis Company 1996
5. W Schnepp, Familiale Sorge in der Gruppe der russlanddeutschen Spätaussiedler [Familial care in the group of russo-german resettlers] Bern: Hans Huber 2002
6. Bewältigung chronischer Krankheit - Herausforderungen für die Pflege [Coping chronical illness - challenges for nursing]. D Schaeffer M Moers, Handbuch Pflegewissenschaft [Handbook Nursing Science] Weinheim: Juventa, Rennen-Allhoff B, Schaeffer D, 2000
7. Family burden and quality of life. E Sales, Qual Life Res 2003 12 Suppl 1 33 41 10.1023/A:1023513218433 12803309
8. Quality of life for family caregivers of people with chronic health problems. C Canam S Acorn, Rehabil Nurs 1999 24 5 192 196 10754909
9. M Blom M Duijnstee, 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 1996
10. C Dearden S Becker J Aldridge, Partners in Caring. A briefing for professionals about young carers Loughborough: YCRG, Loughborough University 1994
11. Children who care: a case for nursing intervention? C Dearden S Becker J Aldridge, Br J Nurs 1995 4 12 698 701 7580076
12. Census 2001. Office of National Statistics, http://www.statistics.gov.uk/ census2001/
13. Carers. S Becker, Research Matters 2004 August special issue 5 10
14. C Dearden S Becker, Young Carers in the UK London: Carers National Association 1998
15. C Dearden S Becker, Young Carers in the UK. The 2004 Report London: Carers UK 2004
16. J Aldridge S Becker, Children who care - inside the world of young carers Leicester: Department of Social Sciences, Loughborough University 1993
17. C Dearden S Becker, Meeting Young Carers's Needs: An Evaluation of Shefield Young Carers Project Loughborough: YCRG, Loughborough University 2000
18. J Frank, Couldn't care more. A study of young carers and their needs London: The Children's Society 1995
19. B Newton S Becker, Young Carers in Southwark. The HiddenFace of Community Care Loughborough: YCRG, Loughborough University 1996
20. Youngsters caring for adults. M Gates N Lackey, J Nurs Scholarsh 1998 30 11 15 10.1111/j.1547-5069.1998.tb01229.x
21. Vorstellungen der Kinder über die psychische Erkrankung ihrer Eltern. Eine explorative Studie [Imaginations of children about the mental illness of their parents. An explorative study]. A Lenz, Prax Kinderpsychol Kinderpsychiatr 2005 54 5 382 398 16032948
22. R Bonney S Becker, Missing persons and missing helpers: young carers, the family and the faith community Leicester: Young Carers Research Group, Loughborough University 1995
23. C Dearden S Becker, Children in Care, Children who Care: Parental Illness and Disability and the Child Care System Loughborough: YCRG, Loughborough University 1997
24. YoungCarer.com. Young Carers Initiative, 2008 http://www.youngcarer.com
25. S Metzing, Kinder und Jugendliche als pflegende Angehörige. Erleben und Gestalten familialer Pflege [Children and adolescents as informal carer. Experience and construction of familial care] Bern: Hans Huber 2007
26. Young carers in Germany: to live on as normal as possible - a grounded theory study. S Metzing W Schnepp, BMC Nurs 2008 7 1 15 10.1186/1472-6955-7-15 19108719
27. Der Pflegeforschungsverbund NRW. Optimierung der Bewältigung chronischer Krankheit [Nursing Research Network North-Rhine-Westphalia. Improvement of coping chronical illness]. D Schaeffer, Pflege und Gesellschaft 2005 10 45 49
28. DF Polit BP Hungler, Nursing Research. Principles and Methods Philadelphia: Lippincott 6 1999
29. Children's quality of life assessment: A review of generic and health-related quality of life measures completed by children and adolescents. L Harding, Clin Psychol Psychother 2001 8 79 96 10.1002/cpp.275
30. Health-Related Quality of Life Measurement in Children and Adolescents: A Systematic Review of Generic and Disease-Specific Instruments. M Solans S Pane MD Estrada V Serra-Sutton S Berra M Herdman J Alonso L Rajmil, Value Health 2007, Dec 17. 18179668
31. A review of measures of quality of life for children with chronic illness. C Eiser R Morse, Arch Dis Child 2001 84 3 205 211 11207164 10.1136/adc.84.3.205
32. Evaluation health-related quality-of-ife studies in pediatric populations: some conceptual, methodological and developmental considerations and recent applications. M De Civita D Regier A Alamgir, Pharmacoeconomics 2005 23 659 685 10.2165/00019053-200523070-00003 15987225
33. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. U Ravens-Sieberer M Erhart N Wille, Pharmacoeconomics 2006 24 1199 1220 10.2165/00019053-200624120-00005 17129075
34. Enhancing Quality of Life in the Population at Large. DR Evans, Social Indicators Research 1994 33 47 88 10.1007/BF01078958
35. Lebensqualität als Outcomekriterium in den Gesundheitswissenschafen. Ein Beitrag zur Fragebogenentwicklung für Kinder und Jugendliche in Deutschland [Quality of Life as an outcome criterion in health sciences. A contribution for the development of questionnaires in children and adolescents in Germany]. U von Rüden, PhD thesis Institut für Gesundheitswissenschaften [Institute of Health Sciences], Technische Universität Berlin 2007
36. The KIDSCREEN Group Europe, The KIDSCREEN Questionnaires - Quality of Life questionnaires for children and adolescents. Handbook Lengerich: Pabst Science Publishers 2006
37. Stand der Forschung zur gesundheitsbezogenen Lebensqualität von Kindern. Eine Literaturanalyse [State of research of health-related quality of life in children. A review of the literature]. M Bullinger U Ravens-Sieberer, Präv Rehab 1995 7 3 106 121
38. PM Fayes D Machin, Quality of life: Assessment, analysis, and interpretation New York: Wiley 2000
39. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. U Ravens-Sieberer M Bullinger, Qual Life Res 1998 7 399 407 10.1023/A: 1008853819715 9691720
40. KIDSCREEN-52, quality-of-life measure for children and adolescents. U Ravens-Sieberer A Gosch L Rajmil M Erhart J Bruil W Duer P Auquier M Power T Abel L Czemy J Mazur A Czimbalmos Y Tountas C Hagquist J Kilroe The European KIDSCREEN Group, Expert Rev Pharmacoeconomics Outcomes Res 2005 5 3 353 364 10.1586/14737167.5.3.353
41. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. L Matza A Swensen E Flood K Secnik N Leidy, Value Health 2004 7 79 92 10.1111/j.1524-4733.2004.71273.x 14720133
42. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. E Davis, Qual Life Res 2007 16 5 863 871 10.1007/s11136-007-9187-3 17351822
43. Health-related quality of life: gender differences in childhood and adolescence. C Bisegger B Cloetta U von Rüden T Abel U Ravens-Sieberer The European KIDSCREEN Group, Soz Praventivmed 2005 50 281 291 10.1007/s00038-005- 4094-2 16300172
44. How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8.591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. JW Varni CA Limbers TM Burwinkle, Health Qual Life Outcomes 2007 5 1 17201920 10.1186/1477-7525-5-1
45. Critical review of the international assessments of health-related quality of life. R Anderson N Aaronson D Wilkin, Qual Life Res 1993 2 6 369 395 10.1007/BF00422215 8161975
46. World Health Organization, Constitution of the World Health Organization Geneva: WHO 1948
47. Measuring quality of life. MEM Jenney S Campbell, Arch Dis Child 1997 77 347 354 9389243 10.1136/adc.77.4.347
48. Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). WHO Quality of Life Group, Qual Life Res 1993 2 153 159 10.1007/BF00435734 8518769
49. Adolescent quality of life, part I: conceptual and measurement model. T Edwards C Huebner F Connell D Patrick, J Adolesc 2002 25 3 275 286 10.1006/jado.2002.0470 12128038
50. The Use of Focus Groups in the Development of the KIDSCREEN HRQL Questionnaire. S Detmar J Bruil U Ravens-Sieberer A Gosch C Bisegger The European KIDSCREEN Group, Qual Life Res 2006 15 1 6 10.1007/s11136-006-0022-z
51. Quality of life in children and adolescents: a European public health perspective. U Ravens-Sieberer A Gosch T Abel P Auquier BM Bellach J Bruil W Dür M Power L Rajmil The European KIDSCREEN Group, Soz Praventivmed 2001 46 294 302 10.1007/BF01321080 11759336
52. Validation of a French health-related quality of life instrument for adolescents: the VSP-A. MC Simeoni P Auquier S Antoniotti C Sapin J San Marco, Qual Life Res 2000 9 4 393 403 10.1023/A:1008957104322 11131932
53. Social class gradients in health during adolescent. B Starfield A Riley W Witt J Robertson, J Epidemiol Community Health 2002 56 354 361 11964432 10.1136/jech.56.5.354
54. Children's quality of life measures. C Eiser, Arch Dis Child 1997 77 350 354 9389244 10.1136/adc.77.4.350
55. Child/parent-assessed population health outcome measures: a structured review. L Schmidt A Garrat R Fitzpatrick, Child Care Health Dev 2002 28 3 227 237 10.1046/j.1365-2214.2002.00266.x 12064288
56. Assessment of Health-Related Quality of life in Children and Adolescents: An Integrative Review. LE Spieth CV Harris, J Pediatr Psychol 1996 21 2 175 193 10.1093/jpepsy/21.2.175 8920152
57. Quality of life measurement in children and adolescents: issues, instruments, and applications. J Wallander M Schmitt H Koot, J Clin Psychol 2001 57 571 585 10.1002/jclp.1029 11255207
58. U Ravens-Sieberer M Bullinger, KINDLr-Manual 2000
59. Measuring quality of life. C Eiser MEM Jenney, Arch Dis Child 2007 92 348 350 10.1136/adc.2005.086405 17376942
60. Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. J Landgraf E Maunsell K Speechley M Bullinger S Campbell L Abetz J Ware, Qual Life Res 1998 7 5 433 445 10.1023/A:1008810004694 9691723
61. Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. R Felder-Puig E Frey K Proksch JW Varni H Gadner R Topf, Qual Life Res 2004 13 223 234 10.1023/B:QURE.0000015305.44181.e3 15058802
62. The development of the World Health Organization Quality of Life Assessment Instrument (WHOQOL). WHO Quality of Life Group, Quality of Life Assessment: International Perspectives Heidelberg: Springer, Orley J, Kuyken W, 1994
63. Comparative responsiveness of generic and specific quality-of-life instruments. S Wiebe G Guyatt B Weaver, J Clin Epidemiol 2003 56 52 60 10.1016/S0895-4356(02)00537-1 12589870
64. The measuremt of quality of life in young children. C Eiser H Mohay R Morse, Child Care Health Dev 2000 26 401 413 10.1046/j.1365-2214.2000.00154.x 10998003
65. Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Vogels Verrips AGH A den Ouden N Paneth S Verloove-Vanhorick, Child Care Health Dev 2000 26 6 457 469 10.1046/j.1365-2214.2000.00181.x 11091262
66. Can parents rate their child's health-related quality of life? Results of a systematic review. C Eiser, Qual Life Res 2001 10 347 357 10.1023/A:1012253723272 11763247
67. How well do parents know their children? Implications for proxy responding of child health-related quality of life. A Jokovic D Locker G Guyatt, Qual Life Res 2004 13 1297 1304 10.1023/B:QURE.0000037480.65972.eb 15473508
68. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory(TM) 4.0. J Cremeens C Eiser M Blades, Health Qual Life Outcomes 2006 4 58 16942613
69. Quality of Life as reported by school children and their parents: a cross-sectional survey. T Jozefiak B Larsson L Wichstrom F Mattejat U Ravens-Sieberer, Health Qual Life Outcomes 2008 6 34 18489777
70. Evidence that school-age children can self-report on their health. A Riley, Ambul Pediatr 2004 4 4 371 376 10.1367/A03-178R.1 15264962
71. Predictors of children's healthcare use: the value of child versus parental perspectives on healthcare needs. C Forrest A Riley P Vivier, Med Care 2004 42 232 238 10.1097/01.mlr.0000115196.02425.05 15076822
72. Generic Health-related Quality of Life Instruments in Children and Adolescents: A Qualitative Analysis of Content. L Rajmil M Herdman M Fernández de Sanmamed S Detmar J Bruil U Ravens-Sieberer M Bullinger MC Simeoni P Auquier The KIDSCREEN Group, J Adolesc Health 2004 34 37 45 10.1016/S1054-139X(03)00249-0 14706404
73. JM Landgraf L Abetz J Ware, The CHQ User's Manual Boston: The Health Institute, New England Medical Center 1 1996
74. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 generic core scales in healthy and patient populations. JW Varni M Seid P Kurtin, Med Care 2001 39 800 812 10.1097/00005650-200108000- 00006 11468499
75. The Development of an Impact-on-Family-Scale: Preliminary Findings. R Stein C Riessman, Med Care 1980 4 465 472 10.1097/00005650-198004000-00010
76. Der Familien-Belastungs-Fragebogen (FaBel-Fragebogen). Testung und Validierung der deutschen Version der "Impact on Family Scale" bei Familien mit behinderten Kindern [The testing and validation of the German version of the "Impact on Family Scale" in families with children with disabilities]. U Ravens-Sieberer M Morfeld R Stein D Jessop M Bullinger U Thyen, Psychother Psychosom Med Psychol 2001 51 9/10 384 393 10.1055/s-2001-16899 11533885