Partizipation – theoretische Grundlagen und aktuelle Messinstrumente im Kindes- und Jugendalter

Zusammenfassung

Hintergrund: Soziale Partizipation ist ein zentrales Ziel rehabilitativer Prozesse bei Kindern und Jugendlichen. Verfügbare Mess- und Evaluationsinstrumente sind dem Problem ausgesetzt, dass die theoretische Fundierung des Konstruktes Partizipation nicht abschließend geklärt und eine Abgrenzung zur Aktivität in der International Classification of Functioning, Disabilities and Health (ICF/ICF-CY) der WHO nicht ausreichend vorgenommen ist.

Ziel der Arbeit: Die Diskussionslinien zum Begriffsverständnis von Partizipation aus rehabilitationswissenschaftlicher Perspektive werden in dieser Arbeit nachgezeichnet und Folgerungen für die Praxis und die Wissenschaft dargestellt.

Material und Methoden: Es wurde eine systematische Literaturanalyse in MEDLINE, CINAHL, PsycINFO, ERIC und EMBASE (August 2014) zur Identifizierung von Partizipationsmessinstrumente im Kindes- und Jugendalter durchgeführt.

Ergebnisse: Den verfügbaren Messinstrumenten liegen sehr unterschiedliche Definitionen von Partizipation zugrunde. Die Diskussion um den Begriff scheint noch nicht abgeschlossen. Eine Hauptforderung ist die bessere Operationalisierung von Aktivität und Partizipation gemäß ICF/ICF-CY in den Messinstrumenten.

Diskussion: Vor der Anwendung eines bereits bestehenden Messinstrumentes sollte die Übertragbarkeit der Messung auf den eigenen Kontext geprüft werden. Sowohl vor dem Einsatz aber auch vor der Neuentwicklung von Messinstrumenten sollten die theoretischen Annahmen zur Partizipation und die Verbindung zur ICF/ICF-CY ebenso wie die Ziele des Messinstrumentes jeweils genau geklärt werden.

Abstract

Background: For children and adolescents social participation is a central goal of rehabilitation processes. Available measurements and evaluation tools are exposed to the problem that the theoretical foundation of the construct of participation is still unclear as well as differentiation from activity in the International Classification of Functioning, Disabilities and Health (ICF/ICF-CY) of the WHO is not made sufficiently.

Objectives: The objectives of this article were (1) to illustrate the scientific discussions on the term and understanding of participation from rehabilitation science perspectives and (2) to conclude implications for practice and science.

Materials and Methods: A systematic search for participation instruments was performed in MEDLINE, CINAHL, PsycINFO, ERIC und EMBASE in August 2014.

Results: The available instruments are based on very different definitions of participation. The discussion about the term seems to be not yet complete. A major demand is a better operationalization of activity and participation according to the ICF/ICF-CY in the instruments.

Conclusions: Before using an existing instrument, the transferability should be tested for the own context. The theoretical assumptions of participation in conjunction to ICF/ICF-CY as well as the objectives of the instrument should all be clearly understood before using an existing instrument but also before the development of new instruments.

Schlüsselwörter

Partizipation - ICF-CY - Messinstrument - Kind - Jugendlicher

Key words

participation - ICF-CY - measurement - child - youth

• Literatur

• 1 Adolfsson M, Malmqvist J, Pless M et al. Identifying child functioning from an ICF-CY perspective: everyday life situations explored in measures of participation. Disabil Rehabil 2011; 33: 1230-1244
• 2 Anthony SJ, Selkirk E, Sung L et al. Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model. Qual Life Res 2014; 23: 771-789
• 3 Bedell G. Further validation of the Child and Adolescent Scale of Participation (CASP). Dev Neurorehabil 2009; 12: 342-351
• 4 Bornbaum CC, Doyle PC, Skarakis-Doyle E et al. A critical exploration of the International Classification of Functioning, Disability, and Health (ICF) framework from the perspective of oncology: recommendations for revision. J Multidiscip Healthc 2013; 6: 75-86
• 5 Bronfenbrenner U, Lüscher K. Die Ökologie der menschlichen Entwicklung: Natürliche und geplante Experimente, Ungekürzte Ausg. Frankfurt am Main: Fischer; 1993
• 6 Chiarello LA, Palisano RJ, Orlin MN et al. Understanding Participation of Preschool-Age Children With Cerebral Palsy. Journal of Early Intervention 2012; 34: 3-19
• 7 Chien C, Rodger S, Copley J et al. Comparative content review of children's participation measures using the International Classification of Functioning, Disability and Health-Children and Youth. Arch Phys Med Rehabil 2014; 95: 141-152
• 8 Chow MY, Morrow AM, Cooper R et al. Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: a systematic review. Qual Life Res 2013; 22: 2183-2200
• 9 Cieza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Quality of life research an international journal of quality of life aspects of treatment, care and rehabilitation 2005; 14: 1225-1237
• 10 Colver A. Quality of life and participation. Dev Med Child Neurol 2009; 51: 656-659
• 11 Coster W, Bedell G, Law M et al. Psychometric evaluation of the Participation and Environment Measure for Children and Youth. Dev Med Child Neurol 2011; 53: 1030-1037
• 12 Coster W, Khetani MA. Measuring participation of children with disabilities: issues and challenges. Disabil Rehabil 2008; 30: 639-648
• 13 Davis E, Waters E, Mackinnon A et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006; 48: 311-318
• 14 Devision of Mental Health and Prevention of Substance Abuse . World Health Organization. WHOQOL. Measuring Quality of life. Geneva: 1997
• 15 Devision of Mental Health . World Health Organization. Measurement of Quality of Life in Children. Geneva: 1994
• 16 Dijkers MP. Issues in the conceptualization and measurement of participation: an overview. Arch Phys Med Rehabil 2010; 91: S5-S16
• 17 Farin E. Teilhabe von Patienten an Lebensbereichen als Gegenstand der Versorgungsforschung: Versorgungsforschung: Beziehung zu verwandten Konstrukten und Übersicht über vorhandene Messverfahren. Gesundheitswesen 2011; 73: e1-e11
• 18 Fayed N, Schiariti V, Bostan C et al. Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions. Qual Life Res 2011; 20: 1247-1258
• 19 Gandhi PK, Thompson LA, Tuli SY et al. Developing item banks for measuring pediatric generic health-related quality of life: an application of the International Classification of Functioning, Disability and Health for Children and Youth and item response theory. PloS one 2014; 9: e107771
• 20 Granlund M. Participation--challenges in conceptualization, measurement and intervention. Child Care Health Dev 2013; 39: 470-473
• 21 Granlund M, Arvidsson P, Niia A et al. Differentiating activity and participation of children and youth with disability in Sweden: a third qualifier in the International Classification of Functioning, Disability, and Health for Children and Youth?. Arch Phys Med Rehabil 2012; 91: S84-S96
• 22 Hartung S. Partizipation – eine relevante Größe für individuelle Gesundheit?: Auf der Suche nach Erklärungsmodellen für Zusammenhänge zwischen Partizipation und Gesundheit. Berlin: 2011
• 23 Heinemann AW. Measurement of participation in rehabilitation research. Arch Phys Med Rehabil 2010; 91: S1-S4
• 24 Heinemann AW, Tulsky D, Dijkers M et al. Issues in participation measurement in research and clinical applications. Arch Phys Med Rehabil 2010; 91: S72-S76
• 25 Higginson IJ, Carr AJ. Measuring quality of life: Using quality of life measures in the clinical setting. BMJ 2001; 322: 1297-1300
• 26 Hollenweger J, Kraus de Camargo O. ICF-CY: Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit bei Kindern und Jugendlichen, Korrigierter Nachdr. 2012 der 1. Aufl. 2011. Bern: Huber; 2012
• 27 King G. Children’s assessment of participation and enjoyment & preferences for activities of children: CAPE/PAC; manual. San Antonio, Tex: Pearson; 2004
• 28 King G. Perspectives on measuring participation: going forward. Child Care Health Dev 2013; 39: 466-469
• 29 King G, McDougall J, Dewit D et al. Predictors of Change Over Time in the Activity Participation of Children and Youth with Physical Disabilities. Children’s health care journal of the Association for the Care of Children’s Health 2009; 38: 321-351
• 30 Matza LS, Swensen AR, Flood EM et al. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 2004; 7: 79-92
• 31 Maxwell G. Bringing more to participation: Participation in school activities of persons with disability within the framework of the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Dissertation. Jönkoping 2012
• 32 McConachie H, Colver AF, Forsyth RJ et al. Participation of disabled children: how should it be characterised and measured?. Disabil Rehabil 2006; 28: 1157-1164
• 33 McDougall J, Wright V, Rosenbaum P. The ICF model of functioning and disability: incorporating quality of life and human development. Dev Neurorehabil 2010; 13: 204-211
• 34 Mokkink LB, Terwee CB, Knol DL et al. The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: a clarification of its content. BMC Med Res Methodol 2010; 10: 22
• 35 Moons P, Budts W, de Geest S. Critique on the conceptualisation of quality of life: a review and evaluation of different conceptual approaches. Int J Nurs Stud 2006; 43: 891-901
• 36 Nussbaum MC. Creating capabilities: The human development approach. Cambridge, Mass.: Belknap Press of Harvard University Press; 2011
• 37 Petersen-Ewert C, Erhart M, Ravens-Sieberer U. Assessing health-related quality of life in European children and adolescents. Neurosci Biobehav Rev 2011; 35: 1752-1756
• 38 Phillips RL, Olds T, Boshoff K et al. Measuring activity and participation in children and adolescents with disabilities: a literature review of available instruments. Aust Occup Ther J 2013; 60: 288-300
• 39 Poon KK. The activities and participation of adolescents with autism spectrum disorders in Singapore: findings from an ICF-based instrument. J Intellect Disabil Res 2011; 55: 790-800
• 40 Raghavendra P. Participation of children with disabilities: measuring subjective and objective outcomes. Child Care Health Dev 2013; 39: 461-465
• 41 Rainey L, van Nispen R, van der Zee C et al. Measurement properties of questionnaires assessing participation in children and adolescents with a disability: a systematic review. Qual Life Res 2014; 23: 2793-2808
• 42 Rapp M, Meine H, Thyen U. Partizipation von 8- bis 12-jährigen Kindern mit Zerebralparese in Schleswig-Holstein. Monatsschr Kinderheilkd 2010; 158: 1102-1112
• 43 Ravens-Sieberer U, Erhart M, Wille N et al. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics 2006; 24: 1199-1220
• 44 Rohrmann E. Zu Behinderungen des Rechts auf Teilhabe in der Sozialpolitik. In: Wacker E, Bosse I, Dittrich T, Niehoff U, Schäfers M, Wansing G, Zalfen B. (Hrsg.) Teilhabe: Wir wollen mehr als nur dabei sein. 1. Aufl Marburg: Lebenshilfe-Verl; 2005: 261-272
• 45 Rosenblum S, Sachs D, Schreuer N. Reliability and validity of the Children’s Leisure Assessment Scale. Am J Occup Ther 2010; 64: 633-641
• 46 Schor Edward L. Childrens Health and the Assessment of Health-Related Quality of Life. In: Dennis D. (Hrsg.) Measuring Health-Related Quality of Life in Children and Adolescents. Mahwah (NJ): Lawrence Hillbaum; 1998: 25-39
• 47 Schuntermann MF. 10 Jahre ICF – Erfahrungen und Probleme. Hallesche Beiträge zu den Gesundheits- und Pflegewissenschaften 2011; 10: 1-7
• 48 Solans M, Pane S, Estrada M et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2008; 11: 742-764
• 49 Sommer R, Bullinger M, Rohenkohl A et al. Linking a short-stature specific health-related quality of life measure (QoLISSY) to the International Classification of Functioning – Children and Youth (ICF-CY). Disability and rehabilitation 2015; 37: 439-446
• 50 Tuffrey C, Bateman BJ, Colver AC. The Questionnaire of Young People’s Participation (QYPP): a new measure of participation frequency for disabled young people. Child Care Health Dev 2013; 39: 500-511
• 51 Washington LA, Wilson S, Engel JM et al. Development and preliminary evaluation of a pediatric measure of community integration: The Pediatric Community Participation Questionnaire (PCPQ). Rehabilitation Psychology 2007; 52: 241-245
• 52 Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Arch Phys Med Rehabil 2009; 90: S22-S35
• 53 World Health Organization . International classification of functioning, disability and health: ICF. Geneva: World Health Organization; 2001