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Evaluating family-centred service using a measure of parents’ perceptions (1997)

King, G A ; Rosenbaum, P L ; King, S M

Oxford BSL : Blackwell Science

Child 23 (1997), S. 0

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ISSN: 1365-2214

Source: Blackwell Publishing Journal Backfiles 1879-2005

Topics: Medicine , Psychology

Notes: This article describes the use of a newly-developed measure of parents’ perceptions of health care providers’ behaviours (Measure of Processes of Care — MPOC) to evaluate the family centredness of children’s rehabilitation services. The measure was developed with the participation of more than 1600 parents of children with chronic neurodevelopmental conditions throughout Ontario. It assesses five domains: enabling and partnership; providing general information; providing specific information about the child; coordinated and comprehensive care; and respectful and supportive care. By comparing the perceptions of parents receiving services from three different types of organizations or programmes, we demonstrated that the MPOC can pick up differences between parents in their experiences of caregiving. We also demonstrated that the MPOC is able to detect differences in how parents view the family-centredness of services provided by individual centres. The data indicate that the MPOC has appreciable utility in providing programmes and services with a description of their current level of family-centred service as perceived by parents. The strengths, limitations and potential uses of the measure in other contexts are discussed.

Type of Medium: Electronic Resource

URL: http://dx.doi.org/10.1046/j.1365-2214.1997.840840.x

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Development of a health-related quality of life instrument for use in children with spina bifida (1997)

Parkin, P. C. ; Kirpalani, H. M. ; Rosenbaum, P. L. ; [et al.]

Springer

Quality of life research 6 (1997), S. 0-0

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ISSN: 1573-2649

Keywords: Health-related quality of life ; pediatrics ; spina bifida

Source: Springer Online Journal Archives 1860-2000

Topics: Medicine

Notes: Abstract The objective of this study was to develop a spina bifida health-related quality of life (HRQOL) instrument. Items were generated through semi-structured interviews, and reduced by frequency- importance product ranking. Validity was assessed by correlating the HRQOL score with a global question concerning the child's well-being using the Spearman's rank coefficient, and the Piers-Harris Children's Self-Concept Scale (P-H) using the Pearson correlation coefficient. Reproducibility was assessed at 2-week intervals using the intra-class correlation coefficient (ICC). Field testing was undertaken in a larger sample to evaluate item-total correlation, internal consistency and construct validity. Patients taking part in the study were 329 children and adolescents with spina bifida attending two treatment centres. Over 600 items were generated. These were reduced to 47 questions and 50 questions, for children and adolescents respectively. The correlation between the HRQOL score and the global question was r=0.57, and with the P-H was 0.26 (children). These values for adolescents were 0.63, and 0.89, respectively. Reproducibility was ICC=0.78 (children) and 0.96 (adolescents). Following field testing, the questionnaire was further reduced to 44 questions (children) and 47 questions (adolescents) by eliminating questions with an item-total correlation less than 0.20. Cronbach's alphas for the final instrument were 0.93 (children) and 0.94 (adolescents), and construct validity correlations were 0.63 (children) and 0.37 (adolescents). The spina bifida HRQOL instrument has good measurement properties and may be used as a discriminative instrument. Assessment of responsiveness is necessary before using it to evaluate therapy in clinical trials.