An observational study in Cerebral Palsy, Muscular Dystrophies and Autism Spectrum Disorder, sponsored by Hacettepe University. Status unknown. Open to participants aged 5 Years to 25 Years. Per ClinicalTrials.gov, last updated 2018-04-27.
Sponsored by Hacettepe University · Observational
Family-centred care (FCS) is considered the best practice in providing rehabilitation to children with disabilities and special needs. Family-centred care has been described as a partnership approach to healthcare decision making. As a philosophy of healthcare, today many multidisciplinary healthcare facilities have organized their services according to a family-centred approach. TheMeasure of Processes of Care (MPOC) is the most widely used instrument to assess parents' self-reported experiences of family-centred behaviours of rehabilitation services providers. The aim of this study is to translate the scale to Turkish and to determine validity and reliability of The Measure of Processes of Care (MPOC 56- 20- SP)
The MPOC is a questionnaire designed to find out what parents of children with disabilities think of the services they and their children receive and how these services affect their psychosocial outcome. MPOC exists in two versions: the 56-item version was published in 1995 and the MPOC-20 in 2004. The20-item version was developed due to disadvantage of the longer version, because its completion can be very time consuming and the consequences of low respondent percentages . King and colleagues assert that the56-item MPOC is useful for research, while the MPOC-20 is better applied as a measure of parents' perceptions of the elements of FCS. The 20 items in the short version are distributed among the same five scales as in the MPOC-56. This ensures that the MPOC-56/20 captures aspects of care and services that have most importance for parents. The items are included in one of the following five scales:
1 Enabling and partnership; 2 Providing general information; 3 Providing specific information about the child; 4 Coordinated and comprehensive care; 5 Respectful and supportive care.
The Measure of Processes of Care for Service Providers (MPOC-SP) was developed to assess FCS from the perspective of professionals. The MPOC-SP has also been used in many different studies with different populations.
548 studies on the registry are indexed under Muscular Dystrophies; 89 are open to participants now.
This study's planned enrollment of 300 is above the median of 69 across 179 observational studies indexed under Muscular Dystrophies.
Browse Muscular Dystrophies studies →Hacettepe University is the lead sponsor of 983 studies on the registry; 212 are open to participants now.
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The subjects will be recruited from children who lives in Turkey and, attend special education centers and hospitals.
Exclusion Criteria:
Parents will complete the The Measure of Processes of Care 56- 20 (MPOC 56-20) questionary Service providers will complete The Measure of Processes of Care for Service Providers (MPOC-SP)
Other: Participation
The mpoc 56 and mpoc 20 will be field-tested with a sample of 300 parents of children with disabilities residing in the Turkey. Professionals working with children with disabilities will be assessed with MPOC SP questionnaires
The Measure of Processes of Care (MPOC- 56)
Assessing of the participation level of children. The Measure of processes of care-56 (MPOC 56) will be applied for once for 300 participants. The MPOC consists of 56 questions, which are related to important aspects of care that are closely related with satisfaction of parents. The 56 items are divided into five factorially defined subscales: Enabling and Partnership (EP), ProvidingGeneral Information (PGI), Providing Specific Informationabout the Child (PSI), Coordinated and Comprehensive Care(CCC) and Respectful and Supportive Care (RS). The items are answered on a seven-point scale ranging from 7 ('to a very greatextent') to 1 ('not at all'), with a 0 for 'Not applicable'. A higherscore reflects a more favourable judgement of the care process.
Time frame: MPOC 56 was administered twice within a period of 1 week to participants in order to test the test-retest reliability of the scale.
The Measure of Processes of Care 20 (MPOC- 20)
The measure of processes of care consists of 20 questions, which are related to important aspects of care that are closely related with satisfaction of parents. The 20 items are divided into five factorially defined subscales: Enabling and Partnership (EP), ProvidingGeneral Information (PGI), Providing Specific Informationabout the Child (PSI), Coordinated and Comprehensive Care(CCC) and Respectful and Supportive Care (RS). The items are answered on a seven-point scale ranging from 7 ('to a very greatextent') to 1 ('not at all'), with a 0 for 'Not applicable'. A higherscore reflects a more favourable judgement of the care process.
Time frame: MPOC 20 was administered twice within a period of 1 week to participants in order to test the test-retest reliability of the scale.
The Measure of Processes of Care for services providers (MPOC- SP)
Self-assessment tool for pediatric service providers that measures the extent to which the services they provide are family-centred. The Measure of Processes of Care for Service Providers consists of 27 items categorized into four scales: (1) Showing Interpersonal Sensitivity (SIS), (2) Providing General Information (PGI), (3) Communicating Specific Information about the Child (CSI), and (4) Treating People Respectfully (TPR), .All response options are labelled, ranging from 1 ('never') to 7 ('to a great extent'). A higherscore reflects a more favourable judgement of the care process.
Time frame: MPOC SP was administered twice within a period of 1 week to participants in order to test the test-retest reliability of the scale.
Child Health Questionnaire - Parent Form 50
Assessing health-related quality of life of children
Time frame: At baseline]
No study locations are listed for this record.
Plan to share: Undecided
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Hacettepe University