<ddi:DDIInstance xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="ddi:instance:3_3 http://ddialliance.org/Specification/DDI-Lifecycle/3.3/XMLSchema/instance.xsd" xmlns:xsd="http://www.w3.org/2001/XMLSchema" xmlns:ddi="ddi:instance:3_3" xmlns:r="ddi:reusable:3_3" xmlns:s="ddi:studyunit:3_3" xmlns:d="ddi:datacollection:3_3" xmlns:a="ddi:archive:3_3" xmlns:c="ddi:conceptualcomponent:3_3" xmlns:cm="ddi:comparative:3_3" xmlns:g="ddi:group:3_3" xmlns:l="ddi:logicalproduct:3_3" xmlns:p="ddi:physicaldataproduct:3_3" xmlns:pi="ddi:physicalinstance:3_3" xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:xhtml="http://www.w3.org/1999/xhtml" xmlns:xml="http://www.w3.org/XML/1998/namespace" isMaintainable="true" scopeOfUniqueness="Agency">
  <r:URN>urn:ddi:se.researchdata:2021-331-1:1</r:URN>
  <r:Agency>SND</r:Agency>
  <r:ID>2021-331-1</r:ID>
  <r:Version>1</r:Version>
  <g:ResourcePackage>
    <r:URN>urn:ddi:se.researchdata:2021-331-1.ResourcePackage:2.0</r:URN>
    <r:OtherMaterialScheme>
      <r:URN>urn:ddi:se.researchdata:2021-331-1.OtherMaterialScheme:2.0</r:URN>
      <r:OtherMaterial>
        <r:URN>urn:ddi:se.researchdata:2020-178-1:1.1</r:URN>
        <r:TypeOfMaterial>Dataset</r:TypeOfMaterial>
        <r:Citation>
          <r:Title>
            <r:String xml:lang="sv">Excessive premature mortality among children with cerebral palsy in rural Uganda: a longitudinal, population-based study</r:String>
            <r:String xml:lang="en">Excessive premature mortality among children with cerebral palsy in rural Uganda: a longitudinal, population-based study</r:String>
          </r:Title>
        </r:Citation>
        <r:ExternalURLReference>https://snd.se/catalogue/dataset/2020-178-1</r:ExternalURLReference>
      </r:OtherMaterial>
      <r:OtherMaterial>
        <r:URN>urn:ddi:se.researchdata:2021-68-1:1.1</r:URN>
        <r:TypeOfMaterial>Dataset</r:TypeOfMaterial>
        <r:Citation>
          <r:Title>
            <r:String xml:lang="sv">Functional development in children and youth with cerebral palsy in Uganda</r:String>
            <r:String xml:lang="en">Functional development in children and youth with cerebral palsy in Uganda</r:String>
          </r:Title>
        </r:Citation>
        <r:ExternalURLReference>https://snd.se/catalogue/dataset/2021-68-1</r:ExternalURLReference>
      </r:OtherMaterial>
    </r:OtherMaterialScheme>
    <a:OrganizationScheme>
      <r:URN>urn:ddi:se.researchdata:2021-331-1.OrganizationScheme-0:2.0</r:URN>
      <a:Individual>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.Individual-0:2.0</r:URN>
        <r:UserAttributePair>
          <r:AttributeKey>affiliation</r:AttributeKey>
          <r:AttributeValue>Department of Women's and Children's Health, Karolinska Institutet</r:AttributeValue>
        </r:UserAttributePair>
        <a:IndividualIdentification>
          <a:IndividualName>
            <a:FirstGiven>Carin</a:FirstGiven>
            <a:LastFamily>Andrews</a:LastFamily>
            <a:FullName>
              <r:String>Carin Andrews</r:String>
            </a:FullName>
          </a:IndividualName>
          <a:ResearcherID>
            <a:TypeOfID>ORCID</a:TypeOfID>
            <a:ResearcherIdentification>0000-0002-9928-4423</a:ResearcherIdentification>
          </a:ResearcherID>
        </a:IndividualIdentification>
      </a:Individual>
      <a:Individual>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.Individual-0:2.0</r:URN>
        <r:UserAttributePair>
          <r:AttributeKey>affiliation</r:AttributeKey>
          <r:AttributeValue>Department of Pediatrics and Child Health, Makerere University, Kampala, Uganda</r:AttributeValue>
        </r:UserAttributePair>
        <a:IndividualIdentification>
          <a:IndividualName>
            <a:FirstGiven>Angelina</a:FirstGiven>
            <a:LastFamily>Kakooza-Mwesige</a:LastFamily>
            <a:FullName>
              <r:String>Angelina Kakooza-Mwesige</r:String>
            </a:FullName>
          </a:IndividualName>
          <a:ResearcherID>
            <a:TypeOfID>ORCID</a:TypeOfID>
            <a:ResearcherIdentification>0000-0002-1189-3671</a:ResearcherIdentification>
          </a:ResearcherID>
        </a:IndividualIdentification>
      </a:Individual>
      <a:Individual>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.Individual-0:2.0</r:URN>
        <r:UserAttributePair>
          <r:AttributeKey>affiliation</r:AttributeKey>
          <r:AttributeValue>Department of Women's and Children's Health, Karolinska Institutet</r:AttributeValue>
        </r:UserAttributePair>
        <a:IndividualIdentification>
          <a:IndividualName>
            <a:FirstGiven>Hans</a:FirstGiven>
            <a:LastFamily>Forssberg</a:LastFamily>
            <a:FullName>
              <r:String>Hans Forssberg</r:String>
            </a:FullName>
          </a:IndividualName>
          <a:ResearcherID>
            <a:TypeOfID>ORCID</a:TypeOfID>
            <a:ResearcherIdentification>0000-0003-2069-6618</a:ResearcherIdentification>
          </a:ResearcherID>
        </a:IndividualIdentification>
      </a:Individual>
    </a:OrganizationScheme>
  </g:ResourcePackage>
  <s:StudyUnit>
    <r:URN>urn:ddi:se.researchdata:2021-331-1.StudyUnit:2.0</r:URN>
    <r:UserID typeOfUserID="datasetIdentifier">2021-331-1</r:UserID>
    <r:Citation>
      <r:Title>
        <r:String xml:lang="sv">Delaktighet för barn och unga med cerebral pares i Uganda: aktivitetsnärvaro och medverkan jämfört med jämnåriga utan cerebral pares</r:String>
        <r:String xml:lang="en">Participation of children and youth with cerebral palsy in rural Uganda: Activity attendance and involvement compared with peers without cerebral palsy</r:String>
      </r:Title>
      <r:Creator>
        <r:CreatorReference>
          <r:URN>urn:ddi:se.researchdata:2021-331-1.Individual-0:2.0</r:URN>
          <r:TypeOfObject>Individual</r:TypeOfObject>
        </r:CreatorReference>
      </r:Creator>
      <r:Publisher>
        <r:PublisherName>
          <r:String xml:lang="sv">Karolinska Institutet</r:String>
          <r:String xml:lang="en">Karolinska Institutet</r:String>
        </r:PublisherName>
      </r:Publisher>
      <r:Publisher>
        <r:PublisherName>
          <r:String xml:lang="sv">Karolinska Institutet</r:String>
          <r:String xml:lang="en">Karolinska Institutet</r:String>
        </r:PublisherName>
      </r:Publisher>
      <r:PublicationDate>
        <r:SimpleDate>2022-06-29</r:SimpleDate>
      </r:PublicationDate>
      <r:InternationalIdentifier>
        <r:IdentifierContent>10.5878/febd-dx96</r:IdentifierContent>
        <r:ManagingAgency controlledVocabularyAgencyName="DOI">DOI</r:ManagingAgency>
      </r:InternationalIdentifier>
    </r:Citation>
    <r:Abstract>
      <r:Content xml:lang="sv">Målet med denna studie är att jämföra deltagande inom domänerna närvaro och medverkan för barn och unga med cerebral pares (CP) i ett låginkomstområde i östra Uganda. Åttiotvå barn och unga med CP och 81 barn och unga utan CP deltog i studien (alla 6-22 år gamla). Information om deltagande i närvaro och medverkan samlades in för 20 aktiviteter genom instrumentet "Picture my participation".

Åttiotvå barn och ungdomar mellan 6-22 år med cerebral pares och 81 ålders- och köns-matchade barn och ungdomar utan cerebral pares deltog i studien. Motorisk funktion, egenvård och sociala funktioner undersöktes och målsmän intervjuades på deras barns vägnar med Picture My Participation (PMP). PMP mäter delaktighet i 20 aktiviteter i hemmet och samhället, och har utvecklats för att användas i låg- och medelinkomstländer. Instrumentet består av fyra sektioner som mäter deltagande, medverkan, betydelse och facilitatorer/barriärer: https://ju.se/en/research/research-groups/child/projects/picture-my-participation.html 
I denna studie så använde vi de två första sektionerna.  Intervjuerna utfördes av en socialarbetare som bodde i studieområdet och är familjär med kulturen och språket. 

Datasetet består av tre (3) filer:
•       Data_set_PMP-I_Andrews_et_al.xlsx
•       Variable_list_PMP-I_Andrews_et_al.pdf
•       Picture_My_Participation_2019.pdf (enkäten som använts)</r:Content>
      <r:Content xml:lang="en">AIM: To compare participation attendance and involvement of children and youth (C&amp;Y) with and without cerebral palsy (CP) in a low-income area of eastern Uganda. 
METHOD: Eighty-two C&amp;Y with CP aged 6–22 years and 81 age- and sex-matched C&amp;Y without CP participated in the study. Data on attendance and involvement in 20 home and community activities were obtained using the instrument "Picture My Participation". Non-parametric statistical methods were used to assess between-group differences. Effect size estimates were calculated.
RESULTS: Pooled attendance across all activities was significantly lower in C&amp;Y with CP than in C&amp;Y without CP (P&lt;0.001) and for each activity item (P=0.004 to P&lt;0.001). Effect sizes for each activity were 0.2–0.7. Between-group differences were larger for community activities than for home activities. Pooled involvement across all activities was less in the CP group (P&lt;0.001) and for each activity (P=0.014 to P&lt;0.001). Effect sizes for each activity were 0.2–0.5. C&amp;Y at GMFCS level I–II had higher attendance (P&lt;0.001) and involvement (P=0.023) than those at GMFCS III–V.
INTERPRETATION: Participation attendance and involvement of young people living with CP in Uganda were restricted, especially for community activities. There is a need to identify context-specific participation barriers and develop strategies to overcome them.

Eighty-two children and youth with cerebral palsy aged 6-22 years and 81 age- and sex-matched children and youth without CP participated. Motor function, self-care skills, and social functions were assessed, and caregivers were interviewed on behalf of their children using Picture My Participation (PMP). PMP measures participation in 20 home and community activities, and was developed for use in low and middle-income countries. The instrument consists of four sections measuring attendance, involvement, importance, and facilitators/barriers: https://ju.se/en/research/research-groups/child/projects/picture-my-participation.html 
We used the first two sections in this study. The interviews were conducted by a social worker living in the area and familiar with the culture and language.

The dataset consists of three (3) files:
•       Data_set_PMP-I_Andrews_et_al.xlsx
•       Variable_list_PMP-I_Andrews_et_al.pdf
•       Picture_My_Participation_2019.pdf (the survey used)</r:Content>
    </r:Abstract>
    <r:Coverage>
      <r:TopicalCoverage>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.TopicalCoverage:2.0</r:URN>
        <r:Subject xml:lang="en" controlledVocabularyID="3" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Medical and Health Sciences</r:Subject>
        <r:Subject xml:lang="sv" controlledVocabularyID="3" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Medicin och hälsovetenskap</r:Subject>
        <r:Subject xml:lang="en" controlledVocabularyID="30207" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Neurology</r:Subject>
        <r:Subject xml:lang="sv" controlledVocabularyID="30207" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Neurologi</r:Subject>
        <r:Subject xml:lang="en" controlledVocabularyID="30221" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Pediatrics</r:Subject>
        <r:Subject xml:lang="sv" controlledVocabularyID="30221" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Pediatrik</r:Subject>
        <r:Subject xml:lang="en" controlledVocabularyID="30311" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Public Health, Global Health and Social Medicine</r:Subject>
        <r:Subject xml:lang="sv" controlledVocabularyID="30311" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Folkhälsovetenskap, global hälsa och socialmedicin</r:Subject>
        <r:Subject xml:lang="en" controlledVocabularyID="50910" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Child and Youth Studies</r:Subject>
        <r:Subject xml:lang="sv" controlledVocabularyID="50910" controlledVocabularyName="Standard för svensk indelning av forskningsämnen 2025">Barn- och ungdomsvetenskap</r:Subject>
        <r:Keyword xml:lang="en" controlledVocabularyID="urn:ddi:int.cessda.elsst:9eca9c03-c900-44d9-806f-3acec00f8fc2:4" controlledVocabularyName="ELSST">CHILDREN</r:Keyword>
        <r:Keyword xml:lang="sv" controlledVocabularyID="urn:ddi:int.cessda.elsst:9eca9c03-c900-44d9-806f-3acec00f8fc2:4" controlledVocabularyName="ELSST">BARN</r:Keyword>
        <r:Keyword xml:lang="en" controlledVocabularyID="urn:ddi:int.cessda.elsst:ef99efea-b776-4b11-b566-5f8923a2008d:4" controlledVocabularyName="ELSST">YOUTH</r:Keyword>
        <r:Keyword xml:lang="sv" controlledVocabularyID="urn:ddi:int.cessda.elsst:ef99efea-b776-4b11-b566-5f8923a2008d:4" controlledVocabularyName="ELSST">UNGDOM</r:Keyword>
        <r:Keyword xml:lang="en" controlledVocabularyID="D002547" controlledVocabularyName="MeSH">Cerebral Palsy</r:Keyword>
        <r:Keyword xml:lang="sv" controlledVocabularyID="D002547" controlledVocabularyName="MeSH">Cerebral pares</r:Keyword>
        <r:Keyword xml:lang="en" controlledVocabularyID="D014454" controlledVocabularyName="MeSH">Uganda</r:Keyword>
        <r:Keyword xml:lang="sv" controlledVocabularyID="D014454" controlledVocabularyName="MeSH">Uganda</r:Keyword>
        <r:Keyword xml:lang="en" controlledVocabularyID="D019988" controlledVocabularyName="MeSH">Disabled Children</r:Keyword>
        <r:Keyword xml:lang="sv" controlledVocabularyID="D019988" controlledVocabularyName="MeSH">Barn med funktionsvariation</r:Keyword>
      </r:TopicalCoverage>
      <r:SpatialCoverage>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.SpatialCoverage:2.0</r:URN>
        <r:Description>
          <r:Content xml:lang="en">This study was performed in the Iganga Mayuge Health and Demographic Surveillance System, which includes more than 80,000 inhabitants in 65 villages in rural eastern Uganda.</r:Content>
        </r:Description>
        <r:CountryCode>UG</r:CountryCode>
      </r:SpatialCoverage>
      <r:TemporalCoverage>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.TemporalCoverage:2.0</r:URN>
        <r:ReferenceDate>
          <r:StartDate>2019-05-03</r:StartDate>
          <r:EndDate>2019-12-20</r:EndDate>
        </r:ReferenceDate>
      </r:TemporalCoverage>
    </r:Coverage>
    <r:AnalysisUnit controlledVocabularyID="AnalysisUnit" controlledVocabularyAgencyName="DDI Alliance">Individual<r:ControlledVocabularyURN>http://rdf-vocabulary.ddialliance.org/cv/AnalysisUnit/2.1.3/2dd4472</r:ControlledVocabularyURN></r:AnalysisUnit>
    <r:AnalysisUnitsCovered>
      <r:String xml:lang="en">Individual</r:String>
      <r:String xml:lang="sv">Individ</r:String>
    </r:AnalysisUnitsCovered>
    <d:DataCollection>
      <r:URN>urn:ddi:se.researchdata:2021-331-1.DataCollection:2.0</r:URN>
      <d:CollectionEvent>
        <r:URN>urn:ddi:se.researchdata:2021-331-1.CollectionEvent:2.0</r:URN>
        <d:DataCollectorOrganizationReference>
          <r:URN>urn:ddi:se.researchdata:2021-331-1.Organization-0:2.0</r:URN>
          <d:ID />
          <d:Version />
          <d:TypeOfObject>Organization</d:TypeOfObject>
        </d:DataCollectorOrganizationReference>
        <d:DataCollectionDate>
          <r:StartDate>2019-05-03</r:StartDate>
          <r:EndDate>2019-12-20</r:EndDate>
        </d:DataCollectionDate>
        <d:ModeOfCollection>
          <r:URN>urn:ddi:se.researchdata:2021-331-1.CollectionEvent-0-ModeOfCollectionType:2.0</r:URN>
          <d:TypeOfModeOfCollection>Interview</d:TypeOfModeOfCollection>
          <r:Description>
            <r:Content xml:lang="en">Interview</r:Content>
            <r:Content xml:lang="sv">Intervju</r:Content>
          </r:Description>
        </d:ModeOfCollection>
      </d:CollectionEvent>
    </d:DataCollection>
    <a:Archive>
      <r:URN>urn:ddi:se.researchdata:2021-331-1.Archive:2.0</r:URN>
      <a:ArchiveSpecific>
        <a:Item>
          <a:Access>
            <r:URN>urn:ddi:se.researchdata:2021-331-1.Archive-ArchiveSpecificType-AccessType:2.0</r:URN>
            <a:TypeOfAccess controlledVocabularyName="info:eu-repo-Access-Terms vocabulary">restrictedAccess</a:TypeOfAccess>
          </a:Access>
          <a:DataFileQuantity>2</a:DataFileQuantity>
        </a:Item>
      </a:ArchiveSpecific>
    </a:Archive>
  </s:StudyUnit>
</ddi:DDIInstance>