Dr Clare Carroll Discipline of Speech and Language Therapy School of Health Sciences NUIG Down Syndrome Research Forum Ireland 29 th March 2019 UCC Cork states that participating is a ID: 932125
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Slide1
Participation of children with Down syndrome in therapy/intervention
Dr. Clare CarrollDiscipline of Speech and Language TherapySchool of Health Sciences NUIG
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide2states that participating
is a process by which people are enabled to become actively involved
in
defining the issues of concern to them, in making decisions about factors that affect their lives..
Participating.. World Health Organisation (2002)
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide3Imms, Granlund, Wilson,
Steenburger, Rosenbaum and Gordon (2017, p16)‘Participation
can be both a
process and an outcome of health and education services’.‘Participation
in meaningful life activities should be an essential intervention goal’.Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide4Beresford, Clarke and
Madison (2018): a qualitative scoping study with 25 Parents and over 70 Professionals in UK
There was strong agreement that interventions should be helping children with
neurodisabilities to participate in everyday life as much as possible.
Participation identified as a key objective of therapy interventions. However, understanding of participation was extremely varied.Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide5Participation is
involvement
in a life situation (WHO, 2001)
Essential Element 1
Attendance
: ‘being there’
(frequency of attending, child’s range of activities)
Essential
Element
2
Involvement
: ‘experience of participation while attending’
(engagement, persistence, motivation)
Imms
, Granlund, Wilson,
Steenburger, Rosenbaum and Gordon (2017). Family of Participation Constructs.
Participation…
Slide6Can professionals
support the participation of a child and family in intervention without knowing their contexts, interests and needs?#childvoice#
parentvoice
Down Syndrome Research Forum Ireland
29th March 2019 UCC Cork
Slide73 qualitative case
studies:
Chloe (2yrs 6mths)
Paul (3yrs)
Emily (3yrs)Structured
observations
of the children
in their intervention group and in their homes
using an observation tool
adapted from (
Imms
et al. 2016)
Interviews with their parents
Irish context
Theme 1: Being
thereIndividuality Abilities/skillsTemperament
Theme
2:
Engagement
Belonging
Familiarity and routine
People
Carroll
, C., Hannon, E., Keane, N. & O’Connell, A. (2018)
Theme
3:
Opportunities
for Growth
Professional Support
Progressing
Slide8F
ive children (3 -
5 years with
neurodevelop-mental disabilities)
+ parents+ professionals from one early intervention team in Ireland.
(
C
arroll, 2016; Carroll
& Sixsmith (2016a,
2016b
)
Each child had their own
profile
D
evelopment
PersonalityStyle of communicationInterestsNeedsLikes
Their individual
profile influenced
their choices &
their interactions
with
services and with people in their worlds
Carroll & Sixsmith (2016a, 2016b) & O’Shaughnessy Carroll (2016)
F
ive
relationship stages in the EI journey emerged;
a roadmap of explicit stages (Carroll & Sixsmith, 2016a)
Slide9Child’s Context e.g. from research
(Carroll, 2018)
Down Syndrome Research Forum Ireland
29
th March 2019 UCC Cork
Slide107 parents of children aged between 6-12 years with DS from Ireland in interviews
Theme 1: value of participation
Skill development
Enhanced well-being and sense of belonging
Theme
2: barriers and facilitators to participation
Child factors
Attitudes and views of others
Modifications to the environment
Logistical issues
Brennan, Lyons & Carroll (2016)
Slide1117 parents in 3 focus groups and 103 parents answered a questionnaire
Parents of school-aged children with disabilities in Ireland
Focus groups
Need for consistency
Intensive therapyOngoing therapy into adulthoodTherapist knowing child's needsContact and awareness of therapy programme (teacher and therapist)
Questionnaire: Significant associations
L
ocation of therapy and awareness of what happens
Location of therapy and importance of relationships
Location of therapy and need for therapy
Location of therapy and perception that therapist and teacher were working closely
Location of therapy and speech outcome and effect on child’s confidence
Carroll (2010)
Exploration of
parents' perceptions and expectations of speech-language pathology services for children with intellectual disability.
Slide12Complexity and change
Beresford et al. (2018) Therapy interventions are complex.All therapies (SLT, OT, Physio) are undergoing many
changes:
way they work and how their services are structured and organised. reduced resources, but changes in beliefs and thinking about therapy interventions also have a large part to play.
There is a wide variation in how services for young children with developmental disabilities are provided (Carroll et al., 2013).Reconfiguration of services, interagency team working and adoption of Progressing Disability Services (PDS) Programme
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide13In Ireland interventions are aiming…
To understand a child’s social relationships, independence, participation in everyday life/natural environment (PDS, 2013)
To
focus on outcomes of intervention (e.g. develop skills and create/source opportunities to reach goals/dreams/aspirations)Progressing Disability Services (2013
)Outcome 4: Child has friends and gets on well with other people in their lives Outcome 5: Child learns skills to help them to be independent Outcome 6: Child takes part in home life, school life and community life
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide14Professionals need to know
the child and family contexts, interests, and needs…
Contexts
include place, people, objects, activity, time (Batorowicz, King, Mishra, &
Missiuna, 2016)influence participation and participation is influenced by context (Imms et al. 2017)Preferences/interests
influence participation and
participation is influenced by preferences
(
Imms
et al. 2017
)
Activity competence/needs
influence participation and participation is influenced by activity competence (
Imms
et al. 2017)PLUS expectations and goals (Carroll, 2010)
Down Syndrome Research Forum Ireland 29th March 2019 UCC Cork
Slide15Professionals need to know the child and family contexts, interests, and needs…
Clear need to:
include children and their families during intervention
b
e aware of the need to tailor intervention for each childconsider preferences, personality and routines for each child
ALSO
‘If
you don’t have a
relationship
, and a
trust
and
belief
that what you are embarking upon is going to be effective, then you’re not going to get anywhere…’(
T2; Beresford et al. 2018)‘If you are aware of roles and what somebody’s job is then you won’t be confused, you can engage..’ (Parent 2; Carroll & Sixsmith, 2016a).A roadmap of explicit stages can support all involved in the relationship to work together (Carroll
& Sixsmith, 2016a).Down Syndrome Research Forum Ireland 29th March 2019 UCC Cork
Slide16‘practitioners cannot support the child and family without knowing their contexts, interests and needs. Therefore, the child and family and professionals become a unit/team and each team member needs a space to be heard and included’
(Carroll, 2018, p. 192)
#SpeakUp4CommRights c.carroll@nuigalway.ie
or @clare_carroll1
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide17Batorowicz
, B., King, G., Mishra, L., &
Missiuna
, C. (2016).
An integrated model of social environment and social context for pediatric rehabilitation.
Disability Rehabilitation, 38
(12), 1204-1215.
Beresford, B., Clarke, S., & Maddison,
J. (2018
).
Therapy interventions for children with
neurodisabilities
: a qualitative scoping study. Southampton (UK): NIHR Journals Library; 2018 Jan. (Health Technology Assessment, No. 22.3.)
https://www.ncbi.nlm.nih.gov/books/NBK476020/?report=reader
Carroll, C. (2010) ‘It's not everyday that parents get a chance to talk like this’: Exploring parents' perceptions and expectations of speech-language pathology services for children with intellectual disability. International Journal of Speech-Language Pathology
, 12: 352-361.Carroll, C., Murphy, G., & Sixsmith, J. (2013). The Progression of Early Intervention Disability Services in Ireland. Infants and Young Children, 26(1), 1-88. doi:10.1097/IYC.0b013e3182736ce6Carroll, C., & Sixsmith, J. (2016a) A trajectory of relationship development for early intervention practice for children with developmental disabilities. International Journal of Therapy and Rehabilitation, 23: 131-140.
Carroll, C., & Sixsmith, J. (2016b).
Exploring the facilitation of young children with disabilities in research about their early intervention service.
Child Language Teaching and Therapy
, 32(3), 313-325.
Carroll, C. (2018).
Let me tell you about my rabbit! Listening to the needs and preferences of the child in Early Intervention. In M. Twomey and C. Carroll (eds.),
Seen and heard: Exploring participation, engagement, and voice of children with disabilities, p.191-242. Oxford, UK: Peter Lang.
Hannon, E., Keane, N., O’Connell, A., Caulfield, M. & Carroll, C. (2018). An exploration of young children with Down syndrome’s engagement in a communication intervention group. World Down Syndrome Congress, Glasgow, 28th July, Symposium Oral Presentation.
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork
Slide18O’Shaughnessy
Carroll, C. (2016). Understanding early intervention services in Ireland: a conceptual evaluation. Doctoral dissertation. Health Promotion. National University of Ireland Galway. Galway, Ireland. Retrieved from https://aran.library.nuigalway.ie/bitstream/handle/10379/6361/2016oshaughnessycarrollphd.pdf?sequence=1&isAllowed=y
Progressing Disability Services for Children and Young People (2013
). Outcomes for Children and their families: Report on an Outcomes-Focused Performance Management and Accountability Framework for Early Intervention and School Age Disability Network Teams. Standards and Performance Reporting Working
Group. https://www.hse.ie/eng/services/list/4/disability/progressing-disability/report-on-outcomes-for-children-framework.pdf
Imms
, C., Granlund, M., Wilson, P. H.,
Steenburger
, B., Rosenbaum, P., & Gordon , A. (2017). Participation - both a means and an end. A conceptual analysis of processes and outcomes in childhood disability.
Developmental Medicine & Child Neurology, 59
(1), 16-25.
Imms
, C. (2017). Enabling participation in childhood disability: Challenges & opportunities. Presentation on:
http://
www.ahresearch.com.au/wp-content/uploads/2016/12/Imms-Paper-Vic-AH-2017-version-for-PDF-upload.pdfLyons, R., Brennan, S. & Carroll, C. (2016) Exploring parental perspectives of participation in children
with Down Syndrome. Child Language Teaching & Therapy, 32:79-93. World Health Organization. (2001). International Classification of Functioning, Disability and Health. Geneva: World Health Organization.World Health Organization (2002). Community Participation in local health and sustainable development: approaches and techniques. WHO regional Office for Europe: Copenhagen, Denmark. http://www.euro.who.int/__data/assets/pdf_file/0013/101065/E78652.pdf
Down Syndrome Research Forum Ireland
29
th
March 2019 UCC Cork