Session 1 – Opening and Research discussion |
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Times (GMT) | |
07:00 GMT | Opening
Participants introduce themselves and their research |
07:30 | Music Performance
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07:45- 08:30 | Research in Down Syndrome
Taking stock of what research is being funded and published and whether this reflected different stakeholders’ key interests? It seems to be a good opportunity to ask people with DS and their parents about where the priorities should lie, and to have a comparative take on this (cross country and stakeholder).
Reflection
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Session 2 – Research in life contexts: Literacy, mathematics, family life |
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Times (GMT) | Presentation |
09:00 | Round Table: Literacy research
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10:00 | A systematic comparison of the impact of father- and mother-child interactions on the development of adaptive behaviour in toddlers with Down syndrome and typical development
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11:00- 11:30 | Challenges experienced by children with Down Syndrome in learning mathematics: a literature review
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Session 3 – Health & Well-being |
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Times (GMT) | Presentation |
13:00 | Occupational therapy for both adults with both Down syndrome and dementia and their informal caregivers: A collaborative client-centred care
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13:30 | Good health care for a good life? A qualitative exploration of the perspectives of people with Down syndrome and caregivers
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14:00 – 14:30 | Nutritional status and services of children born with Down syndrome: A Canadian perspective
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Session 4 – Down syndrome and Quality of Life |
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Times (GMT) | Presentation |
20:00 | Happiness Project
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20:30 | Reflections on a life lived with Down syndrome: Family members’ stories
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21:00 | Going further: Continuing learning and education for people with Down syndrome aged 16–45
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21:30-22:30 | Round table: Quality of Life and Down Syndrome
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Session 5 – Closing |
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23:00 | Music Event
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Closing Discussion
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Aim
The post-secondary education experiences of people with Down syndrome are relatively under-researched, especially in Australia. This research investigates people’s interests in further education, and their pathways towards, and experiences of, post-secondary education.
Method
Interviews (12) were conducted with people with Down syndrome aged 16–45 and their parents/carers. The research included people both with and without post-secondary education experience.
Several inclusive research practices made the study more accessible. An Easy Read interview guide was shared with the participants prior to the interviews. Visual research methods were also used. Participants were asked to share photographs to further support their responses, whilst enriching the data collected.
Findings
Whilst data collection is still being undertaken, some preliminary findings are noted. People with Down syndrome tend to access further education opportunities aligned with their interests and skills. The learning opportunity itself is a major highlight, though opportunities for friendships tend to be limited. The pathway into further education is often facilitated by existing relationships with stakeholders and the advocacy and support of parents/carers.
Conclusion/Application
People with Down syndrome can, and do, participate in post-secondary education. It is, therefore, vital to increase such opportunities, and to make further education more inclusive and accessible.
A systematic comparison of the impact of father- and mother-child interactions on the development of adaptive behaviour in toddlers with Down syndrome and typical development.
Aim
Empirically assessing the impact of Parent-Child Interactions [PCIs] on the development of adaptive behaviour [AB] of toddlers with Down Syndrome [DS]. Additionally, systematically comparing the impact of mother-child vs father-child interactions, and the development of AB in toddlers with DS vs typically developing [TD] ones.
Method
30 toddlers with DS and 30 TD counterparts paired by developmental age were recorded interacting with each of their parents separately. Interactions were rated following the Adult Sensitivity Assessment Scale, and the toddlers’ adaptive development assessed through the TADI and ABAS-II scales. Multiple linear regression models were fitted.
Findings
Fathers were overall equally sensitive than mothers, and parents of toddlers with DS were overall more directive during PCIs than their counterparts. Maternal directivity during PCIs stood as the best predictor of adaptive development— albeit only in the case of TD toddlers. Paternal overall sensitivity during PCIs successfully and systematically predicted the adaptive development of toddlers regardless of the assessed group— DS vs TD.
Conclusion/Results
Unprecedented in their systematic inclusion of fathers —strongly suggest that paternal sensitivity during playtime is just as beneficial for the AB of toddlers as is maternal sensitivity, particularly in the case of toddlers with DS.
Aim
The civil rights generation of people with intellectual developmental disabilities (IDD) and their families is nearing their lives’ end. For example, in 1960, the average life expectancy of people with Down syndrome was around ten years, but now it is increased to 60-70 years. To gain an in-depth understanding of how families’ lives have been impacted and the lessons they have learned through the relationship, this research will examine family members’ perspectives following the death of a man, Joe, with Down syndrome who was born in 1961 and died in 2021 from Alzheimer’s disease.
Method
This research will utilize narrative inquiry to examine family perspectives. Semi-structured interviews were virtually conducted with five siblings, two nephews, and his niece as this study was conducted during the global pandemic. In addition, family documents were collected, such as the eulogy and essays written by Joe’s deceased parents.
Findings
This research will provide a counter-narrative to the medical view of IDD that often views disability in terms of tragedy and burden to a rich, reciprocal relationship.
Conclusion/Application
Joe’s life history will demonstrate the positive and reciprocal outcomes of relationships that could challenge stereotypical perceptions of IDD and increase awareness and acceptance in the current society.
My proposed PhD research project aims to determine the dietary intake and nutritional status of children born with Down syndrome. I am also interested in learning about their experience receiving nutrition services and what are their barriers and preferences to receiving nutrition information and services (nutrition knowledge translation). I will share background information regarding the limited research published in the areas of Down syndrome and nutrition, advocate for inclusive health and nutrition research and services, and share my lived experience as a dietitian and mom of a son born with Down syndrome.
Aim
Many persons with Down syndrome (DS) experience early-onset dementia and its associated loss of skills, impacting their ability to engage and maintain performance in daily activities. Thus, escalating care dependency on their significant others. While non-pharmacological interventions have been advocated to address their evolving care needs, there is little research evidence in this area of practice. My doctoral research investigated comprehensively on home-based occupational therapy for people with both DS and dementia and their informal caregivers.
Methods
A systematic methodological approach was employed to gather the best available evidence from the systematic reviews of the literature and an international cross-sectional survey.
Findings
One of the key findings was that collaborative client-centred care was an important factor in service provision for people with complex health needs, which involves working closely with the care recipient and their informal caregivers and with other relevant stakeholders.
Conclusion/Application
Occupational therapists need to provide collaborative client-centred care for both persons with DS and dementia and their informal caregivers. Additionally, it is important to develop clinical practice guidelines to promote consistency of care for this population similar to that available for the general older population with dementia.
Diana Delnoij, Esther de Vries, Antonia Coppus
Aim
Gaining insight into how people with Down syndrome (DS) live their lives, the impact of health care on their lives, and the perceived health care quality. This insight provides pointers for health care improvements and can inform the development of quality indicators for health care for people with DS.
Method
Semi-structured interviews with 18 people with DS and 15 parents, and focus groups with 35 support staff members (of people with DS residing in assisted living facilities) in the Netherlands.
Results
The data revealed that most people with DS pursue a life as normal as possible, while also facing challenges. Particularly parents indicated that health care is just one of many other needed services, and that aligning all these services can be challenging. The participants generally took quality of health care for granted, although they urged health care professionals to adapt communication skills and match treatments with the abilities and lives of people with DS.
Conclusion/Applications
Health care is one of the contributors to a normal life of a person with DS. In order to maximise its contribution, it should apply a more person-centred and holistic approach, be well-coordinated, and aligned with other services. Quality indicators may stimulate this.
Roundtable on Quality of Life and Down syndrome
Theoretical perspectives and practical implications- Roy Brown
Researching quality of life for young adults with Down syndrome
Choosing domains – Rhonda Faragher
Methods – Gen Z research team (research assistants with Down syndrome)
Findings – Jan Lloyd
General discussion
Happiness Project
The Happiness Project is a piece of ongoing research, made up of hundreds of interviews Fionn has conducted on video with people from many walks of life, in many countries, over the last seven years. (In Australia, we interviewed Sydney Zookeepers, NDIS Self-Directed Support Pioneers, and visionaries in progressive services from Mamre and CRU in Brisbane, as well as a guest lecture at Griffith U and a learning exchange with the Inclusive Research Network at U Sydney).
The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is the first and only world-wide group dedicated to the scientific study of intellectual disability.
Founded in 1964 as the International Association for the Scientific Study of Mental Deficiency, IASSIDD is an international, interdisciplinary and scientific non-governmental organization which promotes worldwide research and exchange of information on intellectual disabilities.
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