Down syndrome around the world

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Program

Wednesday, 19 October 2022

Abstracts

Fievel Tong

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.

Juan-Pablo Robledo

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.

Mina Chun

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.

Maria Baranowski

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.

Sujatha Raj

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.

Francine van den Driessen Mareeuw

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.

Roy Brown, Rhonda Faragher, Gen Z Research Team

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

Fionn & Jonathan Angus

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).