FAMILIAL HYPERCHOLESTEROLAEMIA COMMUNITY CONVERSATION
A community conversation on primary care research in Familial Hypercholesterolaemia (FH) was held by researchers from the University of Notre Dame and the Consumer and Community Health Research Network. Amoung the fourteen participants who attended were members of the FH Support Group and FH Australasia Network.
Researchers had specific queries they wanted to put to the community including how to raise awareness of familial hypercholesterolaemia, following a diagnosis what is the best way to contact family members and what information needs to be given.
Comments from consumers
“Being able to share my ideas and listening to others”
“Assisting with getting better community awareness out there”
YOUTH HEALTH POLICY COMMUNITY CONVERSATIONS
YouthHealthPolicyReport180418The Child and Youth Health Network, WA Department of Health developed the WA Youth Health Policy 2018 – 2023 (the Policy) in consultation with the young people across the state.
Throughout September and October 2017, community conversations were held across metropolitan, regional and rural WA. Young people aged 13 to 24 from a range of priority populations highlighted in the draft Policy were invited to participate in these community conversations.
122 young people attended the community conversations to express their views and perspectives and have a say about what is important to them about youth health and wellbeing. Feedback from the community conversations was themed into the following seven key themes:
- Youth focused approach
- Service delivery
- Health and wellbeing
- Health information and promotion
TELETHON KIDS INSTITUTE YOUTH FORUM
The Telethon Kids Institute wanted to hear from young people between the ages of 15-25 to discuss health and well-being and ways for the youth voice to be heard in the work of the Institute.
- How was the community conversation set up?
- Who took Part?
- What do young people talk about health and well-being?
- How can we find young people?
- How do young people want to have a say?
- What did young people have to say about the community conversation?
How was the community conversation set up?
It was held at Telethon Kids Institute in the evening and payment and pizza were offered. It was promoted through youth networks and on social media. Attendees were invited to discuss questions in small groups.
Who took part?
What young people said about the the Community Conversation
- I feel like I am making a difference
- Variety of participants – age, background etc.
- There was a large variety of people. Very interesting to see other people’s opinions
- Hearing the perspectives of a diverse group of people
- The level of participation invited. It made it easier to contribute
- Meeting great people. The quality of discussion. We were really given the sense that our ideas had value
- Having the ability to openly voice my opinion, and feel that these opinions were useful
- Everyone was involved – got their say. Very friendly and welcoming when we arrived
- Having the opportunity to put forward my ideas and opinions and also having the chance to write things down if there was not enough time.
- Being at Telethon and being able to share our ideas
- Getting out thoughts/voices and youth issues heard. I LOVED THE FORUM! So thank you for having us!
- When we got to have a say x4
- The fact that we got to share ideas with the forum was great
- Small groups that allowed you to share your ideas freely
- Having a chance to give feedback and give my opinion and insight
- The fact that all our suggestions were taken into consideration
- Hearing other peoples point of view
- Getting my opinion across
- The participation of everyone, the incentives were very generous!
- Being able to contribute to something worthy. Interactive nature. Environment was clean, facilities were good and professional.
- How interactive it was and the level of engagement with the questions put forward
- Meeting new people and being encouraged to express my opinion
- Sharing of ideas and being able to bounce off each other
- Everyone’s involvement
- Openness, broadening my horizon on other’s issues. Also see how uniform they are among young people
- It was fun to speak freely with other people and was very informative
- Having everyone giving different ideas
- Meeting like-minded and driven youth who brought their own interests to bring to the table
- Diverse ideas
- Food, drink and payment
- It was very relaxed and I felt comfortable engaging in the discussions, facilitators were lively and friendly – easy to talk to
- The interactive process – the facilitators and organisers did a great job of creating an interactive and relaxed environment, where everyone could participate
- Facilitators were very encouraging. Everyone got their say
- The atmosphere and environment. Facilitators listened and were open to everyone’s ideas and opinions
- All of it was great
- Open interactive group
- Level of engagement with everybody
- There was nothing x6
- Not enough time x 5
- Not enough time for Q’s x3
- Wish we had more time to network and meet each other
- The day. It would have been more convenient on a Friday or weekend to make it easier to be able to keep up study.
- Didn’t get to communicate with everyone
- Long speeches in beginning. Maybe shorten them a bit, as the information sheets gave all information mostly. Age range too big
- N/A Age group?
- The awkward initial environment
- There was no sort of icebreaker to get to know the people in my group and I think this limited conversation
- The questions overlapped a little bit
- Was quite loud; some points could not hear. Questions overlapped some
- Intimidation, a little noisy
- Environment was quite confronting and unfamiliar – quite serious and formal
- Some people didn’t take it seriously
- Gender more females than males
- The pizza went cold by the end. Ha ha ha. That was a joke.
- Was a pretty good length. Possibly ½ hour longer but no more than that
- More questions x2
- More questions in deeper thoughts
- Direct questions move → more detailed
- More variety of questions
- More time on Q1. More information about the institute. Examples of research
- Better instructions on parking. Provide a google map link J Was a bit stressful getting to venue
- More promotions of the event into the broader community
- More of a social environment in the beginning, less professional
- Have a limited/targeted age group such 18-25, 12-18, and so organised into groups such as colours to be even
- Keep it interactive!
- Instead of moving around we should stay with the same facilitators as this would make conversation flow more.
- Less pre-info (I got the same info 3x this week)
- More information/presentations about current research and work being done in the Institute
- More promotion on social media – Facebook
- If certain people don’t feel comfortable/have something to add, don’t put them on the spot
- Time flies when you’re having fun 🙂
Program Grant and Developmental Pathways Project Community Expo
The National Health and Medical Research Council’s Program Grant and the Developmental Pathways Project held a community expo in July 2014 in the Institute’s seminar room and atrium.
The purpose of the community expo was to raise awareness with the wider community of the research projects being undertaken under the umbrella of the Program Grant and Developmental Pathways Project. It was an opportunity for consumers and community members to learn about the research, talk with the researchers and find opportunities to be involved in research.
Running a community expo
It was important to reduce barriers for the community so the following considerations were made in the development of the community expo:
- Short duration of presentations
- Presentations used plain language and no acronyms
- The venue was accessible and had parking
- Catering was supplied
Consumers and community members on the Participation Program’s Network and others who had links with the Consumer and Community Participation Program were invited to attend the event. Researchers from the Program Grant and the Developmental Pathways Project were asked to volunteer to give a short presentation or to display posters.
A total of 60 community members attended (including 36 adults and 24 children). Approximately 40 researchers presented, had displays or helped out on the day.
- How do individual, family and neighbourhood characteristics influence children’s early development and academic achievement? – Megan Bell
- Pre-term birth: does a short interval between pregnancies affect the risk of preterm birth and low birth weights? – Stephan Ball
- How a family history of joblessness and separation relates to wellbeing of Australian children – Kirsten Hancock
- Consumer consultation via phone surveys – Wavne Rikkers
- Birth defects and assisted reproductive technologies: encouraging reduction in risk over time – Michele Hansen
- Understanding the life course of attention deficit disorder – Desiree Silva
Posters and displays
Researchers displayed posters or put together displays about 25 Research projects covering a range of projects which included:
- Alcohol and Pregnancy
- The ORIGINS Project
- Development of the Adolescent Self Esteem Scale
- Early vocabulary development of Australian Indigenous children
- Relationships between student attendance, attitudes and educational achievement
- Mapping to see the relationship between different outcomes
- Maternal mental health and risk of child protection involvement
- Attention deficit hyperactivity disorder
- Educational outcomes for children in contact with the child protection system
- Using data linkage to identify risk for a child’s first mental health service use
- The Raine Study
- Quality of Life of Mothers of Children with Intellectual Disability and Autism Spectrum Disorder
- The likelihood of a child developing autism spectrum disorder, intellectual disability or both
- Data linkage
Evaluating the community expo
A short survey of 8 questions was created in Survey Monkey and sent to consumers and community members via e-mail following the community expo to elicit feedback on the event. A total of 11 responses were received. The community expo was rated as very good or excellent by 90.9% of respondents while 100% found the presentations informative and in easily understood language. Additionally, 100% of respondents had taken the time to talk to researchers about their posters or displays.
What worked well at the community expo?
Consumers and community member comments:
“The short presentations helped us decide who to talk to and what we are interested in, without having to talk to every single presenter.”
“Presentations were clear and easy to follow”
“The opportunity to speak to the researchers and presentations to learn more about the current projects being undertaken”
“The snapshots of the various pieces of research.”
“The opportunity to speak directly to the researchers”
“The intimate setting and openness of the researchers”
“As a researcher who uses de-identified linked data provided by Western Australian citizens, it is so fantastic to be able to give something back to the community who allow us to do this important research. The engagement of the community in our research, from beginning to end, is part of our philosophy and the benefits are immeasurable. The Community makes us more accountable for the research we undertake, ensures that the research has a community perspective, and improves the translation of our research outcomes”
Dr Rebecca Glauert