Participate in social research
COVID Vaccine Preparedness Study
A study funded by the Victorian Department of Health is investigating how prepared high priority Australians feel about the COVID-19 vaccine. The study aims to understand your questions or concerns, what information you would like about COVID-19 vaccines, and what factors may affect your decision to have the vaccine.
- People aged 70+
- People 18 -69 living with a chronic health condition.
To find out more, click here.
Psycho-oncology Co-operative Research Group – COVID-19
The Psycho-Oncology Co-operative Research Group from the University of Sydney are conducting research which explores the experiences of people living with cancer in the context of the current COVDI-19 pandemic. The study will initially involve a short survey and telephone interview. Two follow-up interviews will also be conducted at 6 and 12-months. We expect the survey will take about 10 minutes to complete and the interviews are expected to take between 30 and 40 minutes.
The study may be suitable for you if you:
- Are over 18 years old; and
- Have a proficient level of English; and
- Are a cancer patient currently receiving treatment or have received treatment in the last 6 months; OR
- Are a carer/ family member with a direct experience of caring for a cancer patient in the last 6 months.
To find out more, click here.
Chronic Obstructive Pulmonary Disease
An exploration of the experiences of self management in individuals living with Chronic Obstructive Pulmonary Disease (COPD): a biographical approach
Self-management programmes have long been used in the management of chronic disease. Individuals with COPD have been a target of these programmes to improve quality of life, reduce hospitalisations and reduce the burden of disease. Despite the benefit of these programmes, adherence is a problem. Studies have addressed how individuals with COPD engage in self-management, understand the disease process, manage illness and prevent exacerbations (Kaptein, 2014). However, health professionals remain challenged with understanding why some individuals can self-manage their COPD and others find this difficult. Perhaps consideration of the role of self and identity may provide insight into this phenomenon.
- Mild/moderate or moderate/severe COPD
- A diagnosis of COPD of at least three years
- Not in hospital
- Are participating in or have participated in a self-management plan/activity for COPD
To participate in this study, or for more information, please contact the study lead:
The use of ambient and individual music listening during pulmonary rehabilitation in Australia
Pulmonary rehabilitation is part of standard care people with chronic lung conditions. While most individuals undertaking a pulmonary rehabilitation program experience improvements in symptoms, exercise tolerance, and quality of life, not all individuals achieve benefit. For some, this is due to symptoms of breathlessness or fatigue accompanied by anxiety, which may reduce adherence to a program. In people without lung disease, listening to music during exercise distracts from symptoms of fatigue and breathlessness and can lead exercising at a higher level and improved mood. Music listening during pulmonary rehabilitation may enhance motivation to exercise and promote adherence by increasing an individual’s enjoyment and pleasure during the activity. Within pulmonary rehabilitation programs in Australia, ambient (background) music may be played during exercise sessions. However, the use of ambient music during these programs, the musical choice and input into selection is not known. Some individuals may also elect to listen to their own music while exercising, but the extent to which this occurs is unclear.
This study aims to establish the current practice in the use of ambient (background) music and individual music listening during exercise training within pulmonary rehabilitation programs in Australia.
Clinicians who are coordinators of, or involved in the delivery of exercise sessions as part of a pulmonary rehabilitation program within Australia.
Recruitment ends: 31/01/2021
To find out more, click here.
Bereaved Cancer Needs Inventory
The study aims to understand the unmet psychosocial needs of adolescents and young adults bereaved by cancer (offspring and siblings) within the previous five years. The study will use our revised 39 item Bereaved Cancer Needs Instrument for Offspring (BOCNI) and Siblings (BSCNI).Within our analysis, we will validate the psychometric properties of the questionnaire and identify the unmet needs of AYAs. In addition to validating the BCNI, we will also look at factors that predict the unmet psychosocial needs of bereaved adolescents and young adults (AYAs; aged 12 to 25).
Participants will include AYAs 12 to 25 years of age (inclusive) who have been bereaved by cancer. Including those whose parent(Bereaved Offspring), or sibling (Bereaved Sibling) has died from cancer within the previous five years. Participants can be living in Australia, New Zealand, or the USA.
You need to be able to read and write in English to take part in the study.
Click here to find out more.
Understanding cancer patients experiences with telehealth medical consultations during COVID-19 pandemic: a qualitative study
The primary aim of this study is to understand the lived experience of Victorians with a cancer experience (either direct diagnosis or a carer) having health care delivered via telehealth. It aims to explore how experiences differ by patient characteristics including: stage of treatment (newly diagnosed/ middle of treatment/follow-up), type of cancer, type of treatment and sociodemographic characteristics. This research aims to find out what patients and carers think is good about telehealth, what isn’t working for patients and how telehealth services can be improved.
- Been diagnosed with cancer in the past 4 years in Victoria
- Had a telehealth appointment for your cancer treatment any time after March 2020 (since COVID-19 pandemic restrictions were introduced)
- Cared for someone with cancer in Victoria and have attended a telehealth appointment with them for their cancer care any time after March 2020 (since COVID-19 pandemic restrictions were introduced)
To ensure we hear a diverse range of perspectives and experiences we have capped quotas on the number of people with a particular cancer type. If these quotas are filled you may not be able to be offered an interview but will be placed on a waiting list.
Click here to register your interest.
Building a Value-Based Health Care (VBHC) model for lung cancer using the Victorian Lung Cancer Registry (VLCR)
Delivering the best healthcare for patients with lung cancer in Victoria, within available resources, requires an understanding of clinical outcomes as well as patient reported experiences of their cancer care and measures of quality of life in order to understand the perceived value of different management and treatments for lung cancer. This pilot study aims to combine patient reported measures with the clinical data already collected by the Victorian Lung Cancer Registry as well as the costs to health services of optimal treatment at each stage of disease to create a value-based model for lung cancer care at several major cancer centres in Victoria.
Anyone across Australia who is living with or caring for someone who has been diagnosed with lung cancer, either recently or in the past.
For more information, please contact: Project Coordinator, Dr Susan Harden. Email: firstname.lastname@example.org
Become a community representative for lung cancer research
Peter MacCallum Cancer Centre is looking for people impacted by or living with lung cancer to play an important role in advancing the search for cancer cures by partnering with cancer researchers as community representatives. Community representatives don’t need a science background – Peter Mac’s researchers are seeking to learn from your experiences of cancer and cancer treatment. To find out more about becoming a Peter Mac community representative, please email your name, phone number and the cancer types you’re interested in to Peter MacCallum Cancer Centre’s Research Consumer Engagement Coordinator, Anna Jones, at email@example.com.
Out with Cancer Study
This study aims to understand the experiences and concerns of cancer survivors and carers within lesbian, gay, bisexual, transgender and intersex communities. This vulnerable population reports higher rates of cancer related distress and dissatisfaction with care than the general population. Their unique experiences and needs have been overlooked by cancer researchers, policy makers, and service providers. The goal of this study is to examine the perspectives of cancer survivors, their carers, and professional stakeholders, to inform targeted patient and carer resources, and recommendations for culturally competent cancer care and policy. The outcome will be critical new information to improve the health and wellbeing of sexual and gender minorities. The study will be recruiting participants for 12 months and all throughout 2020.
Inclusion criteria: Group 1: LGBTQI+ people aged 15 years or older and who have/ had cancer or medical intervention(s) to reduce cancer risk.
Group 2: Carers (partners, family members and friends of LGBTQI+ people with cancer, or, LGBTQI+ people who are cancer carers), aged 15 years or older.
Group 3: Healthcare professionals aged 18 years or older working in oncology.
Exclusion Criteria: less than 15 years of age, people with cancer who are not LGBTQI+, carers who do not meet the description above, healthcare professionals who do not work with people who have or have had cancer.
For more information or to participate, click here.
The Lung Cancer Nurse Specialist: Co-designing the role with patients and carers.
The University of Tasmania invite you to participate in a research study to see how lung cancer nurse specialists can improve their role in order to improve the overall experience of having lung cancer.
Phase 2 of this research is now open. Participation is via online survey. Click here to complete.
The study is being conducted as part of a Professional Doctorate by Renae Grundy under the supervision of Professor Ken Walsh and Professor Christine Stirling at the University of Tasmania. For more information or to request a paper-based survey contact firstname.lastname@example.org.
Designing a self-management package for pulmonary fibrosis: what are the essential components?
In recent research, people with pulmonary fibrosis (PF) highlighted the importance of self-management when living with the disease and expressed a strong desire for support to stay well with PF. There is currently no consensus on the components that define self-management in PF. In our recent qualitative study, healthcare professionals and people with PF have identified a range of components for PF in different areas that they felt were important for self-management of PF. These included lifestyle components such as exercise and nutrition, disease knowledge, symptom and disease management, understanding and management of treatments, end of life planning, and access to information and support. This study aims to achieve consensus between experts in PF and people with PF regarding the components that should be included in a self-management package for PF.
- Adults (18 years or over) with idiopathic pulmonary fibrosis (IPF) or non-IPF diagnosis
- Participants with a range of disease severity and treatment experiences
- Participants from across Australia
- Participants who have access to internet connection and a computer/smart mobile phone to take part in the online focus group.
To participate in this study, or for more information, please contact the study leads:
Professor Anne Holland (Chief investigator)
Telephone: (03) 9903 0214
Ms Joanna Lee (PhD candidate)
Telephone: 0431 689 361