Social Research

Participate in social research

• Cultural and linguistic diversity

  Exploring patient engagement for culturally and linguistically diverse consumers

  The aim of this research is to explore the individual, interpersonal and contextual features that impact patient safety and provide opportunities for CALD consumer engagement in cancer settings to develop engagement strategies that can enhance patient safety for CALD patients.

  Inclusion criteria 

  • Cancer consumers (patient or an informal carer/family support person for a person with cancer) who are accessing cancer services at the participating sites or have accessed the cancer service at the participating site in the last five years.
  • Be > 18 years.
  • Self-identify as from culturally and linguistically diverse (CALD) background.
  • Willing to give written consent and participate in the study.

  Study sites 

  • Prince of Wales Hospital, Randwick, NSW
  • Liverpool Hospital, Liverpool, NSW
  • Blacktown-Mt Druitt Hospital, Blacktown, NSW

  Please contact the study team for more information on participation: Ashfaq Chauhan ashfaq.chauhan@hdr.mq.edu.au or call +61298504045

• Lung cancer

  The availability and access to nutrition information after active cancer treatment: A mixed methods study including cancer patients and carers.

  The purpose of this study is to explore where and how nutrition information is sourced in cancer patients/carers that have finished active treatment. Results from this study will provide important information to optimally design future nutrition interventions to improve dietary intake in and meet unmet nutrition needs for cancer survivors.

  Inclusion criteria

  • Aged over 18 years
  • Have previously been diagnosed with cancer, or are you a carer of an adult diagnosed with cancer
  • Have you finished any active cancer treatment or are you a carer of an adult that has finished active treatment(i.e. surgery, chemotherapy, radiotherapy)
  • Have access to a computer/smart device with internet access.

  Exclusion criteria

  • Not aged over 18 years
  • Not previously diagnosed with cancer, or a carer of an adult diagnosed with cancer.
  • Still receiving active cancer treatment.
  • No access to a computer/smart device with internet access.

  To read the plain language statement and access the survey, click here.

  The Complementary and Alternative Medicines Perception and Use in Cancer Patients: The CAMPUS Study

  This study is trying to gather information on how many cancer patients are using Complementary and Alternative Medicines either alone or together with standard medical treatments such as chemotherapy and radiation therapy and why they are using them. It also aims to understand other information such as how long cancer patients have been using these alternative medicines, what their experience with them have been, and how they came to start using them.

  Inclusion criteria 

  • Anyone currently living in Australia aged 18 and older with a current or previous cancer diagnosis can participate in this study.

  Exclusion criteria 

  • Anyone currently living in Australia not aged 18 and older and not living with a current or previous cancer diagnosis.

  For more information please visit the website here or contact the Lead Investigator: Dr Maree Brinkman maree.brinkman@nbri.com.au

  Exercise and lung cancer – which outcomes are important to patients and carers?

  Little is known about which exercise outcomes are most important to people with lung cancer or carers of people with lung cancer. A systematic review completed by Dr Lara Edbrooke in 2019 showed there are 21 different measures to assess physical activity in lung cancer rehabilitation. This research project aims to understand the views of people with lung cancer or carers of people with lung cancer and find out which exercise outcomes are important to them. Information gained via this research project will help develop online resources for exercise staff (e.g. physiotherapists, exercise physiologists), within Australia and overseas, who work with people with lung cancer.

  Inclusion criteria 

  • Diagnosis of lung cancer at any stage of disease or a carer of a person living with lung cancer at any stage of disease
  • Adults (>18 years of age)
  • Australian residency status (from postcode)

  Exclusion criteria 

  • No diagnosis of lung cancer or being a carer for a person with lung cancer
  • Under 18 years of age
  • Unwilling or unable to complete an interview or attend focus groups via Zoom or phone call.

  If you are interested in learning more about this study and would like to participate, please contact Dr Lara Edbrooke by telephone: 0400 830 945 or email: larae@unimelb.edu.au or Ms Amy Bowman by email: bowman.a@unimelb.edu.au.

  Embedding exercise into routine cancer care: Developing tools and strategies to support exercise advice by the cancer care team and exercise participation by cancer patients

  This research aims to develop tools and strategies to support exercise advice by the cancer care team and exercise participation by cancer patients. Through a series of studies, we will ask health professionals and patients what they need to help integrate exercise into their practice/care and work with them to create the tools and strategies they identify. These co-designed tools will be made available on an open access multimedia website. The research seeks to address real world problems encountered by health professionals and patients, and create pragmatic, fit-for purpose solutions to address the problems faced in everyday practice.

  Inclusion criteria 

  • Diagnosis of any type of cancer
  • Within 3 years of starting cancer treatment for current cancer

  Exclusion criteria

  • Less than 18 years of age
  • Palliative care unit inpatient admission within last 3 months
  • Unable to read and speak English and do not have an English speaking carer to assist

  Complete the survey. 

  Cannabis use in Australian cancer patients: Prevalence, attitudes, and practices

  The aim of this study is to assess the current cannabis-related attitudes, beliefs, behaviours and practices in cancer patients throughout Australia. The information obtained during this study will help to inform a larger examination of cancer-related cannabis use in Australia.

  Inclusion criteria 

  • This invitation is open to any current or former cancer patient, aged 18 years or older, who has used any form of cannabis, for any reason, during their cancer treatment.

  For more information regarding this study, or to register for participation, click here.  

  Alternatively, should you have any general queries concerning the study or wish to discuss your participation, please contact Dr Jason Blunt via ph. (08) 8291 4339, or email jblunt@cancersa.org.au.

  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).

  Inclusion criteria 

  • 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.

  Exclusion criteria

  • You need to be able to read and write in English to take part in the study.

  Click here to find out more.

  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 anna.jones@petermac.org.

  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 renae.grundy@utas.edu.au.

   

• COPD, Asthma, Bronchiectasis & Interstitial Lung Disease

  Protecting your lungs: what are your experiences of public health measures (such as face masks) during the pandemic?

  There is some evidence that the measures to control spread of COVID-19 during the pandemic have also reduced the spread of otherviruses (such as colds and flu) that can cause asthma attacks/exacerbations (flare-ups) of lung conditions. The purpose of this project is to collect information on continuing with (COVID-19) infection control measures to prevent flare-ups of lung conditions in the future.

  Inclusion criteria

  • Adults (18 years or over) living in Australia
  • Self-reported diagnosis of COPD, asthma, bronchiectasis and/or interstitial lung disease

  Exclusion criteria 

  • Not an adult (18 years or over) living in Australia
  • No self-reported diagnosis of COPD, asthma, bronchiectasis and/or interstitial lung disease

  Please use the link below for further information about the research and to proceed with the online survey, click here.

   

  International quality standards to improve the care of children with bronchiectasis

  Based on the recommendations in the recently published European Respiratory Society (ERS) guidelines for the management of children and adolescents with bronchiectasis (2021), the international network Child-BEAR-Net have drafted 7 Quality Standards for managing children with bronchiectasis. The purpose of this study is to know what the target population think about these quality standards in an international online survey. This survey will assess thoughts on the draft Quality Standards and use these to shape the final standards.

  Inclusion criteria

  • Parents/relatives/caregivers of a child or young adult with bronchiectasis (aged 0-17 years)
  • Adults with bronchiectasis (aged 18+) who were diagnosed, or had bronchiectasis, as a child

  To find out more and to participate, click here.