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Two important factors that prolong and exacerbate chronic noncancer pain (CNCP) and disability are low pain self-efficacy and loneliness. Yet, few interventions have shown long-term sustained improvements in pain self-efficacy, and there are no evidence-based treatments that target social connectedness in people living with CNCP. More effective and accessible interventions designed to target self-efficacy and social connectedness could ease the burden of CNCP.
To co-design accessible interventions to increase pain self-efficacy, social connection, pain-related outcomes, and quality of life, this study explored patients’ interest and preferences for digital peer-delivered interventions for CNCP as well as implementation barriers and enablers.
This cross-sectional mixed methods study was part of a larger longitudinal cohort study. Adult Australian residents (N=186) with CNCP diagnosed by a medical professional or pain specialist were included. Participants were initially recruited through advertising on professional pain social media accounts and websites. Questions examined whether patients were interested in digital peer-delivered interventions and their preferences for specific features (eg, Newsfeed). Pain self-efficacy and loneliness were assessed using validated questionnaires, and the association between these factors and interest in digital peer-delivered support was explored. Open-ended questions explored implementation barriers, enablers, and suggestions for consideration in intervention design.
There was interest in accessing digital peer-delivered interventions, with almost half of the sample indicating that they would access it if it was available. Those who indicated an interest in digital peer interventions reported both lower pain self-efficacy and greater loneliness than those who were not interested. Intervention content that incorporated education, links to health services and resources, and delivery of support by peer coaches were the most frequently preferred intervention features. Three potential benefits were identified:
Digital peer-delivered interventions were of particular interest to those with CNCP who had lower levels of pain self-efficacy and higher levels of loneliness. Future co-design work could tailor digital peer-delivered interventions to these unmet needs. Intervention preferences and implementation barriers and enablers identified in this study could guide further co-design and the development of such interventions.
Neck and low back pain are the leading causes of disability burden in Australia and worldwide [
A lack of confidence in carrying out daily activities despite the pain (low pain self-efficacy [
The benefits of improved physical and psychological health and longevity that arise from feelings of social connectedness are widely recognized [
Peer-to-peer support presents an opportunity for intervention to improve pain self-efficacy within an environment of collective support [
Qualitative studies (N=20) [
This study aimed to examine patient interest in digital peer-delivered interventions for CNCP and potential factors associated with interest (with a focus on pain self-efficacy and loneliness), and explore preferences for peer-delivered support as well as implementation barriers and enablers. It was hypothesized that there would be patient interest in digital peer support interventions for CNCP, but that patients with lower pain self-efficacy and self-reported feelings of loneliness would be particularly interested. Findings will inform the co-design of new and innovative digital peer support interventions to increase pain self-efficacy, pain-related outcomes, and quality of life among those with CNCP.
This cross-sectional study conducted in Australia is part of a larger longitudinal cohort study that aims to examine psychosocial factors associated with pain, mental health, and substance use disorders. At the end of the wave 1 survey (2019), participants were invited to provide contact information if they wished to participate in future research (84% accepted). Data presented in this study are from wave 3 collected between November 2021 and January 2022. Participants were initially recruited through advertising on professional pain social media accounts and websites (eg, Chronic Pain Australia). Individuals who expressed an interest were provided with a link to the web-based questionnaire (completed in Research Electronic Data Capture [REDCap], hosted by The University of Queensland) [
All participants provided informed consent. Participants were eligible to enter the draw for 1 of 2 Aus $100 (US $72) gift cards. The web-based survey took approximately 30 minutes to complete, and the data collected were deidentified for analysis. The study was approved by the relevant institutional review board (approval number: 2019000610, The University of Queensland Human Research Ethics Committee).
Participants completed validated measures of their pain experience and related psychosocial factors and purpose-built questions examining digital peer support intervention needs and preferences. Measures relevant to this study’s aims are described below.
Participants were asked for their date of birth, gender, current employment status (employed vs unemployed), highest level of education (university degree vs no university degree), and current relationship status (in a relationship vs not in a relationship). They were also asked to report on any current mental health diagnoses.
Participants were asked about the physical location of pain and the original cause. They were asked to report on the number of days in the past 90 in which they experienced pain. Participants also completed the Brief Pain Inventory [
The Pain Self-Efficacy Questionnaire [
The Short-Form UCLA Loneliness Scale (UCLS-8) includes 8 items measured on a 4-point Likert-type scale (1=“Never” to 4=“Always”). Two items are reversed scored. Scores are summed with higher scores indicating a greater degree of loneliness. The UCLS-8 has demonstrated good reliability and validity [
Participants were asked about their interest in participating in a digital peer support group for CNCP if it were available, and their intervention preferences (newsfeed, private chat, questionnaires, monitoring and support by trained peer coaches, and educational information or tips). Responses were recorded on a dichotomous scale (yes or no). Three open-ended response questions were included to examine the potential benefits, barriers, and recommendations for a digital CNCP peer support group. A full summary of the purpose-built intervention questions can be found in
All statistical analyses were performed using SPSS (version 27.0; IBM Corp). Initial descriptive statistics were calculated to describe the demographic and clinical characteristics of the sample. Frequency analyses and cross-tabulations were used to examine interest in the digital peer support intervention and preferences. Two one-way between groups ANOVAs were conducted to examine whether interest in digital peer support interventions was associated with pain self-efficacy and loneliness.
Qualitative analysis was performed using NVIVO (Version 12.5.0; QSR International). Comments from the 3 open-ended questions were thematically coded using data-driven codes. Coding undertook 2 iterations until all comments met a criterion for a code. Codes were then organized into higher-order themes. Themes were refined through discussion (EY and RE).
There were 225 respondents to the wave 3 questionnaire. Data were excluded from 39 participants due to missing data on all questions about a digital peer support intervention. A missing variable analysis showed data were missing completely at random (Little’s Missing Completely At Random test [MCAR] χ2136=18.06;
The final sample included 186 participants (130 female, 41 male, and 2 other) ranging in ages from 21 to 86 years.
Patient demographic characteristics (N=186).
Patient characteristics | Valuesa | |
Age (years), mean (SD) | 54.9 (15.74) | |
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Female | 130 (69.9) |
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Male | 41 (22.0) |
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Other | 2 (1.1) |
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High school | 38 (20.4) |
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Trade/diploma | 52 (28.0) |
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Bachelor’s degree | 41 (22.0) |
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Postgraduate degree | 43 (23.1) |
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Full-time | 36 (19.4) |
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Part-time/casual/contract | 24 (12.9) |
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Student | 11 (5.9) |
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Unemployed | 22 (11.8) |
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Retired | 65 (34.9) |
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Volunteer | 7 (3.8) |
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Other | 21 (11.3) |
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Single | 32 (17.2) |
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Relationship | 8 (4.3) |
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De facto | 15 (8.1) |
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Married | 82 (44.1) |
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Divorce | 20 (10.8) |
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Separated | 5 (2.7) |
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Widowed | 10 (5.4) |
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Head/face | 47 (25.3) |
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Neck | 86 (46.2) |
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Shoulder/upper limbs | 96 (51.6) |
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Back/spine/sacrum | 120 (64.5) |
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Lower limbs | 90 (48.4) |
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Whole body | 43 (23.1) |
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Abdomen/pelvis/groin | 63 (33.9) |
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Road traffic crash injury | 6 (32.0) |
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Injury at work | 26 (14.0) |
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After surgery | 10 (5.4) |
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Injury in another setting | 21 (11.3) |
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Medical condition other than cancer | 53 (28.5) |
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No obvious cause | 27 (14.5) |
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Other | 29 (15.6) |
aTotal percentages do not add to 100 where multiple options could be selected (employment and pain location).
Clinical characteristics of the sample.
Variable | Participants, n | Score, mean (SD) |
Pain severity | 174 | 5.39 (2.12)a |
Pain interference | 174 | 5.41 (2.33)a |
Pain self-efficacy | 174 | 31.17 (15.20)b |
Loneliness | 186 | 17.25 (4.19)c |
aScore range 0-10.
bScore range 0-60.
cScore range 8-32.
Almost half (n=88, 47.3%) of patients reported that they would be interested in accessing digital peer support if it was available. Interest in digital peer support interventions was significantly associated with pain self-efficacy, with those indicating that they were interested in reporting lower levels of pain self-efficacy (
Means and SDs for pain self-efficacy and loneliness and interest in peer support.
Variable | Participants, n | Score, mean (SD) | |
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Yes | 90 | 28.23 (15.61) |
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No | 84 | 33.78 (14.32) |
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Yes | 98 | 18.41 (4.08) |
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No | 88 | 16.20 (4.02) |
aScore range 0-60.
bScore range 8-32.
Of the 88 participants who reported that they would be interested in a digital peer support intervention, the majority indicated preferences for educational content (n=71, 80.7%) and support from peer coaches (n=72, 81.8%). Most indicated an interest in receiving information and links to other health services (n=61, 69.3%) and more than half (n=49, 55.7%) were interested in content delivered via a newsfeed, access to questionnaires with feedback, and a private chat function.
Interestingly, almost one-quarter of the 98 participants who reported they were
Summary of intervention preferences for the total sample and those interested or not interested in digital peer support.
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Interested in peer support (n=88), n (%) | Not interested in peer support (n=98), n (%) | Total sample (N=186), n (%) | ||||||||||||
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Yes | No | Yes | No | Yes | No | |||||||||
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Education | 71 (80.7) | 17 (19.3) | 21 (21.4) | 77 (78.6) | 101 (54.3) | 85 (45.7) | ||||||||
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Links to health services | 61 (69.3) | 27 (30.7) | 24 (24.5) | 74 (75.5) | 85 (45.7) | 101 (54.3) | ||||||||
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Newsfeed | 49 (55.7) | 39 (44.3) | 11 (11.2) | 87 (88.8) | 60 (32.3) | 126 (67.7) | ||||||||
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Support by coaches | 72 (81.8) | 16 (18.2) | 21 (21.4) | 77 (78.6) | 93 (50.0) | 93 (50.0) | ||||||||
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Questionnaires/ feedback | 51(58.0) | 37 (42.0) | 13 (13.3) | 85 (86.7) | 64 (34.4) | 122 (65.6) | ||||||||
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Private chat | 51 (58.0) | 37 (42.0) | 10 (10.2) | 88 (89.8) | 61 (32.8) | 125 (67.2) |
From qualitative reports, there were 3 themes reflecting the potential benefits of digital peer support interventions:
Some participants reported that digital peer support could provide an opportunity for
Six themes reflected the potential barriers of peer support: negative focus on pain, judgement, lack of engagement, negative impact on mental health, privacy and security concerns, and unmet personal preferences. There were examples of how digital peer support may result in a negative focus on pain: “Everyone's pain is different, and I would become irritated by all the whinging.”
Participants were also concerned about
Some reported personal and situational factors that could limit their engagement in digital peer support, including restricted access, limited time, and competing demands: “Being able to offer help when I feel I can't be reliable.”
Possible
Eight additional suggestions from participants were identified and are summarized in
Description and examples of themes identified and frequency count.
Theme | Description | Example | Frequency, %a | |||
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Shared experience | Ease of relating to others who share similar experiences to your own |
“A shared understanding without judgement” “Having someone with similar experiences to share with” |
38.5 | ||
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Social connection | Opportunity for social connection and feeling less alone |
“Just connecting with others” “Not feeling alone” |
27.8 | ||
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Shared pain management solutions | Opportunity to share ideas and solutions, problem solving with others, and motivating, or encouraging each other |
“Sharing experiences and strategies for dealing with pain” “Talking to others who understand what it like to live with constant pain, and how to get some joy out of life” |
27.0 | ||
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Negative focus on pain | People using the platform to discuss their pain in a negative way and not contributing constructively, and the negative impact this focus on pain can have |
“Everyone's pain is different, and I would become irritated by all the whinging” “Often people use it for complaining and just want platitudes” |
25.5 | ||
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Judgement | Experiencing negative comments from others about pain experience, feeling a lack of connection with pain community, or an environment that is competitive about severity of pain |
“In the past I’ve found they can descend into a competition for “who is entitled to feel more pain” “I am not in as much pain as I was when first diagnosed…sometimes it makes me feel ashamed or distant from the chronic pain community because I'm not ‘in pain’” |
10.2 | ||
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Lack of engagement | Both personal and situation factors to engagement including, access, time, and motivational factors |
“Interference with my work days” “Not feeling up to it physically” |
20.4 | ||
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Negative impact on mental health | Experiencing a worsening of symptoms of depression or anxiety due to exposure to content on living with pain and concern over others met on the internet |
“Taking onboard other peoples’ issues” “I was in a Facebook group, and I left it because it made me more anxious.” “Exposure to too much chronic pain not resolved” |
17.2 | ||
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Privacy and security concerns | Concerns about privacy or lack of comfort with being on the internet |
“Security of information. Privacy. Knowing who you’re talking to” |
23 | ||
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Unmet personal preferences | Preference for in-person connection and lack of need for further support |
“Online is very impersonal. Real connections and communications are made with people in person” “Not interested as have plenty of distractions and interests through radio, podcasts, audiobooks and sometimes TV” |
12 |
aBenefits were summarized from 128 participants and barriers from 92 participants.
“Group would need to be adequately moderated by trained facilitators”
“Maybe groups that are for people with chronic pain. Like, this is a guitar group for people impacted by chronic pain.”
“Clinical discussion on pain and management of the pain”
“I would like to have access to the management of chronic pain through mindfulness - specialised meditations…”
“Further literature (current research) about chronic pain, pain management”
“Email newsletter style with pain information and up to date medical information”
“I would want to be around success stories, people that strive and survive and don’t let the chronic pain destroy them”
“Meetups (online or RL) with access to discounted workshops for pain management (eg, Pilates classes for low back pain, tai chi and yoga classes as low impact exercise modalities)”
The aim of this study was to examine interest in digital peer support interventions for CNCP, the role of pain self-efficacy and loneliness, and preferences for both content and delivery features. We also explored potential benefits, barriers, and suggestions for digital peer supported interventions. Our findings showed that there was interest in accessing digital peer-delivered interventions, with almost half of the sample indicating that they would access it if it was available. As expected, those who indicated interest in digital peer interventions reported both lower pain self-efficacy and greater loneliness than those who were not interested. Intervention content that incorporated education and links to health services and resources as well as delivery of support by peer coaches were the most frequently preferred intervention features. Three potential benefits were identified:
Interest in digital peer support was related to participants’ level of pain self-efficacy. Those who were less confident in managing day-to-day despite pain were more likely to be interested in accessing a digital peer support intervention. Low pain self-efficacy is a stronger predictor of pain-related disability than other psychological factors [
Those who reported higher levels of loneliness were more likely to be interested in accessing a digital peer-delivered intervention. This finding suggests that some individuals with CNCP have an unmet need for social connection. Participants highlighted that digital peer interventions could meet this need, providing a feeling of not being alone and a sense of “community.” Suggestions by participants for opportunities to connect with others who share common interests such as hobbies may support involvement in meaningful activities and contribute to a positive sense of self. It may also be that through this social connection they develop a “recovery identity” within the group that is collectively empowering [
Participants reported a high level of interest in receiving support from peer coaches. The role of peers in peer-delivered interventions can take many forms (eg, peer counselor, peer educator, peer support, peer case manager, and peer facilitator [
A preference for educational content and links to health services was found. Digital peer-delivered interventions could be well positioned to increase awareness of available resources and services as a “resource-hub.” Studies have shown that when peers adopt an educator role, intervention engagement can be improved [
On average, approximately half of all participants indicated interest in each of the content and delivery features. However, there was overall less interest in a private chat function and completing questionnaires with feedback. Further investigation of specific preferences and how they may or may not be beneficial could guide how best to design and implement them. Providing options for digital (eg, mobile app) personalization may allow users to tailor aspects of the intervention to their specific needs and preferences. For example, participants may be able to opt out of the newsfeed function while still accessing the digital workshops or talks delivered by professionals. The degree of adaptability may increase the acceptability and usability of digital peer-supported interventions.
Our results suggest some participants may have been unsure of their interest in digital peer support. That is, a proportion of individuals who indicated a lack of interest in the broad idea of an intervention nevertheless indicated an interest in some of the proposed content and delivery features. It is possible that participants were initially unsure of their interest as relatively limited information about the digital peer support intervention was provided. For example, one participant commented, “Rather than yes/no – unsure – would depend on the group and group dynamics.” With further information about the intervention and context, it is possible that a greater number of individuals may be interested. Future research could explore any possible ambivalence. Supplementing web-based questionnaires with individual interviews and focus groups may also assist in exploring these issues. These findings may also indicate consensus on the needs of the CNCP community irrespective of personal interest in an intervention. This was evident in some of the responses provided by participants: “I wouldn’t be interested…however, I think they are good for people that need them” and “I don’t (know) whether I’d want to talk about chronic pain problems with others, I prefer to only talk about it with my GP. I think it is person(al) preference.” Seeking the perspectives of those who are not personally interested may elicit information relevant to the community at large and may also serve the function of supporting others.
A prominent barrier identified by participants was the potential negative impact of participating in a CNCP digital peer support intervention may have on mental health and well-being. This was a genuine concern. Studies have found a negative impact of exposure to the pain of others (vicarious pain) on pain outcomes [
Recent reviews of patient-targeted mobile apps for pain self-management found that key stakeholders, including patients and health care professionals are not routinely engaged in the
We included a community sample of 186 patients. While there are no guidelines on the minimum number of key stakeholders or frequency/intensity of engagement that is needed in co-design, it is possible that our results may not generalize to the broader CNCP population or beyond the Australian context where patients have access to a relatively high standard of public health care. Continual and increased engagement of treatment-seeking patients in the subsequent steps of co-design and co-development of digital peer-delivered interventions could increase the customizability of the solution, to fit a wider range of users. We used yes or no questions to assess interest in a digital peer support intervention and its specific features. Future research may benefit from exploring nuanced perspectives by using continuous Likert scales to rate interest, or an additional response option of “Unsure.” Inclusion of additional qualitative methods (eg, interviews) may enrich the co-design process. In particular, further exploration of the goals that individuals would like to achieve may assist in tailoring intervention design to meet both their needs and enhance motivational factors. We examined 2 factors that were potentially associated with interest in digital peer-delivered interventions. There may be additional relevant factors, however, such as treatment expectations and related social connectedness concepts (eg, social group memberships [
Participants were recruited through advertisements on professional pain social media accounts and websites. The sampling method targeted people who had access to and were current users of the internet and social media. It is not clear whether interest in digital peer support interventions varies for those who may not be actively engaged in social media or currently have limited use of or access to the internet. Their perspectives could offer additional insights into the possible barriers and enablers to accessing digital social interventions. This study did not assess the participants’ level of digital literacy. Examining individuals’ skill or confidence in use of digital platforms may inform the design and impact of these digital interventions—for example, the level of support for technical questions or issues, or the relevance of tutorials or demonstrations. Future studies could also explore tailoring of peer support interventions for culturally and linguistically diverse populations. Social media sites can provide speech to text, translate text, as well as other accessibility modifications. Assessing the need for these features could be incorporated into the co-design process. Ensuring equitable access to digital social interventions is an important consideration in future work.
Partnering with patients who have CNCP to identify their intervention preferences is critical to the co-design of impactful new and innovative digital treatments that better meet their needs and translate into everyday clinical care [
Purpose-built digital peer support intervention questions.
chronic noncancer pain
Research Electronic Data Capture
UCLA Loneliness Scale
Data access is restricted by our ethics protocol; however, the data sets generated during and analyzed during this study may be available from the corresponding author on reasonable request.
We wish to thank the participants who participated in this study. We also wish to thank Ms Chloe-Emily Eather, Mr Ryan Ray, and Mr Mariusz Wasilewicz for their support with data collection. Internal university funds provided by RE and LB were used for participant reimbursements. RE is supported by a Research Stimulus Fellowship administered by The University of Queensland and an Advance Queensland Women’s Research Assistance Program grant administered by the Queensland Government Department of Innovation, Tourism Industry Development.
None declared.