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Osteoarthritis (OA) is a chronic, disabling, and prevalent disorder. As there is no cure for OA, long-term self-management is paramount. Support groups (SGs) can facilitate self-management among people living with OA. Understanding preferences in design and features of SGs, including online SGs (OSGs), among people with OA can inform future development of SG interventions for this condition.
The objective of this study was to investigate health care– and health information–seeking behavior, digital literacy, and preferences for the design of SGs in people with OA. The study also explored the perceived barriers and enablers to being involved in OSGs.
An online survey study was conducted with a mixed method design (quantitative and qualitative). Individuals aged ≥45 years with knee, hip, or back pain for ≥3 months were recruited from an extant patient database of the Institute of Bone and Joint Research via email invitations. Quantitative elements of the survey included questions about sociodemographic background; health care– and health information–seeking behavior; digital literacy; and previous participation in, and preferences for, SGs and OSGs. Respondents were classified into 2 groups (Yes-SG and No-SG) based on previous participation or interest in an SG. Group differences were assessed with Chi-square tests (significance level set at 5%). Responses to free-text questions relating to preferences regarding OSG engagement were analyzed qualitatively using an inductive thematic analysis.
A total of 415 people with OA completed the survey (300/415, 72.3% females; 252/415, 61.0% lived in a major city). The Yes-SG group included 307 (307/415, 73.9%) participants. Between the Yes-SG and No-SG groups, there were no differences in sociodemographic characteristics, health care– and health information–seeking behavior, and digital literacy. An online format was preferred by 126/259 (48.7%) of the Yes-SG group. Trained peer facilitators were preferred, and trustworthiness of advice and information were highly prioritized by the respondents. Qualitative analysis for OSG participation revealed 5 main themes. Lack of time and motivation were the main barriers identified. The main enablers were related to accessibility, enjoyment of the experience, and the content of the discussed information.
These findings highlight the preferences in design features and content of SGs and OSGs and may assist in the further development of such groups.
Osteoarthritis (OA) is a highly prevalent chronic condition [
The international chronic condition self-management support (CCSMS) framework describes principles to guide the implementation of strategies to support self-management [
A medium through which people with OA can potentially access social support and networks is support groups (SGs). SGs aim to provide avenues for people with a disease or condition to share information, provide empathy, and promote positive health behaviors. Given the availability of the internet in most households in the Western countries [
If SGs and OSGs are to be employed as strategies of self-management support, the principles of the CCSMS framework should be considered [
An online survey study was conducted with a mixed method design conforming with the checklist for reporting result of internet electronic surveys (
People aged ≥45 years who had previously received a clinical diagnosis of OA for any joint [
A generic sample size calculation was used to determine the minimum sample size needed for generalizable results, given the exploratory aims of the study. Considering the estimated population size of people living with OA (primarily affecting the hands, spine, knees, and hips) in Australia is over 2 million [
Data collection occurred between March and September 2018. The survey was administered through the Research Electronic Data Capture (REDCap) survey software (version 9.3.6, Vanderbilt University) and comprised closed, open, and multiple-choice questions (
All data were exported from REDCap into Microsoft Excel, and quantitative data were processed using the Statistical Package for the Social Science (version 13.0, IBM). All nominal or categorical variables were described with absolute frequency and percentages, and ordinal data were described with median and interquartile range. Respondents were categorized in 2 groups based on their response to the question “Have you ever been a part of an SG?” (Q17), followed by the question “Are you still a part of this SG?” (Q17a). If the answer on the former (Q17) was
Flowchart of questions for classifying respondents into Yes-SG and No-SG. Logic questions included in the survey that were not used for classification are specified with an asterisk. Q: question; SG: support group.
Data from all respondents (Yes-SG and No-SG groups) were considered in the qualitative analysis. To explore perspectives on the barriers and enablers to involvement in an OSG, inductive thematic analysis was conducted with the free-text responses following principles outlined by Braun and Clarke [
A total of 695 respondents accessed the survey. Of these, 39 did not meet the inclusion criteria, and 235 did not complete the survey. In total, 415 respondents with OA completed the survey and were included in the analysis. The Yes-SG group comprised those who were either currently part of an SG (n=48) or interested in joining one (n=259). The No-SG group comprised those who were neither currently part of an SG (n=52) nor interested in joining one (n=56;
Sociodemographic characteristics and health care– and health information–seeking behavior of respondents are described in
Sociodemographic characteristics and health care– and health information–seeking behavior of the survey respondents.
Sociodemographic characteristics and health information–seeking behavior | All respondents (N=415) | Yes-SGa (N=307) | No-SGb (N=108) | ||
Sex (female), Qc3, n (%) | 300 (72.3) | 225 (73.3) | 75 (69.4) | .44 | |
|
.62 | ||||
|
Major city | 252 (61.0) | 184 (60.3) | 68 (63.0) |
|
|
Inner regional | 110 (26.6) | 88 (28.9) | 22 (20.4) |
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|
Outer regional | 42 (10.2) | 30 (9.8) | 12 (11.1) |
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|
Remote | 9 (2.2) | 3 (1.0) | 6 (5.6) |
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|
.02 | ||||
|
Australian Capital Territory | 19 (4.6) | 16 (5.2) | 3 (2.8) |
|
|
New South Wales | 289 (69.6) | 214 (69.7) | 75 (69.4) |
|
|
Queensland | 28 (6.7) | 22 (7.2) | 6 (5.6) |
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|
South Australia | 6 (1.4) | 3 (1.0) | 3 (2.8) |
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|
Tasmania | 9 (2.2) | 6 (2.0) | 3 (2.8) |
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|
Victoria | 54 (13.0) | 40 (13.0) | 14 (13.0) |
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|
Western Australia | 10 (2.4) | 6 (2.0) | 4 (3.7) |
|
|
.09 | ||||
|
Retired | 189 (45.8) | 145 (47.5) | 44 (40.7) |
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|
Working | 165 (40.0) | 115 (37.7) | 50 (46.3) |
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|
Pension | 31 (7.5) | 27 (8.9) | 4 (3.7) |
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|
Not working (eg, unemployed or caring for another person) | 28 (6.8) | 18 (5.9) | 10 (9.3) |
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|
.65 | ||||
|
Careful | 179 (43.1) | 132 (43.0) | 47 (43.5) |
|
|
Able to manage | 32 (7.7) | 21 (6.8) | 11 (10.2) |
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|
Straining | 133 (32.0) | 99 (32.2) | 34 (31.5) |
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|
Comfortable | 71 (17.1) | 55 (17.9) | 16 (14.8) |
|
|
.90 | ||||
|
Year 11 or below | 67 (16.2) | 46 (15.0) | 21 (19.4) |
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|
Year 12 | 28 (6.8) | 22 (7.2) | 6 (5.6) |
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|
Certificate 3 or 4 | 57 (13.8) | 41 (13.4) | 16 (14.8) |
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|
Diploma/advanced diploma | 92 (22.2) | 69 (22.5) | 23 (21.3) |
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|
Undergraduate | 79 (19.1) | 60 (19.6) | 19 (17.6) |
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Postgraduate | 91 (22.0) | 68 (22.2) | 23 (21.3) |
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Limitation of daily activities (0-100), Q8, median (IQR) | 52 (31-66) | 52 (31-66) | 51 (32.5-65) | .92 | |
|
.57 | ||||
|
I do not currently | 100 (24.1) | 75 (24.4) | 25 (23.1) |
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|
Once a year | 36 (8.7) | 23 (7.5) | 13 (12.0) |
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|
Once every 6 months | 50 (12.0) | 39 (12.7) | 11 (10.2) |
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|
Once every 3 months | 85 (20.5) | 63 (20.5) | 22 (20.4) |
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Once monthly | 108 (26.0) | 83 (27.0) | 25 (23.1) |
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Once weekly | 36 (8.7) | 24 (7.8) | 12 (11.1) |
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.38 | ||||
|
Yes | 367 (88.4) | 274 (89.3) | 93 (86.1) |
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|
No | 48 (11.6) | 33 (10.7) | 15 (13.9) |
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—e | ||||
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Website endorsed by advocacy group | 228 (62.1) | 177 (64.6) | 51 (54.8) |
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Google or internet search | 172 (46.9) | 132 (48.2) | 40 (43.0) |
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Health app | 143 (39.0) | 111 (40.5) | 32 (34.4) |
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|
Wikipedia | 117 (31.9) | 97 (35.4) | 20 (21.5) |
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Newspaper/magazine | 87 (23.7) | 58 (21.2) | 29 (31.2) |
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Free flyers | 81 (22.1) | 50 (18.3) | 31 (33.3) |
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Internet forums | 70 (19.1) | 49 (17.9) | 21 (22.6) |
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|
Podcasts | 69 (18.8) | 50 (18.3) | 19 (20.4) |
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Television/radio | 68 (18.5) | 48 (17.5) | 20 (21.5) |
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Social media | 66 (18.0) | 50 (18.3) | 16 (17.2) |
|
aUsing or wishing to join a support group.
bNot using and not interested in joining or using a support group.
cQ: question.
dAustralian International Standard Recording Code national agency.
eNot applicable.
Digital literacy characteristics, including the type of electronic device, frequency of internet use, and self-reported ability to use the internet, were not statistically different (
For those who reported having been part of an SG (N=100), 32 had been part of it for <6 months, 28 between 6 months and 2 years, and 40 for >2 years. The majority participated in an SG delivered in person (54/100, 54.0%) or Web-based through social media (eg, Facebook; 41/100, 41.0%). Remaining respondents (3/100, 3%) participated over the phone and Web-based through a specialist website. For those who were not currently part of an SG (N=52), only 29 informed the reasons for leaving it. The main reported reason was “Not enough time to participate” (18/29, 62.1%), followed by “I did not find the information relevant to me” (6/29, 20.7%) and “I did not agree with the information on the SG” (3/29, 10.3%).
Regarding the level of importance of the different types of information that could be provided, Yes-SG respondents most frequently reported information pertaining to having
Among all respondents, 369 out of 415 (88.9%) thought they would (strongly) benefit from an OSG, 260 out of 415 (62.7%) thought receiving support from peers is (extremely) important, and 243 out of 415 (58.6%) were (extremely) motivated to use an OSG. Within the Yes-SG group, 126 out of 259 respondents (48.7%) indicated that they would prefer to access an SG online (eg, online format), 67 (25.9%) through a face-to-face meeting, 58 (22.4%) via email, and 8 (2.9%) via phone (
Preferences on information distribution for Yes–support group.
Preferences on service distribution for Yes–support group.
Thematic analysis of the qualitative responses identified 5 key themes related to barriers and enablers to OSG use: (1) ease of access, (2) enjoyment of experience, (3) information quality, (4) time, and (5) motivation. An overview of themes and subthemes is provided in
Analysis identified that
The
[OSGs] can be very supportive but sometimes they seem to attract people who have had negative experiences with treatment, health professionals, etc. So, you need to be careful of some comments and information.
The impersonal nature of online contact was mentioned by many respondents, and having access to personalized features within the OSG, such as familiar people, face-to-face opportunities, and a contactable person for phone and/or online support, was requested. For example, Participant 5 said:
[The OSG] loses the personal touch. Like talking to a computer!! You wouldn't know if your problem is being addressed or if it’s generalized.
Quality of information is considered an important aspect of an OSG. Respondents discussed that the content of an OSG should include relevant, novel, and dynamic information on a range of different topics that are tailored to the individual needs. For example, Participant 6 said:
Maybe specific weekly topics and activities—that would keep me more motivated.
In addition, respondents said that it was essential that the information provided in the OSG is trustworthy and facilitators are qualified. Participant 7 stated:
[I] would not like the sessions [within the OSG] to be just chat sessions. I believe they should be chaired by a medical specialist in the OA field.
Overall, respondents highlighted that information should be trustworthy and distributed in a clear and concise language that avoids jargon.
The concept of
[I would prefer] a specific day and time allocated on a fortnightly or monthly basis.
Similarly, flexibility with regard to the amount of time to engage and the time of day seemed important to respondents. The ability to return to information at a later time or print was also suggested:
Just being able to access at any time the information.
Most respondents highlighted that having limited time available per day might act as a barrier to their engagement with an OSG.
Respondents reported different views on
I am in full support of this venture, especially as I live in a regional town with minimal services and access to information comes mainly from the Internet.
Some reported they might require more motivation before becoming involved in an OSG:
I'm a bit skeptical, but would give it a try.
Others reported they lack motivation:
I don’t really like online anything.
Respondents suggested that reminders and notifications via SMS and/or email may facilitate engagement. Also, knowledge of the potential benefits of OSGs could help motivate patients to be involved.
This study used a mixed method design to explore health care– and health information–seeking behavior, digital literacy, preferences, and barriers for the design of SGs for people living with OA. Of the 415 survey participants, 307 (74.0%) were either currently using or wishing to join an SG, and the majority identified
Strengths and limitations of this study need to be considered. Strengths included the size of the respondent group (well powered to provide generalizable data) and the high response rate after distribution of the survey. However, it is important to note the limitations to the generalizability of this study that are highly contextual. As participants represent a sample of convenience, the results may not represent the views of all people with hip, knee, or back OA. Results may also not be applicable across countries, particularly, where cultural and social conditions differ considerably from the Australian context. As recruitment was undertaken via an institutional patient database, there is also the possibility that our cohort is more comfortable with, and capable of engaging with, technology. In addition, respondents were also likely to be active seekers of health information, have English language competency, and have higher health literacy. As such, participants may not represent vulnerable groups, including people who need additional support for such health engagement and those with culturally and linguistically diverse background. A limitation of the survey is that it may not reflect all types of (online) health information resources. As such, the results should be interpreted relative to the conducted survey. This study had a high representation of people who are either currently using or interested in joining an SG (Yes-SG) and may underrepresent people who do not use SGs. Furthermore, it is possible that respondents who were not currently part of an SG (part of the No-SG group) were still interested in joining another SG, but this information was not collected. The authors acknowledge potential differences in health care– and health information–seeking behavior, digital literacy, and preferences within the Yes-SG group, for example, differences between people who are currently using and those who are interested in joining an SG. Although the majority of the Yes-SG group comprised people interested in joining an SG (259/307, 84.4%), further research is required to understand if there are differences in preferences (eg, specialist website, social media, or in person) between people who are willing to use OA SGs and those who are already in such groups. The quantitative analysis examined differences between Yes-SG and No-SG for survey questions regarding SGs including OSGs, whereas the qualitative analysis included data of all respondents but only related to OSG questions. This needs to be considered when interpreting the results. Data used for the qualitative analysis of this study were obtained through 3 open-ended survey questions. This approach potentially limits the ability to conduct an in-depth exploration of individuals’ attitudes and beliefs regarding OSGs, which may be possible with interviews. However, it does enable anonymous responses, which may be advantageous by reducing the risk of a Hawthorn effect bias.
Previous research reports that people with higher income and education levels [
Respondents in our study rated advice on pain management, new treatment options, and provision of research results in a consumer-friendly language as extremely important when they were asked to rate different types of information that could be available via SGs. Similarly, the qualitative analysis revealed the importance of having access to relevant, novel information on a range of topics tailored to individuals in an OSG. Dynamic information is preferred in clear and concise language that avoids jargon. Previous research has indicated that accurate and up-to-date information can promote active participation, allow people to make informed choices [
The majority of respondents who were currently using or interested in joining SGs reported that they were likely to trust advice from either a health professional or a trained peer facilitator. However, qualitative analysis highlighted that some respondents felt the opposite. Specifically, respondents stressed the importance of attaining trustworthy information from online facilitators in OSGs. Previous research examining enablers and barriers to using SGs in patients with arthritis, breast cancer, or fibromyalgia found that older participants (compared with younger ones) did not favor OSGs because of a lack of trust in the internet [
From this study, we suggest that the use of SGs could be facilitated by the inclusion of digital options such as email, social media, and health websites to enhance engagement. Our findings also suggest that efforts need to be made to ensure the online platform is intuitive and accessible. Information to help people make decisions about which treatments to seek are desired by users of OSG. Other important features of an OSG for hip/knee OA or back pain include having an expert health professional or trained peer facilitator to moderate the OSG, providing information that is free of jargon, and incorporating reminders to facilitate engagement. Members also need to feel confident about the security of their personal information, the trustworthiness of the information and advice, and the credibility of the experts providing input to the group. Finally, a moderator or facilitator’s role should include efforts to maintain interest, so the membership continues to be motivated to engage.
Checklist for Reporting Result of Internet E-surveys (CHERRIES).
Survey questions.
Table S1. Digital literacy characteristics of survey respondents.
Table S2. Themes and subthemes derived from the qualitative analysis.
Chronic Condition Self-Management Support
Human Research Ethics Committee
National Health and Medical Research Council
osteoarthritis
online support group
Research Electronic Data Capture
support group
Funding for this study was provided by a Program Grant (APP1091302) and a Centre of Research Excellence Grant (APP1079078) from the National Health and Medical Research Council (NHMRC) of Australia. DJH, KB, and PWH (APP1102905) are supported by fellowships from the NHMRC.
DJH provides consulting advice to Merck Serono, TLCBio, Pfizer, and Lilly.