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Although peer-to-peer contact might empower patients in various ways, studies show that only a few patients actually engage in support groups.
The objective of our study was to explore factors that facilitate or impede engagement in face-to-face and online peer support, using the Theory of Planned Behavior.
A questionnaire was completed by 679 patients being treated for arthritis, breast cancer, or fibromyalgia at two Dutch regional hospitals.
Our results showed that only a minority of the patients engaged in organized forms of peer support. In total 10% (65/679) of the respondents had engaged in face-to-face meetings for patients in the past year. Only 4% (30/679) of the respondents had contact with peers via the Internet in the past year. Patients were more positive about face-to-face peer support than about online peer support (
Although Health 2.0 Internet technology has significantly increased opportunities for having contact with fellow patients, only a minority seem to be interested in organized forms of peer contact (either online or face-to-face). Patients seem somewhat more positive about face-to-face contact than about online contact.
Over the past decades, several studies have shown that patients tend to profit from engagement in peer support groups. Such group participation can offer emotional support, confidence, and strength [
People who engage in face-to-face peer support groups are more likely than nonparticipants to be female, younger, more highly educated, and of a higher economic status [
With the availability of the Internet, so too the opportunity to share concerns and experiences with peers online has become available. The outcomes of participation in online support groups are in line with the outcomes of participation in face-to-face support groups [
Little is known about determinants of (non)participation in online support groups. We are aware of only two studies that provided some insight. Dutta and Feng [
In the present study we focused on determinants of engagement in online as well as face-to-face peer support. It is important to gain more insight into the factors that impede or facilitate engagement in peer support, because the numbers of patients that benefit from it might be increased when misconceptions of and barriers to peer support are removed.
As the theoretical basis for the present study, we chose the Theory of Planned Behavior [
The purpose of this quantitative study was (1) to explore differences in intentions, attitudes, social norms, and perceived behavioral control regarding face-to-face and online support groups, and (2) to examine which factors of Theory of Planned Behavior variables, demographic variables, health-related quality of life, and social support predict patients’ intention to engage in both types of peer support. In this respect we were interested not only in which type of peer support could be better explained, but also in whether face-to-face and online peer support would have the same or differing predictors.
Our study was focused on patients with breast cancer, fibromyalgia, or rheumatoid arthritis. We randomly selected 400 patients from each patient group from the electronic database of two regional hospitals. Inclusion criteria were being younger than 75 years and having sufficient knowledge of the Dutch language to be able to fill out the questionnaire. Attending physicians (n = 22) were asked to exclude those patients who did not meet the inclusion criteria and those who for other reasons were deemed unsuitable for participation in our study. Reasons mentioned for exclusion by the physicians were as follows: deceased, aggravation of the illness, comorbidity, mental health problems, wrong diagnosis, or family circumstances. Of the 22 physicians, 2 did not respond, which meant that 30 breast cancer patients were not approached. After exclusion of in total 187 patients we were left with a group of 1013 patients. The attending physicians invited the patients by mail and enclosed the questionnaire. If necessary, this was followed by one reminder. Of the 1013 patients approached, 28 were ineligible because they were deceased or had no valid address. The overall total response rate was 68.9% (n = 679). Of these respondents, 272/350 patients had a diagnosis of rheumatoid arthritis (response rate: 77.7%), 212/333 of fibromyalgia (response rate: 63.7%), and 195/302 of breast cancer (response rate: 64.6%).
All patients were asked for their consent to check the actual date of diagnosis in their medical records. According to the Dutch law for medical research with humans (Wet Medisch-wetenschappelijk onderzoek met Mensen), approval by an ethics committee was not necessary for this survey study.
The respondents were asked to provide information about the demographic characteristics sex, age, marital status, education, and employment. Health-related quality of life was assessed with the SF-12v2. Standardized scores were calculated for the physical and mental well-being varying from 0 (poor) to 100 (excellent), with a mean of 50 and a standard deviation of 10 in the general population of the United States [
Social support factors were measured by the Social Support List-Interaction [
Respondents were asked to indicate whether they had contact with peers at patient meetings, via the Internet, or at patient organization venues, or whether they had contact with an acquainted peer during the past year and, if so, how frequent this contact was. Respondents could answer on a 4-point scale that ranged from “never” (1) to “regularly” (4).
Theory of Planned Behavior variables were measured regarding both face-to-face and online peer contact. Items were derived from the literature (eg, [
We asked about patients’
Differences in Theory of Planned Behavior variables concerning face-to-face and online peer support were tested by means of paired-sample
Most of the respondents were female (84.3%) (
The respondents had an average score of 38.6 on the physical component and an average score of 43.9 on the mental component of the SF-12v2. This indicates that the respondents’ physical and mental well-being was worse than the average of the general population.
Demographic and health characteristics of the participants and social support factors (602 ≤ n ≤ 679)
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Female | 571 (84.3%) | |
Male | 106 (15.7%) | |
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Mean (SD) | 54 (12.9) | |
Minimum | 18 | |
Maximum | 75 | |
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Single | 128 (19.5%) | |
Married/cohabiting | 530 (80.5%) | |
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Low | 404 (59.9%) | |
Middle | 176 (26.1%) | |
High | 94 (13.9%) | |
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Employed | 212 (32.2%) | |
Unemployed | 447 (67.8%) | |
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Breast cancer | 195 (28.7%) | |
Fibromyalgia | 212 (31.2%) | |
Rheumatoid arthritis | 272 (40.1%) | |
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Mean (SD) | 7.1 (7.8) | |
Minimum | 0 | |
Maximum | 59 | |
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Physical well-being | 38.6 (11.3) | |
Mental well-being | 43.9 (6.7) | |
Social support (score 1–4) | 2.6 (0.66) |
The majority of the respondents (n = 396, 58.3%) had contact with peers during the past year (data not in table). The most regular type of peer support was contact with an acquainted peer (353/679, 52.0%) (
Use of peer support (n = 679) during the preceding year
Type of peer support | Never | Once | Several times | Regularly | ||||
n | % | n | % | n | % | n | % | |
How often did you have contact with peers at patient meetings during the past year? | 614 | 90.4 | 26 | 3.8 | 26 | 3.8 | 13 | 1.9 |
How often did you have contact with peers via the Internet during the past year? | 649 | 95.6 | 7 | 1.0 | 17 | 2.5 | 6 | 0.9 |
How often did you have contact with (an) acquaintance(s) with the same disease during the past year? | 326 | 48.0 | 35 | 5.2 | 216 | 31.8 | 102 | 15.0 |
How often did you have contact with peers at patient organization venues during the past year? | 643 | 94.7 | 15 | 2.2 | 12 | 1.8 | 9 | 1.3 |
The respondents’ intention to engage in face-to-face and online peer support in the coming year was slightly negative (
Mean scores (range 1–5) for determinants of the theory of planned behavior toward face-to-face and online peer support
Determinant | Face-to-face peer |
Online peer support |
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Mean | SD | Mean | SD | |
Intentiona | 2.4 | 1.2 | 2.0 | 0.95 |
Attitudea | 3.7 | 1.1 | 3.2 | 1.1 |
Advantagesa | 3.5 | 0.85 | 3.2 | 0.86 |
Disadvantagesa | 2.9 | 0.88 | 3.2 | 0.85 |
Subjective norma | 3.0 | 0.69 | 2.8 | 0.67 |
Perceived behavioral controla | 4.1 | 1.2 | 3.9 | 1.4 |
Barriersb | 2.8 | 0.80 | 2.8 | 0.91 |
a
b No differences in amount of barriers between face-to-face and online peer support could be determined, because the questionnaire asked about different barriers.
Although the respondents had a slightly positive attitude toward both kinds of peer support, they were significantly (
The scores on the separate items (
Mean item scores (range 1–5) on attitude toward peer support
Face-to-face peer support |
Online peer support |
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Mean | SD | Mean | SD | ||
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Offers a good opportunity to share your experiences | 3.8 | 1.1 | 3.6 | 1.1 | |
provides recognition and understanding | 3.8 | 1.1 | 3.6 | 1.0 | |
provides support | 3.7 | 1.1 | 3.4 | 1.0 | |
is informative | 3.5 | 1.1 | 3.4 | 1.0 | |
is comforting | 3.4 | 1.0 | 3.1 | 1.0 | |
you feel empowered as a patient | 3.4 | 1.1 | 3.1 | 1.1 | |
provides reliable information | 3.3 | 1.1 | 3.1 | 1.0 | |
you can cope better with your illness | 3.2 | 1.1 | 3.0 | 1.1 | |
you can accept your illness more easily | 3.2 | 1.1 | 2.9 | 1.1 | |
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you are occupied too much with your illness | 3.2 | 1.4 | 3.6 | 1.3 | |
is too informal | 2.9 | 1.1 | 3.2 | 1.0 | |
makes people more concerned about the consequences of their disease | 2.9 | 1.2 | 3.1 | 1.2 | |
is too shallow | 2.7 | 1.1 | 3.2 | 1.0 | |
takes too much time | 2.7 | 1.3 | 2.9 | 1.3 |
The most important disadvantage of both types of peer support was the continual confrontation with their illness. In general, respondents felt significantly more encouraged by people in their social environment to be in contact with peers face-to-face than via the Internet. The respondents considered themselves significantly more capable of having contact with peers face-to-face than via the Internet.
Differences in perceived barriers between face-to-face and online peer support could not be determined, because different barriers were asked about. The scores on the various barriers (
Mean item scores (range 1–5) for barriers to peer support
How difficult or how easy is it for you... | Mean | SD | |
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to find a suitable face-to-face peer support group? | 3.0 | 1.0 | |
to find the time and the opportunity to contact peers face-to-face? | 2.9 | 0.97 | |
considering your illness to visit face-to-face peer support groups? | 2.9 | 1.0 | |
to afford the cost involved with face-to-face peer contact? | 2.8 | 1.0 | |
to talk about your illness with peers face-to-face? | 2.7 | 1.0 | |
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to find a suitable online peer support group? | 3.1 | 1.1 | |
to talk about your illness on the Internet? | 3.1 | 1.1 | |
to verbally express your illness on the Internet? | 3.1 | 1.1 | |
considering your illness to type or sit behind the computer for a long period of time? | 3.1 | 1.2 | |
to find the time and the opportunity to contact peers via the Internet? | 3.0 | 1.0 | |
to afford the costs involved with peer-to-peer contact via the Internet? | 2.6 | 1.1 | |
to work with the Internet? | 2.3 | 1.3 | |
to obtain access to the Internet? | 2.2 | 1.2 |
Theory of Planned Behavior variables explained 33.3% of the intention to engage in face-to-face contact. Of the distal factors, physical and mental well-being, sex, and past behavior significantly improved the total amount of explained variance of intention to engage in face-to-face support. After inclusion of these distal factors, the influence of TBP variables remained significant (
Theory of Planned Behavior variables explained 26.3% of the intention to engage in online contact. Of the distal factors, mental health, age, and past behavior significantly improved the total amount of explained variance of intention to engage in online peer support. The influence of Theory of Planned Behavior variables on intention remained significant after inclusion of the distal factors.
The total amounts of explained variance were moderate for face-to-face contact (40.0%) and online contact (36.2%).
When repeating the analysis among only those patients who had not had (online) contact with fellow patients in the past, we found similar results: Theory of Planned Behavior variables explained 27.5% of intentions to engage in face-to-face support and 24.6% of online peer support (data not shown).
Extent to which intention to seek online peer support and face-to-face peer support can be predicted by determinants of the theory of planned behavior
Determinant | Intention to seek face-to-face peer |
Intention to seek online peer |
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Beta | SE |
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Beta | SE | ||
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Attitude | 0.22*** | 0.05 | 0.19*** | 0.05 | |||
Advantages | 0.17** | 0.05 | 0.20*** | 0.05 | |||
Disadvantages | –0.19*** | 0.04 | –0.11** | 0.04 | |||
Subjective norm | 0.22*** | 0.04 | 0.19*** | 0.04 | |||
Perceived behavioral control | 0.03 | 0.04 | 0.16** | 0.05 | |||
Barriers | –0.02 | 0.04 | 0.12* | 0.05 | |||
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Attitude | .46** | .19*** | 0.05 | .38** | .15** | 0.05 | |
Advantages | .46** | .17** | 0.05 | .40** | .18*** | 0.05 | |
Disadvantages | –.33** | –.19*** | 0.04 | –.19** | –.10* | 0.04 | |
Subjective norm | .37** | .19*** | 0.04 | .30** | .17*** | 0.04 | |
Perceived behavioral control | .19** | .00 | 0.03 | .24** | .11* | 0.04 | |
Barriers | –.18** | –.09* | 0.04 | –.07 | .11* | 0.05 | |
Social support factors | .02 | –.06 | 0.04 | –.02 | –.01 | 0.04 | |
Physical health | –.14** | –.13** | 0.04 | –.23** | –.08 | 0.04 | |
Mental health | –.10** | –.09* | 0.04 | –.23** | –.12** | 0.04 | |
Time since diagnosis | –.06 | .07 | 0.04 | –.14* | –.02 | 0.04 | |
Arthritis versus breast cancer | –.02 | –.08 | 0.05 | –.21** | –.05 | 0.05 | |
Arthritis versus fibromyalgia | .13** | .01 | 0.05 | .30** | .03 | 0.06 | |
Sex (male vs female) | .11** | .08* | 0.04 | .03 | –.04 | 0.04 | |
Age (years) | –.15** | .00 | 0.05 | –.34** | –.14** | 0.05 | |
Marital status (married/cohabiting vs single) | .07 | .02 | 0.04 | .09* | .00 | 0.04 | |
Support group past behavior | .30** | .15*** | 0.04 | .27** | .13** | 0.04 | |
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.07*** | .10*** |
*
To the best of our knowledge, this study is the first to examine which psychological determinants predict patients’ intention to engage in face-to-face and online peer support. Earlier studies focused only on determinants of patients’ intention to engage in face-to-face peer support, and frequently lacked a theoretical framework. Our study confirmed that only a relatively small percentage of the patients engaged in organized forms of peer support. The respondents were more positive about and more inclined to use face-to-face peer support than online peer support.
Our results are in contrast to our expectations, as we had expected that the Internet and Health 2.0 technology would significantly facilitate peer contact between patients. In the literature, many advantages of online support groups are mentioned, such as easy accessibility, no physical or geographic barriers, and 24-hour availability. An explanation might be found in the fact that we questioned a somewhat older patient population. Older people mostly treat the Internet with greater skepticism than do younger people. “Trust” is of specific importance to patient support groups, because the topic of “an illness” in itself requires a high level thereof, thus this might have influenced patients’ perceptions of online peer support [
Our study revealed that in accordance with the Theory of Planned Behavior, having a more positive attitude, feeling more supported by people in the social environment, and feeling more able to participate in peer support increased the intention to participate in organized forms of peer support. However, it should be notified that perceived behavioral control is not significant for face-to-face support. This is in line with Grande et al [
Intention to engage in peer support was only modestly predicted by the Theory of Planned Behavior variables (face-to-face: 33.3%; online 26.3%). A meta-analysis has shown that Theory of Planned Behavior variables, on average, account for 35%–50% of the variance in intention [
Patients who indicated having poorer mental well-being had a greater intention to participate in face-to-face and online peer support, and those who had worse physical well-being were more inclined to participate in face-to-face peer support. These results are not surprising, considering that health-related support groups have a health-promotional function. Therefore, these groups are less appealing to patients who perceive themselves already having good mental and physical well-being despite their illness [
Of the demographic factors, only age significantly improved the total amount of explained variance of intention to engage in online peer support. Younger patients were more inclined to engage in online support groups. These results were in line with our expectations, as it is still mainly younger people who use the Internet [
This study yielded some pointers for an intervention, so that patients can make well-informed decisions about whether they want to engage in peer support and so that they can find a peer support group the moment they want to enroll. First, attention should be paid to awareness of peer support. Our study revealed that a considerable proportion of patients expected difficulties with finding relevant peer groups, especially on the Internet. Since studies showed that not all people have the necessary Internet skills to be capable of finding the information and applications they are looking for [
The findings of this study are limited by its cross-sectional nature. Therefore, we could attribute no causal relationships.
A second limitation of this study is the high number of missing variables in the section of the questionnaire on TBP items concerning online peer support. A considerable number of people without computer skills did not respond to these items. In addition, findings for
Although opportunities for having contact with fellow patients have been significantly increased by Health 2.0 Internet technology, only a minority of patients seem to be interested in organized forms of peer contact (either online or face-to-face). Patients seem somewhat more positive about face-to-face contact than about online contact.
Our study revealed that in accordance with the Theory of Planned Behavior, having a more positive attitude and feeling more supported by people in the social environment increased the intention to participate in both kinds of peer support. In addition, perceived behavioral control influenced the intention to participate in online peer support. Nevertheless, we must conclude that the Theory of Planned Behavior variables only modestly predicted the intention to engage in face-to-face and online peer support.
This study was supported by grants from the Netherlands Organization for Health Research and Development (ZonMw), the Dutch Arthritis Association, and Comprehensive Cancer Center Netherlands (IKNL). We would like to thank the rheumatologists, medical oncologists, and radiotherapists of Medisch Spectrum Twente and the rheumatologists of the Ziekenhuisgroep Twente for their help in recruiting patients.
None declared