Overall, the results suggest that most respondents found the information relevant, useful and considered it would be helpful to other caregivers. As Jorm  has noted, ‘mental health literacy is not simply a matter of having knowledge (as might be conveyed in an abnormal psychology course). Rather it is knowledge that is linked to the possibility of action to benefit one’s own mental health or that of others’. Given the relatively short follow-up period and erratic course of bipolar disorder, a surprising number of caregivers reported using the various sections of the website and gave concrete examples of this use.
It was not surprising that most respondents reported that the information was relevant to their situation as they were dealing with relatively recent and dynamic symptoms typical of bipolar disorder. According to the Transtheoretical Model of change conceptualized by Prochaska and DiClemente , when people are in the precontemplation stage they are not aware of the importance of changing a behavior, but awareness grows as they proceed to the contemplation stage and weigh up the costs and benefits of changing. In the preparation stage the person makes plans to change and this is succeeded by the action and maintenance stages. The targeted content based on the Delphi study may have increased active contemplation of the information on the website.
Other studies have highlighted the value of including consumer, caregiver and clinician stakeholders in the development and evaluation of health information [51, 52]. The method used to develop the website content in our study was similar to the Delphi consensus method involving expert stakeholders used to develop Mental Health First Aid (MHFA) guidelines with information for the public on recognizing and responding to mental health problems and crises up to the point that professional help is accessed . Hart and colleagues  also used online surveys to evaluate the usefulness of the MHFA guidelines. Around 80.1% of the web users involved in the follow-up evaluation of the online MHFA guidelines rated the guidelines they downloaded as either very useful or useful, and 83.8% said they were very likely or likely to use them in the future . Our study supports this and other research [44, 45, 53, 54] that highlight the value of engaging users in the development and evaluation of health information.
Web user feedback about http://www.bipolarcaregivers.org emphasized the usefulness of information about bipolar disorder, treatment and management and ways the caregiver can communicate with the person that have been highlighted in both psychosocial interventions and studies of expressed emotion . In addition, a number of web users commented on the value of information that addressed ways to manage particular real life challenges when providing support, such as what caregivers can do if the person refuses to manage or treat their bipolar disorder.
Nearly all respondents reported the information conveyed that there were things caregivers can do to help, although the person is responsible for their illness. Caregivers may need to be more actively involved in caregiving at times, but trying to control the person’s illness may impact negatively on their relationship with the person, caregiver burden and the course of bipolar disorder [14, 21, 56]. The idea is to address the person’s basic psychological needs for autonomy, competence and relatedness within the caregiving circumstances as much as possible (for example, making advance plans with the person about what to do in a bipolar crisis) . Knowing how to help in the different circumstances may assist caregivers to feel a greater sense of control. However, our results suggest that their sense of control over their situation may also be influenced by knowing how to set realistic limits with the person and their caregiving role (for example, ‘It helped me to know that I do not have to take her verbal abuse and how to deal with’). One of the ways to reduce caregiver resentment and anger is not simply for caregivers to be informed and accept that a person’s problematic behavior is due to their illness, but to have their own needs acknowledged and be able to set some limits on what behavior they will tolerate .
Possibly, some caregivers saw the information on caregiver self-care as giving them permission to attend to their own basic psychological and health related needs as well as the person’s. Although health outcomes were not measured, more positive attitudes towards self-care and increases in positive health behavior may enhance caregiver health and wellbeing . In addition, recognizing the importance of their own needs as well as the person’s may have a positive influence on the caregiver’s relationship with the person with bipolar disorder (for example, ‘The impact this website has had on how to take care of myself has really boosted my optimism about continuing’).
Although a considerable percentage of respondents said the information on the website helped them feel better informed, it may have had other functions. All follow-up participants reported that the information reassured them about the universality of their emotions and experience and some commented that it helped them to feel less alone and isolated. Information that highlights the universality of common emotions may help caregivers to make sense of their reactions (for example,‘realized that it is ok to have feelings of frustration, and that it doesn’t mean I don’t love the person’). Isolation may contribute to caregiver depression . A high percentage of respondents reported that it gave them the impression that there is support out there. Although perceptions of support were not formally measured, feedback from respondents suggests that some web users found it emotionally supportive (for example, ‘non-judgmental’, ‘empathic’, ‘reassuring’ and ‘supportive’ and ‘they understand and care’. The social support literature suggests that perceptions of support can help to regulate emotions and the negative effects of stressful situations [61–63].
The perception of empathy may also be enhanced by “information seeking effectiveness”, the extent to which online information is perceived as ‘readily usable’, ‘credible’, ‘relevant’, ‘reliable’ and accessible in a ‘timely manner’ . A recent study of a forum where people with cancer and caregivers posted and responded to healthcare queries found that ‘information seeking effectiveness’ was more predictive of perceptions of empathy by participants than the social support aspects (for example, being able to talk about problems) . Perceptions of homophily (perceptions of others as similar or as sharing similar life experiences) moderated the connection between information-seeking effectiveness and perceived empathy. Most web users in our study also reported finding the website content easy to access, practical, relevant, credible, reliable and they appreciated the tone and appearance of the website. Communication that is perceived as empathic may help caregivers to feel supported and encourage them to actively contemplate the information and weigh up the benefits of using it [65–67].
While overall the evaluation of http://www.bipolarcaregivers.org was very positive, participants pointed out what they did not like about the website and how it could be improved, suggesting that they were motivated to give accurate rather than socially desirable feedback. For example, some caregivers who were already knowledgeable and experienced found the content less relevant to their situation. Possibly, the website may have offered slightly different benefits to different caregivers. Although the website may have provided new information to more recent caregivers, others reported the information was ‘reassuring’ and ‘confirmed’, ‘validated’ and ‘reinforced’ what they already knew. Nevertheless, comments from a few experienced or knowledge web users indicate that they may be looking for more specific information, such as what medication does not have a certain side effect, or more detailed information, such as updates about scientific research on specific aspects of bipolar disorder.
Qualitative feedback from some of the caregivers who were dealing with very severe and chronic forms of bipolar disorder, showed that the website did not fully satisfy their need for information or emotional support (for example, ‘My husband is an ultra-rapid cycler and does not respond well to many of the drugs currently available. It is difficult for us both and I really need a shoulder to cry on’). They wanted specific local information on social resources and health services. Challenges faced by caregivers of people with multiple or frequent episodes, comorbidity and poor interepisode recovery, as defined in staging models [68, 69], may be very different from those caring for a person with much less severe illness . In addition, families dealing with conflict, breakdown and crises in relationships, may need more active help than can be provided on a passive information website . Ideally, health services could have a role in providing individually tailored information and support to cater for the variety of caregiver needs over the illness trajectory, but this is not usually possible in practice . Perhaps, http://www.bipolarcaregivers.org could form part of a stepped-care approach to supporting caregivers tailored to their needs, preferences and the accessibility of more specialized and individualized psychosocial interventions for families and caregivers .
A more interactive version of the website with options for caregivers to tailor information and support to their individual needs was recommended by some respondents. Similarly, in a focus group study of user feedback about websites for physical illness, patients and caregivers appreciated being able to select what information was relevant to them, as on our website, but valued having some online interactivity such as personalized assessments with advice from experts or peer support . Such interactivity comes at a financial cost, but could be a way to help individualize information and provide additional support on http://www.bipolarcaregivers.org in the future.
Currently, http://www.bipolarcaregivers.org may reduce some of the barriers the public have to accessing mental health information and enhance mental health literacy [25, 49, 70]. Perceived stigma has been reported to sometimes obstruct information seeking about mental health problems [72, 73]. In our study, participants commented on the ‘openness’ of the information in answering questions they were ‘too afraid to ask’. Our research confirms the convenience for caregivers of accessing online health information when it suits them in the privacy of their home for busy caregivers in the privacy of their own home [74, 75]. Another advantage is that participants can return for new or ‘booster’ information at any time along the illness trajectory . At the time of writing, the site is receiving around 5,000 visits a month according to Google Analytics, and nearly a fifth of these are from returning visitors. On a public health level, this resource may fill an important gap in providing basic information and reassurance for caregivers that influences positive actions.
The results need to be interpreted in the context of study limitations. In the future, more formal assessment of caregiver factors, such as burden, knowledge, mastery and perceived support, as well as prospective health outcomes, would provide a more rigorous evaluation. Comparing http://www.bipolarcaregivers.org to a leaflet, or alternatively to a more interactive website over a longer follow-up time could confirm the internal validity of results. In addition, in the current study it was not logistically possible to conduct the evaluation by an independent team rather than the team who developed the website, but in future this would strengthen the findings.
Another limitation of the current evaluation study was that the number of web users who responded to our surveys was relatively small, given that over the recruitment period 20,379 unique visitors accessed the website (according to Google Analytics). Low response rates are common with online surveys . While we cannot be certain that our sample represents this larger visitor population, it did include a variety of caregivers of people with bipolar disorder, consumers and those who work in the area. Selection bias may also have been introduced in the follow-up sample, as these comprised only 33% of the eligible caregiver respondents from the initial survey, and might have reflected the views of those who were more favorably disposed to the website (therefore more likely to complete the follow-up survey). Furthermore, there were significant differences in the age and location of web users who responded to the initial and follow-up surveys. While most respondents in both the initial and follow-up surveys rated the information positively, the follow-up study also found that caregivers contributed negative appraisals and suggestions for improvement, suggesting that they did not only view the website positively. These caregivers were dealing with a range of challenges highlighted in the literature regarding caregivers of people with bipolar disorder, and the richness of their responses suggests a genuine need for information and support to deal with these challenges rather than only a positive bias. Thus, while caution should be exercised regarding the generalizability of the results, this evaluation study offers preliminary evidence that the website content was overall both appraised positively and actually used by a number of adult caregivers of adults with bipolar disorder dealing with common caregiving challenges. It also indicated concrete ways to improve this resource.
More specific or detailed information (for example, on bipolar II disorder and the biological causes of bipolar disorder, ways to reduce stress) will be added to http://www.bipolarcaregivers.org together with templates, examples and links to resources in accordance with the feedback. Although desirable , more interactive ways to tailor information to users’ needs and provide support will depend on future funding. Such funding might also facilitate the development of similar resources for other caregiver groups (for example, caregivers of people with different disorders, younger caregivers, those from different cultures or who have minimal access to functional health services).