The development and evaluation of guidelines and an information website for adult caregivers of adults with bipolar disorder

Abstract

Background and aim: Bipolar disorder is a challenging and usually chronic illness associated with occupational and social consequences that affect the lives of both the person and those who care for them. Family members and friends with a primary role in supporting an adult with bipolar disorder (caregivers) are at risk of caregiver burden, depression and health problems. However, there is little evidence-based information to guide caregivers in ways to provide helpful support and maintain their own wellbeing. Thus, the aim of this project was to develop an easily accessible resource with relevant and useful information and suggestions for caregivers.

Methods: The project was divided into two phases. In the first phase a Delphi consensus study was conducted with expert clinician, caregiver and consumer panel members to establish what information and suggestions to include in guidelines for adult caregivers of adults with bipolar disorder (N=143). In the second phase of the project, a web-based version of the guidelines www.bipolarcaregivers.org was developed to make this information easily accessible over the Internet. A formative evaluation of the website was conducted to establish the relevance and usefulness of the information to caregivers and how it could be improved. This involved an initial online survey for visitors to the website (N=536) and a more detailed follow-up email feedback survey, sent to interested caregivers of adults with bipolar disorder a month later (N=121).

Results: There was mostly high consensus about what to include in the guidelines between the different Delphi panels. Out of a total of 626 survey items rated by the Delphi panels over three survey rounds, 537 (86%) were included in the guidelines. In the evaluation study, the majority of caregiver visitors who completed the initial feedback survey (97%) reported thinking that the information on www.bipolarcaregivers.org was “very useful” or “useful”. Similarly, between 86.4%-97.4% of caregivers who responded to the follow-up survey rated the information they read as “very useful" or “useful”. Nearly 93% found the information relevant and all participants said it gave them the impression that others were going through similar experiences. Over two thirds reported using the sections on providing support and working with the person to manage the illness and gave concrete examples of how they implemented the guidelines. Nevertheless, despite the overall positive results, qualitative feedback suggested practical ways the website could be further refined.

Discussion: This project resulted in a publicly accessible information resource www.bipolarcaregivers.org that was reported to be relevant and useful by most of the users in the evaluation study. The website includes brief information summaries and a PDF of the guidelines that can easily be printed. The guidelines have been translated into booklets in Portugal and Brazil. According to Google Analytics, traffic to the website continues to increase. Www.bipolarcaregivers.org may form an initial step in providing basic information to caregivers caring for an adult with bipolar disorder. Those who care for people with more severe and complex illness presentations might benefit from additional support and training to cope with their caregiving role. Similarly, more detailed or tailored information and support may be suitable for caregivers who are already very experienced or well informed.

A strength of this project is its consideration of the views of stakeholders and careful comparison and integration with the research literature. Future studies could combine stakeholder involvement with more rigorous evaluation of www.bipolarcaregivers.org and its long-term effect on caregiver and consumer outcomes. If funds become available, the website could be made more interactive to enhance learning of information and skills, and offer more tangible and tailored support.

Background and aim: Bipolar disorder is a challenging and usually chronic illness associated with occupational and social consequences that affect the lives of both the person and those who care for them. Family members and friends with a primary role in supporting an adult with bipolar disorder (caregivers) are at risk of caregiver burden, depression and health problems. However, there is little evidence-based information to guide caregivers in ways to provide helpful support and maintain their own wellbeing. Thus, the aim of this project was to develop an easily accessible resource with relevant and useful information and suggestions for caregivers.

Methods: The project was divided into two phases. In the first phase a Delphi consensus study was conducted with expert clinician, caregiver and consumer panel members to establish what information and suggestions to include in guidelines for adult caregivers of adults with bipolar disorder (N=143). In the second phase of the project, a web-based version of the guidelines www.bipolarcaregivers.org was developed to make this information easily accessible over the Internet. A formative evaluation of the website was conducted to establish the relevance and usefulness of the information to caregivers and how it could be improved. This involved an initial online survey for visitors to the website (N=536) and a more detailed follow-up email feedback survey, sent to interested caregivers of adults with bipolar disorder a month later (N=121).

Results: There was mostly high consensus about what to include in the guidelines between the different Delphi panels. Out of a total of 626 survey items rated by the Delphi panels over three survey rounds, 537 (86%) were included in the guidelines. In the evaluation study, the majority of caregiver visitors who completed the initial feedback survey (97%) reported thinking that the information on www.bipolarcaregivers.org was “very useful” or “useful”. Similarly, between 86.4%-97.4% of caregivers who responded to the follow-up survey rated the information they read as “very useful" or “useful”. Nearly 93% found the information relevant and all participants said it gave them the impression that others were going through similar experiences. Over two thirds reported using the sections on providing support and working with the person to manage the illness and gave concrete examples of how they implemented the guidelines. Nevertheless, despite the overall positive results, qualitative feedback suggested practical ways the website could be further refined.

Discussion: This project resulted in a publicly accessible information resource www.bipolarcaregivers.org that was reported to be relevant and useful by most of the users in the evaluation study. The website includes brief information summaries and a PDF of the guidelines that can easily be printed. The guidelines have been translated into booklets in Portugal and Brazil. According to Google Analytics, traffic to the website continues to increase. Www.bipolarcaregivers.org may form an initial step in providing basic information to caregivers caring for an adult with bipolar disorder. Those who care for people with more severe and complex illness presentations might benefit from additional support and training to cope with their caregiving role. Similarly, more detailed or tailored information and support may be suitable for caregivers who are already very experienced or well informed.

A strength of this project is its consideration of the views of stakeholders and careful comparison and integration with the research literature. Future studies could combine stakeholder involvement with more rigorous evaluation of www.bipolarcaregivers.org and its long-term effect on caregiver and consumer outcomes. If funds become available, the website could be made more interactive to enhance learning of information and skills, and offer more tangible and tailored support.