Development of guidelines for caregivers of people with bipolar disorder : a Delphi expert consensus study

Objectives: Close family and friends are often a primary source of support for a person with bipolar disorder. However, there is a lack of
information for caregivers about ways to provide helpful support and take care of themselves. Rates of caregiver burden are high and increase the risk of caregiver depression and health problems. This study aimed to develop guidelines to assist caregivers of adults with bipolar disorder to be informed about bipolar disorder and to support the person without neglecting their own wellbeing.
Methods: The Delphi method was used to assess consensus between international expert panels of 45 caregivers, 47 consumers, and 51 clinicians about what information to include in the caregiver guidelines. Initial online survey items were based on the existing literature. Subsequent surveys included new or reworded items suggested by panel members and items that needed re-rating. Items endorsed by at least 80% of all three panels formed the content of the guidelines.
Results: Nearly 86% of the 626 survey items were endorsed. The items covered information on the illness, treatment, and suggestions on ways caregivers can provide support and take care of themselves in the different phases of illness and wellness, and information on dealing with specific real-life challenges. Although consensus rates were high, meaningful areas of difference between panels were found (e.g., collaboration issues).
Conclusions: The guidelines provide comprehensive introductory information, suggestions, and resources for caregivers. Access to relevant information may help caregivers to cope constructively with the person’s bipolar disorder and their caregiving situation. The content of the guidelines could be used to help formulate a stepped-care approach to supporting caregivers, ranging from basic information and pamphlets to brief training courses and specialized family or caregiver interventions based on need and accessibility.