Mental health professionals and information sharing: carer perspectives

Background: The important role played by carers of those with mental health problems is frequently undervalued among healthcare professionals. Aims: To identify the difficulties encountered by carers in relation to obtaining information from mental health teams. Methods: Participants in the study included carers or family members of persons with mental illness who were affiliated with a support group in Ireland. Information was gathered using an 18-item self-report questionnaire. This is an amended version of the Carer Well-Being and Support Questionnaire for carers of people with a mental health problem or dementia.
Results: One-hundred and fifty-nine carers complete the questionnaire. On average respondents stated that they have been in the role of a carer for someone with a mental health problem for 14.4 years, spending a median of 20-h caring each week. Despite most carers maintaining that they are generally satisfied with the support offered to them from medical and/or care staff, the majority (56.3 %) of respondents stated that they have specifically encountered difficulties accessing information from the treating mental health team. The main reasons given to them by the mental health team for withholding information include: lack of patient consent (46.2 %) and unavailability of a team member (46.2 %). From a carer perspective, respondents stated that the main reason they feel there is difficulty in accessing information is a lack of concern for their role as a carer in the patient's management (60.5 %). More than 75 % of all respondents are afraid of negative consequences for them or for the person in their care as a result of information being withheld by the treating team. Conclusions: Carer involvement is essential for the complete and effective management of individuals with mental illness. Confidentiality should not be used as a reason for completely excluding carers.