Not sick enough: experiences of carers of people with mental illness negotiating care for their relatives with mental health services

Aim: The literature reporting experiences of relatives of people with mental illness regarding their interactions with mental health services identifies many commonalities. However, the actual experience of carers engaging the services and understanding healthcare systems remains a gap in the literature. The aim of this study was to explore the experiences of carers (of people with a severe mental illness) in a major area mental health service in Victoria Australia as they fulfil their caring role while negotiating support for their relative. A carer is defined as a family member or significant other who is the primary individual who provides informal care for a person with severe mental illness and may or may not be in receipt of income supplement for such a role. Specifically this study has a focus on the experience of the carer when negotiating care needs or admission with a mental health service.

Method: A qualitative descriptive approach was used with five focus groups as a means of data collection. Ethical approval for the study was obtained from both the hospital and universities ethics committees.

Results: Key themes identified using thematic analysis are presented in the words of the carers and include: “Juggling” between services; We became assertive and If only they would listen. Often carers were advocating for their relative and needing to negotiate between services (police and crisis assessment teams) to gain any form of assessment or intervention. Carers often spent a great deal of time on the phone to services only to be told that their relative was “not sick enough” to access care or that no response would occur without another service also being involved.

Discussion: Our research highlights the importance of working collaboratively with informal carers and acknowledging their valuable contribution to the care of their relatives with a severe mental illness. It is very important that adequate support is given to carers especially during the period when their relatives are experiencing a crisis. An understanding of their experiences ensures a more family focused approach towards care. The study findings should enable the healthcare team to focus attention on the issues which are most pertinent to carers. Nurses are advocates not only for the patient but also for their families.

Relevance statement: Carers supporting a person who experiences mental illness can often find themselves in difficult and emotionally challenging situations such as at times of crisis and admission to mental health services. The fourth and latest Australian National Mental Health Plan (2009–2014) acknowledged these concerns and highlighted the need to recognize the role of carers in promoting well-being and recovery of the relative with a mental illness. The plan acknowledges that families are often best placed to recognize signs of relapse in their family members with a mental illness and discharge planning should include the involvement of family members (Commonwealth of Australia, 2009). To achieve best care outcomes for consumers, mental health nurses need to recognize the role of the carer and collaborate in care planning.