Nicole J Highet and Marie Thompson, beyondblue: the national depression initiative.
In partnership with the Project Management Team: John McGrath, The Network for Carers of People with a Mental Illness.
Karen Elford, Executive Officer, The Eating Disorders Foundation of Victoria
Kathryn I’Anson, Director, Anxiety Recovery Centre Victoria
Kim Johnson, Carer Representative Julie Nankervis, Policy Officer, Carers Victoria
Project completion year
Conducted by beyondblue: the national depression initiative and The Network for Carers of People with a Mental Illness, this research explored the experiences of carers of people with an anxiety disorder.
This qualitative research revealed how living with a person with an anxiety disorder, such as obsessive compulsive disorder, generalised anxiety disorder, social anxiety disorder and panic disorder can impact on many areas of life for the carer and families and affect their psychological, emotional and physical wellbeing.
The research had four aims:
- to explore the experience of living with and caring for a person with obsessive compulsive disorder (OCD), generalised anxiety disorder, social anxiety disorder and panic disorder
- to understand the impact of this experience on primary carers and the family
- to identify factors contributing to the burden of care
- to highlight opportunities to improve the lives of people living with a family member with an anxiety disorder.
Six focus groups (three groups each consisting of two sessions) and seven in-depth interviews were conducted with the primary carers of people with an anxiety disorder in both rural and metropolitan Victoria in 2003.
Caring for a person with an anxiety disorder had a profound impact upon the carer and families across the various stages of illness, as demonstrated in the emergence of the following themes:
Barriers to identifying an anxiety disorder
Carers describe behavioural, physical or psychological signs as early indicators of the presence of an anxiety disorder in a family member, yet mostly these signs are only recognised in hindsight. A number of barriers prevent carers from noticing the development of the disorder at the time. These include family members hiding their symptoms due to feelings of shame and fear, carers’ lack of awareness of anxiety disorder symptoms or incorrectly attributing the symptoms to a phase of adolescence, naughtiness, eccentricity or personality traits.
Recognition of an anxiety disorder
Carers report a complex psychological response to the realisation that a family member has an anxiety disorder. Guilt, fear, sadness, grief, loss, shock and anger are common.
Family involvement in symptoms
In an attempt to alleviate the distress experienced by the person with an anxiety disorder, family members frequently engage in and accommodate symptoms of the disorder. As a result, carers report that the symptoms of OCD become intrinsically intertwined into all aspects of living. Accommodating and living with the symptoms of OCD impacts upon the quality of life of all family members involved. The symptoms appear to control, dominate and infiltrate into most, if not all, areas of life. Carers of people with panic or generalised anxiety disorder feel constrained by the dependency of their family member. Their family member’s need for the carer to be in close proximity, to provide constant reassurance and undertake daily activities for them, leaves many carers feeling trapped by their role.
Impact on relationships
Caring for a person with an anxiety disorder can be particularly demanding and places considerable strain on spousal, family and social relationships. Over time, the impact of living with the symptoms can become a burden and hinders the progression of secure and balanced relationships. Intimacy and dynamics within the relationship are also altered.
Living with a family member with an anxiety disorder often impacts financially on the carer. Anxiety disorders sometimes debilitate the person to the extent that they are unable to work. Certain symptoms have a direct influence on family finances. For example, in the case of OCD, throwing away food or clothes due to fears of contamination is common. Over time, this disposal of “contaminated” items becomes costly and impacts upon the financial status of the family.
Impact on psychological, emotional and physical wellbeing of carers
Carers report on becoming so intertwined with the disorder that their own needs and a life outside their caring role becomes difficult for them to consider and many describe feeling trapped and defined by their role. Carers are overwhelmed by the unrelenting nature of the role and experience chronic stress, symptoms of depression and related physical complaints.
Barriers to accessing treatment
Resistance from the person for whom they are caring, lack of information as to where to go for help, poor diagnostic skills among some health professionals and services, and stigma, are mentioned as potential barriers to accessing treatment for a family member with an anxiety disorder. In the absence of professional intervention, carers often assume responsibility for their family member, leaving many feeling out of their depth, overwhelmed and unsupported. Once professional support services have been accessed, a number of factors continue to hinder accessing effective intervention.
The need for support
The overwhelming nature of the role of caring is often compounded by the lack of professional help available for someone with an anxiety disorder. As a result, carers were left feeling in need of support and understanding. In a number of cases this support was absent from usual support networks, such as friends or family. Consequently, the majority of carers sought support through more formal channels, such as via carer support groups.
Implications for policy and practice
The research highlights the need to:
- Instigate campaigns and education forums in order to increase community awareness and understanding about the significant impact depression has on those who live with it, and increase the level of empathy and support provided to carers.
- Encourage health and community service bodies to ensure that support services and networks for carers in metropolitan and rural areas are adequately funded, available and accessible, and appropriate policies are developed.
- Educate and encourage GPs, allied health professionals and specialists to share information with carers about the disorder, its management, coping strategies, information about appropriate services, and eligibility for assistance including mutual support groups and financial entitlements.
- Encourage primary and secondary health professionals to understand better and respond to carers’ needs and concerns, and to promote a more inclusive approach to treatment and management.
- Target primary and secondary health care providers (GPs, specialists, nurses) and agencies in order to increase community awareness about signs and symptoms of depression, to improve detection and early intervention, reduce isolation and stigma, and increase the level of support for the person with depression, their family and carer.