Most mental illness research focusses on the disorder itself and the experience of the people living with it. But what about the experience of the friends, families and supporters of those people? How are they affected, and what support do they need?
In 2013, researchers at the University of Wollongong searched the academic literature to see what work had already been done to understand the experience and needs of carers of people with personality disorders like borderline personality disorder (BPD). What they found surprised them.
The research paper
By Rachel Bailey and Brin Grenyer. Published in September 2013 by the Harvard Review of Psychiatry.
What the paper says
This paper is about the experience of carers who support people with personality disorders. How does being a carer affect their lives? And how much attention have they received from mental health researchers?
When academic researchers use the term 'carer', they're referring to anyone close to the person living with the illness who 'provides regular ongoing care, support and assistance'. So family members, friends and other supporters are included.
What the researchers did
The authors searched for existing research on the experience of carers of people with all kinds of personality disorders, so see what patterns they could find and identify any areas of their experience that hadn't been explored.
By looking at research databases, scanning the references in relevant academic papers and asking experts in the field, the researchers found six papers that were:
- written in English
- conducted in the past 15 years
- based on direct observation of carers
- focussed the experience of carers of people living with personality disorders.
Current research is limited
Five of the six research papers the authors found focussed on BPD, and the sixth was a small study of only 37 people. So the results showed that recent empirical research into the experience of carers of people with other forms of personality disorder is limited or non-existent. This narrowed the focus of the authors' review to carers of people with BPD.
The experience of carers: burden, grief and powerlessness
The authors identified three measures of carer experience: burden, grief and empowerment.
In research, 'burden' is a technical term that refers to the extra pressures, stress and emotions that a person has to deal with as a result of an illness.
For carers, burden can include financial pressure, interruptions to your life and plans, and disruption in your home and family. It can also refer to more personal, emotional experiences like guilt, anger, embarrassment and more.
In five of the six studies, carers' burden was measured using a standard survey called the Burden Assessment Scale. When analysed, the data showed that the burden reported by carers of people with BPD is not only higher than the general population, but is also higher than the burden reported by carers of people with other serious mental illnesses.
Two of the studies also measured grief using a survey called the Grief Scale. They found something very similar: carers of people living with BPD describe living with higher levels of grief than carers of people with other serious mental illnesses.
A third measure, called the Family Empowerment Scale, is a questionnaire used to measure a person's sense of confidence and control in their family life, their engagement with support services and their community. In two of the studies, carers of people living with BPD reported very low levels of empowerment.
Carers of people with BPD also reported symptoms consistent with clinical depression, and also reported high levels of anxiety. This indicates that carers often deal with their own mental health problems along with those of their loved one.
‘The ﬁndings suggest that carers of persons with BPD experience elevated objective and subjective burden, grief, and impaired empowerment, and that they may also report suffering depression and anxiety.’
Does this apply to all BPD carers?
The authors make a few points about the limits of these findings:
- The studies focus far more on carers of women with BPD than men. Is caring for men with BPD a very different experience? There's no research to say.
- The studies focus on parent carers, and especially mothers. Is it different for fathers, partners, siblings, children and friends who care?
- The studies are almost entirely focussed on BPD, but there are nine other personality disorders, and it's not uncommon for someone with one personality disorder to also have another. What would we learn if we did the same research with carers of people with personality disorders generally? The researchers suggest that we might find the same results, but until the research is done we won't know for sure.
What does this research achieve?
The purpose of the review was to see what the collected research could tell us about the experience of carers of people living with personality disorders. Two important points emerged:
- There's little or no research on the experience of carers of people with personality disorders outside of BPD
- Carers of people living with BPD experience levels of burden and grief higher than those reported by carers of people with other serious mental illnesses
As the authors say in the final sentence of the report:
‘Developing effective means of support would obviously improve carer well-being and would also, most likely, beneﬁt the patients themselves.’
This SANE resource was created with support from The Vizard Foundation.