Perceived freedom of choice and the experiences of carers of older adults with mental health problems

Family and friends often play a very important role in supporting older people with long-term, severe mental health problems. It is estimated that 25% of the 6 million carers in the UK are supporting someone with a mental health problem (Carers Trust, 2007). Stress has been cited as having a major impact on the wellbeing of carers, but more research is emerging about other influences.

This study was carried out at the Department of Psychiatry of the Elderly, Altrecht Mental Health Care in Zeist, the Netherlands. It was funded by the Netherlands Organisation for Health Research and Development.

The researchers aimed to find out more about carers’ differing experiences and perceptions of their lives and roles. They also wanted to identify processes underlying long-term caregiving.

The study authors argue that differences in carers’ feelings of burden could be influenced by their experience and perception of their caregiving role

As a starting point for their inquiry, the researchers sought to go beyond the stress-process models which are often used to understand the carer experience and why some people feel more burdened than others. They argue that:

The differences cannot be understood by factors currently known to exacerbate the burden of caregiving. This qualitative study seeks to explore and understand underlying factors that may shed new light on the caregivers’ appraisal of the situation, which may cause these differences in impact.

Methods

This is a qualitative study where community mental health nurses in two large mental health agencies in the Netherlands invited caregivers to take part. The participants gave informed consent and the research was passed by an ethics committee.

Twenty-four people were approached to take part and nineteen agreed to be interviewed. The study inclusion criteria were as follows:

Primary caregiver from the nurse’s point of view
Had been a caregiver for at least 6 months
Were caring for a person aged at least 60 who had a diagnosis of a severe mental health problem and ‘problematic behaviour’ from the carer’s point of view

The participants had a mean age of 66 and eleven had disabling conditions, with one having treatment for depression. The socio-economic backgrounds ranged from lower to upper middle and all spouses and one child shared a home with the care receiver.

Participants were interviewed face to face at a location suggested by them and in the care receiver’s absence. A research team of three members analysed the data. For triangulation one of the researchers provided an external critical check.

Results

Caregivers in this study were defined by whether they felt caregiving was primarily a process of gain or a process of loss

The researchers identified what they call ‘perceived freedom of choice’ as an underlying psychological factor that seems to impact on how the carer responds to and copes with their role. They were able to define two main types of long-term caregiver:

Those who see caregiving as a ‘voluntary act of compassion’ and perceive caring as a process of gain
Those who see caregiving as an ‘unavoidable obligation’ and perceive caring as a process of loss

The study also looked at four influential factors:

Acceptance
Home environment
Feelings of competence
Social relationships

These factors further divided people in the type 2 category:

Those who accept the loss and caregiving as part of their life
Those who feel ‘captured’ in mutual dependency where they ‘cannot imagine life without the care receiver, while on the other hand they suffer because their partner or parent never shows any sign of gratitude’

Overall the research suggests that people who fall into the type 2 category are more at risk of becoming overloaded, with the ‘impact of freedom of choice being most visible in the quality of the relationship and the caregiver’s psychosocial wellbeing’.

Conclusions

Reflecting on the study results in relation to existing research, the authors conclude that:

In this study the concept of freedom of choice is stated as the key concept in explaining the impact of long-term caregiving…Perceived freedom of choice shows that differences in impact cannot be explained solely on the basis of stressors, buffers and contextual factors found in the research to date.

Further the authors make practical recommendations for the development of carer support programmes:

An intervention should ideally use an empowering approach to encourage caregivers to redefine their personal life and focus on their caregiving strengths, and on “living”, rather than on the reduction of caregiving tasks and their subjective burden.

‘Perceived freedom of choice’ about caregiving is a key element to study in future research

This research provides insight into how carers of older people with severe mental health problems psychologically experience and adapt to their role, with the key issue being their ‘perceived freedom of choice’ about giving care and support. The findings can inform the way mental health carer support services are developed in the UK and open the way to further research on the psychological impact of caring beyond the established stress models.