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About Opal - Background Information

Background Information

This page provides a more detailed description of the OPAL study and its background, including references to relevant research. For a shorter description See ‘Summary’ and ‘Aims’.

Treatment under the Mental Health Act (MHA) is a stressful experience and not only for patients. Their family members, friends, next of kin and partners who support them as carers can be affected and distressed too (Kaselionyte J et al., 2019; Jankovic J et al.,2011; Førde R et al., 2016; Giacco D et al., 2017; Lavoie JAA., 2018; Norvoll R et al., 2018; Wyder M et al., 2018; Stuart R et al., 2019).

The distress experienced by carers is complex. It includes feelings of exclusion from care, conflicting feelings of relief and guilt, and often frustration with services over delays in getting help. Carers may have gone through long periods over which their loved ones can become more unwell and risky. They may have witnessed them being detained in hospital against their will by services or the police (Førde R et al. 2016; Lavoie JAA., 2018; Norvoll R et al., 2018; Wyder M et al., 2018).

Often, carers have concerns about what will happen after their loved one’s discharge and how their relationships with their loved ones might change (Kaselionyte J et al., 2019; Førde R et al. 2016; Lavoie JAA., 2018; Norvoll R et al., 2018; Wyder M et al., 2018).

Carers left without support can develop mental and physical health problems. These problems can range from experiencing stress and social isolation to developing diagnosable psychological and physical disorders (Martens L, Addington J., 2001; Awad A,Voruganti L., 2008; Yesufu-Udechuku A et al., 2015)

On the other hand, if carers are valued and supported by services, the caregiving experience can have positive and rewarding aspects and be highly beneficial to patients (Kulhara P et al., 2012)

Increased well-being and coping amongst carers is associated with improved outcomes for the supported patients (Pharoah et al., 2010)

There are different mechanisms by which supporting carers can help to achieve better patient outcomes. This may include a reduction of carers' expressed emotions such as over-involvement or criticism towards patients, as well as carers' support towards having continued treatment and engagement with services (Kulhara P et al., 2012; Pharoah et al., 2010). During involuntary treatment, more positive judgements of treatment from carers are connected with greater symptom improvement of patients (Giacco D et al., 2012).

Previous research on the experiences of carers of patients treated under the MHA showed that most carers feel isolated and unsupported. They need help to overcome feelings of frustration and guilt and to restore relationships with their loved ones and services. The recent MHA review recognised the need to support carers throughout this challenging time (Mental Health Act Review., 2018).

However, there are no routinely available services specifically designed to support carers through one-to-one emotional support and practical help during and after this difficult time. This is an important gap given the increasing number of involuntary admissions (Care Quality Commission., 2019) and carers exposed to these distressing experiences.

Peer support among patients has proved to be popular and effective in mental health services with limited costs. In Germany, a programme where carers are trained to provide one-to-one support to fellow carers reduces caregiving stress and improves carers’ quality of life (Heumann K et al., 2016). This programme, known as the EX-IN training programme, has become routine care in more than 35 areas and 250 hospitals within Germany.

Carer peer support is underpinned by the stress appraisal and coping theory (Lazarus P & Folkman S., 1984). Carer peer supporters (CPS) use their lived experience to help carers judge their own sources of stress and identify together information resources and strategies to improve coping, reduce stress and increase well-being.

The training for CPS includes modules focused on promoting carers’ health, well-being and empowerment, a three-way collaboration between service users, carers and clinicians, and recovery. They learn how to: a) reflect on their own experiences and coping strategies and b) actively use their own experiences to help other carers. Regular peer group supervision is provided on a fortnightly basis by a psychologist. All CPS receive payment for their activities.

 

Ultimately, the OPAL project aims to address the unmet need of routinely available support services for carers of patients being treated under the MHA by investigating the potential for a carer peer support programme in England.