Background

This study will investigate the views of patients in involving friends and family members (“carers”) in their mental health care whilst they are in hospital.

Previous studies have found that people using mental health services are more likely to stick to their treatment plans and have better outcomes when their supportive friends and family members are involved in their care. Most government policies and mental health guidelines suggest that staff members should involve carers in patients’ treatment. Despite this, carers frequently report feeling excluded from patients’ care and from giving or receiving information about the patient. This is particularly a problem in hospital settings, when someone is admitted to an inpatient ward following a mental health crisis.

In the published research, the many difficulties that carers can face when trying to be involved are reported quite widely. There are also lots of studies discussing staff members’ and researchers’ opinions about how best to involve carers. However, when considering “carers’ involvement”, the thoughts and feelings of patients themselves have not really been explored in detail. Patients are often held responsible for giving the “green light” for carers’ involvement, as their consent determines whether clinicians engage with carers or not. However, there is almost nothing in the research literature which helps clinicians understand how patients want involvement to take place or which things might be important for them when making their decisions. It is also unclear whether patients’ preferences about involvement remain fairly stable, or change over time. 

Research questions

• Who do mental health patients want involved in their inpatient care (if anyone) and what kind(s) of involvement do they want?
• Which factors do patients and carers identify as significant barriers and facilitators to carers’ involvement in inpatient settings?
• Which factors are associated with patients’ preferences regarding involvement?

Research activities

• Conceptual Review: Existing approaches will be reviewed to understand what “carers involvement” currently means for patients and carers. This will be considered in terms of (1) why do clinicians involve carers at the moment? (2) how much influence do patients and carers have to adapt the approaches to their needs? and (3) what is the balance of power between patients, carers and professionals in the different approaches?
• Qualitative interviews: 40 patients and carers will be interviewed to get a deeper understanding of their experiences, opinions and preferences about carers’ involvement.
• Inpatient survey: The information from the interviews will be used to design a short survey, which will be administered to around 200 people who have recently been admitted to hospital. The survey will measure whether particular factors influence patients’ decisions about how much carers’ involvement they want in their treatment. It will also measure whether (and how often) their preferences change.

Conclusion

The findings from this study have the potential to improve the experiences of patients, carers and clinicians in inpatient settings by:

• Informing clinicians about how best to elicit patients’ preferences and the potentially influential factors to be mindful of when facilitating carers’ involvement
• Identifying barriers and facilitators to implementation from the perspectives of patients and carers
• Contributing substantially towards the development of patient-centred approaches to mental health care by researching a significant but underexplored area.

Staff

Aysegul Dirik

Associated papers

• Eassom, E., Giacco, D., Dirik, A., & Priebe, S. (2014). Implementing family involvement in the treatment of patients with psychosis: a systematic review of facilitating and hindering factors. BMJ open, 4(10), e006108.

Funder

• Self-funded part-time PhD.
• Employed full-time by Queen Mary University of London as part of the CLAHRC project funded by the National Institute for Health Research.