To coincide with the implementation of The Carer’s (Scotland) Act this month, our research nurse Alison talks about the role of carers in the EMPOWER study.
The importance of informal carers of people experiencing mental health problems (often family and friends) has long been underestimated and their needs can be overlooked.
In Scotland the recent introduction of a carers’ charter enhances the recognition of the role of informal carers of people with experiences of mental health problems. It also highlights the rights carers have to help improve their own health and wellbeing, so that they can continue to care, if they so wish, and have a life alongside caring.
The people taking part in the EMPOWER study have experienced psychosis at some point in their recent past. We know from focus group discussions that took place during the development phase of the EMPOWER App that this can be a frightening, stressful time for families and loved ones, and that those closest to someone experiencing psychosis will often adopt a caring role to help the person through. This could mean taking on additional responsibilities for an unknown period of time; anything from providing emotional support, to practical help with household activities, personal care or administrative tasks.
Each participant in the EMPOWER study has the opportunity to nominate a carer to also take part in the study; this could be their partner, a parent or a close friend. Over the course of the study, our team will meet regularly with those carers nominated by participants to find out more about their role as a carer: the nature of the caring role they provide, how it affects their relationships with family and friends, and how it impacts on their physical health and emotional wellbeing.
We are mid-way through the recruitment phase at the moment and it’s been really heartening for the team to see firstly how many of our participants would like to involve someone else who is significant to them, and also the enthusiasm from the carers themselves to become involved in the research process.
We hope that using the EMPOWER App will help study participants to recognise changes in their day to day wellbeing that might indicate the onset of a period of psychosis, and where possible take action to prevent any further deterioration in their mental health (sometimes referred to as relapse).
When a person has recovered from an episode of psychosis, family members and loved ones often remain fearful and anxious about them becoming unwell again. This was reflected in our focus groups, where some carers who took part discussed feeling that they may lack confidence in recognising relapse. As the EMPOWER App encourages participants to identify and monitor changes associated with relapse, we hope that engaging with the App can increase carers’ knowledge and understanding around possible early signs of relapse, and their confidence in offering emotional support or help-seeking from services.
Involving carers in the EMPOWER research process means recognising the important role they play in the lives of study participants, and also seeing the value in adding to carers’ understanding of their loved one’s experience of psychosis more broadly.