Supporting Carers in the Stroke Early Supported Discharge Service

The overall aim of the project was to reduce carer strain of carers of stroke patients in the early supported discharge team in order to increase their knowledge and confidence in their caring role in alignment with NG150. Relevant NICE recommendations are indicated below in brackets.

Within this short term aims and objectives included:

• To identify ideas for more personalised and effective carer support from the carers themselves (NICE recommendations 1.3.2, 1.6.4)

• Once an appropriate intervention was identified by the carers themselves, we aimed to co design this with the them (1.3.4, 1.3.8, 1.6.4)

• To evaluate the effectiveness of the carer intervention (1.1.3)

• To improve the opportunity for carers to consistently be able to ask questions and share any concerns with health professionals (1.3.8, 1.1.2)

• To improve the perception of carers about whether their needs had been considered by the ESD team (1.3.12, 1.1.2)

• To design a carer friendly preparation sheet for the intervention (1.3.9)

• To provide the appropriate location and timing of intervention to best meet the carer’s needs (1.3.6, 1.3.7)

• To improve targeted resources for carers and staff (1.3.12, 1.6.4, 1.6.5, 1.1.3)

• To reduce carer strain (1.5.2, 1.5.3, 1.6, 1.7)

• To improve emotional support and the well-being of carers (1.7)

• To improve knowledge and skills in the caring role (1.6.1, 1.6.4. 1.6.5)

• To increase confidence in the carer role (1.3.5, 1.7)

• Improve how carers felt about adjusting to change in their lives (1.3.5, 1.7)

• To improve education for staff in order to support carers more appropriately (1.3.3, 1.7)

• To improve collaboration of services between ESD and social services to improve access and efficiency of support (1.5.1, 1.6.10).

More than 900,000 people in England are living with the significant morbidity following a Stroke (NICE 2013). NICE (2016) Quality Standard 2 describes early supported discharge (ESD) as an intervention for adults following a stroke, which supports their care to be transferred from an in-patient to a community setting.

It enables people who have had a mild to moderate stroke to continue their rehabilitation therapy at home beginning within 24 hours of discharge. Informal carers play a vital role in the recovery of people with stroke. However, we know that discharge from hospital can be a particularly worrying time. Carer strain can be high and for some, it is possible that accelerating discharge home exacerbates this.

This initiative was inspired from research started by The University of Southampton on understanding rehabilitation burden of carers in Stroke ESD. We decided to find out more about what extra carer support may be needed for our own service. Initially the project was kick started by a £2,000 award from Maddison Product Design who ran an ideas design workshop, otherwise there has been no additional funding, solely NHS.

The resulting project has been in collaboration with the clinical audit team, with input from our clinical psychologist and social services. A baseline focus group and audit were completed with carers to establish carer perception and ideas for service development regarding improving carer support. The focus group generated ideas for improvement whilst the audit showed gaps in carer support which we then could target with intervention. We organised a follow up focus group with carers to co-design a one to one session which they had identified in the initial group. They came up with design issues which we problem solved together and we planned the session accordingly based on their needs. e.g. carers reported they wanted the session to be open rather than structured and they wanted it to be face to face in a location of their choosing.

ESD enables people who have had a mild to moderate stroke to continue their rehabilitation therapy at home beginning within 24 hours of discharge. Informal carers play a vital role in the recovery of people with stroke. However, we know that discharge from hospital can be a particularly worrying time. Carer strain can be high and for some, it is possible that accelerating discharge home exacerbates this.

This initiative was inspired from research started by The University of Southampton on understanding rehabilitation burdsen of carers in Stroke ESD. We decided to find out more about what extra carer support may be needed for our own service. Initially the project was kick started by a £2,000 award from Maddison Product Design who ran an ideas design workshop, otherwise there has been no additional funding, solely NHS.

The resulting project has been in collaboration with the clinical audit team, with input from our clinical psychologist and social services. Before the change, carer support included assessment of carer strain (using the carer strain Index) at the halfway point and the offer of a referral to social services for carer support. Education for carers was more informal and was planned as part of a patient session as indicated, but there were no stand-alone sessions for carers without the patient present.

Prior to the project, we felt that there may be an unmet need, as carers would talk about the emotional impact on them informally and also we had some comments regarding this on patient satisfaction feedback. We realised that we needed to specifically canvas carer’s opinions in order to evaluate their needs as well as their ideas to improve carer support during ESD. A baseline focus group and audit were completed with carers to establish carer perception and ideas for service development regarding improving carer support. The focus group generated ideas for improvement whilst the audit showed gaps in carer support which we then could target with intervention.

We organised a follow up focus group with carers to co-design a one to one session which they had identified in the initial group. They came up with design issues which we problem solved together and we planned the session accordingly based on their needs e.g. carers reported they wanted the session to be open rather than structured and they wanted it to be face to face in a location of their choosing.

The above objectives were achieved.

• Ideas for carer intervention were generated from the collaborative focus groups and the main intervention was chosen co-designed by carers was a one to one session with a health care professional.
• Staff had training sessions from a clinical psychologist regarding communication and dealing with distress so carers could be supported more appropriately.
• Links have been made between ESD and social services, ESD is now recruiting its own social worker.
• The post intervention audit demonstrated a significant improvement in carers feeling more supported. There was an increase in carers feeling they had enough opportunity to ask questions from 66.7% pre intervention to 100% post intervention.

The opportunity to ask questions about their own needs as a carer improved from 64.3% to 92.3%. The feeling that they had enough information about the patient's condition so that they felt confident in caring for them increased from 66.7% to 84.6%. Having enough information about rehabilitation and expected recovery increased from 60% to 92.3%. Knowing how and where to access further information increased from 60% to 92.3%.

Being able to understand information provided improved from 86.6% to 100%. Feeling that their caring needs had been considered by the ESD team improved from 83.3% to 100%. Feeling that they had been supported in adjusting to changes in their lives improved from 66.7% to 92.3%. Lastly feeling that they had been involved in ESD input as much as they would have liked improved from 85.8% to 100%.

Staff have embraced this new approach and welcomed the chance to develop their role so that carers have the opportunity for their needs to be addressed. Carers have fed back that they value the chance to voice their concerns and have their questions answered in a confidential setting of their choosing. This initiative has meant that resources can now be targeted to the topics which mean the most to individual carers.

Because we inform and provide information about the carer session at the first visit, they know that they will have the opportunity to ask questions in a slot dedicated to them and regarding the topics which are concerning them the most. This has led to improved carer satisfaction and to less “ad hoc” queries which may take place in a rushed manner when the health professional does not have as much time to answer as they would prefer.

Key learning is that involving carers was essential to the success of the intervention. This project has demonstrated that carer strain and outcomes can be improved once targeted and personalised input is provided.

Being flexible about where and how sessions are delivered is also pivotal for carers to feel comfortable so that the intervention can be effective. It would have been beneficial to have a social worker as part of the ESD team whilst this project was being undertaken. However, going forwards an opportunity has arisen for a social worker to become part of the ESD team and this should enhance knowledge around benefits, care and return to work.

Having the input from a clinical psychologist was very beneficial in planning the project but due to limited funds there is no ongoing support for further intervention. Concerns regarding emotional support were highlighted by carers as a key issue so having access to ongoing clinical psychology would be a great asset for carers.