Improving the support for family carers in a Hospice at Home study

Categories: Education and Research.

… the impact of a service improvement study between a hospice and university

The underpinning ethos of the MSc Integrating Palliative and End of Life Care, delivered by a partnership between Edge Hill University Ormskirk, Lancashire and Queenscourt Hospice, Southport, was to provide a course that would have a real impact on improving palliative and end of life care.

Part of this programme included an Advanced Practice Project that allowed the students to select a study appropriate to their clinical area. (Link to course) Edge Hill University course information

Julie Davidson, Queenscourt at Home Co-ordinator, was a student on the programme.  She felt that family caregivers were possibly not receiving as much attention as they needed and selected this topic for her study.

Julie recognised that family caregivers are heavily relied upon to provide care and support to patients at end-of-life.  Without this vital support, many patients would not be able to be cared for and to die within their own home. 

The Covid-19 pandemic increased the burden on this group of individuals, who were already struggling and in need of support. Yet, routine assessment of family caregivers was not always regularly undertaken.

The hospice reviewed the standards of care for family caregivers and planned a service improvement study to include the components of audit and education as described below by Julie.

The study 

“A retrospective audit was conducted of all referrals to a Hospice at Home service, over three months in Spring 2022, from the organisations’ electronic patient record.

Information was collected against a set of identified standards which included main caregivers’ details, assessment and action plans. 88 records were examined (25 excluded) and it was identified that main family caregiver details (name and relationship) were documented in only 48% (30) with 43% (27) having main contact details recorded.

Only 2% (1) had a family caregivers’ assessment documented and no action plans were recorded.

An electronic survey was sent to all (18) clinical staff in the team, to identify their knowledge and experience of family caregivers’ assessment.  This was followed by an educational intervention and a post session survey was compared with the initial survey.

All 18 staff completed both pre and post surveys. Pre-education, 67% (12) demonstrated some knowledge of family caregivers’ assessment, but 61% (11) had no assessment experience. Post educational intervention, all 100% (18) had improved knowledge and 89% (16) had gained experience of caregivers’ assessment.

Finally, a second retrospective audit cycle examined 98 records (26 excluded), and showed that the main family caregiver details (name and relationship) were documented in 93% (67), with 86% (62) having main contact details recorded.  A family caregivers’ assessment was documented, separately to the patient information, in the records in 85% (61) and a caregiver’s action plan was recorded in 79% (57).

Conclusion

A targeted educational intervention on the impact of caregiving and importance of undertaking a caregiver’s assessment, resulted in improved knowledge and subsequent experience of staff in the assessment process.

This helped to ensure that family caregivers are known to the service, have their own needs assessed and, where required, a targeted caregiver’s action plan developed

Impact

Dr Karen Groves, Clinical Programme Lead, Queenscourt, said

“The Queenscourt at Home service provides support for both patients and their family carers. Julie’s project has been focussing on the needs of those who provide that vital informal care.

Following thorough education for all those working for the service, she has hugely increased the numbers of those family carers who are recognised as such, ensuring each one of them has a personal assessment of their own needs, and that they have been able to discuss what they can do to ensure their own needs are met, without feeling guilty or selfish.

This is crucial to the role and needs of family carers being acknowledged, and for carers to be able to continue caring.

Without support for informal family carers, the wishes and preferences of patients cannot possibly be met. This work has the potential to increase the number of patients able to be cared for in their own homes and improve the bereavement experience for family carers later.”

Professor Barbara Jack, Academic Programme Lead (Edge Hill University) said

“This is an excellent example of where an academic study can be directly used to enhance care and demonstrates the value of the academic and clinical partnership.

Importantly it enables the impact of academic programmes to immediately ensure the care of patient and families is improved to the level of the best”

Julie was awarded the Edge Hill University Pat Swain prize 2023 for the study for receiving the highest mark in her module cohort.

She added “Supporting family carers is so important as they are caring for their loved one. The project has resulted in more issues for carers being identified and targeted support provided which is much valued by the families”

 

Julie Davidson1

Karen Groves,1

Barbara Jack,2

Jane Hough,1

Charlotte Moen2

 

1 Queenscourt Hospice, Town Lane, Southport, Merseyside

2 Edge Hill University, Faculty of Health, Social Care and Medicine, Ormskirk, Lancs.

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https://www.queenscourt.org.uk/news/

 

Comments

  1. Linda Gregory

    Such an important and valuable piece of work. As previously reported the support that is given to the main carers so greatly impacts the care given to the patient. Impacting the patient’s choice regarding their place if care.
    Well done Julie an interesting and useful piece of research.

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