Family carers’ experiences of support for rapid discharge arrangements
Research type
Research Study
Full title
Exploration of family carers’ experiences of support for rapid discharge arrangements for end of life care at home
IRAS ID
286993
Contact name
Siew Hwa Lee
Contact email
Sponsor organisation
Rober Gordon University sponsor
Clinicaltrials.gov Identifier
Amended Contract , 958408
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
Research Summary
We know that many patients and their families would prefer home-based end of life care. However, without appropriate support, this can be a frightening experience. Research has shown that family carers may feel ill-prepared to cope at the end of life at home. Since 2016, family carers in Scotland are entitled to an individual assessment of their needs before their loved one is discharged from hospital to home. Carers who are informed and supported are likely to feel better prepared to cope with the experience of caring for their loved ones at end of life. It is important that those who use services, such as patients and family carers, are able to help plan how these can be best delivered. In this study, we want to find out how recently bereaved family carers' preferences for support and their experiences of the support received when their loved one's death was imminent. We want to understand what support worked well and what could be improved at the end of life.
This study is supported by NHS Grampian to find out about family carers' experiences of support in preparation for rapid discharge when the patient’s condition is rapidly deteriorating in the last few days/weeks/six months of life at home. We will interview ten recently bereaved family carers (between 3 months to a year since their bereavement). We will invite family carers through the managers of the Liaison Hub Services, Community Nursing Services for Aberdeen, Aberdeenshire and Moray. We will also approach the Carer Support Organisations, Quarriers social care charity, and Public and Patient Involvement NHS Grampian. We will share our findings with all stakeholders including social care organisations and publish in relevant journals.
Summary of Results
We interviewed nine family carers and five other family members post bereavement between December 2020 and April 2022. Thematic analysis identified four key themes:
1. Challenges around communications: Some of the issues raised by the participants were around inadequate communications regarding the process of discharge, caring at home, and clarity around the role of family carer in the care process. This research was conducted during the climate of COVID-19 and may have impacted communications due reduced in-person contact and distanced communications methods.
2. Uncertainty arising from planning and inclusion of family carers in the care process. The reality of family carers’ experiences sometimes revealed care as a dynamic and shifting experience within which the role of the family carer was often not immediately clear. Some family carers suggest they would have benefitted from a more inclusive account and explanation from NHS staff of what is required of them. However, some of the positive narratives indicate that support from visiting caring staff helped to clarify uncertainties and unknown within the care process.
3. Possible psychological impacts and a need for additional support: Caring for a family member at end of life can be an emotional and complex experience for some participants. Some family carers revealed they had benefited from psychological support while some received little formal psychological support, had not accessed support or had attempted access.
4. Impacts of the COVID-19 pandemic upon overarching care process: The impacts from the COVID-19 pandemic were multiple over the experiences of family carers. The distancing procedures, lack of attendance in person and telephone-based communications created uncertainty situations with regards to care plan and care journey.The findings suggest family carers would benefit from being involved more directly in the process of discharge and arrangements for home care. A process evaluating the specifics of the planned home-care situation and the specifics (and possible limitations) of offering care at home may be of benefit to family carers. Additional psychological supports for family carers would be a significant benefit. Further research should be conducted to understand which supports may be more effective, and how these could be best placed for utilisation and support.
REC name
South East Scotland REC 02
REC reference
20/SS/0111
Date of REC Opinion
1 Dec 2020
REC opinion
Further Information Favourable Opinion