The human dimensions of post-stroke homecare: experiences of older carers from diverse ethnic groups

Abstract

Purpose: Very little is known about how older people from black and minority ethnic (BME) groups caring for someone after a stroke access and engage with social care services. This paper explores both the experiences of carers whose relative was receiving social care services in their own home and the value of a theory of humanising care to understand and explain these experiences.

Method: Semi-structured interviews were undertaken with 50 carers from five different ethnic groups: Asian Indian, Asian Pakistani, Black African, Black Caribbean and White British. Data were thematically analysed within a phenomenological framework.

Results: Five interacting themes emerged: communication and bureaucracy; time and timing; communication and rapport building; trust and safety; humanity and the human dimensions of care. Many of the experiences could be interpreted within a conceptual framework of humanising care underpinned by eight interacting dimensions of what it means to be treated as an individual and a human.

Conclusions: Carers from BME and White British groups share many experiences of homecare although language and cultural difference may exacerbate common pressures and stresses. The framework for humanising care is a useful tool to evaluate aspects of homecare that are responsive to dignity and diversity.

Implications for Rehabilitation

• Explicitly identifying, describing and valuing the human dimensions of care may support services in responding appropriately to homecare users from black minority ethnic communities as well as those from white majority groups.

• Unresponsive services and poor communication may lead to loss of trust with care agencies and undermine BME carers’ sense of entitlement and competence in engaging with homecare services.

• Care worker continuity investing time in building relationships and care worker familiarity is important to many families who access social care services.

Keywords:

• Caregivers
• ethnicity
• humanising care
• qualitative
• social care
• stroke

Acknowledgements

We are grateful to National Institute of Health Research School of Social Care Research (NIHR SSCR) for funding the original research. Thanks are due to Jess Holley and Theresa Ellmers who conducted the interviews and to members of the project’s advisory group. We also thank all of the individual carers who generously contributed their time and to the community organisations who helped with recruitment.

Declaration of interest

The views expressed here are those of the authors and not necessarily those of the NIHR SSCR or the Department of Health/NIHR. The authors have no competing interests to declare.