Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

ABSTRACT

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers’ experiences of caring, factors contributing to their stress, and strategies used to overcome stress.

Design: A qualitative approach involving in-depth interviews was used to explore informal carers’ experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.

Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers’ emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers’ pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers’ strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.

Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

KEYWORDS:

• Stroke
• informal carers
• ethnicity
• carer strain
• long-term care needs

Acknowledgements

We would like to thank the bilingual interviewers Jayna Shah and Gurpreet Santini; research nurses Shagufta Khan and Patrina Christian; and members of the Advisory Group: Deb Baker, Donna Richardson, Carol Akroyd, Homaira Khan and Vindo Kotecha.

Disclosure statement

No potential conflict of interest was reported by the authors.

Key messages

 (1) Relatives of stroke survivors are often expected to provide care for relatives with significant disability. Carers’ needs must be recognized and appropriate measures taken to enable and support them in their caregiving role.

(2) Anxiety linked to uncertainty concerning all aspects of caregiving had a major impact on carers’ psychological wellbeing. Carers were often left uninformed about discharge procedures, the tasks that care workers would perform, and the financial support available.

(3) Culturally appropriate needs and support for carers must be identified. British Indian carers living in extended households were no more guaranteed of support than their white peers in our study.

Additional information

Funding

This study was supported and funded by the National Institute for Health Research Collaboration in Applied Health Research and Care (NIHR CLAHRC), (RM61 J0002).