Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Abstract

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.

Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.

Participants: 44 bereaved carers, who had been identified by GP as ‘main carer’ of someone recently deceased (3–12 months), aged between 38 and 87 years old (mean= 67).

Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.

Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.

Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care ‘work’. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.

KEYWORDS:

• Social support
• carers
• end of life
• resilience
• qualitative

Acknowledgements

The authors are very grateful to the participating carers for their time and for sharing their experiences of providing care.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the UK National Institute for Health Research Service Delivery and Organisation programme [grant number 08/1809/232]. The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the NIHR SDO programme or the Department of Health. The funder had no involvement in the study design, recruitment, data collection, analysis, writing up or publications decisions. North West 2- Research Ethics Committee Liverpool Central, 10/H1005/16.