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Open Access Highly Accessed Research article

“It’s alright to ask for help”: findings from a qualitative study exploring the information and support needs of family carers at the end of life

Emily Harrop, Anthony Byrne and Annmarie Nelson*

Author Affiliations

Marie Curie Palliative Care Research Centre, Institute for Translation, Innovation, Methodology and Engagement, Cardiff University School of Medicine, Neuadd Meirionnydd, Heath Park, CF14 4YS Cardiff, UK

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BMC Palliative Care 2014, 13:22  doi:10.1186/1472-684X-13-22

Published: 17 April 2014

Abstract

Background

Family carers play an essential role in providing end-of-life care to their relatives but have been found to experience uncertainty and a lack of confidence in fulfilling their caregiving roles, prompting recent calls for educational or information based resources to be developed for carers.

Methods

We carried out four focus groups with Clinical Nurse Specialists, healthcare assistants, former and current carers at a hospice in the UK, to explore the information and support needs of family carers.

Results

Our findings support previous research by highlighting a number of care situations where carers experience uncertainty and could seemingly benefit from greater information or instruction. Three main themes were identified which reflected carer experiences and needs in relation to potential information giving or educational interventions. These have been described as the knowledge and competence of carers; the preparedness of carers and low levels of carer identification with, and confidence in their roles as ‘carers’, which influences help seeking behaviours; and in turn how potential supportive interventions might be received by carers.

Conclusions

Family carers experience multiple needs for information and education, but meeting these needs remains a challenge. Our results suggest three domains which could underpin this type of intervention: developing knowledge and competence; facilitating preparedness; supporting role recognition and confidence building. We recommend an integrated information giving approach which addresses these domains by combining a resource pack for carers with a more explicit acknowledging role for health professionals. Together these could provide key information and also build confidence amongst family carers to ask for further support and advice as needed.

Keywords:
Family caregiver; Education; Palliative care; Qualitative research