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01.12.2014 | Research article | Ausgabe 1/2014 Open Access

BMC Palliative Care 1/2014

“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

Zeitschrift:
BMC Palliative Care > Ausgabe 1/2014
Autoren:
Emily Harrop, Anthony Byrne, Annmarie Nelson
Wichtige Hinweise

Competing interests

The author(s) declare that they have no competing interests.

Authors’ contributions

EH facilitated the focus groups, analysed the data and drafted the paper. AN facilitated the focus groups and helped to draft the paper. AB conceived of the study, participated in its design and coordination and helped to draft the manuscript. All authors read and approved the final manuscript.

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.
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