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"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

Harrop, Emily ORCID:, Byrne, Anthony and Nelson, Annmarie ORCID: 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. BMC Palliative Care 13 , p. 22. 10.1186/1472-684X-13-22

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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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Subjects: R Medicine > R Medicine (General)
ISSN: 1472-684X
Date of First Compliant Deposit: 23 November 2016
Date of Acceptance: 15 April 2014
Last Modified: 05 May 2023 01:49

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