Adult family carers’ perceptions of their educational needs when providing end-of-life care: a systematic review of qualitative research

Abstract

Background: There is an increasing emphasis on the importance of the palliative and end-of-life care being provided in the community. Key to the success of this is the availability of information and educational support to facilitate carers in their role. The aim of the paper is to explore the educational needs of adult carers providing physical and other care to people at the end of life Methods: A qualitative evidence synthesis was conducted using meta-ethnography. Five electronic databases were searched to January 2014, combining terms for: cancer, chronic obstructive pulmonary disease, neurodegenerative conditions, renal disease, heart failure and dementia, with terms for carers and education. Results: A total of 35 papers were included in the review, reporting the experiences of over 900 carers. Throughout the illness trajectory carers were either enabled or hindered in their role by the nature and way information and education were provided. Enabling factors included: a sense of trust in health professionals; timely and accurate information delivered compassionately; access to professionals for information and support particularly during out-of-hours. Where carers experienced a lack of information or support this added to the strain of caring. Carers then felt the need to take on a more active role, acting both as an advocate and decision maker. Conclusions: Carers express information and educational needs throughout the illness trajectory. The quality of health professionals’ communication with carers was fundamental in ensuring carers felt confident and supported. Timely access to information and support from appropriately qualified health professionals should be made available to carers, including the out-of-hours period.