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The role of social work in supporting people affected by Creutzfeldt-Jakob Disease (CJD): a scoping review

Research output: Contribution to journalArticle

Original languageEnglish
JournalBritish Journal of Social Work
Early online date24 Dec 2018
Publication statusE-pub ahead of print - 24 Dec 2018

King's Authors


Social work practice in England and the wider United Kingdom is curiously under-informed about its own practice in supporting people affected by Creutzfeldt-Jakob Disease (CJD). This paper reports the findings of a scoping review undertaken in 2018 of what is known about social work support for people with CJD and their families. Conceptual and thematic analysis of the limited literature identified in the review enabled us to develop a consensus on reported themes: rapid decline and the need for quick responses; families’ need for support; and the use of case studies and case reports. The review identified significant gaps in the evidence, particularly as the literature currently published pre-dates the contemporary legal framework for social work practice in England. We therefore argue that there is clear scope for further research, investigating the specific social work role in supporting people affected by CJD, potentially providing the profession with greater confidence about its potential contribution, and evidence of its potential and actual effectiveness.

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