Postal questionnaires to bereaved carers - are they still feasible and ethical in England?
Burt, Jenni, King’s College London, UK, Addington-Hall, Julia, King’s College London, UK, Shipman, Cathy, King’s College London, UK, Richardson, Alison, King’s College London, UK, Beynon, Teresa, King’s College London, UK |
Aim: To undertake a large, nationally representative survey of bereaved carers in England, focusing on community nursing care.
Background: Bereaved relatives are an important source of information on services received up to and following death. The Voices postal questionnaire, on care in the last months of life, has been used successfully in a number of evaluation studies.
Methods: The Voices questionnaire was sent to a random sample of 2500 informants who registered a death 3 to 9 months previously, across eight cancer networks in England. Due to a tightening of data protection legislation, the Office for National Statistics (ONS) were responsible for sampling and mailing questionnaires.
Results: 1093 (43.1%) completed the questionnaire; 954 (37.6%) responded but did not complete as it was inappropriate (e.g. sudden death) or they did not want to participate. 30 (1.2%) had changed address.
Discussion: We achieved a lower response rate than in previous national surveys due to procedural difficulties, including recent data protection legislation. The response rate limits generalisability, although we hold data from over 1000 bereaved carers. Ethically, widespread dissemination is important, but we may be restricted in journal coverage.We aim to refine the process, with ONS, to improve responses for future studies.
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