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Factors associated with participation in QUALYCARE published in PLOS ONE

plos one research paperThe research paper 'Factors associated with participation in QUALYCARE' has been published in the January issue of the PLOS ONE journal.

In this paper, Natalia Calanzani and colleagues examine the differences between people who agreed to take part in the QUALYCARE study and those did not take part despite receiving an invitation. The authors also describe the reasons non-participants gave to refuse participation. The findings show that relatives who were female and relatives of patients who were aged 90+ were more likely to return a completed questionnaire. On the other hand, relatives of patients who died in hospital and relatives who were not the patient’s spouse or partner were less likely to return the questionnaire. Among non-participants, 205 explained why they refused participation and often there was more than one reason for doing so. The most common reasons for refusal were related to the study itself (e.g. questionnaire was too long), to the relative (e.g. person did not have enough knowledge to complete the questionnaire) and to grief (e.g. being too upset to take part).

The findings show that our survey better reached relatives of older patients while those dying in hospitals were underrepresented. The characteristics of the bereaved relatives played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. The results on reasons for refusal suggest that changes in study materials may help to increase participation in similar bereavement surveys in the future, although a number of people might not take part because they are grieving (even if the questionnaire is developed in a very sensitive manner), and their wishes must be respected. This is important because mortality followback surveys such as QUALYCARE are frequently used to evaluate end of life care, not only in the UK but also elsewhere in the world.

The manuscript is freely available worldwide and can be accessed here.