Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study.

BMJ Supportive & Palliative Care
Anna Victoria BowyerAnnmarie Nelson

Abstract

In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design. Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically. Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying lang...Continue Reading

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