Feasibility of using postal questionnaires to examine carer satisfaction with palliative care: a methodological assessment

Abstract

This paper reports on the methodological findings from a project which examined the feasibility of using a postal questionnaire to assess lay carer satisfaction with palliative care. The focus of this paper is the process of questionnaire development and its psychometric evaluation. The questionnaire was derived from an interview schedule used in previous national surveys of care for the dying, and was refined through qualitative work with recently bereaved lay carers. It was then tested in a postal survey of 355 lay carers identified from death registration certificates. Overall response rates were low, but significantly enhanced by the use of a single reminder sent 3 weeks after the initial mailshot. The analysis indicated that in the majority of cases the person targeted to receive the questionnaire was the most appropriate informant. Psychometric evaluation of the questionnaire against five criteria was encouraging, with low item nonresponse and ineligible response, and some evidence of discriminatory power, reliability, and face and content validity. Postal approaches appear to represent an acceptable means of assessing user satisfaction with palliative care, compared with more resource-intensive methods.

Bereaved relatives’ views about participating in cancer research

“…Nevertheless, it is worth noting that the response rates (56% in phase I and 65% in phase II), were higher than in previous population-based and service-based surveys. 18,19 The study provides important new evidence that although engaging in mortality follow-back surveys can evoke distressing emotions to some bereaved relatives, many find it a positive and useful experience. This finding has implications for the perceived vulnerability of this group and the ethical debate about engaging them in research.…”

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study

“…These studies and our pilot study have indicated that most bereaved relatives welcome the opportunity to make a contribution towards improving care for others by taking part in research. Furthermore, using postal surveys of bereaved relatives is a well established and accepted method of research in end-of-life care, with tradition in the UK and indeed recommended in the recent National End of Life Care Strategy[14,22,23]. It has been shown that this kind of surveys can be carried out in an ethical manner.…”

Researching experiences of terminal cancer: a systematic review of methodological issues and approaches

“…In one study, response rates were improved by 20% by means of sending one reminder, although ethical concerns caution against further reminders being sent (Jacoby et al 1999). For example, postal questionnaires are an economical method of covering a wide geographical area, avoid interviewer bias, and have also been used to gain good-quality retrospective data from bereaved carers.…”

“…Some argue that seeking the retrospective views of bereaved relatives is one way of overcoming the difficulties of accessing patient views (Jacoby et al 1999;Krishnasamy 2000b). Some argue that seeking the retrospective views of bereaved relatives is one way of overcoming the difficulties of accessing patient views (Jacoby et al 1999;Krishnasamy 2000b).…”

“…For example, postal questionnaires are an economical method of covering a wide geographical area, avoid interviewer bias, and have also been used to gain good-quality retrospective data from bereaved carers. In one study, response rates were improved by 20% by means of sending one reminder, although ethical concerns caution against further reminders being sent (Jacoby et al 1999). Another study of bereaved carers' degree of dissatisfaction with hospital care found that open questions were required to gather these kinds of data (Seamark et al 2000).…”