How to summarise and report written qualitative data from patients: a method for use in cancer support care

Abstract

Goals of work:MYCaW questionnaires from people at these cancer support centres was carried out. The "concerns", "other things going on in their life" and "important aspects of centre" were thematically categorised, externally validated by a focus group and the inter-rater reliability calculated. Main results: Clinical information from a cancer patient's perspective was collected that is not measured on standard quality of life questionnaires; furthermore some themes acknowledge the multifaceted aspects of CAM provision, rather than information only relating to the therapeutic intervention. Categories for qualitative MYCaW analysis have been established providing a tool for future research and/or service delivery improvement within cancer support centres such as these. Conclusions: The established themes provide a framework to aid analysis of qualitative aspects of complementary therapy care for people with cancer, improving our understanding of how the patient's cancer experience can be aided by complementary therapies in specialized cancer centres.

Individualised and complex experiences of integrative cancer support care: combining qualitative and quantitative data

“…Qualitative data were first categorised via the process of a content analysis and a framework of categories was produced [19]; this current paper therefore represents the results of the proportions of responses in different categories and supercategories. All people with cancer were guided to state 'one or two' concerns, although some people still stated more than two; the majority of these extra concerns, however, fell within the same supercategory.…”

“…All people with cancer are offered complementary therapies, irrespective of their cancer stage or prognosis or the type or stage of hospital medical treatment they are receiving. A more detailed description of the settings and methods of this study are published elsewhere [19].…”

“…Data were analysed using a published framework [19] and responses allocated to one of four possible supercategories (Figure 1). Table 1 shows the MYCaW scores, before and after the treatment programme (described above), for all people who completed a follow-up questionnaire.…”

“…[19]. Out of the 588 participants, 364 responded to the question and reported 498 items, that were assigned to 6 supercategories, (Figure 4).…”

“…MYCaW is an individualized questionnaire which allows the respondent to specify their concerns, score the severity of these concerns and their level of wellbeing, and also write about important aspects of their lives and their treatment experiences in their own words [17].Repeated completion provides quantitative and qualitative data that can be compared at different stages of treatment. MYCaW is now being used in at least 10 UK cancer support centres and a few centres in North America and is reported to be popular because of its brevity, acceptability, appropriateness, and responsiveness to change [17;18] Details of the development of MYCaW, as an adaptation of Measure Yourself Medical Outcomes Profile, MYMOP, and the psychometric properties of these measures are reported elsewhere [17,20 21] Summarising and analyzing the written qualitative data collected with MYCaW can prove challenging, but recent work by Polley et al (2007), using the same qualitative data reported in this paper, has provided a structure for such analysis, thus promoting more detailed and comparative reporting of the qualitative data alongside the quantitative scores [19]. This paper reports the findings of service evaluations, carried out in three integrative cancer support centres in England, that utilized MYCAW to investigate the experiences of people with cancer and perceived changes in their concerns/problems and wellbeing over time.…”