1. Women’s perceptions of the usability of a diary in asthma management M.A. Valerio, Ph.D., M.P.H. University of Michigan School of Public Health A qualitative analysis was undertaken as part of the examination of the use of a diary in asthma management. The aim of the qualitative exploration was to improve the understanding of the completion, interpretation and use of the asthma diary. Second, the examination evaluated the potential of the diary to capture data on living with a chronic illness in the words of participants. Finally, the use of a qualitative method allowed for the exploration of the effects of writing on the daily management of a chronic disease. A randomly selected sample of women who completed the asthma diary were contacted to participate in a one-on-one interview. Twenty-one women participated in the in-depth interviews. Women participating in the study were from the Southeast Michigan area. Interviews were conducted during October and November 2005. The findings provide support as well as highlight areas for improvement in the use of a diary in asthma management. This study has identified ways in which an asthma diary can improve management and encourage self-regulatory behavior in adult women with asthma. The experiences of the women interviewed illustrate the ways in which the asthma diary made them more responsive to their asthma, caused them to become cognizant of its impact on daily routines, and helped them to identify and accept the need for care on a daily basis. The asthma diary evaluated appears to have enforced appropriate asthma management strategies and identified areas for improvement in a manner that was easily understood by the women. Themes and Issues of the Act of Documenting Domain Enhancing of problem analysis and action Increases general awareness Cannot deny have asthma – a chronic disease Causes re-evaluation of problems Formation of patterns and relationships Figure out connections Brings difficulties and problems to forefront In “black and white” Creates a history of asthma care needs Reference for action The diary shows changes in asthma over time Example from data: “I was able to see actually how much I used my Albuterol. I always thought that I – I didn’t have – I knew I had asthma, but I didn’t think it was a very serious case. …but I didn’t realize how much I used my inhaler.” Themes and Issues of the Asthma Management Problems Domain Balancing family responsibilities and asthma care needs Limitation to participation in family activities due to asthma Responsibilities care of others – putting others first Impact of asthma on daily activities Changes in management due to diary use Observation of asthma Increased awareness Reaction/care of asthma Judgment of asthma Confirmation of routine/need Example from data: ” “I just had never thought about trying to keep track of what it [asthma] was doing. It was more casual care. The diary was something new and since then I have applied it to other parts of my life, keeping a diary of food and things like that. Migraines you know, what are the triggers for those.” Themes and Issues of the Diary Use: Benefits and Challenges Domain Usefulness of the WBF Diary for asthma management and understanding Diary as communication tool with others (family, health care providers, physicians) With other health care providers Feedback Need for feedback from physician or HC provider Value of diary without feedback Completion of asthma diary Daily timing of completion (morning or evening) Recalling of events Duration of use (weeks, months, etc.) Burden of completion Benefit to the older vs. newly diagnosed patient Introducing diary as a tool for management Timing of assignment: problems vs. routine Formatting of the Diary – Suggestions for changes Suggestions for improvement/instructions Easier system – Use of a calendar or checklist method Interpretation of data collected in the diary How read the diary – Formation of patterns and relationships: interpretation Ability to recognize changes/needs after using the diary Physicians or health care providers must clearly state the purpose of the diary and provide definitions or parameters for the patient. Feedback or review of the patient’s diary entries should be provided. The use of asthma diaries should not be limited to the newly diagnosed or patients with less severe asthma. The diary appears to be appropriate and helpful for patients with all levels of asthma severity. The act of documenting resulted in an increased understanding of asthma. The result of completing the diary for a period of time is a training of the participant to become self-regulatory. Seven of every ten Americans die as a result of a chronic disease or its complications (US HHS, 2006). Most persons living with a chronic disease can expect a prolonged course of illness and a degree of disability. Therefore, living with a chronic disease requires that individuals learn to manage or care for their illness in order to decrease its impact on their quality of life and reduce daily limitations (US HHS, 2006). Because of the scope of chronic disease in the US, the need to evaluate health strategies for its management is significant. Public health program evaluations do not always extend to the 'tools' utilized in the delivery of intervention strategies. One of these commonly used instruments is the health diary. Women who had participated in the RCT evaluating the Women Breathe Free program were recruited for the in-depth interviews (treatment group) and one focus group session (control group). The analysis aimed to capture not only the usefulness and potential, but also critiques of the asthma diary used in the Women Breathe Free (WBF) study. This qualitative examination aimed to improve the understanding of the completion, interpretation and use of the diary in asthma management. Second, this qualitative component evaluates the potential of the diary to capture data on living with a chronic illness in the words of participants. Finally, the use of a qualitative method allowed for evaluation of the effects of documenting on daily management of a chronic disease as conceptualized through written disclosure. The qualitative analysis was guided by questions that included: “Is the use of an asthma diary associated with improvements in an individual’s observation of asthma management?” “Does the diary provide feedback that is perceived to be useful and educational to the user?” See appendix for qualitative interview discussion guide. Findings are presented under the three domains and themes commonly found across the data in analysis. ABSTRACT BACKGROUND & METHODS PARTICIPANTS DOMAINS CONCLUSIONS Baseline data was used to identify demographic characteristics of the qualitative study participants. Overall, women participating in the focus group and in-depth interviews were representative of the population of women in the larger study and very similar to those using the asthma diary. Twelve of the participants had been diagnosed with asthma as children and 21 had been diagnosed at 19 years of age or older. The majority of women were between the ages of 31 and 60. Three women reported high school level education and 21 had two years of college or more. Twenty of the women were married. Most of the women were white (31), two were African-American. The household income of women ranged from $40,000 or less (6) to greater than $80,000 (10). All women had health insurance. Thirteen of the women interviewed had symptoms associated with mild-intermittent asthma, 3 had mild-persistent, 11 had moderate persistent and 6 had severe persistent asthma as categorized by NAEPP guidelines (NAEPP, 2001). DOMAINS The data reported in the asthma diary appears to have guided women through a conscious observation process that led to judgments and reactions closely related to their ability to manage their asthma. Participants used the feedback provided by their daily diary to influence subsequent behavior, forming a feedback loop (Carver, 2004; Clark, 2001). Use of the diary to encourage self-regulation was the connection it promoted between asthma and everyday activities. The perceived burden associated with use of the diary was seen as small. The burden of use was the strongest concern of women in the control group. One complaint of the diary format was repetitiveness of entries. SUMMARY