HEALTH CARE AND SELF CARE:
QUALITATIVE EVIDENCE OF SELF CARE BEHAVIOURS CONTRASTED TO AND COMBINED WITH QUANTITATIVE MEASURES.
Jennifer Mullett, PhD and Marcia Hills, PhD
University of Victoria, British Columbia, Canada
Paper presented at the Qualitative Evidence-based Practice Conference, Coventry University, May 15-17 2000.
Introduction:
Quantitative measures, often reductionistic, limited and abstract when applied to everyday lives, are nonetheless still regarded as the sine qua non of evidence in the health system. Whereas qualitative approaches that reveal a person’s life, how they cope with health issues, their decisions about health care, their health concerns, (rather than the researchers) and how they live their life with disease or illness are called “soft data”.
One may regard the plethora of new books in qualitative methods as evidence of a trend towards a greater interest in descriptive data. In the health care field this interest is in part generated by the current zeitgeist of the value of client input leading the medical community to focus more attention on qualitative methods. However, qualitative studies are most often regarded by medical practitioners as perhaps interesting, but merely subjective, and thus dismissed as inferior to “real”, objective data.
Many authors, (e.g. DeRivera, 1976, Dewey, 1929, Gergen, 1989, Giorgi, 1992, Harre and Secord, 1972, Kvale, 1989, Lewin 1944, Mixon, 1990, Romanshyn, 1971, Thines, 1977, etc) have criticized the higher currency historically awarded the experimental design and the neglect of the value of qualitative or “subjective” data. Kvale (1989) has challenged in particular, the criteria by which the validity of qualitative data has been judged and has suggested an alternative criterion that has as its foundation a pragmatic theory of truth. This conception of validity appears to be more directly relevant for research that is aimed at bringing about changes in practice in health service delivery. The pragmatic criterion relates the truth of a knowledge statement to its practical consequences. Does this statement give us information that we can use to bring about change? (Kvale, 1989). In this paper, the value of descriptive data in relation to other quantitative measures for providing direction to health care reform will be described. The research to be described in fact demonstrated that, had quantitative measures alone constituted the primary data, erroneous conclusions would have been made and the potential for major change missed.
Background:
Partnerships for Better Health was a two-year self-care pilot project in British Columbia sponsored by the Ministry of Health, Medical Services Plan (MSP, the provincial remuneration branch for physician, hospital and pharmaceutical services) and the Capital Health Region (CHR, the local health authority). Based on the philosophy of supporting people to take care of simple health concerns themselves and the success of similar approaches in the United States, the pilot project was designed to test the receptivity of the public to self care resources and to gather information that would help with a larger provincial implementation. The evaluation employed a number of methods to determine whether or not people liked and used the provided resources and with what results.
Partnerships for Better Health project:
In November of 1997, an estimated 27,000 people in the Capital Health Region of Victoria received a self care book (Healthwise Handbook) that contained detailed health information and the telephone number of a telephone information/support line (Health Support Line) where they could talk to a nurse about any health concerns. A newsletter, distributed every few months, provided information on common and seasonal health problems. In contrast to the tele-triage lines in other provinces and the distribution of the educational materials alone, the Partnerships program was an integrated program with each of three components intended to contribute to the enhancement of participants’ knowledge and confidence in handling health issues. The following definition of self care was used:
Self care is defined by Dean (1986) as the “range of activities individuals undertake to enhance health, prevent disease, evaluate symptoms and restore health. These activities are undertaken by lay people on their own behalf, either separately or in participation with professionals. Self-care includes decisions to do nothing, self-determined actions to promote health or treat illness, and decisions to seek advice in lay, professional and alternative care networks, as well as evaluation of and decisions regarding action based on that advice.”(p.82)
Evaluation Approach
In order to be confident that any change in behaviour or knowledge was due to the self care project itself, and not some other factor, a number of methods were used to assess whether or not the objectives of the project were met. The evaluation objectives address changes in attitudes, knowledge and behaviour (including the use of publicly funded health services) with regard to self care. Often research that attempts to investigate the feasibility of new initiatives in health systems inadvertently employs a design that limits the investigation to themes of cost reduction and limits the heterogeneity of possible responses to either confirm or refute hypotheses. Therefore it is of limited generalizability to people’s real lives (Mullett & Coughlan, 1998).
This research attempted to avoid this administrative bias and the presuppositions of patient behaviour by employing a variety of methods to assess change. Questionnaires, telephone interviews, participant health care diaries, and the analysis of utilization patterns were all employed to address the question: Did the self-care intervention have an effect on self-care attitudes, knowledge and behaviour sufficient to influence participants’ utilization of medical services?. In addition, the different methods are used as a form of triangulation, that is, the use of multiple methods and data collection procedures to study a single problem or question in order to most effectively eliminate rival explanations for the results of the intervention. By employing a variety of methods, procedures and analyses the confidence with which the findings can be generalized to other populations was increased (Webb, Campbell, Schwarz and Sechrest, 1969).
The multiple methods and repetition of interviews and questionnaires allowed us to be in contact with participants every six months profiling the project and its components on a regular basis.
The focus of this paper is the participant self care diaries; however, a brief description of the other methods relevant to this discussion will be given in order to demonstrate the value of the diaries and the subsequent follow up with telephone interviews on the most puzzling of the descriptions.
Participant Telephone Interviews. At six months, a sample of 350 participants not included in the mail survey was randomly selected for telephone interviews. The purpose of the interviews was to obtain a more in-depth look at health care decision-making with respect to practising self-care, seeking professional care, and discussing and deciding on health care options with professional care providers. A second interview conducted at eighteen months with the same participants (where possible) followed up on any changes in attitudes towards self care, whether or not participants were continuing to use the resources and to explore issues of utilization that would provide evidence for decisions regarding further implementation of the initiative.
Participant Self-Care Diaries. Reply cards were included with the Handbook asking participants to volunteer to keep a diary of their health issues for a year. The incentive of an additional free Handbook at the end of a year and the return of the diary for their family records was offered. Five hundred and seven participants were sent a diary but some of these participants later moved out of the area. At the end of the year, the remaining 479 participants were asked to return their diaries. One hundred and eighty-eight diaries were returned (39%). Participants recorded self-care and care-seeking activities for up to twenty health issues over a one year period. This provided in-depth information on their experience of the decision-making process and factors affecting their health care behaviours. A qualitative analysis was conducted on diaries that contained health issues and a signed consent. A total of 153 healthdiaries were analysed or 30%. In the 153 health diaries there were 812 recorded health issues.
MSP Utilization Data. Multiple measures of MSP billings were taken at three-month intervals over five years (1992-1997) previous to and in the first year (1998) during the intervention. Using a comparison sample (Okanagan-Similkameen Health Region) and looking at historical data ensured that secular trends (historical differences) and other variables were accounted for. The CHR sample was also compared to the total CHR population as was the comparison sample to the larger population there. This meant that there were four groups for comparisons.
Data collected included MSP billings for General Practitioner office visits and non-urgent emergency room visits. These items were considered to be the ones that would most likely be initiated by the patient and would, therefore, include potentially avoidable services.
The health care diary:
Two pages from the diary are shown in Figure 1 below. Each diary provided space for 20 health issues to be recorded as well as space for any additional comments participants cared to make.
The first entry is the date and the type of the health issue that was a concern. The rest of the questions ask the participant to fill in where they seek help to deal with the problem and then finally to comment on how they felt about their ability to handle the health issue. Recall that the objectives were to increase knowledge of self care and increase confidence.
Figure 1:
The questions in the diary were designed to follow the sequence of events that might occur as a health issue arose to determine what strategies or activities participants engaged in to resolve their health issue. The purpose was to obtain in-depth information on the experience of the decision-making process and factors affecting health care behaviour. A letter was sent at six months reminding participants to record their health issues and that we would be arranging for the diaries to be analyzed at the end of the year.
At the beginning of January, 1999, a letter requesting the return of the health diary was sent to all the diary participants. Diaries returned by March 10th were analysed. Two researchers each analyzed half of the diaries separately. In addition, they both analyzed the same 40 diaries to test for inter-rater reliability (Kvale, 1996). Patton’s (1987) procedures for analysis of qualitative data were followed.
Diary Analysis:
On average, there were approximately 5 health issues recorded for each health diary that comprised the 812 health issues. In only 7 of the health diaries participants reported that they did not use the Healthwise Handbook, the Health Support Line, or the Wellness newsletter for any of their health issues. The other 146 participants used the Healthwise Handbook, the Health Support Line and the Wellness newsletter most or part of the time.
The participants reported using the Healthwise Handbook or the Health Support Line in 584 health issues. The Health Support Line was used by participants for only 35 health issues.
Use of the Healthwise Handbook:
Comments about the Healthwise Handbook were overwhelmingly positive. Participants reported that the Handbook made them feel more confident about handling their health issues, it informed their discussions with their doctors, and it provided a source of information about complementary strategies to help cope with difficult symptoms. Participants also reported using the Healthwise Handbook for making healthy lifestyle choices. In almost a third of the health issues participants found the information in the Handbook “excellent”and noted that the information played a significant role in how they made decisions about the health issue.
Comments about the Healthwise Handbook provided confirmation that the self-care knowledge intervention expanded the participants’ health care knowledge base, and that it enhanced the participants’ confidence and ability to make health care decisions appropriate in managing common health care problems. In addition, participants noted healthy lifestyle changes such as eating more nutritious meals, getting more exercise and being more involved in discussions with their doctor.
Some of the comments that supported this conclusion include:
“I might have gone to a clinic to check out the problem if I didn’t have the book” (Child’s fever).
“It was helpful to know what to talk to the doctor about in more detail”(Depression and sleep problems).
“The information was excellent. Just what I wanted to know” (Cold and cough).
“After reading, I knew what to expect”(wasp sting).
“I followed the advice and the situation resolved itself” (eye irritation).
“I liked the suggestions about home treatment and prevention. I appreciate not being told to take a pill” (Headaches).
“The information made sense and eased a lot of the anxiety I was having” (Flu shots).
“Based on finding the symptoms described exactly in the book, I decided to just wait and let my body heal itself” (Pain after a fall).
“Very good information. I’m glad to have this reference book especially when a health issue arises at night” (Child’s earache).
“The book was most useful. It helped me bridge the gap between self-help and calling the doctor” (Cold).
“I think this is an invaluable book and service. I always wished there was someone I could call, or somewhere I could look things up. I felt it wasn’t always necessary to go to a doctor” (Allergies).
“Being able to find the answer to my problem in the book really helped me to accept it without panicking. It’s a great comfort to be able to solve my problem without a doctor’s help” (Diarrhea).
Most frequent health issues:
Participants’ health issues most frequently concerned influenza and cold symptoms (about 85 health issues), skin complaints such as rashes and shingles (about 55 health issues), and back complaints (50 health issues). Other participants reported the ongoing management of longstanding health problems. Providing the means by which participants could record their own health issues resulted in insights into the most common types of complaints that might be the most amenable to self care. A more directed method of research such as a large quantitative study must necessarily start with what the researcher thinks are the most frequent symptoms, an approach presumably based on previous evidence of the frequency of these complaints from some other sample rather than the actual events as recorded by the participants, or, in the absence of such evidence the researcher’s best guess.
Examples of decisions about self care:
The health diary allowed us to witness through the reports the participants’ thinking and decision-making process, which of the resources were helpful to them and what difference being able to handle it themselves made to them. In Figure 2 an example of a diary entry is given:
Figure 2:
Health issue: eye irritation
What did you do first?: I checked the Healthwise Handbook
What did you do next?: I followed the advice in the Handbook.
Did you find information or get assistance form other resources?: no.
What did you do to resolve your health issue?:I read about the problem with my eye, followed the instructions and the situation went away by itself.
Overall, how do you feel about your ability to handle your health issue?: I was quite capable of handling it myself.
In the example in Figure 2 we see that the participant utilized the resource to self care and had a realization that she was capable of looking after her health issue without having to call a health professional.
In the following example in Figure 3 we have evidence of the anxieties that a mother with a sick child faces and the various steps she takes to reassure herself that she is doing the right thing for her child.
Figure 3:
Date: April 22
Health issue: Possible development of chicken pox in baby.
What did you do first?: Thought back to previous symptoms –cold, cough, fever, sleepy, wanting to be held, fussy. Started to watch for further development of spots (found 1 or 2 initially).
What did you do next?: Watched for more signs of spots. Gave warm bath. Watched for signs of fever, cold symptoms.
Did you use the health Handbook to read about your health issue?: Yes. Confirmed symptoms, helpful. April 23 reread the material and realized it didn’t give a description of “frequent vomiting”.