Data Analysis
The age of participants ranged from 30-88 years. Household income ranged from $800-$8,000 per month, whereas household size ranged from 1-6 persons. Healthcare coverage included Medicaid and Medicare (n = 10), private insurance (n = 7) or no insurance (n = 5). Notably, some participants had both Medicare and private insurance, usually a Medigap policy.
Transcribed narrative data were entered into QSR International׳s NVivo 8
17NVivo qualitative data analysis software. Burlington, MA: QSR International (Americas) Inc.Version 8, 2008.
software for analysis and coded by one of the authors. Schatzman׳s
9Dimensional analysis: notes on an alternative approach to the grounding of theory in qualitative research.
dimensional analysis method was used to analyze interview data. This method entails coding by designating dimensions of attributes by descriptive phrases. In an attempt to capture all that was happening, many phrases were designated with codes until a collection of coding appeared saturated with dimensions. For example, under the problem leading to ED use, participants related dimensions of loss—loss of consciousness, loss of sight, loss of a favorite doctor and loss of access to primary care. Access codes also included a range of dimensions from access by transportation to access affected by attitudes toward providers. Dimensions of primary care access and services included waiting for an appointment, waiting in the office, missing appointments, lacking a consistent doctor and being told to go to ED by a physician. The resulting mass of data included some redundancy and less relevant themes that were subsumed in other dimensions or considered later. Themes were differentiated into categories and configured into a framework, or explanatory matrix that provided structure for the narrative explanation of the overarching perspective of contested ownership (
Table).
TABLEExplanatory matrix: overarching perspective of contested ownership.
One overarching theme provided a perspective that organized the placement of other dimensions giving the narrative a framework. Interpretation of what is happening is dependent on the perspective and attention must be given to its selection. The selection of the overarching perspective evolved after trying many dimensions from the framework for an explanation in the narrative. For example, primary care access and service issues were tried as the overarching perspective but having access did not explain the social network support used to make decisions about self-management. Constancy explained only those who were dealing with problems but not controlling them. Eventually, the concept of contested ownership emerged as a standpoint where the disease was positioned as either central to one׳s identity or a constant external threat to be dealt with. These 2 competing standpoints were chosen to integrate the remainder of the components into a narrative for explaining ambulatory-sensitive ED visits by the study population. The context, conditions, processes and consequences that emerged from participant accounts reflected how decision-making vacillated, or were actively contested between these perspectives of disease ownership.
Report of Findings
The explanatory framework (
Table) provides structure to the narrative guided by the one perspective antecedent to all other possible explanations, as the tradition of dimensional analysis recommends.
9Dimensional analysis: notes on an alternative approach to the grounding of theory in qualitative research.
Thus, the narrative explains what is happening for each case, including the negative cases and outliers within that context. The framework of context, conditions, processes and consequences provides a key for understanding the themes of the story embedded in the descriptive narratives.
9Dimensional analysis: notes on an alternative approach to the grounding of theory in qualitative research.
Overarching Perspective: Contested Ownership of Diabetes
Contested ownership of disease was the one idea that explained the narrative of “doing what I got to do,” and guided what was happening in the decision to use the ED. Of all the ways to look at the narrative, this one perspective frames a story that supports all identified conditions for each case in which the person with diabetes must make decisions. Ownership was acknowledged by participants׳ accounts of always being mindful of diabetes, though in differing ways. “It׳s always on my mind, wanting, wishing not to be a diabetic” (Participant 6, woman). “It׳s a constant burden, affects every aspect of my life” (Participant 8, woman). As part of the competing standpoints, constancy of ownership (dealing with it) is defined as living with an awareness that problems might not be predicted nor always prevented but they are expected and external “. . . ‘cause you never know when it׳s gonna come on you’…” (Participant 3, woman). Centrality of ownership is defined as acknowledging responsibility by “handling it” as part of a lived, owned identity. Handling involves taking decisions into your hands and at that moment handling them as responsibly as possible. If ownership is not acknowledged as a central focus, constancy of disease processes results in the need for “dealing with” a difficult situation.
Context of Ownership
The context of perceived urgency of symptoms includes all the reasons that precipitated the most recent ED visit. Perceived urgency was felt when participants experienced slurred speech, vision loss, high or low blood sugar level or unfamiliar symptoms. Some participants admitted their neglect precipitated the emergency. Other symptoms were urgent but not life threatening, such as complications from dialysis, asthma and vision loss. Some symptoms were vague, such as shaking, dizziness or an unusual feeling. These were distressing because they were new or recurring symptoms not responding to usual care. A few participants were told by healthcare providers to go to the ED if their “sugar” level was high or low, but they were not given any parameters for determining high or low. Patients on dialysis did not have definitive symptoms but they knew “something was wrong.”
Conditions of Ownership
Personal experience, primary care access and services and social network support for decisions were designated conditions influencing ownership. Conditions are salient dimensions that facilitate, block or shape action or interaction.
9Dimensional analysis: notes on an alternative approach to the grounding of theory in qualitative research.
, 10- Kools S.
- McCarthy M.
- Durham R.
- et al.
Dimensional analysis: broadening the conception of grounded theory.
These conditions included the personal experience of living with diabetes, access to healthcare services in the community and the support patients received from people in their home, social network and community in making the decision to use the ED. From the participants׳ perspectives, reasons for going to the ED focused solely on their symptoms—hypoglycemia, dizziness, stroke symptoms, dehydration, ketoacidosis, abscesses, wound complications, vision problems, respiratory problems, cardiac symptoms, gastrointestinal problems and loss of consciousness. Personal experience influenced knowing and doing.
Personal experiences of knowing included cognitive processing of symptoms: knowing what to do, knowing what was wrong, knowing signs of problems, knowing your body, knowing yourself, knowing by listening to your body and not knowing anything. Another dimension of personal experience was learning how to manage diabetes—how to eat, how to cheat, how to do the right things and learning the hard way. Personal experience also included beliefs and feelings. One participant believed that everyone had some amount of diabetes, some worse than others. Emotional processing included feelings of anger, fear, frustration, regret, worry and unhappiness; and feelings that were up and down “like a rollercoaster.” (Participant 2, woman). Some said, “It׳s hard, it׳s so very hard” (Participant 1, man) expressing emotions of depression, burden and resignation.
Behavior or doing what they knew to do was another dimension of personal experience and included habits, routines, asking for information and watching for signs. Neglectful behaviors were admitted. Participants sometimes neglected to eat as they should. They neglected to take their medicine, or to get prescriptions refilled. They did not check their blood sugars or buy their monitoring supplies. Some missed scheduled medical appointments. Routines were also significant dimensions of the experience as they tried to do what they normally did, such as attend church and take the children to school, despite feeling something was wrong.
Primary care access and services included transportation barriers. Some were unable to get medications refilled because they could not get to their appointment to obtain a prescription renewal and the physician would not approve a refill without a primary care visit. Affordability of the doctor visit, prescriptions, lancets, monitoring strips and even orange juice for hypoglycemia were all recurring issues. Lack of insurance or co-payment affected ability to get medicine in a timely way. Some who had access, however, chose not to take their medication. “I the one made the decision; I the one who decided to stop taking the medicine.” (Participant 1, man).
Acceptability, an access factor, included attitudes toward providers who did not answer questions or explain problems. Thoroughness at the visit was important to participants who noted whether their vital signs were taken, laboratory tests were done and feet examined. Some participants disliked hospitals, saying, “I was treated like cattle, with disrespect and no regard for protecting privacy” (Participant 19, man). Others disliked going to the doctor׳s office because of long waits or seeing a different doctor each time.
Support in making the decision to go to the ED was provided by friends and relatives who accompanied participants. One woman had symptoms of blurred vision and urinary frequency. When she almost passed out, her husband insisted that he take her to the ED. The wife of another participant strongly urged him to go because of swelling around his recent amputation. Family members and coworkers provided strong encouragement in 2 instances of impending “stroke symptoms.” Examples of nonfamily support included a nurse and a doctor. In one case, the usual physician instructed the patient to go to the ED because no appointment time was available. In another case, a police officer accompanied 1 participant to the ED after she was stopped for unsafe driving. The importance of support was captured by Participant 1 (man) who said “if you ain׳t got the understanding of what to do for yourself, and you ain׳t got nobody to tell you, who can just guide you along the way and tell you must do this, then diabetes will knock you off your feet quick.”
Processes of Ownership
Processes were either central or constant. When the overarching perspective of ownership was central, the participant was “handling it.” When the perspective was constant, the participant was “dealing with it.” Handling it involved management through adherence to diet, medication, exercise and weight control. Knowing what to do was a dimension of personal experience (condition) and influenced, but did not determine, the action taken. Doing “what you got to do” was not always “doing what you know to do.” The perspective of ownership for each standpoint could vacillate or be contested between managing well and not managing well because each participant made an ambulatory-sensitive ED visit. Those who internalized ownership as central at the time admitted their responsibility to handle their disease better to avoid future emergencies. Those who externalized their ownership denied responsibility and dealt with the experience by fighting back.
The dimensions of centrality of ownership were awareness, anticipation and assurance. Being aware of symptoms by listening to your body and paying attention to the doctor׳s instructions fostered more vigilance. Anticipation promoted saving to pay for needed medication, to have candy available for low blood sugar, to drink enough water and to anticipate insulin needs for carbohydrate intake. Assurance was demonstrated as keeping things under control. Comments of centrality of ownership included the following: “Listen to yourself, there׳s always a voice inside of you” (Participant 9, man). “I have to live with it and I׳m willing to control it” (Participant 9, man). Ownership was expressed by one who said, “This is the number 1 killer for Black Americans and I׳m one of them that׳s listed in there and I don׳t want to see my name on that list (Participant 9, man). Owning, rather than being owned by diabetes, suggested responsibility to “pay attention to this thing,” and “live productive and take your medicine” (Participant 6, woman).
Dimensions of ownership as constancy included blame, dependence, resignation and struggle. Resignation was expressed as being stuck with diabetes. Ownership sometimes included taking responsibility for neglect. “I know I caused the problem by not doing the stuff I needed to do” (Participant 4, man). Constancy of ownership was expressed as blaming self or others for the disease or the ability to self-manage. A participant blamed providers for not notifying her of an abnormal laboratory value: “They should׳a let me know, I would׳na have to go on that needle” (Participant 5, woman). Another blamed friends: “ . . . ‘cause some of your friends bring on the problems and they bring the same problem back to you, your drinking friends’…” (Participant 4, man). Being owned by the illness was expressed as trying to beat it. The fight analogy was suggested by participants׳ comments such as, “I don׳t wanna die, not this way if I can beat the complications” (Participant 1, man). Many participants used words about fighting and conflict to describe dealing with their illness.
Consequences of Ownership
Processes of ownership lead to the consequences of either handling or dealing with the disease to be a regular person. A participant who was blind said, “I don׳t let it slow me down. I still do my normal activity” (Participant 18, man). Others had difficulty completing old routines, saying, “It is extremely life altering” (Participant 19, man). One person described life with disease as sometimes normal: “I don׳t have it sometime ‘cause you just . . . same regular person’ . . . ” (Participant 18, man). Furthermore, 1 participant seemed to capture the idea of having disease yet being a regular person saying, “The thing is you got to stop doing is the stuff you need to stop doing anyway to keep healthy” (Participant 4, man).