Adjudications and tinkering with care for socially vulnerable patients with type 2 diabetes in general practice

Abstract

Objective

To analyse the mechanisms at play in the adjudications made by professionals and socially vulnerable patients with type 2 diabetes about their eligibility for care.

Design, setting and subjects

The study included 14 patients and 10 health professionals in seven general practice surgeries in deprived areas in Greater Copenhagen. The study data consist of 17 semi-structured interviews with patients and 22 with health professionals immediately after observation of 23 consultations. Our analytical approach was inspired by Systematic Text Condensation and the concept of ‘candidacy’ for access to health care.

Results

Adjudications of patients not being candidates for services were common, but we also found that both patients and health professionals worked to align the services to the needs of the patients. This could include using services differently than was intended by the providers or by changing routines to make it easier for patients to use the services. We discuss these processes as ‘tinkering’. This usually implies that the best individual solution for the patient is aimed for, and in this study, the best solution sometimes meant not focusing on diabetes.

Conclusion

The study adds to existing knowledge about access to services for socially vulnerable patients by demonstrating that both patients and professionals in general practice engage in tinkering processes to make services work.

KEY POINTS

Unequal use and benefits of health services play a significant role in relation to social inequality in health

• Flexibility in services and alternatives to school-like rehabilitation are needed to reduce inequality in access to health care

• Patients were sometimes judged as unsuitable for available routine services, but professionals ‘tinkered’ with services to make them fit

• Adaptation of services by professionals in general practice implies a longer time frame for obtaining goals

Keywords:

• Health inequities
• socioeconomic factors
• health services accessibility
• general practice
• family practice
• candidacy
• tinkering

Background

Unequal use of and benefits of health services play a significant role in relation to social inequality in health and the social consequences of illness [1,2]. Patients in deprived areas are less satisfied with access to general practice [3] and in a recent Danish study by Tapager et al. [4], inequalities in opportunity to access health services were associated with several indicators of disadvantage. Worries about social, work-related or financial problems often hinder adequate self-care and treatment in patients who are long-term unemployed, homeless or addicts [5]. Compared to citizens who are employed, the percentage of citizens with diabetes is twice as high among the long-term sick and five times higher among pensioners and people on disability benefit [2]. Patients with type 2 diabetes in the lowest socioeconomic position have poorer glycaemic control and more chronic complications [6].

Although Danish patients with diabetes with little or no education have more contacts with general practice than those with more education [7], a selection in the referral to rehabilitation services can be observed, and the group of more vulnerable patients does not seem to benefit sufficiently from the services [8]. Most diabetes care in Denmark, together with the management of other chronic diseases, takes place in general practice. General practices form part of the disease management programmes for type 2 diabetes inspired by the Chronic Care Model. The disease management programmes describe the general practitioner (GP) as responsible for the stratification of patients according to disease severity and need for self-care support [9]. Patients with poor disease regulation should be stratified to treatment in secondary care, and patients who have difficulties with self-care should receive self-care support provided by the municipalities. Like the Chronic Care Model, the disease management programmes promote the informed and active patient. However, there is a lack of knowledge of the specific mechanisms at play in the meeting between the patient and the healthcare system when patients, despite gaining physical access, do not benefit equally [10].

A review finds that access to and use of the healthcare system are conditional on the current resources of the individual patient, which are brought out in interactions between both the contextual conditions of the individual and the conditions that influence which services are available in communities. Peoples’ eligibility for medical attention and intervention are jointly negotiated between individuals and health services and can be conceptualized as ‘candidacy’ [11]. ‘Candidacy’ depends on patients’ identification of themselves as in need of health care, on their practical resources for navigating health care, and the ease with which people can use the services. It also depends on the ability to articulate the issue for which help is sought and present credibly, on patients’ resistance to offers of services, and on local influences such as the availability of specific resources in a setting. In this framework health professionals’ judgements and decisions which support or inhibit candidacy are addressed as adjudications; when the possibilities presented by individual patients and the routinely available means are compared, some patients are considered less eligible.

In this study we focus on the mechanisms at play in the adjudications made by professionals and socially vulnerable patients’ with type 2 diabetes about their eligibility for care.

Methods

Setting

General practice in Denmark is part of a public healthcare system financed through taxes and free at the point of access. GPs act as gatekeepers to the rest of the healthcare system. According to disease management programmes diabetes care implies at least one yearly check-up for all patients, but the number of consultations can be as many as four per year [9].

We invited general practice surgeries in Greater Copenhagen listed at www.sundhed.dk in alphabetical order. The researchers approached the surgeries by email and telephone. Variation in experience and gender was sought. The uptake areas for the present study are characterized by a relatively high percentage of people with low education and low income and are characterized as being ‘very deprived’ regarding housing and other socioeconomic factors [12]. Danish-speaking patients were recruited by the professionals when they were scheduled for follow-up.

Participants

The study included a total of 14 patients (10 male and 4 female, aged 29-72 years) and 10 healthcare professionals (6 GPs, 2 nurses, 1 medical student and 1 nursing assistant) in seven general practice surgeries in Greater Copenhagen. See Table 1 for characteristics of professionals. Of the participating patients six had no formal education beyond Danish primary school (9-10 years), seven had shorter vocational training and one had medium-term higher education. Five patients were unemployed and four were working. Four patients were retired. One patient was on sick leave at the time of the interviews. Characteristics of the patients are shown in Table 2.

Table 1. Health professionals.

Pseudonyme	Profession	Years in practice/ since licence	Age (years)	Gender (M/F)	Number of interviews
Craig	GP	8	44	M	3
Deborah	GP	1	37	F	1
John	GP	40	72	M	1
Edward	GP	2	40	M	4
Gabrielle	GP	23	60	F	2
Gregory	GP	41	72	M	2
Susan	Nurse	40	71	F	4
Linda	Nurse	10	53	F	2
Tamara	Medical student	1 ½	25	F	1
Laura	Nursing assistant	4	32	F	2

Table 2. Patients.

Pseudonym	Age	Gender (M/F)	Occupation	Vocational education	Number of interviews
Andrew	62	M	Unemployed	Care assistant	2
Jack	72	M	Retirement pension	None/semi-skilled worker	1
Hammad	47	M	Factory worker	None	1
Nancy	65	F	Retirement pension	Basic	2
Johnny	60	M	Working	Basic	2
Peggy	67	F	On sick leave	State school teacher	1
David	29	M	Working	None	1
Patricia	67	F	Retirement pension	None/semi-skilled worker	1
Jimmy	35	M	Working	Basic	2
Daniel	30	M	Unemployed	Basic	0*
Kevin	53	M	Unemployed	Basic	1
Donna	72	F	Retirement pension	Basic	2
Mark	53	M	Unemployed	None	0*
Mirko	51	M	Unemployed	None/semi-skilled worker	1

*Patients did not respond when we contacted them for interviews after consultation/s.

Design and data collection

The study data consist of 17 interviews with patients and 22 interviews with health professionals based on the observation of 23 consultations. Three interviews with professionals concerned consultations with patients who did not respond when we contacted them for interviews after the consultation. Analysis of the consultations will be reported in another article. Data were collected from August 2017 to July 2018.

Interviews with the patients took place in the patient’s home or in a separate room at the surgery. The interviews were face-to-face and carried out by the first and second authors. A semi-structured interview guide was used. Questions were developed from the existing research literature with an emphasis on the concept of ‘candidacy’. Patients were asked questions about the content of the consultation and their benefit from it, about navigation in and access to the healthcare system and about their own experience of their benefit from different offers of care for their diabetes. Health professionals were interviewed about the purpose and the content of the consultation, about what care the patient had been offered and their expectations as to how the patient would manage to comply. Interviews with professionals took place in separate rooms in the surgery.

Interviews with the health professionals were done immediately after the consultations and lasted as long as the GP’s schedule allowed, that is, between 8 and 41 min. The interviews with the patients lasted from 20 to 64 min. The interviews were recorded and transcribed verbatim.

Analysis

Our analytical approach was inspired by Systematic Text Condensation (STC) as described by Malterud [13]. This method was chosen because it aims to express the experiences of the participants as presented by themselves, rather than examining the underlying meaning. After establishing code groups by STC we did a second order analysis of access inspired by dimensions of ‘candidacy’ [11] and explored theory which could develop this analysis further. Adjudications of patients’ eligibility – judging patients to be unsuitable as candidates for available routine services – as described by Dixon-Woods et al. [11] were abundant in our data, along with measures to make services fit individual patients. The notion of ‘tinkering’ [14] was included in order to understand the efforts of the professionals to adjust the healthcare system’s routines. ‘Tinkering’ also helped to analyse the different ways in which patients used the services they were offered. Definitions of code groups changed during the process according to the emerging analysis: new subgroups were developed, and additional code groups were added. When inconsistencies occurred in the coding or when making code groups, decisions were justified on the basis of data and the researchers found consensus by discussion [15]. Information power was obtained because we were experienced interviewers who established good contact with most informants, the experiences and properties of the sample of patients and GPs were relevant to the aim of the study and demonstrated variation, and because the analysis was informed by theory [16].

Theory

Anne Marie Mol has followed patients with diabetes in out-patient treatment and describes how their treatment cannot be implemented according to medical ideals [14]. In order to make treatment work in practice there is a need for experimentation, special arrangements and adaptations to fit specific situations to make them helpful in individual contexts. She refers to this process as ‘tinkering’. ‘Tinkering’ is about arrangements that work. It is a continuous process carried out in collaboration between patients and professionals. Treatment goals are not initially fixed, but rather established during the process. When some measures are not carried out, it can very well be due to complexity and practicalities. It follows that non-compliance in this perspective is more complex than merely a matter of choice.

Ethics

Informed consent was obtained from all participants. Patients were reassured that participation was entirely voluntary and would not have any consequences for their treatment and that they could withdraw from the study at any time. Participants were guaranteed anonymity in the presentation of the findings. The study was approved by the Danish Data Protection Agency and according to Danish Research guidelines no further approval is required for qualitative studies. Management of the data comply with GDPR.

Results

Issues of adjudication where services were judged not to fit patients were common, but we also found that both patients and health professionals worked to align the services to the needs of the patients. This could include using services differently than was intended by the providers or by changing routines to make it easier for patients to use the services. We discuss these processes as ‘tinkering’. This usually implies that the best individual solution for the patient is aimed for, and in this study, the best solution sometimes meant not focusing on diabetes.

Adjudications of patients’ candidacy for routine services

Patients’ perspectives

Many patients assessed healthcare services positively and said that these provided the knowledge of the illness that they needed and an understanding of how they could change their situation by adjusting their health behaviour. On the other hand, many felt that they were not a good match for the standard solutions of the services, or did not feel qualified or suited. Examples included both formal healthcare, such as municipal exercise classes or diabetes school, and daily routines such as medication schedules and diet at home. Andrew, an unemployed 62-year-old man, who was a heavy drinker and who had been depressed for some time after the loss of a younger family member, explained why he did not attend the municipality’s services:

”Despite knowing that the courses they offer can make you feel better (…) I have given it some thought and I … as I said to Linda [general practice nurse], it depends on the mood I’m in, right. It changes a lot. So making a lot of fixed appointments, damn, that’s difficult (…) like attending exercise classes two or three times a week, well, you might not be up to it when the day comes (…) And then if you missed one day, it might be difficult to get going next time.”

The experience and the adjudication of not fitting in and not fulfilling the expectations and demands in diabetes care had different meanings and consequences for patients. Some reacted by resisting and others blamed themselves and were ashamed of not even being able to implement and comply with small changes and demands in their everyday life.

Professionals’ perspectives

Professionals sometimes made adjudications about patients’ reduced likelihood of achieving good diabetes control by changes in health behaviour. Such adjudications could come about e.g. if the patient’s diet was entirely different from the ideal type 2 diabetes recommendations and would require very significant changes to make it matter. In some cases, the professionals considered the patient’s approach a barrier to progress, such as when patients saw changes as prohibitions, when they did not truly engage or when they did not have any ambition or goals for their diabetes for the professional to work with. Gabrielle, an experienced general practitioner, said about an older patient whose diet she had almost given up on:

”Well, he has a certain way of approaching the services he is offered in the healthcare system. On the one hand he really does his duty, you can be sure he will take his medication, he will be showing up for appointments. But that he should contribute something himself, it seems like… Somehow it seems that he knows, but then at the same time he doesn’t really.”

She felt that he would gain only very limited benefit from standard care for type 2 diabetes and the recommended activities because he behaved as a passive recipient of care.

The health professionals in general practice also experienced that the municipal healthcare services did not always fit the patient’s everyday life or were located too far from where the patients who needed them lived. Furthermore, classes and courses were suitable for some patients but not for all. Gregory, a GP with considerable experience of working in a socioeconomically deprived area explained it like this:

“Generally speaking the concept of school is not f*cking popular among adults in this neighbourhood. To put it straight, they don’t want to go to school if they can avoid it. As long as everything is fine and they don’t stumble they don’t need anybody who teaches them big models. (…) Many of the inhabitants here did not have a positive relationship with school, socially. No, they didn’t. They want to keep it personal. And they want to be in charge as much as possible. (…) They don’t want to give up their autonomy to these controllers. They see them as such.”

The GPs felt that it was problematic when the rehabilitation offered to their patients by the municipalities was based on a school concept. This way of learning would scare off many patients.

Tinkering with services to make them fit patients

‘Candidacy’ suggests that a lack of alignment between the priorities and competencies of disadvantaged people and the organization of health services reduces access to and benefits from health care for disadvantaged people. As demonstrated above this also seemed to be the case in our study. However, we also found that both patients and professionals worked on existing services to make them fit individual patients or that they used them in other ways than intended by the system: they ‘tinkered’ with health care.

Patients’ perspectives

Patients tinkered with health care because they wanted to do something but the services or schemes for different reasons did not work for them. They did not act exactly as recommended but did something similar or something else. Such tinkering could be due to lack of time, significant daily routines, lack of energy or because the services did not match the patient’s priorities and competencies (e.g. dining out instead of cooking diabetes-friendly meals, taking medications whenever possible). Hammad, who was in his forties, had not been able to attend the rehabilitation offered by the local hospital because of his working hours at a factory. He now did some exercise at work in the morning:

“So I work out about 20-25 minutes even though I think I’m too old for…weight lifting, but I do. I’m all alone. Nobody sees it so I scream and yell there at 6am. There is nobody to hear it (…) After an hour I’m done and I go down to shower and then my work starts (…) The only thing is, I have to get up a little early, but that’s alright.”

Attending services offered by the municipalities was also difficult to fit around working hours.

In other cases, patients tinkered with their habits and routines to comply with self-care, but sometimes dropped out of medication regimes. Jimmy, who worked in home care, explained that limited access to toilets during working days was one of the reasons why he did not take his medication:

”The problem is that I drive around in the city. I would need an office for… or something else where I can work in an office so I can use the bathroom whenever I want. I might also use it at Mrs. Whoever it is but among several reasons why I don’t, I don’t think it’s appropriate.”

Diarrhoea is a common side effect of treatment with the antidiabetic metformin and makes availability of toilets important. Dropping out was a conscious choice for some; for others it was due to lack of energy and resources.

Professionals’ perspectives

A patients’ financial situation was a factor that could make tinkering necessary. One GP said that he would ask his patients if the price of the medication was important to them; then, together with the patient, he would select a less expensive medication, even though it might be a less suitable choice in terms of quality. Tinkering also happened when patients could not afford to go to a chiropodist. Professionals in general practice offered to check patients’ feet, even though such a service is not covered by the disease management programme and general practice does not receive a fee for it. Linda, a nurse with some experience of working in a diabetes outpatient clinic before moving to general practice, said:

”Those who do not attend a chiropodist – and we have a lot of them, because it’s also about money. We aren’t doing chiropodist work, obviously we are not chiropodists, but we do check the pulse of their feet and if they have any ulcers or pressure marks and check their sense of touch.”

Likewise, some patients were offered an extra consultation in general practice concerning diet if they did not attend the municipal services of dietary advice and the professionals could not convince them to go.

Professionals also tinkered with care by disposing of it variably over time. Information was given at the patient’s pace to make it possible for the patient to follow, and smaller changes that patients could make to live well with diabetes were suggested if they felt overwhelmed. Edward, a GP for some years, explained it like this:

”We aim at treating them with an eye for the individual. Too many defeats, then they don’t want to come back. Then they will have to show up to be scolded and a bad conscience and… In the end they usually show up and make slow but steady progress.”

The GPs strove to align expectations and to make sure that the patient understood and knew that the GP meant well. A GP put “the numbers aside” to avoid stressing the patient and focused instead on making the patient engage in changes to their health behaviour.

The professionals said that factors like young age, high intelligence, a certain level of education and a patient’s previous success with making changes made them raise their expectations for what could be achieved within the nearest future. There were also, however, patients who surprised them with their ambition and energy and many professionals felt that they should always have some expectations for the patients’ diabetes care. Susan, a very experienced nurse, put it this way:

“My impression of Nancy is that she needs someone behind her. Then I have expectations for her because nobody else has. So that’s why, as long as I can, I try to push her…”

The professionals felt that many patients benefit from the services offered for diabetes in general practice and were successfully managing their diabetes. However, for some patients the value of attending general practice from the perspective of the professionals is smaller or different.

It could be a goal in itself to stay in contact with the patient and to strengthen the relationship. The agenda of planned follow-up of diabetes could change if patients brought pressing issues which were more important to them and by addressing these issues, the professionals built an alliance with the patient. Referrals to rehabilitation programmes could also be postponed if a patient’s situation urgently demanded attention to something else first.

Discussion

Statement of principal findings

We found several mechanisms by which social inequality plays out in the encounter between general practice professionals and patients with type 2 diabetes. The support of self-care and rehabilitation offered by the municipalities was judged not to be useful for all patients. For some the lack of flexibility in working hours made it difficult to attend, for others the school-like concept did not work. When services did not fit patients, they did not do exactly as recommended, but many of them did something similar or something else. In general practice patients were in some cases judged as unfit for services, but services were also tinkered with to make them fit individual patients’ situations and sometimes additional services were offered. Professionals in general practice worked within a longer time frame for some patients to achieve goals. Fitting care to patients meant that information and changes were introduced in smaller amounts and at a lower pace. Postponing diabetes follow-up when the patient’s situation urgently demanded attention to something else could be seen as needed to build an alliance and stay in contact with the patient.

Strengths and weaknesses of the study

By recruiting surgeries in deprived areas of Greater Copenhagen we obtained a sample of patients with variation in aspects of social vulnerability. Interviewing patients after observing their consultations made it possible to establish good contact with a group of patients, who can otherwise be difficult to reach in research. The health professionals may represent a group with a particular interest in socially vulnerable patients and some continued working in deprived areas beyond age of retirement. This may imply that the findings could be a best case scenario regarding engagement in socially vulnerable patients’ treatment in general practice.

Interviews were done by the first and second author, who are both experienced qualitative researchers and health professionals. This made the access to practice easier; on the other hand, it could mean that some aspects of data were taken for granted. Analysis was, however, done in an interdisciplinary group, bringing different perspectives to the analysis.

Patients were recruited consecutively, which resulted in more men than women in the study. This could reflect that more men than women are registered with type 2 diabetes [17], but other studies show that men visit general practice less [18]. It seems that neither epidemiology nor patterns of use can explain this difference. Both men and women are, however, represented in this study.

The findings are likely to be transferable to other healthcare systems based on the Chronic Care Model. The Municipality of Copenhagen, where many of the participating patients lived, has a specialised center for diabetes, but patients can also attend exercise classes and other rehabilitation activities at local municipal centres for prevention. The analysis thus covers both specialised rehabilitation services and more general services.

Findings in relation to other studies

Our study demonstrated that patients are not necessarily deprived of care when they are not a good match for the services. While this is the only consequence of adjudications made by professionals considered in the framework of candidacy [11], our study showed that care is also tinkered with. Tinkering means that patients do receive some care, even when they are judged not to be a good match for the services.

We also demonstrated that adjudications about patients’ eligibility for care are not only made by professionals but also by the patients themselves. Tinkering is described by Mol [14] as cooperation between professional and patient. However, in our study we also see that patients tinker on their own. Tinkering might be considered a variation of the active and informed patient welcomed by the disease management programmes, but the professionals do not always know about, or get the chance to counsel patients on, the tinkering they do. The professionals’ desire for development and improvement of therapeutic alliances seems to be relevant if open discussion of tinkering that patients do on their own is to take place.

The general practice professionals in our study did not always make referrals to municipal support when patients’ self-care was limited. Sometimes it was postponed, sometimes the organization of support of self-care did not fit the patient’s inflexible working hours or patients’ had bad experiences with school-like concepts. Disease management programmes specify when referrals should be made to support self-care (stratification) [9]. An interview study with GPs serving a disadvantaged, rural population in Denmark found that GPs disregarded criteria for the stratification of patients with type 2 diabetes suffering from more chronic conditions and with lowered self-care ability, as the criteria did not reflect the patients’ needs [19]. GPs felt that flexible referral options were missing, and the services offered were not adequate for patients. The tinkering done by professionals and patients in our study compensate for the lack of flexibility in disease management programmes. Our study thus highlights the importance of flexibility in (the use of) services to reduce inequality in health. Mol, [14] who did fieldwork in Dutch ambulatory care for patients with type 2 diabetes, maintains that treatment regimens cannot be implemented but have to be experimented with. This also seems to be the case for treatment in General Practice in Denmark.

Professionals in our study dispensed information over more consultations for some patients and introduced changes in smaller steps. Individual goal setting is part of the current disease management programmes of type 2 diabetes [20] and is safe in lowering the risk of diabetes complications [21].

Following our findings, access to and benefits of health services for socially vulnerable patients might be improved when alternatives to the school-like services for the support of self-care is provided. This is in accordance with the findings of Schwennesen et al. [22] who explored reasons for non-attendance to self-management education of patients with type 2 diabetes and found that the school concept was discouraging for the most vulnerable. Adding action-oriented activities to standard cardiac rehabilitation, along with additional consultations with both nurses and GPs, has proven effective in improving the benefit of rehabilitation for socially vulnerable patients. Those being offered extended rehabilitation achieved significantly higher participation rates and they also had lower levels of cholesterol, systolic blood pressure and body mass index and a higher level of compliance with medication [23]. The findings in our study could illustrate mechanisms behind such benefit.

Our findings indicate that access and benefit could be improved if tinkering were supported. The tinkering done by general practice professionals is improvised and something extra is offered. This adds to the services for socially vulnerable patients and also accommodates other, individual differences between patients in general practice. Giving such activities professional attention could strengthen their status and make them appear deserving of financial support. Some problems in our study could not be solved by the healthcare system. Medication regimes failing to fit within working conditions is a prominent example. Making changes in other settings than the healthcare system would be needed to address such issues.

Meaning of the study

This study demonstrated mechanisms of social inequality in access to health care in general practice for patients with type 2 diabetes. Our study and the inclusion of the concept of tinkering offer some explanation as to what is going on in the encounter between patient and GP and adds nuances in the interpretation of the existing inequalities. While the study supports the findings from previous studies that professionals make adjudications about patients’ eligibility, it also adds that both patients and professionals in general practice engage in tinkering processes to make services work.

Acknowledgements

The authors would like to thank the patients and the health professionals who kindly participated in the study. They would also like to thank Tværspuljen- Region Hovedstaden, The Vissing Foundation, Læge Sofus Carl Emil Friis og Hustru Olga Friis’ Legat, Praktiserende Lægers Uddannelses- og Udviklingsfond (Danish College of General Practitioners), and the Committee of Multipractice Studies in General Practice for financial support.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Tværspuljen- Region Hovedstaden, The Vissing Foundation, Læge Sofus Carl Emil Friis og Hustru Olga Friis’ Legat, Praktiserende Lægers Uddannelses- og Udviklingsfond (Danish College of General Practitioners)