The prevailing organisational design of health care is guided by health professionals and determined by the biomedical characteristics of a disease and medical care required. Is it infectious? How frequently are medical check-ups desirable? Which medical equipment should be available? However, chronic diseases result in a “biological disruption” for patients, meaning that experiencing a chronic illness in everyday life has enormous impact and necessitates a process to incorporate such illness into life and identity, in terms of cognitive processes and practical response [5
]. In this process, the involvement of family and environment is indispensable. Recognizing this aspect means that optimal management of chronic diseases implies the adaptation of health care organisation to take into account this patient and environment perspective.
We designed a framework to analyse these four dimensions of chronic diseases: the biomedical or “disease dimension”, the “health provider dimension”, the patient or “person dimension” and the “environment dimension” ().
The “Chronic Dimension Framework” to describe four dimensions of chronic conditions.
This “Chronic Dimension Framework” can be used to analyse the characteristics of any CLLC, to be able to identify and clarify the needs for management and support taking into account the disease-inherent characteristics and the perspectives of actors involved. Although all dimensions are related to each other and influence each other, the model emphasises the views of each actor (patient, provider and people in the environment) as key variables on their own, not necessarily congruent with each other [21
]. We will shortly elaborate on them.
The disease dimension refers to the biomedical characteristics, inherent to a disease. Examples are the onset and the nature of progression-for instance the pace, level of (un)certainty and interpatient variability, the risk for acute fatal incidents, the physical changes, the risk of infection, and mode of transmission [22
]. The health provider dimension entails the professional involvement with patients and their disease. It raises questions such as: how complex is the treatment; who can provide the treatment; how often is patient contact necessary and what does it entail? What is the provider's point of view towards the patient and his/her disease [21
]? Are professionals of other disciplines involved? The person dimension involves the experience of patients themselves, their attitude towards their disease, their way of coping, and their own role in disease management. What is the role of self-management? What sort of life-style adjustments are desirable and possible? How much do patients suffer, physically and/or psychologically [23
]? The environment dimension relates to all actors (both personal and institutional) interacting with patients and potentially influencing their way of coping and their disease management. This starts from the inner circle of family and household members, but extends to the consequences for work and social life and to the role of stigma and how people feel depicted in society. We applied this framework to compare two increasingly prominent CLLCs in SSA, HIV/AIDS and DM2 ().
Comparing the chronicity dimensions of HIV AIDS and diabetes.
The disease dimension of DM2 and HIV/AIDS is that of a slowly progressive disease, which in advanced stages leads to increased morbidity affecting multiple organ systems, requiring different professional expertise. The threat of exposure to opportunistic infections such as meningitis and tuberculosis, especially in SSA, contributes to uncertainty about the progression of HIV/AIDS and a more pronounced premature mortality for HIV/AIDS than for diabetes, especially in absence of ART. DM2 usually shows a gradual progression, but entails a considerable risk of acute life-threatening incidents such as hypo- and hyperglycaemia. The most striking difference is the mode of transmission. Diabetes is a noncommunicable disease, with a hereditary component, triggered by life-style factors such as diet and physical exercise. HIV/AIDS is infectious and is transmitted through blood or venereal contact, its transmission being associated with behaviour and lifestyle aspects that increase the chance of infection. This diversity in risk factors and transmission necessitates different strategies at population and individual level to control the spread of disease. The risk of infection has a large impact on how the patient and his environment interact, which we will discuss under these dimensions.
From the health provider dimension, HIV/AIDS and DM2 are managed quite differently. Nowadays, first line treatment for HIV/AIDS is straightforward, comprising one or two tablets a day, although patients side-effects are still an important barrier to treatment adherence [24
]. Diabetes treatment is more complicated, in terms of the choice of treatment regimen, the combination of diet, tablets and sometimes insulin and the adjustment of treatment to variation in diet and exercise. Diabetes treatment can be standardised into flowcharts, but these involve multiple steps in decision-making and require some expertise and training to handle them correctly [25
]. The risk for an acute life-threatening incident requires the availability of 24-hour medical advice. These differences influence the feasibility of decentralising treatment beyond primary care level. For both DM2 and HIV/AIDS, the routine follow-up is periodic and involves mainly monitoring of treatment and disease progression. The crucial role of the professional health provider is to detect and manage complications. The overall management of both groups of patients entails, besides the medical tasks, a lot of counselling on how to live with the disease.
The person dimension is highly affected for both DM2 and HIV/AIDS, but in quite different ways. DM2 requires a lot of adjustments in the social spheres of life, such as changing diet, maintaining a daily routine, and reducing other cardiovascular risk factors such as smoking. People living with HIV/AIDS (PLWHA) might face less intrusive lifestyle adjustments, as they are merely related to avoiding risk behaviour, but they generally do experience a large psychological set-back from the diagnosis and its consequences. Whereas diabetes is considered a disease you deserve no blame for (and in some contexts even seen as a sign of wealth), PLWHA are confronted with stigma and this often leads to a great deal of psychological suffering. This stigma has many origins, like the association of infection with sexual contact in general, with particular behaviours considered risky and stigmatised in themselves (homosexuality, drug addiction, prostitution, or promiscuity), but also the lack of information or the fear for a potentially lethal disease [26
]. This stigma, the change in attitude of people towards PLHA, the ideas of PLHA themselves, and the real risk of infecting others with a potentially lethal disease leads to a lot of psychological distress and to an (implicit or explicit) barrier between the person affected and his/her environment [27
]. This barrier hinders the search for and finding of social and health service support [29
], and the result is that often necessary support is not found. Physical suffering usually comes in advanced stages for both groups of patients. The role of self-management in DM2 comprises life-style adjustments discussed above, monitoring of glucose levels and adaptation of medication, and recognition and management of acute danger signs. The “technical” tasks of self-management of HIV/AIDS are less complicated, focusing on intake of oral medication, coping with side-effects, and knowing what to do in case of interruption, and on the control of transmission. Whereas people with diabetes observe an immediate influence of their behaviour and subsequent glucose levels on their well-being, the signs of not taking medication for PLWHA arise more gradually but can be more ominous on the longer term, because of the development of virus resistance.
The environment dimension for people with DM2 and those with HIV/AIDS is greatly affected, especially the immediate circle of family life. Family members of DM2 patients encounter the changes in meal patterns and composition which usually affect the whole family or require the cooking of different meals, but they also learn to recognize acute signs of hypo-/hyperglycaemia and other complication symptoms. HIV/AIDS affects the sexual and affective relationships between partners, but possibly also with children. In families of both patient groups, concerns about access to treatment can have a large impact on the routine activities and other needs in the family. In a similar way, social life and work can be affected by the disease. As discussed above, the environment's perception of HIV/AIDS and DM2 is very different. The stigma of HIV/AIDS makes it difficult for PLWHA to share with others, but it can bring patients closer to each other [30
]. The still dominant perception of diabetes as a disease for the rich leads to a more individualised experience.
Our framework reveals that HIV/AIDS and DM2, at first sight very different diseases, also share some comparable characteristics in the health provider, person, and environment dimensions. The health provider dimension is crucial for the organisation of care, for example, the choice of the most appropriate platforms for delivering medical care, the need for a permanent service within reach, the involvement of other professionals, the possibilities for self-management, and the role of families. The person and environment dimensions determine the kind of adjustments, feasibility, and challenges when empowering patients and involving the family and others in helping the patient to manage his/her disease. Although the content of life-style adjustment and impact might be different, the experienced intensity of the disease, the processes involved in motivation, empowerment, and behavioural changes are similar. The comparison illustrates that it is useful to think about management of diabetes and HIV/AIDS in health systems in tandem, to compare care delivery platforms, strategies for self-management, and involvement of the environment. In the following section, we will look at the practice of care for both diseases, to see which lessons can be learnt.