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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester

Quality, accessibility and coordination of health care in Norway for people with chronic illnesses - seen from the users point of view

Awarded: NOK 4.5 mill.

Medical uncertainties - understood as a situation of lack of accurate medical knowledge about causes; diagnosis; treatments and / or prognosis of diseases - applies to all clinical medical practice. For some conditions, the degree of uncertainty is particularly large. Although modern biomedicine has revolutionised the possibilities to diagnose and treat more diseases, health services strive to provide services of good quality to the increasing number of people who have chronic diseases that are difficult to explain, diagnose and treat. The main purpose of the study was to increase our knowledge about the quality of the Norwegian public health services to people with chronic rare diseases associated with a high degree of medical uncertainty, seen in a patient's perspective. The study also aimed to explore the interaction between doctor and patient in clinical consultations, identify what parts of the health services for the chronically ill should be improved, identify factors that prevent good quality, and increase our understanding of how to achieve these improvements. The study also explores how people with medically unexplained conditions, particularly people with chronic fatigue, experience living with the disease, and how they perceive the quality of health services. The data include both qualitative and quantitative data and methods, including a survey and a bio-photographic study, and the results are published mainly in international journals. The different data-sources contribute with different knowledge, all contributing to the same long-term and overall goal: to increase the quality of service offered to these patient groups. One of the main findings in the quantitative part of the study is that the degree of satisfaction with health services was lower in this group of patients than is usually seen in satisfaction studies in the general population. Due to the low proportion of men, the analyses were performed only on women in the material. Many women were particularly dissatisfied with the health care just after the outbreak of their illness, for example, over half of the respondents (54%) were rarely or not at all satisfied with health care services received in this initial phase. A particularly high degree of dissatisfaction was shown in relation to not being taken seriously, where almost half of the respondents (46%) expressed dissatisfaction. Over time, many find a GP that they collaborate better with. Important factors that seem to contribute to increased patient satisfaction is relational aspects between patient and health care, especially continuity, convergence of disease understanding between patient and health care provider, and the provision of specialist services. For example, the probability of being satisfied in the initial phase were more than six times higher for women who were referred to a specialist, compared with those who were not. The findings from the quantitative study are supported and elaborated by the qualitative part. Many patients with medically unexplained chronic fatigue experience medical consultations as very straining and riddled by conflicts. As patients they experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgement of patients experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. We argue that when physical symptoms cannot be detected, explained and managed by biomedical knowledge and technology, good doctor-patient partnerships are crucial. Without clearly acknowledging patients perspectives and capabilities in clinical practice, such partnerships cannot be achieved. According to the participants in our study - help-seeking people with medically unexplained long-term fatigue - professional caregivers ought to: (1) acknowledge the lack of medical knowledge; be frank, open and curious about medical uncertainties, and approach their condition with an open mind and a willingness to learn more (and above all, do not profess knowing what is not known); (2) believe patient experiences and the reality of their illness; (3) avoid moral blaming of patients; (4) treat patients with human dignity by demonstrating confidence, trust, respect, compassion, sympathy and understanding; and (5) share decision-making authority with patients in a collaborative partnership. All these expectations coincide with the current political ideology in Norway: to move towards a more person-centred care.

While modern biomedicine revolutionised doctors ability to diagnose, treat and cure a wide range of diseases, health services in the western world struggle to meet the needs of an increasing number of people with complex chronic illnesses in need of long- term coordinated care. Patients with chronic conditions which are difficult to explain, diagnose and cure, including so-called medically unexplained physical symptoms (MUPS), are especially challenging. When a clear etymology, precise diagnostic tools and efficient treatments are lacking, the medical encounter becomes difficult for both doctor and patient. Our project is designed to gain knowledge about how this user group experience the quality, accessibility and coordination of primary and secondary hea lth care in the Norwegian National Health System. The main questions are: How do chronically ill persons perceive the quality, accessibility and coordination of national health services? Are their experiences systematically associated with gender, age, pl ace of residence, or socioeconomic position? And what needs to be done to improve services offered to patients with complex chronic conditions? Cases chosen for the empirical study are people with Myalgic Encephalomyelitis (ME) and people with coeliac dis ease (CD). Special attention will be given to women with ME. By combining qualitative and quantitative data; in-depth interviews, questionnaires (CWF-2011) and internet blogs; experiences of users will be analysed by interpretive, narrative, comparative a nd statistical methods. The study is founded on a user perspective and a gender/culture perspective. Our project involves an international collaboration with a multidisciplinary group of highly competent researchers from three countries with similar Natio nal health systems: England, Canada and Norway. The originality and topicality of the project lies in several aspects of our study; in questions asked, in methods employed, and in perspectives applied.

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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester