7 Everyday Life with Chronic Illness: Physical Health or Well-being?

Introduction

A growing number of people worldwide are living with chronic illnesses which are responsible for 70% of all deaths. This presents huge challenges for the healthcare systems, concerning tasks, personnel, logistics, and economics (WHO, 2018a), and brings WHO’s broad health concept from 19481 into a renewed focus. In Greenland, recent health strategies (DSI, 2013; DSI, 2014; DS, 2017) are trying to meet the challenges through an increased focus on health promotion and rehabilitation, in order to ease the pressure on medical treatment. The involvement of patients as active participants in healthcare contributions has been pointed out as an important precondition for the success of the contributions. Greenlandic health strategies are modeled after Danish strategies. According to research in Denmark, patient involvement is often put into practice in problematic ways in that patients are expected to participate in healthcare on the institutional terms (Norlyk & Harder, 2009; Holen & Ahrenkiel, 2011; Thuesen, 2013). Therefore, the aim of the study presented in this chapter (Aagaard, 2015; Aagaard, 2017) was to explore patients’ perspectives on everyday life with illness and how it relates to healthcare professional efforts. Below, the methodology of the study is outlined, and some findings concerning the consequences of excluding patients’ and relatives’ perspectives from professional practice, and the significance of involving patients’ and relatives’ knowledge and perspectives for rehabilitation and health promotion are presented.

Theoretical Approach

The theoretical approach was social-psychological (Holzkamp, 1998, Dreier, 2008). A key concept is Conduct of Everyday Life, which emphasizes persons’ agency. It draws attention to the fact that people on a daily basis strive to make their lives hang together, both time-wise, organizationally, and in relation to other participants in their lives. This is done in interplay with their conditions. Thus, social practice is reproduced and changed through the participants’ ongoing actions in interplay with each other and the conditions.

The theoretical approach builds on Critical Psychology which has its origin in Germany in the 1970’s and since then has spread internationally (see e. g. Annual Review of Critical Psychology, 2006 and 2013). Critical Psychology is a theoretically founded conceptual frame of analysis for analyzing social practice (Dreier, 2008). The analytic concepts were developed through a historical and concrete analysis of human psychical development (Holzkamp, 1998). A basic ontological point is that human beings have potentials for changing and developing social practice for the common good. Survival is not up to ‘the fittest’, but is a question of cooperation. Part of the analysis of social practice is to deconstruct and criticize prevailing or merely common sense-concepts, for example western concepts of health and wellbeing, as a basis for reconstructing a specific social practice, e. g. a local healthcare practice, by including the perspectives of all participants and by elaborating the historical and cultural context of the practice2. The reconstruction can show opportunities for developing the practice in a common perspective. In this way, Critical Psychology is a culture-sensitive and anti-imperialistic theory.

Methods

The study was designed as an ethnographic fieldwork (Spradley 1979; Spradley, 1980). 13 patients with chronic illness were interviewed in the national hospital in Nuuk, the capital of Greenland. Subsequently, five of these patients were visited in their homes in towns and settlements up to three times over a period of 2.5 years. As part of patients’ contexts in everyday life, the healthcare institutions in Nuuk and locally were studied. The methods were participant observations, qualitative interviews, and document analysis.

Findings

Patients’ Invisible Everyday Lives

The insight in patients’ lives and perspectives shows that patients are extremely active in order to manage their life with illness, both the physical disabilities derived from the disease and medical treatment, and the relational consequences of loss of occupation, conflicts in the family, meaninglessness, solitude, etc. Patients deal with these problems daily, but very often they don’t succeed. They need healthcare professional support, not only to handle medication and other disease-related interventions, but also to discuss their opportunities to manage the everyday life with illness. In healthcare practice, this is not seen as an object, and professionals know little or nothing about patients’ everyday life outside hospital. For example, a woman with a kidney disease and her husband, who lived in a settlement far from Nuuk, had ongoing discussions between them about whether to stay on in Greenland for the sake of familial obligations or move to Denmark, in order to live nearby a specialized hospital. Since the doctors and nurses did not know about the concerns of the couple; they carried out prolonged examinations and treatment in the national hospital in Nuuk. This meant long periods of separation for the spouses, and at a time the woman nearly died without her husband at her side. A dialogue with the professionals about the everyday life could have helped the couple to decide where to settle down and to take their measures in relation to that.

A Disease-Oriented Practice

Though the ethos of the nursing profession prescribes that nurses treat patients as human beings with a life and not as dysfunctional bodies, nurses are not given good opportunities to do so in practice because practice is dominated by disease-oriented procedures, such as clinical observations, treatment of wounds, administration of medicine, etc. This has consequences for patients and relatives. For example, the study shows that relatives are often overlooked or even regarded as a burden for the professional work if they pose questions or make demands, because it takes time from the disease-oriented procedures. Communication between nurses and patients is most often limited to information from nurses about disease and medical treatment. Nurses and other healthcare professionals mostly seek patients’ knowledge about their lives in order to make disease-oriented arrangements, such as consultations with doctors.

The Valuation of Knowledge

In healthcare practice, patients’ practical knowledge is regarded as subordinate to professional academic knowledge and, therefore, not sought out. However, the study indicates that well-intentioned professional efforts often fall to the ground due to the exclusion of patients’ everyday knowledge and their own perspectives on a meaningful life. For example, stroke patients who are eager to regain lost functions risk being viewed as unrealistic about their future physical abilities and, therefore, not getting the necessary support for training. However, patients often exceed professional expectations because they have a strong motivation in their everyday life, such as the wish to get a new occupation or being able to take care of grandchildren. This motivation remains invisible if the professionals don’t approve of patients’ knowledge and seek it. Consequently, professional practice often misses important knowledge about patients’ resources for managing the everyday life with chronic illness – in defiance of the well-documented significance of such resources for rehabilitation (Borg, 2002; SST, 2012, Thuesen, 2013, Arntzen, Hamran & Borg, 2015).

The Value of Patients’ Knowledge and Perspectives for Professional Practice

The study shows that patients in the national hospital in Nuuk built up their own communities around joint activities. These self-appointed activities were meaningful for them and promoted their wellbeing. For example, many patients found support in mutual discussions about life with illness. They received inspiration about new ways to tackle problems, and developed new perspectives on future opportunities. Other meaningful activities were walks in the surrounding nature, attending social and cultural events in town, meeting around story-telling, singing and listening to music, and more. Patients in the study indicated that this kind of togetherness was encouraging and decisive for their abilities to endure the hospital stay and to manage the everyday life after discharge.

From the perspective of professionals who are working in a disease-oriented healthcare system, such activities among patients are regarded as irrelevant and only of private interest for the patients. However, the insight in patients’ activities holds knowledge about possibilities for professional action in relation to health promotion and rehabilitation. The patients’ joint activities during hospital stay show their needs and wishes and their resources. This knowledge is crucial for the arrangements for rehabilitation, where wellbeing, not treatment of disease, is at the center. The involvement of patients’ needs and wishes in a life perspective and the involvement of their resources in everyday life in professional practice show ways for professional initiatives concerning health promotion and rehabilitation.

Conclusion

Patient involvement is a strategy for solving current problems in healthcare because of the growing prevalence of chronic illness. Still, patients and relatives do not feel much involved. Two main problems are pointed to in this chapter: the disease-orientation of healthcare practice and the unequal valuation of patients’ and professional knowledge. In terms of the broad health definition of WHO, the character of support needed for people with chronic illness is about wellbeing just as much as physical health. This directs the attention to the contexts where people live their everyday lives and where their resources to overcome life with illness have to be found. The significance of this is recognized in health strategies. But in practice, healthcare still concentrates on physical disease and medical treatment from a one-sided professional perspective. This study shows the restrictions of this kind of practice in Greenland and the potentials for health promotion and rehabilitation by involving the patients’ lives and perspectives in professional practice.

Notes

1. ‘Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’ (WHO, 2018b).
2. This is an extensive and concrete work and the results are only hinted in this short text. For more knowledge about the meaning of the living conditions, the environment, the particular culture and the present development in Greenland I refer to my book ‘Everyday life with illness – patients’ cultural perspectives on healthcare practice in Greenland’ (see the list of references).

Aagaard, T. (2015). Hverdagsliv med sygdom—patienters kulturelle perspektiver       på sundhedspraksis i Grønland (Everyday life with illness—Patients’ cultural perspectives on healthcare practice in Greenland). Inussuk—Arktisk forskningsjournal, 1, 1–221. http://naalakkersuisut.gl/~/media/Nanoq/Files/Attached%20Files/Forskning/Inussuk/DK%20og%20ENG/Inussuk%201%202015.pdf.

Aagaard, T. (2017). Patient involvement in healthcare professional practice in hospital – A question about knowledge. International Journal of Circumpolar Health, 76(1), 1403258.

Arntzen, C., Hamran, T., Borg, T. (2015). Body, participation and self transformations during and after in-patient stroke rehabilitation. Scandinavian Journal of Disability Research, 17(4), 300-320.

Dreier, O. (2008). Psychotherapy in Everyday Life. New York: Cambridge University Press.

DS – Departementet for Sundhed. (2017). Forslag til en National Rehabiliteringsstrategi 2017. Nuuk: Naalakkersuisut/Grønlands Selvstyre (Ministry of Health. (2017). Bill for a National Strategy for Rehabilitation 2017. Nuuk: Naalakkersuisut/Government of Greenland).

DSI – Departementet for Sundhed og Infrastruktur. (2013). Kræftplan for Grønland.  Nuuk: Naalakkersuisut/Grønlands selvstyre (Ministry of Health and Infrastructure. (2013). Cancer Plan for Greenland. Nuuk: Naalakkersuisut/Government of Greenland).

DSI – Departementet for Sundhed og Infrastruktur. (2014). National  Sundhedsstrategi 2014-2017. Nuuk: Naalakkersuisut/Grønlands selvstyre (Ministry of Health and Infrastructure. (2014). National Health Strategy 2014-17. Nuuk: Naalakkersuisut/Government of Greenland).

Holen, M., & Ahrenkiel, A. (2011). ‘After all, you should rather want to be at home’. Responsibility as a means to patient involvement in the Danish health system. Journal of Social Work Practice, 25(3), 297-310.

Holzkamp, K. (1998). Daglig Livsførelse som subjektvidenskabeligt grundkoncept. (Conduct Of Everyday Life as Founding Concept of a Science of the Subject). Nordiske Udkast, 26(2), 3–31.

Norlyk, A. & Harder, I. (2009). After colonic surgery: The lived experience of participating in a fast-track programme. International Journal of Qualitative Studies on Health and Wellbeing, 4(3), 170-180. https://doi.org/10.1080/17482620903027726

Spradley, J. P. (1979). The ethnographic interview. Belmont, CA: Wadsworth, Cengage Learning.

Spradley, J. P. (1980). Participant observation. Belmont, CA: Wadsworth, Cengage Learning. SST

Sundhedsstyrelsen. (2012). Forløbsprogram for rehabilitering og palliation i forbindelse  med kræft – del af samlet forløbsprogram for kræft. København: Sundhedsstyrelsen (National Board of Health. (2012). Course programme for rehabilitation and palliation in relation to cancer – part of a package programme for cancer. Copenhagen: National Board of Health).

Thuesen, J. (2013). Gammel og svækket i nye omgivelser – narrativt arbejde i  brugerorienterede rehabiliteringsforløb (Old and impaired in new surroundings – narrative work in user-oriented rehabilitation courses). Ph.d.-afhandling. Institut for Psykologi og Uddannelsesforskning, Roskilde Universitet. Retrieved from http://www.etf.dk/sites/default/files/uploads/public/phd_afhandling_jette_thuesen.pdf

WHO (World Health Organization). (2018a). Noncommunicable diseases and their  risk factors. Retrieved from: http://www.who.int/ncds/en/.

WHO (World Health Organization). (2018b). What is the WHO definition of health? Retrieved from: http://www.who.int/suggestions/faq/en/. http://www.who.int/suggestions/faq/en/