Patient involvement in healthcare professional practice – a question about knowledge

Abstract

The concept of patient involvement is ambiguous and contested in the healthcare systems in Western Europe and North America. Current research indicates that patients only feel moderately involved in their treatment and care. This article builds on a study of chronically ill patients’ perspectives on healthcare practice in Greenland. It discusses the significance of including in healthcare practice knowledge of patients’ everyday lives with illness and their own views on their situations. Research was qualitative and ethnographic. Participants were followed with participant observations and qualitative interviews for 2.5 years during hospital stay in the capital Nuuk and in their homes in towns and settlements during 2010–2013. Results show that patients are concerned about how to manage their life with illness on a daily basis. Their everyday life activities demonstrate the resources they have to live with illness. However, procedures for healthcare practice concentrate on treatment of the physical disease. Knowledge about psychosocial needs for care and rehabilitation tend to be excluded. The study points to potential for improving professional practice through healthcare professionals’ active investigation of patients’ everyday lives and values, integration of this knowledge into their professional practice and developing structures for this kind of involvement.

Experiences of cancer rehabilitation among patients in rural areas in northern Iceland: physical and psychosocial well-being, coping, quality of life, and satisfaction with care. A qualitative study

“…However, our study shows that the insufficient instructions about physical rehabilitation can cause feelings of abandonment. Tellingly, and importantly for the Circumpolar context, these findings coincide with findings in a study conducted in Greenland, reporting a lack of adequate attention to patients' self-motivation and to the efforts in coping with a new ordinary life demanded by severe pathologies, cancer included [14].…”

“…The findings in this study give reason to believe that systematic cooperation between healthcare practitioners and specific rehabilitation institutions in rural areas are essential [13][14][15]. As seen in this study the participants were not given adequate information on rehabilitation resources, nor were they referred to a specific rehabilitation centre or institution, unless they had asked for it themselves.…”

“…Previous studies conducted in the Circumpolar North have elaborated on the lack of access to healthcare services and the consequences it may have for health and well-being [17]. These are great challenges facing healthcare professionals today, due to the growing burden of cancer in some of the inhabited Arctic regions [13][14][15]. In the light of results in this study future research should focus on patients' awareness of cancer rehabilitation and resources in his community.…”

“…Furthermore, the incidence rate of cancer among the Icelandic population has quadrupled since registration on cancer diagnosis began in 1954, around 1,500 individuals are diagnosed on a yearly basis [12]. Studies conducted in the Circumpolar North have addressed the diverse and unique healthcare delivery in that part of the world [13][14][15] showing that cancer is becoming a significant public health problem. Findings indicate an urgent need for improvement in both access to and delivery of the relevant services [11,13,14,16].…”

“…Studies conducted in the Circumpolar North have addressed the diverse and unique healthcare delivery in that part of the world [13][14][15] showing that cancer is becoming a significant public health problem. Findings indicate an urgent need for improvement in both access to and delivery of the relevant services [11,13,14,16]. Physical geography, healthcare provider-related barriers, and lack of continuity in care provision are known to have negative influences on patients' health outcomes [17,18].…”