How can the cancer patient`s family be integrated in Integrated care?

Abstract

Background In 2015, 28 cancer pathways were introduced in the Norwegian public health care system. The rationale behind this change was to improve the integration of health care services in cancer care. The patients is for the patients and their family and caregivers shall experience a well-organized cancer care, a holistic treatment and predictable progression.The research literature shows that the term integrated care is not commonly used in cancer care. When used, integration and related terms are linked to coordination within or between hospital cancer teams and other specialist providers, not to highlight coordination and collaboration across administrative levels of health care systems. We wanted to expand the study of cancer care beyond evaluations of the hospital and specialist setting, and to address the gap in research about how the cancer patient and their family experience cancer care. The main aim of the overall PhD project is to develop a better understanding of the situation of cancer families in contact with the health care system.MethodThis study has a descriptive qualitative and exploratory design. We will explore the experiences cancer families have from interacting with the health care system, before starting treatment. The data collection build on a narrative and phenomenological approach. The interview guide consisted of one main question and four topics Seven families were recruited from a Norwegian hospital Trust organized as seven hospital units, spread over a geographic area in an approximately 300 kilometers. Nineteen (seven patients and twelve family members) in-depth interviews were conducted from June 2018 until February 2019. Systematic text condensation (STC) inspired by Malterud was used in the analysis.ResultsAnalysis indicates two topics that needs improvement in cancer care. First they experienced cancer care as fragmented and inconclusive, and that created confusion and insecurity. Second, the family experience the information given before and during the first meeting where diagnose is set as inadequate. They also indicate a topic where they describe how they handle the disease practically and emotionallyDiscussion/conclusionsBased in our findings and theories from the field of integrated care we will discuss what changes can be made in order to better reach the aim that "The patients and their family shall experience a well-organized cancer care, a holistic treatment and predictable progression”. We will especially emphasize the gap between the patients underlining of the role of their family and the lack of attention the family gets when cancer pathways are discussed and evaluated.Limitations Informants from seven families are a small number of participants, but by the end of the study, we will have data from 59 interviews.