Providing Patient-Centered and Coordinated Care: A Qualitative Study of Norwegian Cancer Coordinators’ Experiences of Enacting Their Role in Primary Health Care

The cancer coordinator (CC) role was initiated by the Norwegian Cancer Society to meet the growing need for patient-centered and coordinated care in primary health care. Norwegian CCs shall adopt a dual focus on both patient- and system-level work, to address patients in all stages of the cancer trajectory, thus enacting a broad range of tasks. However, there is little in-depth knowledge of CCs’ own experiences of enacting their role to deliver patient-centered and coordinated care. Based on the identified research gap, the overall aim of the present thesis is to increase knowledge of Norwegian CCs in primary health care own experiences of enacting their role to deliver patient-centered and coordinated care. Consequently, the first aim of this thesis was to study CCs’ own experiences of their role (paper I). The second aim was to investigate in CCs’ experienced barriers and facilitators for system-level work (paper II). The third aim was to examine CCs’ experiences with the delivery of cancer rehabilitation interventions in primary health care (paper III). For all papers a qualitative method was applied using a hermeneutic research design. In paper I and II, data were obtained via semi-structured, individual in-depth interviews with 26 CCs. In paper III focus groups were conducted, with seven, respectively five CCs. Data were analyzed using thematic analysis and the findings discussed in light of Antonovsky’s salutogenic theory. Paper I focused on the CCs’ experiences of enacting their role. The findings indicated ‘Providing coordinated care’ as an overarching topic for CCs’ experiences of how they enacted their role. This topic was elaborated in the following three main themes: (1) ‘Finding their place and creating their function’, (2) ‘Meeting the needs of patients and helping them to cope’, and (3) ‘Promoting well-functioning cancer care systems’. Paper II focused on CCs’ experiences of barriers and facilitators for their system-level work. Here, the analysis revealed three main themes: (1) ‘Understanding the role and local cancer care’, (2) ‘Systems for care delivery in primary health care’, and (3) ‘Commitment to collaboration’. Where present, the themes could represent important facilitators, where their absence could depict notable challenges to CCs’ system-level work. Over time, CCs gradually seemed to turn initial challenges into facilitators. Paper III focused on the CCs’ experiences with the delivery of cancer rehabilitation interventions in primary health care. The analysis illuminated three main themes: (1) ‘A missing link to cancer rehabilitation’, (2) ‘Trying to put cancer rehabilitation in the spotlight’, (3) ‘The need to build a system for rehabilitation service delivery’. The findings from the three studies indicate that CCs delineated both patient- and system-level activities. CCs encountered initial challenges, as they expressed that they had to develop and implement the role in a time-consuming process and with little perceived support or guidance. Role flexibility enabled them to adjust the role to the distinct contextual frames and settings they worked in. However, the role’s diversity challenged the implementation and external role recognition. CCs outlined a high degree of case-based, patient-level work, emphasizing the importance of a holistic approach, patient involvement and comprehensive needs assessments. Although CCs were available to patients in each phase of the continuum, the majority seemed to focus most on providing palliative care, and less on e.g. cancer rehabilitation. The broad range of tasks were perceived as work overload, hence, system-level work seemed to be sidetracked. Here, CCs encountered important topics, such as role recognition, common procedures and professional collaboration that could act as both barriers and facilitators for their system level work. The CCs expressed a missing focus on cancer rehabilitation in the municipalities. Although the CCs suggested a holistic approach to complex cancer rehabilitation, they perceived current practices to contrast this concept. Further, CCs accounts of rehabilitation- and treatment-focused tasks seemed to be blurred. In light of salutogenic theory, the findings indicate that CCs adopted a salutogenic view in their work as they focused on resources that could enhance comprehensibility, manageability and meaningfulness to achieve positive developments both at the patient- and the system-level. The findings show that CCs ask for enhanced support from the municipal management and a better facilitation of system-focused work, in terms training, resources, multidisciplinary teams and cross-sectoral communication systems. This study suggest CCs and municipalities to adopt a stronger focus on cancer rehabilitation. Work-overload of CCs may be counteracted in assigning them a more overarching function with a focus on capacity building of health professionals and on local practice development. More research into the role is needed, particular on its effects, system-focused aspects and CCs’ role in facilitating rehabilitation in municipalities. There is a need for quantitative and qualitative research into CCs’ role from the perspectives of the patients and their families, CCs’ superiors and collaborating partners