New status report from Norway: Implementation of patient involvement in Norwegian health care.

In Norway, shared decision-making (SDM) is on the top of the priorities announced by the health authorities. Accountability for implementing this priority has been delegated to the four health regions, and from there into particular departments, hospital trusts, working groups or SDM coordinators. Using abundant public funding, different approaches to producing and implementing patient decision aids have been developed. However, none of these is implemented by any Norwegian services on a regular basis, while the accessible decision aids on the national health platform are not quality approved and in very little use. An ongoing new project is aimed to resolve this dilemma. Health professional training has been developed as a meta-curriculum with multiple modules, adaptive to setting and user group, and designed as an open-source learning platform, based upon the experience of "SDM Ambassadors" delivering the training. Most of the modules are already implemented on a regular basis in the South-Eastern Health Region, and 5000 health care professionals have already graduated from the training modules. However, in the standard patient pathways, and in most of the national medical guidelines, the patient is still considered to be a passive receiver of directives or recommendations, rather than an active participant in their own health decisions. Considerable structural implementation has been done in the education guidelines of all health professions on all levels to embed SDM principles. Teaching in SDM skills, quality of information and evidence-based nursing has become standard in most of the programs at Norwegian universities. Nevertheless, we currently still have no reliable estimate on the degree to which patients are actually involved in their own health decision-making. Further efforts in the process of implementing the patient's choice in the health system should involve the municipal services, follow a research-based strategy, include monitoring and consider the quality level of the informational environment of health-related decisions.

Shared decision-making in standardized cancer patient pathways in Norway-Narratives of patient experiences.

BACKGROUND: Cancer patient pathways (CPPs) were implemented in Norway in 2015-2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision-making. This study investigates how patients enrolled in a CPP experienced shared decision-making. METHODS: This study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach. FINDINGS: This study showed how participating in a standardized CPP provided different possibilities for shared decision-making. The patients' narratives of shared decision-making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action. CONCLUSION: Standardized CPPs provided patients with predictability and safety. Shared decision-making was possible when the cancer diagnoses supported preference-sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision-making needs to be discussed for each specific CPP. PATIENT OR PUBLIC CONTRIBUTION: A service user representative from the Norwegian Cancer Society participated in designing this study.

Nephrologists' experiences with patient participation when long-term dialysis is required.

BACKGROUND: For individuals in need of dialysis, patient participation is important when determining care goals and in decision making regarding dialysis modality. Nephrologists hold a key role in delivering evidence-based healthcare that integrates patient preferences and values throughout the trajectory, and their experiences with patient participation are important for improving health care. The aim of this study was to explore nephrologists' experiences with patient participation in different phases of the end-stage renal disease trajectory for working-age individuals who require dialysis. METHODS: This explorative study comprised interviews with ten nephrologists from four different dialysis units in Central Norway. We analysed the interviews by applying an interpretive phenomenological approach. RESULTS: Nephrologists had varied experiences with patient participation throughout the different phases of the treatment trajectory. During decision making on the dialysis modality, nephrologists emphasised patients' choices in two approaches. In the first approach, they expected patients to choose the modality based on the provided information, which could be actively steered. In the second approach, they recognised the patients' values and lifestyle preferences through shared decision-making. Within hospital haemodialysis, nephrologists considered patients' self-care activities equivalent to patient participation, seeing self-care as a source of patient empowerment. They identified divergent patient-professional values and organisational structures as barriers to patient participation. CONCLUSION: Our study shows that nephrologists have different approaches to patient participation in different phases of the end-stage renal disease trajectory. Individual understanding as well as organisational structures are important factors to address to increase patient participation in end-stage renal disease care. Shared decision making, in which patient values are balanced against biomedical treatment targets, allows for mutual agreement between patients and healthcare professionals concerning medical plans and minimises the potential for patient-professional tensions.

Narratives of patient participation in haemodialysis.

AIM AND OBJECTIVE: To explore how working-age adults experience patient participation in hospital haemodialysis. BACKGROUND: End-stage kidney disease is a progressive, chronic condition imposing patients with high treatment burdens and low health-related quality of life. Patients face multiple medical decisions related to living with kidney failure. Given their frequent interaction with health services, patient participation may be of special value. DESIGN: Qualitative design with a narrative approach. METHODS: In 2018, eleven patients aged 35-64 years undergoing hospital haemodialysis participated in individual interviews. All interviews were analysed using a narrative approach. Reporting followed the Consolidated criteria for Reporting Qualitative Research guidelines. FINDINGS: The patients' narratives of participation comprised three themes following their healthcare trajectory: Informed, but not involved in treatment choices; Duality of care and control; and Frail trust reflecting collaborative deficiencies. The patients received good information about dialysis, but were not involved in choice of treatment modality. Professional work, as well as the nature of treatment, contributed to restricted patient autonomy. Patients' trust suffered from collaborative deficiency generating delays in their treatment trajectories, and patients extended their responsibility into the coordination of transitions as a way of coping with these issues. CONCLUSIONS: The study identified challenges related to patient involvement and interdisciplinary collaboration. Involving patients through dialogue and acknowledging their experiences, preferences and lifestyles may strengthen the mutual patient-professional understanding of treatment. Despite increased focus on seamless trajectories, patients face obstacles regarding interdisciplinary collaboration and coordination of health services. RELEVANCE TO CLINICAL PRACTICE: The findings indicate a want of individually customised care for people requiring dialysis. Patients need to be involved in the choice of treatment modality as well as decisions related to the current treatment. Information must include potential consequences of the different treatment modalities. Health services need to strengthen collaboration in order to secure treatment continuity and patient involvement.

Patient participation in the clinical pathway-Nurses' perceptions of adults' involvement in haemodialysis.

AIM: To develop knowledge of nurses' perceptions of participation for patients treated with haemodialysis and their next of kin. DESIGN: A qualitative study with a hermeneutic approach. METHODS: The data were collected in 2015 through focus groups with 13 nurses in Central Norway. RESULTS: The nurses reported that patient participation ranging from non-involvement to shared decision-making was related to whether dialysis was initiated as acute or scheduled. The restrictions required in chronic haemodialysis limited participation. The next of kin were not involved. The nurses highlighted interventions on both the individual and system levels to strengthen participation. CONCLUSION: Dialysis units should develop strategies for participation related to individual needs and design treatment in cooperation with patients and their families, ensuring involvement early in the clinical pathway. Further research is needed on issues related to next of kin, including their desired level of involvement.