Lost in the loop - a qualitative study on patient experiences of care in standardized cancer patient pathways.

BACKGROUND: The Norwegian health authorities introduced standardized cancer patient pathways (CPPs) in 2015, aiming to reduce practice variations across hospitals and regions, and improve the continuity, coordination and overall quality of the health care service provided to cancer patients. There has been few studies investigating this change, and that have looked into the organisational and economic benefits of standardized pathways, however the element of care and the patient perspective has been especially neglected. This study explored the care element in cancer patient pathways through an in-depth study of patient experiences. METHODS: The patients were enrolled approximately three years after the introduction of standardized CPPs in Norway. Through a qualitative design with in-depth interviews, a total of 21 interviews were conducted with seven patients between 2018 and 2020. The first interview took place after the diagnosis was established and before treatment, the second interview during treatment, and the final interview approximately one year after the completion of active treatment. The empirical catchment area was eastern Norway. Data were analysed using a theoretical thematic analysis. RESULTS: This study sheds light on the complex challenges patients' faces, while navigating CPPs, including the need for better transition support, improved coordination and continuity in care, and a more holistic approach that encompasses emotional well-being and family support. Three overarching themes were identified: [1] Navigating CPPs: patient care and transition challenges, [2] Fragmented cancer care: challenges in coordination and continuity [3] Unmet needs and overlooked opportunities in CPPs. CONCLUSIONS: Patients experience that cancer patient pathways offer good medical treatment, but that the care element deserves more attention. Current CPPs are trapped in a logic of choice, preventing room for the element of care to receive the attention it requires for the patient to truly experience holistic person-centred care and continuous, well-coordinated services. Based in our study we argue there is a need to look into the missed opportunities for using the CPPs as points of departure for more holistic collaborative models for cancer care.

An emotional roller coaster - family members' experiences of being a caregiver throughout a cancer trajectory.

PURPOSE: To explore family members' experiences of caregiving throughout a cancer trajectory from diagnosis until around one year after chemotherapy and radiation treatment ended. METHOD: We conducted a longitudinal qualitative study using in-depth interviews with 13 family members at one to three points of time: before, during, and after treatment. To analyse the interviews, we leaned on Braun and Clark procedure for thematic analysis. RESULT: The analysis revealed three themes in family members' experiences of being a caregiver to a cancer patient throughout a cancer trajectory. These were: (1) From the time of diagnosis-overwhelming and uncertain; (2) During and after treatment-invisible and not involved; (3) Throughout the cancer trajectory-an emotional roller coaster. CONCLUSION: The results indicated that the family members felt invisible and not involved and they experienced being a caregiver throughout the cancer trajectory as an emotional roller coaster. Our empirical findings thus indicate that in cancer care, family perspectives are yet to be implemented in daily practice. This is in contrast to explicit goals in current health policies underlining support and involvement of family members as a core aspect in cancer care.

In Limbo: Seven Families' Experiences of Encounter with Cancer Care in Norway.

INTRODUCTION: Like many other countries, Norway has seen a shift from inpatient to outpatient cancer care, with pathways aimed at improving the integration and coordination of health services. This study explores the perspectives of seven patients and their family members in light of this change. We focus on one particular phase of the pathway: the first encounter. Our interviews were set in the period from referral until the start of treatment. METHODS: Nineteen individual in-depth interviews were conducted in seven families. Seven patients with cancer and 12 family members were interviewed. RESULTS: Three categories of experiences stood out in the empirical material: 'Being in between different health professionals', 'Overwhelmed by written and oral information' and 'Lack of involvement'. CONCLUSION: This study provides insight into families' experiences with cancer care from referral until the start of treatment. Our findings indicate that families often experience cancer care as fragmented and confusing. Although evaluations have shown that the introduction of cancer pathways seems to have a positive effect on waiting times and standardization of examinations across hospitals and regions, there is still potential for improvement in coordination between services, family involvement, and emotional and practical support. We argue that our findings highlight the tension between two ideals of professional care: standardization and patient-centredness. The study illustrates shortcomings in translating the ideal of patient-centredness into professional practice.

"Teamwork in hospitals": a quasi-experimental study protocol applying a human factors approach.

BACKGROUND: Effective teamwork and sufficient communication are critical components essential to patient safety in today's specialized and complex healthcare services. Team training is important for an improved efficiency in inter-professional teamwork within hospitals, however the scientific rigor of studies must be strengthen and more research is required to compare studies across samples, settings and countries. The aims of the study are to translate and validate teamwork questionnaires and investigate healthcare personnel's perception of teamwork in hospitals (Part 1). Further to explore the impact of an inter-professional teamwork intervention in a surgical ward on structure, process and outcome (Part 2). METHODS: To address the aims, a descriptive, and explorative design (Part 1), and a quasi-experimental interventional design will be applied (Part 2). The study will be carried out in five different hospitals (A-E) in three hospital trusts in Norway. Frontline healthcare personnel in Hospitals A and B, from both acute and non-acute departments, will be invited to respond to three Norwegian translated teamwork questionnaires (Part 1). An inter-professional teamwork intervention in line with the TeamSTEPPS recommend Model of Change will be implemented in a surgical ward at Hospital C. All physicians, registered nurses and assistant nurses in the intervention ward and two control wards (Hospitals D and E) will be invited to to survey their perception of teamwork, team decision making, safety culture and attitude towards teamwork before intervention and after six and 12 months. Adult patients admitted to the intervention surgical unit will be invited to survey their perception of quality of care during their hospital stay before intervention and after six and 12 month. Moreover, anonymous patient registry data from local registers and data from patients' medical records will be collected (Part 2). DISCUSSION: This study will help to understand the impact of an inter-professional teamwork intervention in a surgical ward and contribute to promote healthcare personnel's team competences with an opportunity to achieve changes in work processes and patient safety. TRIAL REGISTRATION: Trial registration number (TRN) is ISRCTN13997367. The study was registered retrospectively with registration date 30.05.2017.