Abstract
Introduction
Various efforts aim to enhance continuity of care for patients with long-term health-care needs. Since 2012, Norwegian hospitals are mandated to appoint individual care coordinators for patients with complex needs to ensure continuity in the care pathway. New roles must meld with current practice. Implementation has been slow. This study investigates current care coordination across hospital contexts, from the perspective of health-care providers, a scarcely researched area.
Methods
A qualitative study using semi-structured individual, duo, and group interviews with 16 purposefully selected Norwegian health-care providers from different hospitals, departments, professions and with various roles. A thematic cross-case analysis using systematic text condensation was performed.
Results
Common for the interviewees’ care coordination experiences was to “keep one step ahead.” The scope of their coordination activities varied from diagnostics and treatment to orchestrating long-term, cross-sectional multidisciplinary care. This work was often performed without designated resources. The interviewees applied experience, knowledge, and sensitivity when defining the patients’ needs and searching for resources to orchestrate coordination work. They strived to balance the needs of patients with the resources available and adjusted the continuity ambitions on behalf of their patients to what they considered doable in the relevant contexts. However, many told of negotiating special solutions for selected patients with particularly complex needs.
Discussion
Care coordination for patients with complex needs emerged as diverse and context-sensitive. Acknowledgement of coordination activities that go beyond established workflow routines and clinical pathways, together with flexible leadership support and accessible infrastructural resources are needed.
Keywords
Background
Fragmented care is a great challenge for people living with complex, long-term needs of health care.1,2 A growing number of patients are in need of health services from multiple providers and units over time3,4 and they request improved care coordination.5,6 Feeling secure when crossing care boundaries, having the opportunity and the means to be involved in care on their own premises, and having access to a contact person who knows them have been found to be central values for patients.7,8
Hospitals face special challenges in providing continuity of care for patients with complex needs due to an increasing number of specialized units, numerous professions and specialists involved in treatment and care, and that health-care providers work in shifts.4,9 These challenges apply to coordination within and between hospital units, 9 as well as transitions between service levels and long-term collaboration among multiple actors and services. 10
Various models have been introduced in hospitals to secure efficient coordinated care for patients. Examples are clinical pathways, 11 care pathways, 12 process-oriented redesign,10,13 case management, 14 advanced nursing roles with extended coordination responsibility,15,16 and formal agreements on collaboration. 17 A Norwegian approach has been to assign health-care providers within clinical staff a personal responsibility for the development of individual care plans and for taking on a coordinator role to guide the patients through a fragmented health-care system. 18
Studies of coordination work in hospitals have focused on different aspects, such as daily coordination of resources and processes to enhance the continuity of work and treatment of patients across shifts and professions,9,19 distribution of responsibility, 20 challenges related to design and performance of particular coordinator roles,15,16,21 the dynamics of collaboration in coordinating processes,22,23 handoffs, information-sharing or the use of care plans to secure transitions,24–26 barriers and facilitators to coordinated care,15,27,28 or on how to handle multimorbidity or complexity. 29 These studies either focus on the needs of a defined patient group,22,24,30 a particular context with defined collaborating partners,28,30 or have evaluated the implementation of new organizational models with defined coordinator roles.15,16
Hospital patients’ needs are diverse, and hospital units vary when it comes to tasks and aims, staff, and organization. For successful development and implementation of coordinators to ensure continuity of care for patients with complex needs in various contexts, there is a need for enhanced knowledge about ongoing coordination practices. However, we have not identified studies covering various hospital contexts, in terms of patient groups and roles, of how health-care providers in their everyday practice define and experience coordination activities aiming at continuity in the health-care trajectory for patients with complex needs.
The aim of this study was therefore to investigate the experiences of health-care providers, both in designated roles and from clinical staff, who take on coordination responsibility to ensure continuity of care for patients with complex needs in various hospital settings.
Methods
This qualitative study employed semi-structured individual, duo, and group interviews with health-care providers from different hospitals, departments, and professions throughout Norway. The study includes experiences of health-care providers with formal care coordination responsibility as well as experiences of clinicians taking on coordinator responsibility. The interviews were conducted in the spring of 2015.
Setting
Norway has a publicly funded health-care system mainly free of charge for patients at the point of service. Specialized health care is run and owned by the state. 17 Primary health and social care is organized and financed by the municipalities. Similar to other Western countries,1,18 Norway has implemented national reforms aiming to reduce fragmentation of services. 31
In 2001, patients with complex needs gained a legal right to an individual care plan coordinated by one of the service providers. 32 In 2012, the hospitals were legally required to appoint a patient care coordinator for patients with complex or long-term needs of services to secure continuity of care in the individual patient trajectory. 33 This applies to patients needing services from two or more different units and professions over time, independent of medical condition(s) or from which hospital departments the patient receives treatment. 34 It is statutory for each hospital to have their own Coordination Unit that is responsible for implementation and development of these arrangements.
Interviewees
Given the exploratory aim of the study, we used purposive sampling to include health-care providers, from different hospitals and different departments, with broad experience in coordination activities aiming at continuity of care for patients with complex needs. We sought out interviewees both in designated or formal coordinator roles, as well as interviewees with coordination experience from taking on coordination responsibility in clinical work without having a designated mandate. Additionally, we sought variation in the interviewees’ workplace, tasks, profession, experiences with care coordination, and in the patient groups within their responsibility. The coordination activities in focus were activities directed at patients with complex or long-term needs of services from different units and professions with a variety of medical conditions, identical to the target group for the legally required patient care coordinator. We aimed at representing a variety of settings where this new universal coordinator role was to be implemented, as well as health-care providers in different work roles and with varied professional background who might be candidates to fill this new statutory coordinator role in hospitals.
The recruitment was carried out as a stepwise process, including one hospital at a time to ensure variation in the interviewees’ experiences regarding care coordinator roles. A nationwide survey conducted by the first author (AH) in August 2014 on Norwegian hospitals’ implementation of patient care coordinator roles was used as a basis to select the hospitals for this study. Each hospital’s Coordination Unit was asked to identify candidate interviewees from their hospital based on given criteria. From two of the hospitals, we requested interviewees among clinical staff from various departments with the desired experience; from the other four hospitals, we requested designated coordinators. The Coordination Units forwarded our request to department leaders. The leaders then identified candidate interviewees and conveyed an information letter presenting the study with a consent form included. The Coordination Unit returned the consent forms with contact information from those willing to participate. Candidate interviewees were then contacted by AH. All approached candidates, except one, agreed to be interviewed.
Data collection
Sixteen health providers were interviewed, seven individually, two in a duo interview, and seven in groups. The interviews were semi-structured, audio recorded, and transcribed verbatim.
Providers in clinical positions from different departments in the same hospital were interviewed in groups. Group interviews were chosen in order to facilitate reflections on coordination work in different settings between the clinicians. These interviews were inspired by focus group techniques with the interviewer in a moderator role.35,36 The interviewees in designated coordinator positions were interviewed individually to allow for going more into details about the particular coordinator role. Two of the candidate interviewees were sharing a designated coordinator position. When asked, they both wanted to participate in the study. They suggested to be interviewed together, explaining that they had different professional background and had experiences from different aspects of the coordinator role. This duo interview followed the structure of the individual interviews. AH conducted all the interviews with DG participating in the first group interview. The interviews took place at the interviewee’s workplace, except for the individual interviews of the two coordinators on system level (see Table 1), which were conducted through telephone. The average time for the two group interviews was 85 min (70 to 100 min) and for the seven individuals and the one duo interviews was 55 min (41 to 83 min).
Interviewee characteristics.
The following guiding questions were applied for both types of interviews: What do you define as coordination work aiming at continuity of care for the patient? How do you perform this type of coordination work? How do you experience being a coordinator or taking on coordination responsibility? Reflection notes were taken immediately after the interviews.
Analysis
The analysis followed the four steps of systematic text condensation (STC). 37 STC is a procedure for thematic cross-case analysis that is inspired by Giorgi’s psychological phenomenological analysis. However, STC is also recommended when the approach is descriptive as in this case, aiming at presenting the interviewees experiences as they express them — not searching for an underlying meaning of what they present. 37
To gain an overall impression and formulate preliminary themes (step 1), AH listened through, proofread, and read all the transcripts. The coauthors read the two most comprehensive transcripts. Based on this, 11 themes were initially formulated. Through discussions between all authors, these were revised to seven.
In step 2, units of meaning — data elements from the interview transcripts relevant for elucidating the research question — were coded into groups subordinated to these seven themes by AH using the data software NVivo11. 38 A comprehensive collection of quotations from all interviews, structured according to the seven themes, was read by the coauthors. The themes and code groups were then discussed and negotiated repeatedly in the author group resulting in a reduction to three themes: knowing what is the objective of good coordination, legitimacy for the coordinator role and coordination work, and having access to the necessary coordination resources.
In the third step, the meaning units in the code groups within each theme were condensated into an abstraction containing the content of the included meaning units. This text was used as a foundation for refining the themes, and constituted a starting point for the presentation of the study results. Quotations from the interview transcripts were selected to illustrate the themes.
In the final step, we wrote the result section building on the condensates, further refining the themes and the text. The theme headings were revised to cover the final results for each theme. Ultimately, we validated the final text against the interviews.
Results
The interviewees worked in 15 different departments at six different hospitals. Seven worked part time or full time in designated coordinator positions dedicated to an established pathway (n = 4), a defined patient group (n = 1), or with responsibility for coordination in the hospital on a system level (n = 2). Eight were health-care providers who had taken on informal coordination responsibility for patients within their clinical role. One was the leader of a department.
The interviewees presented a diverse range of coordination activities, from follow-up of care transitions or being available as a contact person to implementation of clinical pathways or orchestration of long-term multidisciplinary care across contexts by continuously adjusting care to complex and shifting needs.
The findings were categorized into three main themes: “Keeping one step ahead,” “Identifying and activating coordination resources,” and “Justifying the priority and quality standards of coordination work.”
Keeping one step ahead
The most prominent common feature defining the interviewees’ coordination activities was to plan for the next step, being in front of things, anticipating expected progression of the illness or disability, and trying to predict the patients’ future needs for services and support. I must sort of keep one step ahead to get the measures in place in time. That is how we can make them feel safe. (Specialized nurse in palliative team)
For particularly vulnerable patients, establishing long-lasting relations with one or a few health-care providers was emphasized as important. Due to the organization of the staff or to shifts and conflicting responsibilities, however, it was said to be demanding to take on personal responsibility for the continuity around one specific patient in many of the represented departments, both during hospital stays, and especially for following admissions or consultations. Some of the interviewees, also those without designated coordinator roles, took on responsibility as contact persons for patients between hospital visits when they saw this as necessary. This typically concerned patients with progressive conditions in contact with outpatient clinics or ambulatory services. One nurse talked about how she arranged that selected patients with particularly severe disease and functional impairments at regular intervals met an experienced specialized physician who knew them well. She told that she facilitated maintaining the patient’s relationship with one doctor, while at the same time allowing experiences with these patients for junior doctors in training.
Establishing fixed points of contact in primary care was reported as particularly important. Nurses working in outpatient clinics with dementia and incurable cancer described how they prioritized establishing relations between patients and central providers in primary care at an early stage when expecting increased needs of services. (…) we are in contact with the “dementia coordinators” [in the home care services] so that they can be prepared and plan ahead. (Nurse, geriatric outpatient clinic)
The variation in the scope and extent of the coordination among the interviewees influenced the area of responsibility they took on regarding keeping ahead. While some limited their coordination activities to the primary responsibilities of diagnostics and treatment in the units where they worked, others took care of patients’ coordination needs in a broader perspective and included an extended period after discharge. One working with substance abuse treatment expressed the need of providing a “security net” if the patient decided to leave the hospital before follow-up was organized. Key to the course of treatment is to set up a collaborative meeting or to start something [in primary care] to be on the case and to achieve continuity. You just need to stay in front of things – all the time. (Nurse, detox. ward) It is usually very fruitful to gather around the same table, as we often find alternative and better solutions. (Psychiatric nurse, rehabilitation department)
Identifying and activating resources for coordination
Most of the interviewees told of constraints in available resources, especially in capacity, competence, and work organization needed to perform coordination activities. However, they exploited available resources to make coordination activities possible when considered necessary. There was broad variation in what the interviewees talked of as resources. These included organizational structures on different levels, access to relevant follow-up services, the availability of personnel with desired competence, and the freedom to work in a way they considered appropriate to ensure continuity for their patients.
The availability of resources for coordination work varied relative to the interviewees’ role and work context. Those coordinating the standardized clinical pathways for cancer told of how they primarily coordinated the planned stream of events in the defined process for their patients. Moreover, how they extended their responsibility and made room for exceptions from the standards when they considered that individualized coordination was required to meet individual patients’ needs. They presented how they, by virtue of their role, had a voice in the multidisciplinary meetings where the decisions were made regarding the course of treatment for the patients. Additionally, they held a position where they knew the routines and the stakeholders both in their own and in collaborating departments, being able to activate additional resources when needed. This was contrasted by one interviewee with the responsibility of coordinating early stage rehabilitation according to an ideal pathway, but where there was no pre-booked access to rehabilitation services after the initial phase. These services had to be negotiated and were source of considerable frustration for the coordinator, as there had been a gradual downscaling of the needed rehabilitation services both in the hospitals and in the municipalities. The reduced length of stay at many hospitals increase the pressure on the specialized rehabilitation services. A coordinator responsible for securing access to rehabilitation in such a situation will not be able to succeed. (Specialized physician, coordinator early phase of rehabilitation after brain injury) Some patients have recurrent hospital stays. If they have a coordinator in primary care, and the stay is not too long, we try to act as one team together with the primary care team as long as they are in the ward. (Nurse, psychiatric ward for young patients with psychosis) When you have a designated coordinator role like me, you are more free and flexible to make appointments. You are allowed to visit patients at home and you can admit them to hospitals outside of the planned admissions. (Coordinating nurse for severely disabled patients) There is no possibility in the system to register the telephone consultations or organizing work [so that this activity could generate income for the hospital]. You should be able to allocate time for coordination work. This means a lot, if you are to take on a medical coordination role. (Specialized physician, children with complex conditions)
Coordination activities may challenge the established division of tasks and responsibilities, especially when some providers extend their responsibility. This can imply transcending the boundaries of other providers. The interviewees told about being sensitive and responsive in the interplay with other providers in these processes. Some also emphasized the need of having autonomy and flexibility anchored in the leadership when extending their role across boundaries. The most important is that it is accepted that others can come in and make decisions [about what needs to be done in a patient’s trajectory]. It feels strange to step over the other providers’ border. (Coordinator, nurse, cancer pathway)
Justifying the priority and quality standards of coordination work
Both the interviewees working in designated coordinator positions and those in clinical positions without designated coordination resources or mandates told of how they often expanded their role to take care of what they understood as the patients’ needs for continuity support. They used various arguments to justify the scope and extent of their coordination activities and the quality standards they set for this work.
The interviewees in formal coordinator positions primarily referred to guidelines, quality, and patient safety to justify why they went further than their coordination mandate. In the national guidelines for patients with long-term mechanical ventilation, specialized health care is given an extended responsibility for following up the patients also between hospital admissions. (Nurse coordinator, severely disabled patients)
Some justified their extended coordination responsibility with arguments about the complexity in the patients’ situation: the severity or expected progression of the illness, disability, or dependency of technical equipment, demanding life situations, or needs of health care from many sectors or units. Furthermore, the interviewees justified their own involvement arguing that they possessed valuable competence of need for the patient, that they had known the individual patient over time or that they had a special knowledge of the condition, treatment, and health service organization from which the patient needed services. I am chief physician here, and in charge of the treatment. I know the patients. I know what has happened and which complications to look for. I am in a “flow zone” in a way. Moreover, when you know the others well, you know how they think, and you don’t have to say so much. (Specialized physician, coordinator early phase of rehabilitation after brain injury) The fear is what leads to many admissions I believe. Feeling insecure and not taken care of – one will be admitted to hospital more easily than if one feels safe at home. (Nurse, outpatient clinic, patients with lung cancer)
Discussion
The common feature of the studied coordination work was to “keep one step ahead”. The scope of the interviewees’ coordination activities varied from transferring follow-up responsibility to another provider, via implementing a planned pathway, to organizing long-term multidisciplinary teamwork adjusted to complex and shifting needs across care contexts. All interviewees presented practices where they strived to balance the perceived coordination needs of the patients and the opportunities in their contexts. The interviewees told of how they employed their experience, knowledge, and sensitivity both when defining their patients’ needs and when searching for resources that could be allocated to orchestrate care coordination. While some justified the coordination activities by referring to mandated roles, planned pathways or guidelines, others focused on complex patient needs, multidisciplinary working routines, care quality, or on their own knowledge and network.
This study comes with a few limitations as well as strengths. We aimed at investigating a variety of coordination work, through the experiences of health-care providers, in contexts relevant for implementing the new statutory care coordinator role. The recruitment strategy enabled identifying a diversity of experiences with care coordination directed at ensuring continuity for patients with complex needs. All participants had extensive experience with coordination work, thus representing high specificity of experiences. Our approach permitted identifying both commonalities and variation of coordination work across settings in hospitals. However, the recruitment process might have favored interviewees standing out as especially active and engaged in care coordination, thus biasing our sample toward those with greater autonomy than most. Eleven out of sixteen interviewees were nurses. This may reflect that coordination responsibility is more closely aligned with nursing than other professional roles. With a broader professional diversity, we might have captured a wider variation of coordination activities in hospitals.
While the individual interviews allowed detailed descriptions of one coordinator’s role and context, the group interviews provided reflections around coordination activities between health-care providers in different roles and contexts. This combination of interview types contributed to rich data, as well as increasing the diversity of coordination activities presented. There is, however, a trade-off between width and depth in qualitative cross-case studies. By applying the concept of information power, 39 we argue that the design and size of our sample meet the requirements considering our explorative study aim. A limitation is that the analysis is based exclusively on interview data. Field observations could have enriched our data and strengthened our findings. However, coordination activities cannot be easily observed since they take place intermittently, in various places, and include merely a selection of the patients in the wards or units. It would also have strengthened the quality of the study if the interviewees were given the possibility to review and to give feedback on the interviews transcripts and findings.
Keeping one step ahead, by taking a future perspective on the patients’ needs, was the central approach in the coordination activities conducted by the interviewees in our study. Both those in designated coordination positions and clinicians taking on coordination responsibility told of how they extended their regular roles and responsibility to ensure continuity for their patients. Previous research has highlighted the extended role as a characteristic of being a care coordinator.15,16,40 Bradway et al. 15 describe nurses going “above and beyond” their role and responsibility and doing whatever was necessary to provide continuity for the individual patient in a study of implementing a new care coordinator role. However, the clinicians taking on informal coordination roles did not tell much about discussions with leaders and colleagues to make care coordination possible. The way they described their role in this type of work is similar to how hospital nurses conceptualized clinical autonomy in a Canadian study: 41 Namely, as the ability to accomplish patient care goals through interdependent work as part of the health-care team where their knowledge and skills were recognized, valued, and acknowledged by the collaborators. 41
Further, the interviewees in our study also described several constraints related to “staying in front of things.” Other studies have found that providers in hospitals experience challenges in negotiating a coordinator role and in applying a comprehensive patient-centered perspective when coordinating what they consider being of importance for their patients.21,27,28 In a Danish study, the nursing staff in an acute medical department felt that their professional values of providing continuity of care were overpowered by the medical and episodic focus. 28 Our interviewees expressed, on the other hand, that they managed to create opportunities for patients they considered being particularly in need of continuity support. Furthermore, we found that our interviewees adjusted the continuity ambitions on behalf of their patients to what they considered doable regarding which types of continuity 42 and which degree of integration 43 they aimed at.
The Norwegian legal requirement for hospitals to appoint personal coordinators to secure continuity in the care trajectories for patients with complex long-term needs 33 has not led to the anticipated results. 44 Other studies from Norway report that providers have been reluctant to adopt the personal responsibility for individual care plans and ensuring continuity for patients according to laws and regulations.17,32 We found that there were providers who did take on personal responsibility for coordination aiming at continuity of care for selected patients, which in many ways were similar to the new statutory role. However, none of the interviewees in our study described their coordination activities as carrying out the statutory care coordinator role. 45 Our interpretation is that the coordination responsibility that the interviewees in our study took on was defined and delimited by the providers themselves within the opportunities and constraints in their working context. Thus, the scope and extent of the coordination activities was developed through a bottom-up process, resulting in personal and context-sensitive coordinator roles.
The expectations toward the statutory patient coordinator role, as it is described in Norwegian policy documents, are extensive but vague when it comes to aim, scope, target group, and responsibility. 45 Miller et al. has studied the implementation of an ambiguous care coordinator role from the perspective of nurse role holders. 21 They concluded that when there is role ambiguity, those having the role need information, rules, or prototypes to fall back on to make sense and get guidance. Doessing and Burau point out that support of coordination initiatives must be on both organizational, professional, and managerial level. 29 Furthermore, as referenced in the introduction, there are several approaches to improve continuity for hospital patients.11–14 While some coordination measures are visible and established in organizational structures, procedures, or formalized roles like case managers 14 or care coordinators, 30 much of the coordination activities identified in our study is either performed outside such structures or goes beyond them.
The interviewees described how they continuously orchestrated individualized solutions within the frames and opportunities of current practice.
They were negotiating continuity for selected patients by knowing “the name of the game.” This is in line with how Allen in a study of hospital nurses’ organizing work 19 found that the nurses had a “trajectory awareness” that they applied in their management of care. Moreover, this was often invisible work dependent on skills that were built over time and in the current context. Based on our study of health-care providers’ coordination experiences from various hospital settings, we suggest that there is a need of flexible support and available infrastructural resources adapted to the providers’ needs and to the current hospital contexts to enhance coordination activities in order to secure continuity of care for patients with complex needs. 33
A common feature of coordination work in hospitals across patient groups and settings was found to be that health-care providers involved “keep one step ahead” to create continuity of care for patients with complex long-term needs. In doing so, they maneuver in the systems by utilizing structural resources such as work routines, team organization, or planned pathways as well as exercising clinical autonomy to extend their role, allocate time, and employ appropriate ways of working.
To succeed with efforts to reduce fragmentation of services for patients with complex needs, there is need for improving visibility and acknowledgement of ongoing coordination work that goes beyond established workflow routines and clinical pathways.
Footnotes
Acknowledgements
We are grateful to the interviewees for taking the time and for sharing their experiences and to the Coordination Units in the hospitals for organizing the recruitment and the practicalities around the interviews.
Author contributions
AH conducted all the interviews individually, except from one group interview that was conducted together with DG. AH did the coding. The analysis was a joint process between all authors. AH drafted the manuscript. All authors contributed to the subsequent manuscript drafts and approved the final manuscript.
Availability of data and materials
The datasets generated during and/or analyzed during the current study are not publicly available due to restrictions in consent from interviewees.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is part of a PhD project funded by the Regional Health Authorities of Northern Norway: Helse Nord RHF.
Ethics
The study was approved by the Data Protection Official for Research at the University Hospital where the project is organized.
Research team—reflexivity
The first author (AH) is a PhD student, educated as an occupational therapist. Prior to the study, she worked in an advisory position supporting Coordination Units in the hospitals within one health region in planning and implementing the new statutory care coordinators for patients with complex or long-term needs of care. Hence, she had access to a network of Coordination Units in Norwegian hospitals. These units were approached with a question of contacting clinics in their hospitals to recruit candidate interviewees for the study. AH did not know the interviewees, and had no working relation to any of them. The coauthors are experienced researchers in the field of health service research with professional background as psychologist (DG), physician (GB), and sociology (AS).
