[Show abstract][Hide abstract] ABSTRACT: Objectives:
Patients with complex long-term needs experience multiple parallel care processes, which may have conflicting or competing goals, within their individual patient trajectory (iPT). The alignment of multiple goals is often implicit or non-existent, and has received little attention in the literature.
(1) What goals for care relevant for the iPT can be identified from the literature? (2) What goal typology can be proposed based on goal characteristics? (3) How can professionals negotiate a consistent set of goals for the iPT?
Document content analysis of health service research papers, on the topic of 'goals for care'.
With the increasing prevalence of multimorbidity, guidance regarding the identification and alignment of goals for care across organisations and disciplines is urgently needed.
70 papers that describe 'goals for care', 'health' or 'the good healthcare process' relevant to a general iPT, identified in a step-wise structured search of MEDLINE, Web of Science and Google Scholar.
We developed a goal typology with four categories. Three categories are professionally defined: (1) Functional, (2) Biological/Disease and (3) Adaptive goals. The fourth category is the patient's personally defined goals. Professional and personal goals may conflict, in which case goal prioritisation by creation of a goal hierarchy can be useful. We argue that the patient has the moral and legal right to determine the goals at the top of such a goal hierarchy. Professionals can then translate personal goals into realistic professional goals such as standardised health outcomes linked to evidence-based guidelines. Thereby, when goals are aligned with one another, the iPT will be truly patient centred, while care follows professional guidelines.
Personal goals direct professional goals and define the success criteria of the iPT. However, making personal goals count requires brave and wide-sweeping attitudinal, organisational and regulatory transformation of care delivery.
[Show abstract][Hide abstract] ABSTRACT: Background:
Although there is growing evidence of the positive effects of Internet-based patient-provider communication (IPPC) services for both patients and health care providers, their implementation into clinical practice continues to be a challenge.
The 3 aims of this study were to (1) identify and compare barriers and facilitators influencing the implementation of an IPPC service in 5 hospital units using the Consolidated Framework for Implementation Research (CFIR), (2) assess the ability of the different constructs of CFIR to distinguish between high and low implementation success, and (3) compare our findings with those from other studies that used the CFIR to discriminate between high and low implementation success.
This study was based on individual interviews with 10 nurses, 6 physicians, and 1 nutritionist who had used the IPPC to answer messages from patients.
Of the 36 CFIR constructs, 28 were addressed in the interviews, of which 12 distinguished between high and low implementation units. Most of the distinguishing constructs were related to the inner setting domain of CFIR, indicating that institutional factors were particularly important for successful implementation. Health care providers' beliefs in the intervention as useful for themselves and their patients as well as the implementation process itself were also important. A comparison of constructs across ours and 2 other studies that also used the CFIR to discriminate between high and low implementation success showed that 24 CFIR constructs distinguished between high and low implementation units in at least 1 study; 11 constructs distinguished in 2 studies. However, only 2 constructs (patient need and resources and available resources) distinguished consistently between high and low implementation units in all 3 studies.
The CFIR is a helpful framework for illuminating barriers and facilitators influencing IPPC implementation. However, CFIR's strength of being broad and comprehensive also limits its usefulness as an implementation framework because it does not discriminate between the relative importance of its many constructs for implementation success. This is the first study to identify which CFIR constructs are the most promising to distinguish between high and low implementation success across settings and interventions. Findings from this study can contribute to the refinement of CFIR toward a more succinct and parsimonious framework for planning and evaluation of the implementation of clinical interventions.
Clinicaltrials.gov NCT00971139; http://clinicaltrial.gov/ct2/show/NCT00971139 (Archived by WebCite at http://www.webcitation.org/6cWeqN1uY).
Full-text · Article · Nov 2015 · Journal of Medical Internet Research
[Show abstract][Hide abstract] ABSTRACT: To test seven different strategies for recruitment in a randomized controlled trial, to report documented response data from each strategy, and to discuss recruitment challenges.
We used 5 opt-in (potential participants have to do something active to contact or be contacted by the researcher) and 2 opt-out (potential participants have the option to decline being contacted about a study) recruitment strategies from February 2013 until July 2014 to contact 1562 cancer patient candidates for participation in a randomized controlled trial. For each of these cancer patients a caregiver was also invited to take part in the study.
Of the 1562 candidates, 22.6 % were ineligible on initial contact, 56.7 % declined to participate on initial contact, and 8.9 % agreed orally to participate but did not complete the enrollment. The 2 opt-out strategies, on-site recruitment and routine care letters recruitment, yielded the highest number of recruited participants with 79 dyads and 58 dyads respectively, constituting 42.7 % and 31.4 % of the total number of enrolled candidates. The 5 opt-in recruitment approaches yielded 49 dyads for the study. Almost half of these dyads were recruited using the approach termed “relying on providers at the hospital.”
In this study, opt-out recruitment strategies appeared to be the most effective.
Registration number NCT01867723, registered February 2012.
[Show abstract][Hide abstract] ABSTRACT: The role of nurse and physician managers is considered crucial for implementing eHealth interventions in clinical practice, but few studies have explored this. The aim of the current study was to examine the perceptions of nurse and physician managers regarding facilitators, barriers, management role, responsibility, and action taken in the implementation of an eHealth intervention called Choice into clinical practice. Individual qualitative interviews were conducted with six nurses and three physicians in management positions at five hospital units. The findings revealed that nurse managers reported conscientiously supporting the implementation, but workloads prevented them from participating in the process as closely as they wanted. Physician managers reported less contribution. The implementation process was influenced by facilitating factors such as perceptions of benefits from Choice and use of implementation strategies, along with barriers such as physician resistance, contextual factors and difficulties for front-line providers in learning a new way of communicating with the patients. The findings suggest that role descriptions for both nurse and physician managers should include implementation knowledge and implementation skills. Managers could benefit from an implementation toolkit. Implementation management should be included in management education for healthcare managers to prepare them for the constant need for implementation and improvement in clinical practice.
No preview · Article · May 2015 · Computers, informatics, nursing: CIN
[Show abstract][Hide abstract] ABSTRACT: Information and communication technologies (ICT) are key to optimizing the outcomes of the Chronic Care Model (CCM), currently acknowledged as the best synthesis of available evidence for chronic illness prevention and management. At the same time, CCM can offer a needed framework for increasing the relevance and feasibility of ICT innovation and research in health care. Little is known about how and to what extent CCM and ICT research inform each other to leverage mutual strengths. The current study examines: What characterizes work being done at the crossroads of CCM and ICT research and innovation?
Our aim is identify the gaps and potential that lie between the research domains CCM and ICT, thus enabling more substantive questions and opportunities for accelerating improvements in ICT-supported chronic care.
Using a scoping study approach, we developed a search strategy applied to medical and technical databases resulting in 1054 titles and abstracts that address CCM and ICT. After iteratively adapting our inclusion/exclusion criteria to balance between breadth and feasibility, 26 publications from 20 studies were found to fulfill our criteria. Following initial coding of each article according to predefined categories (eg, type of article, CCM component, ICT, health issue), a 1st level analysis was conducted resulting in a broad range of categories. These were gradually reduced by constantly comparing them for underlying commonalities and discrepancies.
None of the studies included were from technical databases and interventions relied mostly on "old-fashioned" technologies. Technologies supporting "productive interactions" were often one-way (provider to patient), and it was sometimes difficult to decipher how CCM was guiding intervention design. In particular, the major focus on ICT to support providers did not appear unique to the challenges of chronic care. Challenges in facilitating CCM components through ICT included poorly designed user interfaces, digital divide issues, and lack of integration with existing infrastructure.
The CCM is a highly influential guide for health care development, which recognizes the need for alignment of system tools such as ICT. Yet, there seem to be alarmingly few touch points between the subject fields of "health service development" and "ICT-innovation". Bridging these gaps needs explicit and urgent attention as the synergies between these domains have enormous potential. Policy makers and funding agencies need to facilitate the joining of forces between high-tech innovative expertise and experts in the chronic care system redesign that is required for tackling the current epidemic of long-term multiple conditions.
No preview · Article · Feb 2015 · Journal of Medical Internet Research
[Show abstract][Hide abstract] ABSTRACT: While Web-based interventions have been shown to assist a wide range of patients successfully in managing their illness, few studies have examined the relative contribution of different Web-based components to improve outcomes. Further efficacy trials are needed to test the effects of Web support when offered as a part of routine care.
Our aim was to compare in regular care the effects of (1) an Internet-based patient provider communication service (IPPC), (2) WebChoice, a Web-based illness management system for breast cancer patients (IPPC included), and (3) usual care on symptom distress, anxiety, depression, (primary outcomes), and self-efficacy (secondary outcome). This study reports preliminary findings from 6 months' follow-up data in a 12-month trial.
We recruited 167 patients recently diagnosed with breast cancer and undergoing treatment from three Norwegian hospitals. The nurse-administered IPPC allowed patients to send secure e-messages to and receive e-messages from health care personnel at the hospital where they were treated. In addition to the IPPC, WebChoice contains components for symptom monitoring, tailored information and self-management support, a diary, and communication with other patients. A total of 20 care providers (11 nurses, 6 physicians, and 3 social workers) were trained to answer questions from patients. Outcomes were measured with questionnaires at study entry and at study months 2, 4, and 6. Linear mixed models for repeated measures were fitted to compare effects on outcomes over time.
Patients were randomly assigned to the WebChoice group (n=64), the IPPC group (n=45), or the usual care group (n=58). Response rates to questionnaires were 73.7% (123/167) at 2 months, 65.9 (110/167) at 4 months, and 62.3% (104/167) at 6 months. Attrition was similar in all study groups. Among those with access to WebChoice, 64% (41/64) logged on more than once and 39% (25/64) sent e-messages to care providers. In the IPPC group, 40% (18/45) sent e-messages. Linear mixed models analyses revealed that the WebChoice group reported significantly lower symptom distress (mean difference 0.16, 95% CI 0.06-0.25, P=.001), anxiety (mean difference 0.79, 95% CI 0.09-1.49, P=.03), and depression (mean difference 0.79, 95% CI 0.09-1.49, P=.03) compared with the usual care group. The IPPC group reported significant lower depression scores compared with the usual care group (mean difference 0.69, 95% CI 0.05-1.32, P=.03), but no differences were observed for symptom distress or anxiety. No significant differences in self-efficacy were found among the study groups.
In spite of practice variations and moderate use of the interventions, our results suggest that offering Web support as part of regular care can be a powerful tool to help patients manage their illness. Our finding that a nurse-administered IPPC alone can significantly reduce depression is particularly promising. However, the multicomponent intervention WebChoice had additional positive effects.
Clinicaltrials.gov:NCT00971009; http://clinicaltrials.gov/show/NCT00971009 (Archived by WebCite at http://www.webcitation.org/6USKezP0Y).
Full-text · Article · Dec 2014 · Journal of Medical Internet Research
[Show abstract][Hide abstract] ABSTRACT: Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals' perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients' in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals' perceptions of FCs during the patient's in-hospital cancer care: an asset and additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC's needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient.
Full-text · Article · Nov 2014 · Journal of Family Nursing
[Show abstract][Hide abstract] ABSTRACT: Mobile phones and tablets currently represent a significant presence in people's everyday lives. They enable access to different information and services independent of current place and time. Such widespread connectivity offers significant potential in different app areas including health care.
[Show abstract][Hide abstract] ABSTRACT: Web-based self-management support systems SMSS, can successfully assist a wide range of patients with information and self-management support. O or as a stand-alone service, are e-messages. This study describes how one component of a multi component SMSS, an e-message service, in which patients with breast cancer could direct questions to nurses, physicians or social workers at the hospital where they were being treated, had an influence on safety and continuity of care. Ninety-one dialogues consisting of 284 messages were analysed. The communications between patients and the healthcare team revealed that the e-messages service served as a means for quality assurance of information, for double-checking and for coordination of care. We give examples of how an e-mail service may improve patients' knowledge in a process of taking control over their own care - increasingly important in a time of growing complexity and specialization in healthcare. It remains to be tested whether an e-message service can improve continuity of care and prevent or mitigate medical mishaps.
Full-text · Article · Jun 2014 · Studies in health technology and informatics
[Show abstract][Hide abstract] ABSTRACT: Abstract To help family caregivers (FCs), social workers need to understand the complexity of FC's experiences and challenges. For this systematic review, several relevant, multidisciplinary electronic databases were searched. Of 1643 titles identified, 108 articles met the inclusion criteria and are included in this review. Various experiences, symptoms and burden related to caregiving responsibilities are described and discussed. The understanding evolving from this study about the FC's own health risk, caregiver burden and experiences over time can enhance social worker's awareness of FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.
Full-text · Article · Mar 2014 · Journal of Gerontological Social Work
[Show abstract][Hide abstract] ABSTRACT: This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals' awareness of FCs' challenging situation and the potential impact this has on the FCs' ability to provide care to the patient.
Full-text · Article · Mar 2014 · Social Work in Health Care
[Show abstract][Hide abstract] ABSTRACT: Developed in Norway, Sisom is an interactive, rigorously tested, computerized, communication tool designed to help children with cancer express their perceived symptoms/problems. Children travel virtually from island to island rating their symptoms/problems. While Sisom has been found to significantly improve communication in patient consultations in Norway, usability testing is warranted with US children prior to further use in research studies.
The objective of this study was to determine the usability of Sisom in a sample of English- and Spanish-speaking children in an urban US community.
A mixed-methods usability study was conducted with a purposive sample of healthy children and children with cancer. Semistructured interviews were used to assess healthy children's symptom recognition. Children with cancer completed 8 usability tasks captured with Morae 3.3 software. Data were downloaded, transcribed, and analyzed descriptively.
Four healthy children and 8 children with cancer participated. Of the 44 symptoms assessed, healthy children recognized 15 (34%) pictorial symptoms immediately or indicated 13 (30%) pictures were good representations of the symptom. Six children with cancer completed all tasks. All children navigated successfully from one island to the next, ranking their symptom/problem severity, clicking the magnifying glass for help, or asking the researcher for assistance. All children were satisfied with the aesthetics and expressed an interest in using Sisom to communicate their symptoms/problems.
A few minor suggestions for improvement and adjustment may optimize the use of Sisom for US children.
Sisom may help clinicians overcome challenges assessing children's complex symptoms/problems in a child-friendly manner.
[Show abstract][Hide abstract] ABSTRACT: The adoption of Internet-based patient-provider communication services (IPPC) in health care has been slow. Patients want electronic communication, and the quality of health care can be improved by offering such IPPCs. However, the rate of enrollment in such services remains low, and the reasons for this are unclear. Knowledge about the barriers to use is valuable during implementation of IPPCs in the health care services, and it can help timing, targeting, and tailoring IPPCs to different groups of patients.
The goal of our study was to investigate patients' views of an IPPC that they could use from home to pose questions to nurses and physicians at their treatment facility, and their reported reasons for non-use of the service.
This qualitative study was based on individual interviews with 22 patients who signed up for, but did not use, the IPPC.
Patients appreciated the availability and the possibility of using the IPPC as needed, even if they did not use it. Their reported reasons for not using the IPPC fell into three main categories: (1) they felt that they did not need the IPPC and had sufficient access to information elsewhere, (2) they preferred other types of communication such as telephone or face-to-face contact, or (3) they were hindered by IPPC attributes such as login problems.
Patients were satisfied with having the opportunity to send messages to health care providers through an IPPC, even if they did not use the service. IPPCs should be offered to the patients at an appropriate time in the illness trajectory, both when they need the service and when they are receptive to information about the service. A live demonstration of the IPPC at the point of enrollment might have increased its use.
ClinicalTrials.gov NCT00971139; http://clinicaltrial.gov/ct2/show/NCT00971139 (Archived by WebCite at http://www.webcitation.org/6KlOiYJrW).
No preview · Article · Nov 2013 · Journal of Medical Internet Research
[Show abstract][Hide abstract] ABSTRACT: Despite evidence of benefits, integration of patient-centered communication in clinical practice is challenging. Interactive tailored patient assessment (ITPA) tools can contribute to a more patient-centered care approach. However, little research has examined the impact of such tools on nursing care once they have been implemented.
To explore nurses' experiences of the benefits of and barriers to using an ITPA called Choice, in cancer care one year after its implementation.
This investigation is a part of a larger study examining the use of Choice in cancer care. Four focus group interviews were conducted with 20 nurses experienced in using the Choice application. The data were analyzed using qualitative content analysis.
Three themes and nine sub-themes emerged: (1) "Choice as facilitator for shared understanding and engagement in patients' own care," with three sub-themes: preparing both patient and nurse for communication, shared engagement in care planning, and giving the patients a voice; (2) "enhancing the patients' strengths," with two sub-themes: releasing patient's internal strengths and confirming "normalcy" for the patient; and (3) "new challenges for the nurse," with four sub-themes: organizational challenges, interactions with technology, a need for training in communication skills, and new ethical challenges.
Findings suggest that, from nurses' perspectives, integration of ITPAs such as Choice in clinical practice offers many benefits that can contribute to patient-centered care. However, to reap these benefits, use of such tools must receive equal priority as other routines, and require sufficient time, space and competence. Choice also challenged nurses' professional roles and created dilemmas such as nurses' ambivalence regarding patients' levels of disclosure of sensitive issues and the nurses' ability to respond to them. Although patient-centered care is advocated as model for good clinical practice, this is not always internalized. Tools such as Choice may help to make such a shift happen.
Full-text · Article · Nov 2013 · International Journal of Medical Informatics
[Show abstract][Hide abstract] ABSTRACT: To investigate how patient, clinician and relationship characteristics may predict how oncologists and nurses respond to patients' emotional expressions.
Observational study of audiotapes of 196 consultations in cancer care. The consultations were coded according to Verona Coding Definitions of Emotional Sequences (VR-CoDES). Associations were tested in multi-level analyzes.
There were 471 cues and 109 concerns with a mean number of 3.0 (SD=3.2) cues and concerns per consultation. Nurses in admittance interviews were five times more likely to provide space for further disclosure of cues and concerns (according to VR-CoDES definitions) than oncologists in out-patient follow-up consultations. Oncologists gave more room for disclosure to the first cue or concern in the consultation, to more explicit and doctor initiated cues/concerns and when the doctor and/or patient was female. Nurses gave room for further disclosure to explicit and nurse initiated cues/concerns, but the effects were smaller than for oncologists.
Responses of clinicians which provide room for further disclosure do not occur at random and are systematically dependent on the source, explicitness and timing of the cue or concern.
Knowledge on which factors influence responses to cues and concerns may be useful in communication skills training.
[Show abstract][Hide abstract] ABSTRACT: While children with chronic illness can experience many physical, functional, and psychosocial symptoms and problems, they do not have the same verbal skills as adults to communicate about distressing symptoms, leaving them at particular risk that their problems remain under-diagnosed and treated. This study investigated the effects of an interactive communication tool for children with heart disease, called Sisom, on patient-provider communication in pediatric cardiology out-patient consultations. Fourty-two children aged 7–13 diagnosed with heart disease used Sisom in preparation for their consultation. The resulting summaries of the children's perceived problems were shared with their nurses and physicians for use during the consultation. A control group, matched on gender and age (n = 42), received usual care. All consultations were video-taped and analyzed with the Roter Interaction Analysis System. Compared to the control group, almost twice as many symptoms and problems were addressed when Sisom was used (10.7 vs. 5.9; P < 0.001), without increasing consultation time. Physicians provided significantly more information (4.9 vs. 3.5; P < 0.01); nurses asked more follow-up questions (4.0 vs. 2.2; P < 0.05); parents and health care providers directed their conversation more often towards the child (6.7 vs. 2.1; P < 0.001); and children participated more often with information (25.2 vs. 15.6; P < 0.05) and in discussions about medical topics (8.0 vs. 4.3; P < 0.05). While the small sample size necessitates cautious interpretation, study results suggest that Sisom can effectively improve patient-centred communication for children with heart disease in regular pediatric practice.
[Show abstract][Hide abstract] ABSTRACT: OBJECTIVE: The purpose of this paper was to describe patients' use of a multi-component eHealth application, WebChoice, designed to support cancer patients in illness management. With WebChoice patients can monitor their symptoms, obtain individually tailored, evidence-based self-management support, ask questions to a clinical nurse specialist, communicate with other patients in a Forum, and use a diary. METHODS: To better understand what components were most helpful, we analyzed user logs of breast and prostate cancer patients who participated in the experimental arm of an RCT to test effects of WebChoice on clinical outcomes. Patients could freely use the system for one year. After 6 months into the study, participants received questionnaires asking about reasons for using the different WebChoice components and their usefulness. RESULTS: 103 (64%) patients actively used WebChoice, on average 60 times. The Forum and asking questions to the nurse were used the most, yet there were large individual variations in use patterns. Also, patients used different WebChoice components for different reasons. The e-mail communication with nurses was valued highest. DISCUSSION: Differences were found between breast and prostate cancer patients and between patients with a first time diagnosis and metastases or recurrences. The large variations among patients in their use of WebChoice components demonstrate that patients' needs for support vary. CONCLUSION: The use patterns and patients' appraisals of usefulness in this study provide important insights into cancer patients' information and communication behavior that are important for further improvements and the design of eHealth applications for illness management support.
No preview · Article · Mar 2013 · International Journal of Medical Informatics