[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.
Journal of Family Nursing 11/2014; · 1.57 Impact Factor
[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.
[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.
Social Work in Health Care 03/2014; 53(3):289-309. · 0.62 Impact Factor
[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: 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.
Studies in health technology and informatics 01/2014; 201:328-34.
[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).
Journal of Medical Internet Research 01/2014; 16(12):e295. · 4.67 Impact Factor
[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: 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.
International Journal of Medical Informatics 11/2013; · 2.72 Impact Factor
[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.
Patient Education and Counseling 07/2013; · 2.60 Impact Factor
[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.
International Journal of Medical Informatics 03/2013; · 2.72 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: : Patients are experts of their own symptoms and worries, but tend not to express their concerns spontaneously in the consultation. Even when emotions are brought up, they are discussed briefly.
: The objective of this study was to examine the impact of an interactive tailored patient assessment (Choice) on communication of emotional cues and concerns expressed by cancer patients in terms of source of initiation of cues/concern, explicitness, timing during the consultation, and consultation type (inpatient/outpatient).
: We audiotaped and coded consultations between cancer patients and nurses or physicians in 1 control group (n = 99) with standard consultations and 1 intervention group (n = 97) where patients used Choice prior to the consultation. Direct and interaction effects were tested using multilevel analyses.
: In the Choice intervention group, there were significantly more frequent and more explicit expressions of cues and concerns; more clinician-initiated concerns occurred during the first 10 minutes; and it was more likely for any cue or concern to be succeeded by a subsequent one. In consultations with many cues/concerns, these were on average more emotionally descriptive or explicit and occurred somewhat earlier in the consultation in the Choice group. Furthermore, more cues/concerns were expressed in inpatient consultations with nurses than in outpatient consultations with physicians.
: Cancer patients' expressions of cues and concerns do not occur at random. More cues/concerns are expressed early in the consultation, in consultations with nurses, and in the Choice intervention group.
: Choice may be a useful clinical tool. Use of Choice might aid cancer patients in handling their emotions.
Cancer nursing 03/2013; 36(2):E20-30. · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Frequently eHealth applications are not used as intended and they have high attrition rates; therefore, a better understanding of patients' need for support is warranted. Specifically, more research is needed to identify which system components target different patient groups and under what conditions.
To explore user characteristics associated with the use of different system components of a Web-based illness management support system for cancer patients (WebChoice).
For this secondary post hoc analysis of a large randomized controlled trial (RCT), in which WebChoice was tested among 325 breast cancer and prostate cancer patients who were followed with repeated measures for 1 year, usage patterns of 162 cancer patients in the intervention arm with access to WebChoice were extracted from the user log. Logistic regression was performed to identify patterns of associations between system use and patient characteristics. Latent class analyses (LCA) were performed to identify associations among the use of different system components and levels of social support, symptom distress, depression, self-efficacy, and health-related quality of life.
Approximately two-thirds (103/162, 63.6%) of the patients logged on to WebChoice more than once, and were defined as users. A high level of computer experience (odds ratio [OR] 3.77, 95% CI 1.20-11.91) and not having other illnesses in addition to cancer (OR 2.10, 95% CI 1.02-4.34) increased the overall probability of using WebChoice. LCA showed that both men with prostate cancer and women with breast cancer who had low scores on social support accompanied with high levels of symptom distress and high levels of depression were more likely to use the e-message component. For men with prostate cancer, these variables were also associated with high use of the self-management advice component. We found important differences between men with prostate cancer and women with breast cancer when associations between WebChoice use and each user characteristic were analyzed separately. High use of all components was associated with low levels of social support among women with breast cancer, but not among men with prostate cancer. High use of e-messages, advice, and the discussion forum were associated with high levels of depression among women with breast cancer, but not among men with prostate cancer. For men with prostate cancer (but not women with breast cancer), high use of symptom assessments, advice, and the discussion forum were associated with high levels of symptom distress. However, it is unclear whether these findings can be attributed to differences related to diagnosis, gender, or both.
This study provides evidence that different user characteristics are associated with different use patterns. Such information is crucial to target Web-based support systems to different patient groups. LCA is a useful technique to identify subgroups of users. In our study, e-messages and self-management advice were highly used components for patients who had low levels of social support and high illness burden, suggesting that patients with these characteristics may find such tools particularly useful.
ClinicalTrials.gov NCT00710658; http://clinicaltrials.gov/ct2/show/NCT00710658 (Archived by WebCite at http://www.webcitation.org/6EmEWZiwz).
Journal of Medical Internet Research 01/2013; 15(3):e34. · 4.67 Impact Factor
[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).
Journal of Medical Internet Research 01/2013; 15(11):e246. · 4.67 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The purpose of this study was to obtain a deeper understanding of the experiences of Family Caregivers (FC) living close to a patient with cancer. This article reports on the findings from individual interviews with 15 FCs of patients with cancer. The interview transcripts were analyzed using qualitative hermeneutic analysis. This study revealed that living close to a cancer patient over the course of his or her illness affected many aspects of FCs lives in significant ways. Their experiences can be summarized with two major themes: (1) living in an ever changing life world and (2) balancing between conflicting interests and dilemmas. This study contributed to deeper insights into FC's experiences than previously reported in the literature.
Social Work in Health Care 11/2012; 51(10):909-926. · 0.62 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Interactive Health Communication Applications (IHCAs) are increasingly used in health care. Studies document that IHCAs provide patients with knowledge and social support, enhance self- efficacy and can improve behavioural and clinical outcomes. However, research exploring patients' experiences of using IHCAs has been scarce. The aim of this study was to explore cancer patients' perspectives and experiences related to the use of an IHCA called WebChoice in their homes. Qualitative interviews were conducted with infrequent, medium and frequent IHCA users-six women and four men with breast and prostate cancer. The interviews were transcribed and analyzed inspired by interactionistic perspectives. We found that some patients' perceived WebChoice as a "friend," others as a "stranger." Access to WebChoice stimulated particularly high frequency users to position themselves as "information seeking agents," assuming an active patient role. However, to position oneself as an "active patient" was ambiguous and emotional. Feelings of "calmness", "normalization of symptoms", feelings of "being part of a community", feeling "upset" and "vulnerable", as well as "feeling supported" were identified. Interaction with WebChoice implied for some users an increased focus on illness. Our findings indicate that the interaction between patients and an IHCA such as WebChoice occurs in a variety of ways, some of which are ambivalent or conflicting. Particularly for frequent and medium frequency users, it offers support, but may at the same time reinforce an element of uncertainty in their life. Such insights should be taken into consideration in the future development of IHCAs in healthcare in general and in particular for implementation into patients' private sphere.
International Journal of Qualitative Studies on Health and Well-Being 05/2012; 7. · 0.61 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: BACKGROUND:: Cancer patients experience many physical and psychosocial problems for which they need support. WebChoice is an Internet-based, interactive health communication application that allows cancer patients to monitor their symptoms and problems, provides individually tailored information and self-management support, e-communication with expert cancer nurses, and an e-forum for group discussion with other patients. OBJECTIVE:: The objective of this study was to examine the effects of WebChoice on symptom distress (primary outcome), depression, self-efficacy, health-related quality of life, and social support (secondary outcomes). METHODS:: In this 1-year repeated-measures randomized controlled trial, 325 breast and prostate cancer patients were randomized into 1 experimental group with access to WebChoice and 1 control group who received URLs of publicly available cancer Web sites. RESULTS:: Group differences on symptom distress were significant only for the global symptom distress index on the Memorial Symptom Assessment Scale (slope estimate, -0.052 [95% confidence interval, -0.101 to -0.004]; t = 4.42; P = .037). There were no significant group differences on secondary outcomes. Additional analyses showed significant within-group improvements in depression in the experimental group only. In the control group, self-efficacy and health-related quality of life deteriorated significantly over time. CONCLUSION:: The randomized controlled trial is one of the first to evaluate effects of an interactive health communication application to support cancer patients in illness management on symptoms. Although only 1 hypothesis was partially supported, the combined results show a clear trend toward better scores in the intervention group on most outcome measures. IMPLICATIONS FOR PRACTICE:: If findings can be supported with additional research, WebChoice may become an important tool to support nursing care that can equip cancer patients to better manage their illness.
[Show abstract][Hide abstract] ABSTRACT: To (1) investigate emotional cues and concerns (C&C) of cancer patients expressed in e-mail communication with oncology nurses in an online patient-nurse communication service (OPNC), and (2) explore how nurses responded to patients' C&C.
283 e-messages sent from 38 breast and 22 prostate cancer patients and 286 e-responses from five oncology nurses were coded with the Verona Coding Definitions of Emotional Sequences.
We identified 102 cues and 33 concerns expressed in patients' messages. Cues indicating expression of uncertainty or hope, occurred most frequently (in 38.5% of messages), followed by concerns (in 24.4% of messages). Nurses responded to 85.2% of patients' C&Cs; more than half of patients' C&Cs were met with a mixture of information giving and empathic responses.
Patients with breast and prostate cancer express many C&C in e-mail communications with oncology nurses, who demonstrated satisfactory sensitivity to patients' emotions in their responses to patients.
Offering e-communication with oncology nurses to cancer patients is a promising and feasible supplement to usual care to address and relieve patients' concerns and emotional distress during illness and recovery.
Patient Education and Counseling 02/2012; 88(1):36-43. · 2.60 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To some extent, electronic communication has supplemented nurses' face-to-face contact with patients over the last few years. In this paper, we report findings from a study in which we examined cancer nurses' answers to messages from testicular cancer patients in a nurse-managed online patient-provider communication service. The aim of the study was to investigate how nurses manage to meet patients' different questions and concerns, and what aspects of expert nursing care are demonstrated when they communicate with patients online. The content of the messages formed a continuum from practical to existential issues. In their answers, the nurses demonstrated an ability to make reflected choices between both support modalities and means of communication. The professional knowledge and care of expert cancer nurses were clearly exposed in the nurses' answers, although they were good at adapting their professional language so that it would be understandable to the patients.
Nursing informatics ... : proceedings of the ... International Congress on Nursing Informatics. 01/2012; 2012:453.