Personal strengths reported by people with chronic illness: A qualitative study.

BACKGROUND: Self-management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person-centred approaches into health care. OBJECTIVE: To explore what people with chronic illness describe as their strengths relevant to their health and well-being. SETTING AND PARTICIPANTS: Thirty-nine participants (11 men) from 4 outpatient self-management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis. RESULTS: A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self-management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health-care providers. Self-management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help. DISCUSSION AND CONCLUSION: The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person-centred approaches into health care.

Transitions from biomedical to recovery-oriented practices in mental health: a scoping review to explore the role of Internet-based interventions.

BACKGROUND: The Internet is transforming mental health care services by increasing access to, and potentially improving the quality of, care. Internet-based interventions in mental health can potentially play a role in transitions from biomedical to recovery-oriented research and practices, but an overview of what this may entail, current work, and issues that need addressing, is lacking. The objective of this study is to describe Internet-based recovery-oriented interventions (referred to as e-recovery) and current research, and to identify gaps and issues relevant to advancing recovery research and practices through opportunities provided by the Internet. METHODS: Five iterative stages of a scoping review framework were followed in searching and analyzing the literature. A recovery framework with four domains and 16 themes was used to deductively code intervention characteristics according to their support for recovery-oriented practices. Only Internet-based interventions used in conjunction with ongoing care were included. RESULTS: Twenty studies describing six e-recovery interventions were identified and originated in Australia, Finland, the Netherlands, Norway and USA. The domain supporting personal recovery was most clearly reflected in interventions, whereas the last three domains, i.e., promoting citizenship, organizational commitment and working relationship were less evident. Support for the formulation and follow-up of personal goals and preferences, and in accessing peer-support, were the characteristics shared by most interventions. Three of the six studies that employed a comparison group used randomization, and none presented definitive findings. None used recovery-oriented frameworks or specific recovery outcome measures. Four of the interventions were specific to a diagnosis. CONCLUSION: Research about how technologies might aid in illuminating and shaping recovery processes is in its formative stages. We recommend that future e-recovery research and innovation attend to four dimensions: evidence-supported interventions, new knowledge about personal recovery, values-based approaches and Internet as a facilitator for organizational transformation. The incremental changes facilitated by e-recovery may help propel a shift in mental health care toward recovery-oriented practices.

Using the Consolidated Framework for Implementation Research to Identify Barriers and Facilitators for the Implementation of an Internet-Based Patient-Provider Communication Service in Five Settings: A Qualitative Study.

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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. CLINICALTRIAL: Clinicaltrials.gov NCT00971139; http://clinicaltrial.gov/ct2/show/NCT00971139 (Archived by WebCite at http://www.webcitation.org/6cWeqN1uY).

Middle Managers' Experiences and Role in Implementing an Interactive Tailored Patient Assessment eHealth Intervention in Clinical Practice.

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.

Comparing effects in regular practice of e-communication and Web-based self-management support among breast cancer patients: preliminary results from a randomized controlled trial.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: Clinicaltrials.gov:NCT00971009; http://clinicaltrials.gov/show/NCT00971009 (Archived by WebCite at http://www.webcitation.org/6USKezP0Y).

Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care.

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.

Living close to a person with cancer: a review of the international literature and implications for social work practice.

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 1,643 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 a social worker's awareness of an FC's challenging situation and the potential impact this has on the FC's ability to provide care to the patient.

Effects of an interactive tailored patient assessment on patient-clinician communication in cancer care.

BACKGROUND: To test the effect of Choice, an interactive tailored patient assessment (ITPA) tool on the number and types of symptoms addressed during consultations with cancer patients, cancer patients' active participation during consultation with clinicians, and clinicians' responses. METHOD: A total of 193 consultations were audio taped and coded with the task-oriented part of Roter Interactive Assessment System. In addition, we recorded the initiator of each coded utterance (clinician or patient) as defined by Verona Coding Definitions of Emotional Sequences and indicated the symptoms addressed in a list of all symptoms within the Choice ITPA. Of the 193 consultations, 99 were standard consultations that served as a control group. In the 94 intervention group consultations, patients utilized the Choice ITPA prior to the consultation, and the assessment summary was available to both patients and clinicians. We compared the two groups in both multilevel and multivariate analyses. RESULTS: We found significantly more symptoms addressed in the intervention group as compared with the control group. We also found that the patients asked more questions in the intervention group, indicating that they were more active participants when utilizing Choice. The clinicians also provided more information in the intervention group. CONCLUSION: The Choice ITPA was successful in making cancer patients more active participants in the consultation with their clinician.

Patients' reported reasons for non-use of an internet-based patient-provider communication service: qualitative interview study.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: This qualitative study was based on individual interviews with 22 patients who signed up for, but did not use, the IPPC. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: ClinicalTrials.gov NCT00971139; http://clinicaltrial.gov/ct2/show/NCT00971139 (Archived by WebCite at http://www.webcitation.org/6KlOiYJrW).

How user characteristics affect use patterns in web-based illness management support for patients with breast and prostate cancer.

BACKGROUND: 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. OBJECTIVE: To explore user characteristics associated with the use of different system components of a Web-based illness management support system for cancer patients (WebChoice). METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: ClinicalTrials.gov NCT00710658; http://clinicaltrials.gov/ct2/show/NCT00710658 (Archived by WebCite at http://www.webcitation.org/6EmEWZiwz).

Children's expressions of negative emotions and adults' responses during routine cardiac consultations.

OBJECTIVE: One function of expressing emotion is to receive support. The aim of this study was to assess how children with heart disease express negative emotions during routine consultations, and examine the interaction between children's expressions and adults' responses. METHODS: Seventy children, aged 7-13 years, completed measures of anxiety and were videotaped during cardiology visits. Adult-child interactions were analyzed using the Verona Definitions of Emotional Sequences. RESULTS: Children expressed negative emotion, mainly in subtle ways; however, adults rarely recognized and responded to these expressions. The frequency of children's expressions and adults' responses were related to the child's age, level of anxiety, and verbal participation. CONCLUSION: Children do not openly express negative emotions frequently during routine cardiac consultations; they are more likely to provide subtle cues of negative emotion. When expression of negative emotions does occur, adults may consider using the opportunity to explore the child's emotional experiences.

To live close to a person with cancer--experiences of family caregivers.

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.

Review of the literature on the effects of caring for a patient with cancer.

OBJECTIVE: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience. METHODS: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient. RESULTS: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified. CONCLUSION: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life.

Patient centeredness in terminologies: coverage of health assets concepts in the International Classification of Nursing Practice.

Health assets has emerged as an important concept in health care, representing patients' strengths and perspectives, but has not received much attention in structured vocabularies or classification systems of nursing care to date. The purpose of this study was to explore the representation of health assets concepts in the International Classification of Nursing Practice(R) (ICNP). Concepts from a conceptual model of health assets were cross-mapped to the ICNP terminology system version 2.0. Thirty-three of 76 health assets concepts/terms were represented in the ICNP. However, several health assets categories and subcategories were missing or embedded in the descriptors of other ICNP concepts/terms. A number of ICNP terms did not include positive statements consistent with the health assets approach, and many terms reflected the objectiveness of a clinician's perspective rather than a patient's strength perspective. ICNP would benefit from the inclusion of additional health assets concept to reflect and support patient-centered nursing care as well as the patient's empowerment and self-management of health.

Cancer patients' questions and concerns expressed in an online nurse-delivered mail service: preliminary results.

Internet-based online patient-nurse communication (OPNC) services can constitute an important opportunity to support patients to manage their illness between treatment and rehabilitation while being at home. We explored the content of messages sent by prostate and breast cancer patients to an OPNC service to identify symptoms, problems, concerns and information needs expressed in these messages. Using qualitative content analyses we examined 276 messages sent from 38 breast and 22 prostate cancer patients during 15 months. Two main themes emerged: Concerns about physical symptoms and treatment side effects; and worries and questions about treatment and follow up. Analyses showed that cancer patients have many serious unanswered questions and concerns that can create considerable uncertainty and anxiety. An OPNC service can to a great extent meet patients' need for advice and information and thus be an important health care supplement that can improve quality of care.

Congruence between nursing problems in nursing care plans and NANDA nursing diagnoses.

This study abstracted nursing problems documented in cancer patients' nursing care plans to analyze (1) which nursing problems were documented and (2) the degree of congruence between the abstracted problems and NANDA nursing diagnoses. 236 unique nursing problems were identified and could be mapped to 32 NANDA nursing diagnoses. However, only 4.3% had a precise match with NANDA, Thirty-eight percent were classified as similar and the rest were broader, narrower or no match. Thus NANDA only partially covered problems written by nurses in the care plans for this group of patients.

User requirements for a practice-integrated nurse-administered online communication service for cancer patients.

This paper describes the use of participatory design methods in the development of a nurse-administered online patient-provider communication (OPPC) service that is designed to be integrated into routine clinical practice. The OPPC service let patients stay connected with expert nurses and other health care providers to ask questions and receive advice from home. Through focus groups, workshops, heuristic evaluations and usability testing, we identified patients' and clinicians' (nurses' and physicians') user requirements, factors important for successful adoption, implementation and maintenance of the OPPC service, and usability. This paper shares important insights from these participatory design processes that may be helpful for other researchers who wish to implement clinical applications into routine practice.

Representation of patients' health asset concepts in the International Classification of Nursing Practice (ICNP).

The purpose of this study was to evaluate the representation of health asset concepts in the International Classification of Nursing Practice (ICNP). In a previous study we conducted a concept analysis of health assets, building a conceptual model. The terms included in our conceptual model were cross-mapped to the ICNP terminology system, Version 1.0/1.1. Most of the health asset terms in the conceptual model were represented in ICNP. However, for maximum support of both clinical nursing care and patient self-care, a complete set of health asset terms is needed in the ICNP. We advocate for more research to uncover patients' and clinicians' detailed use of health asset terms. This should result in a richer and more specific health assets vocabulary that could be integrated into ICNP or other nursing terminologies as a means to improve nursing care and to strengthen patients' self-management of their illnesses. However, the findings from this first evaluation of health asset terms in the ICNP are promising, at least on a global level.

Participatory design with children in the development of a support system for patient-centered care in pediatric oncology.

Developing software for children with severe illness poses a number of design challenges. In this paper we describe participatory design methods used in the development of SISOM, a support system for children with cancer age 7-12 to help children elicit and report their symptoms/problems in a child-friendly, age-adjusted manner, and to assist clinicians at the point of care in addressing and integrating children's reported symptoms and problems in patient care. The particular design challenges in the development of a clinical support tool for seriously ill children are described, followed by the participatory design techniques we used to meet these challenges. Healthy children and children with cancer participated actively in different stages of the design process. We describe how children contributed to the graphical design of the system's interface; selection of understandable, child-friendly terms used in the system; iconic and graphical representations; and its usability. The methods applied helped us to significantly improve and adapt SISOM to children's cognitive and emotional developmental stage. Working with children as partners in the design also provided important insights into the role children can play in participatory design that may be helpful for other system developers who wish to design support applications for ill children. Children had very creative design ideas that considerably improved the software. However, system development for seriously ill children also requires psychological and pedagogical insights and design and usability expertise. This limits the role children can play as full design partners.

Developing a shared electronic health record for patients and clinicians.

Improving Shared Decision Making (SDM) and patient-provider communication, and providing all citizens with equal access to health information has become a high priority health policy goal. In this interdisciplinary, international research collaboration we develop and test CONNECT (Care Online: Novel Networks to Enhance Communication and Treatment), a patient portal that integrates a suite of context-sensitive patient communication and information tools into a patient-clinician shared electronic health record that patients can use seamlessly through heterogeneous networks from different locations (home, hospital, doctor's office). In this paper we present methods used to develop CONNECT; how to safeguard data security and confidentiality and adapt user interfaces to different users, devices and contexts of use; as well as ensure safe and efficient data transfer through heterogeneous networks; and critical success factors and challenges.