Mobile App to Help People With Chronic Illness Reflect on Their Strengths: Formative Evaluation and Usability Testing.

BACKGROUND: Supporting patient engagement and empowerment is increasingly seen as essential in providing person-centered health care to people with chronic illness. Mobile apps helping patients reflect on their concerns as preparation for consultations with their health care providers can have beneficial effects on the consultation quality. However, apps focusing on empowerment and personal strengths are still scarce. OBJECTIVE: This study aimed to (1) develop a mobile app to support patients with rheumatic diseases in reflecting on their strengths in preparation for consultations with health care providers and (2) explore patients' perceived usability of the app in a nonclinical test setting. METHODS: A prototype app was developed based on input from patients and health care providers, as reported in previous studies. The app was designed for use in self-management support settings aiming to promote awareness of strengths and to focus attention on strengths in the patient-health care provider dialogue. The features included in the prototype were as follows: (1) introduction to the topic of strengths, (2) list of examples of strengths to promote reflection and registration of own strengths, (3) summary of registered strengths, (4) value-based goal setting, (5) linking of strengths to goals, (6) summary of all registrations, and (7) options to share summary digitally or as a print version. In this study, the app was refined through a formative evaluation with patients and health care providers recruited from a specialized rheumatology hospital unit. Patients' perceptions of the app's usability were explored in a test setting with self-report measurements and semistructured interviews. The interviews were audiotaped, transcribed, and analyzed with directed content analysis. Data from questionnaires were analyzed with descriptive statistics. RESULTS: Developmental and formative evaluation included 18 patients and 7 health care providers. The evaluation resulted in minor adjustments to the prototype but no major changes in features. The usability testing included 12 patients. All participants found the usability acceptable; the median score on the System Usability Scale was 86.3 (range 70-100). All reported that it was meaningful and relevant to use the app. Out of 12 participants, 9 (75%) reported becoming more aware of their own strengths by using the app; 1 (8%) disagreed and 2 (17%) provided a neutral response. The results on the goal-related feature were mixed, with half of the patients finding it useful to link strengths to concrete goals. A statistically significant positive change from pre- to postintervention was identified on measures of self-efficacy and negative emotions. CONCLUSIONS: In this formative evaluation of a mobile app to promote patients' reflections on their strengths, patients perceived the app as meaningful and supporting awareness. The results suggest the usefulness of building in functionality to support use of strengths and goal attainment. Further studies on efficacy and usability in a clinical setting, including health care providers, are needed.

Creating Gameful Design in mHealth: A Participatory Co-Design Approach.

BACKGROUND: Gameful designs (gamification), using design pieces and concepts typically found in the world of games, is a promising approach to increase users' engagement with, and adherence to, electronic health and mobile health (mHealth) tools. Even though both identifying and addressing users' requirements and needs are important steps of designing information technology tools, little is known about the users' requirements and preferences for gameful designs in the context of self-management of chronic conditions. OBJECTIVE: This study aimed to present findings as well as the applied methods and design activities from a series of participatory design workshops with patients with chronic conditions, organized to generate and explore user needs, preferences, and ideas to the implementation of gameful designs in an mHealth self-management app. METHODS: We conducted three sets of two consecutive co-design workshops with a total of 22 participants with chronic conditions. In the workshops, we applied participatory design methods to engage users in different activities such as design games, scenario making, prototyping, and sticky notes exercises. The workshops were filmed, and the participants' interactions, written products, ideas, and suggestions were analyzed thematically. RESULTS: During the workshops, the participants identified a wide range of requirements, concerns, and ideas for using the gameful elements in the design of an mHealth self-management app. Overall inputs on the design of the app concerned aspects such as providing a positive user experience by promoting collaboration and not visibly losing to someone or by designing all feedback in the app to be uplifting and positive. The participants provided both general inputs (regarding the degree of competitiveness, use of rewards, or possibilities for customization) and specific inputs (such as being able to customize the look of their avatars or by having rewards that can be exchanged for real-world goods in a gift shop). However, inputs also highlighted the importance of making tools that provide features that are meaningful and motivating on their own and do not only have to rely on gameful design features to make people use them. CONCLUSIONS: The main contribution in this study was users' contextualized and richly described needs and requirements for gamefully designed mHealth tools for supporting chronic patients in self-management as well as the methods and techniques used to facilitate and support both the participant's creativity and communication of ideas and inputs. The range, variety, and depth of the inputs from our participants also showed the appropriateness of our design approach and activities. These findings may be combined with literature and relevant theories to further inform in the selection and application of gameful designs in mHealth apps, or they can be used as a starting point for conducting more participatory workshops focused on co-designing gameful health apps.

Usability Testing of an Interactive Communication Tool to Help Children Express Their Cancer Symptoms.

OBJECTIVE: Sisom is an interactive computer software program that allows children to rate the severity of their cancer symptoms. The study objectives were to describe the usability of Sisom in terms of ease of use, usefulness, and aesthetics and to offer suggestions for improvement. METHOD: A multisite, descriptive study was conducted to describe the usability of Sisom. A purposive sample of children, ages 6 to 12 years, being treated for cancer was recruited. English- and French-speaking children completed the eight tasks in Sisom recorded using Morae software and provided input via an audiotaped interview. Data were downloaded, transcribed verbatim, and analyzed descriptively. RESULTS: Thirty-four children with varying cancers participated. The majority of children liked Sisom and found Sisom easy to use, found it to be helpful in expressing their symptoms, and were satisfied with the aesthetics. Some children provided suggestions for improvement to optimize Sisom use in Canada. CONCLUSIONS: Children's positive responses and desire to use Sisom again suggest that future research should be directed toward implementing and evaluating its effectiveness in a variety of settings.

A person-centered integrated care quality framework, based on a qualitative study of patients' evaluation of care in light of chronic care ideals.

BACKGROUND: Person-Centered Integrated Care (PC-IC) is believed to improve outcomes and experience for persons with multiple long-term and complex conditions. No broad consensus exists regarding how to capture the patient-experienced quality of PC-IC. Most PC-IC evaluation tools focus on care events or care in general. Building on others' and our previous work, we outlined a 4-stage goal-oriented PC-IC process ideal: 1) Personalized goal setting 2) Care planning aligned with goals 3) Care delivery according to plan, and 4) Evaluation of goal attainment. We aimed to explore, apply, refine and operationalize this quality of care framework. METHODS: This paper is a qualitative evaluative review of the individual Patient Pathways (iPP) experiences of 19 strategically chosen persons with multimorbidity in light of ideals for chronic care. The iPP includes all care events, addressing the persons collected health issues, organized by time. We constructed iPPs based on the electronic health record (from general practice, nursing services, and hospital) with patient follow-up interviews. The application of the framework and its refinement were parallel processes. Both were based on analysis of salient themes in the empirical material in light of the PC-IC process ideal and progressively more informed applications of themes and questions. RESULTS: The informants consistently reviewed care quality by how care supported/ threatened their long-term goals. Personal goals were either implicit or identified by "What matters to you?" Informants expected care to address their long-term goals and placed responsibility for care quality and delivery at the system level. The PC-IC process framework exposed system failure in identifying long-term goals, provision of shared long-term multimorbidity care plans, monitoring of care delivery and goal evaluation. The PC-IC framework includes descriptions of ideal care, key questions and literature references for each stage of the PC-IC process. This first version of a PC-IC process framework needs further validation in other settings. CONCLUSION: Gaps in care that are invisible with event-based quality of care frameworks become apparent when evaluated by a long-term goal-driven PC-IC process framework. The framework appears meaningful to persons with multimorbidity.

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.

The Effect of Cancer Patients' and Their Family Caregivers' Physical and Emotional Symptoms on Caregiver Burden.

BACKGROUND: Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. OBJECTIVE: The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. METHODS: Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. RESULTS: There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P < .01), fatigue (P < .01), and symptoms (P < .01) were significantly associated with higher caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. CONCLUSION: Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. IMPLICATIONS FOR PRACTICE: Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.

Developing Technology to Mobilize Personal Strengths in People with Chronic Illness: Positive Codesign Approach.

BACKGROUND: Emerging research from psychology and the bio-behavioral sciences recognizes the importance of supporting patients to mobilize their personal strengths to live well with chronic illness. Positive technology and positive computing could be used as underlying design approaches to guide design and development of new technology-based interventions for this user group that support mobilizing their personal strengths. OBJECTIVE: A codesigning workshop was organized with the aim to explore user requirements and ideas for how technology can be used to help people with chronic illness activate their personal strengths in managing their everyday challenges. METHODS: Thirty-five participants from diverse backgrounds (patients, health care providers, designers, software developers, and researchers) participated. The workshop combined principles of (1) participatory and service design to enable meaningful participation and collaboration of different stakeholders and (2) an appreciative inquiry methodology to shift participants' attention to positive traits, values, and aspects that are meaningful and life-giving and stimulate participants' creativity, engagement, and collaboration. Utilizing these principles, participants were engaged in group activities to develop ideas for strengths-supportive tools. Each group consisted of 3-8 participants with different backgrounds. All group work was analysed using thematic analyses. RESULTS: Participants were highly engaged in all activities and reported a wide variety of requirements and ideas, including more than 150 personal strength examples, more than 100 everyday challenges that could be addressed by using personal strengths, and a wide range of functionality requirements (eg, social support, strength awareness and reflection, and coping strategies). 6 concepts for strength-supportive tools were created. These included the following: a mobile app to support a person to store, reflect on, and mobilize one's strengths (Strengths treasure chest app); "empathy glasses" enabling a person to see a situation from another person's perspective (Empathy Simulator); and a mobile app allowing a person to receive supportive messages from close people in a safe user-controlled environment (Cheering squad app). Suggested design elements for making the tools engaging included: metaphors (eg, trees, treasure island), visualization techniques (eg, dashboards, color coding), and multimedia (eg, graphics). Maintaining a positive focus throughout the tool was an important requirement, especially for feedback and framing of content. CONCLUSIONS: Combining participatory, service design, and appreciative inquiry methods were highly useful to engage participants in creating innovative ideas. Building on peoples' core values and positive experiences empowered the participants to expand their horizons from addressing problems and symptoms, which is a very common approach in health care today, to focusing on their capacities and that which is possible, despite their chronic illness. The ideas and user requirements, combined with insights from relevant theories (eg, positive technology, self-management) and evidence from the related literature, are critical to guide the development of future more personalized and strengths-focused self-management tools.

Exploring Working Relationships in Mental Health Care via an E-Recovery Portal: Qualitative Study on the Experiences of Service Users and Health Providers.

BACKGROUND: The quality of working relationships between service users and health providers is fundamental in the processes of recovery in mental health. How Internet-based interventions will influence these relationships for persons with long-term care needs, and the measures that can be taken to maintain and enhance working relationships through Internet, is still not well understood. OBJECTIVE: The aim of this study was to gain insights into how service users and health providers experience their working relationships when they are offered the option of supplementing ongoing collaboration with an e-recovery portal. METHODS: In this exploratory and descriptive study, an e-recovery portal was used by service users and their health providers in 2 mental health communities in Norway for at least 6 months and at most 12 months (2015-2016). The portal consists of secure messaging, a peer support forum, and a toolbox of resources for working with life domains including status, goals and activities, network map, crisis plan, and exercises. The portal was owned and managed by the service user while health providers could remotely access parts of the service user-generated content. The participants could use the portal in whatever way they wished, to suit their collaboration. Data from 6 focus groups, 17 individual interviews, and an interview with 1 dyad about their experiences of use of the portal over the study period were inductively coded and thematically analyzed. RESULTS: The thematic analysis resulted in 2 main themes: (1) new relational avenues and (2) out of alignment, illustrated by 8 subthemes. The first main theme is about dyads who reported new and enriching ways of working together through the portal, particularly related to written communication and use of the goal module. Illustrative subthemes are ownership, common ground, goals and direction, and sense of presence and availability. The second main theme illuminates the difficulties that arose when service users' and health providers' expectations for portal use were not aligned, and the consequences of not addressing these difficulties. Illustrative subthemes are initiative and responsibility, waiting for the other, feeling overwhelmed, and clarifications and agreements. CONCLUSIONS: The degree to which dyads benefited from using the e-recovery portal appeared to be mainly associated with the degree to which the dyads' relations were open and flexible before the portal was introduced. For those who experienced frustrations, the portal may have both exposed and added to suboptimal working relationships. Use of the goal module appeared to strengthen the person-centered nature of collaboration. A key question is how health providers balance between enabling service users' greater control over their care, without relinquishing responsibility for the quality of the working relationship, also when using an e-recovery portal. Implications for implementation are discussed.

Shifting Practices Toward Recovery-Oriented Care Through an E-Recovery Portal in Community Mental Health Care: A Mixed-Methods Exploratory Study.

BACKGROUND: Mental health care is shifting from a primary focus on symptom reduction toward personal recovery-oriented care, especially for persons with long-term mental health care needs. Web-based portals may facilitate this shift, but little is known about how such tools are used or the role they may play in personal recovery. OBJECTIVE: The aim was to illustrate uses and experiences with the secure e-recovery portal "ReConnect" as an adjunct to ongoing community mental health care and explore its potential role in shifting practices toward recovery. METHODS: ReConnect was introduced into two Norwegian mental health care communities and used for 6 months. The aim was to support personal recovery and collaboration between service users and health care providers. Among inclusion criteria for participation were long-term care needs and at least one provider willing to interact with service users through ReConnect. The portal was designed to support ongoing collaboration as each service user-provider dyad/team found appropriate and consisted of (1) a toolbox of resources for articulating and working with recovery processes, such as status/goals/activities relative to life domains (eg, employment, social network, health), medications, network map, and exercises (eg, sleep hygiene, mindfulness); (2) messaging with providers who had partial access to toolbox content; and (3) a peer support forum. Quantitative data (ie, system log, questionnaires) were analyzed using descriptive statistics. Qualitative data (eg, focus groups, forum postings) are presented relative to four recovery-oriented practice domains: personally defined recovery, promoting citizenship, working relationships, and organizational commitment. RESULTS: Fifty-six participants (29 service users and 27 providers) made up 29 service user-provider dyads. Service users reported having 11 different mental health diagnoses, with a median 2 (range 1-7) diagnoses each. The 27 providers represented nine different professional backgrounds. The forum was the most frequently used module with 1870 visits and 542 postings. Service users' control over toolbox resources (eg, defining and working toward personal goals), coupled with peer support, activated service users in their personal recovery processes and in community engagement. Some providers (30%, 8/27) did not interact with service users through ReConnect. Dyads that used the portal resources did so in highly diverse ways, and participants reported needing more than 6 months to discover and adapt optimal uses relative to their individual and collaborative needs. CONCLUSIONS: Regardless of providers' portal use, service users' control over toolbox resources, coupled with peer support, offered an empowering common frame of reference that represented a shift toward recovery-oriented practices within communities. Although service users' autonomous use of the portal can eventually influence providers in the direction of recovery practices, a fundamental shift is unlikely without broader organizational commitments aligned with recovery principles (eg, quantified goals for service user involvement in care plans).

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.

Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms.

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.

Patient Insights Into the Design of Technology to Support a Strengths-Based Approach to Health Care.

BACKGROUND: An increasing number of research studies in the psychological and biobehavioral sciences support incorporating patients' personal strengths into illness management as a way to empower and activate the patients, thus improving their health and well-being. However, lack of attention to patients' personal strengths is still reported in patient-provider communication. Information technology (IT) has great potential to support strengths-based patient-provider communication and collaboration, but knowledge about the users' requirements and preferences is inadequate. OBJECTIVE: This study explored the aspirations and requirements of patients with chronic conditions concerning IT tools that could help increase their awareness of their own personal strengths and resources, and support discussion of these assets in consultations with health care providers. METHODS: We included patients with different chronic conditions (chronic pain, morbid obesity, and chronic obstructive pulmonary disease) and used various participatory research methods to gain insight into the participants' needs, values, and opinions, and the contexts in which they felt strengths-based IT tools could be used. RESULTS: Participants were positive toward using technology to support them in identifying and discussing their personal strengths in clinical consultation, but also underlined the importance of fitting it to their specific requirements and the right contexts of use. Participants recommended that technology be designed for use in preconsultation settings (eg, at home) and felt that it should support them in both identifying strengths and in finding out new ways how strengths can be used to attain personal health-related goals. Participants advocated use of technology to support advance preparation for consultations and empower them to take a more active role. IT tools were suggested to be potentially useful in specific contexts, including individual or group consultations with health care providers (physician, nurse, specialist, care team) in clinical consultations but also outside health care settings (eg, as a part of a self-management program). Participants' requirements for functionality and design include, among others: providing examples of strengths reported by other patients with chronic conditions, along with an option to extend the list with personal examples; giving an option to briefly summarize health-related history; using intuitive, easy-to-use but also engaging user interface design. Additionally, the findings are exemplified with a description of a low-fidelity paper prototype of a strengths-based tool, developed with participants in this study. CONCLUSIONS: Users requirements for IT support of a strengths-based approach to health care appear feasible. The presented findings reflect patients' values and lists potential contexts where they feel that technology could facilitate meaningful patient-provider communication that focuses not just on symptoms and problems, but also takes into account patients' strengths and resources. The findings can be used to inform further development of IT tools for use in clinical consultations.

Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer.

BACKGROUND: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a "traditional" conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym "Si det som det er" or "Tell it how it is") is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a "voice" in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. OBJECTIVE: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. METHODS: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children's views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. RESULTS: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. CONCLUSIONS: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels.

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).

Recruitment challenges in clinical research including cancer patients and their caregivers. A randomized controlled trial study and lessons learned.

BACKGROUND: 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. METHODS: 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. RESULTS: 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." CONCLUSIONS: In this study, opt-out recruitment strategies appeared to be the most effective. TRIAL REGISTRATION: Registration number NCT01867723 , registered February 2012.

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.

The chronic care model and technological research and innovation: a scoping review at the crossroads.

BACKGROUND: 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? OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Evaluation of Sisom: A computer-based animated tool to elicit symptoms and psychosocial concerns from children with cancer.

PURPOSE: In pediatric oncology, clear communication regarding symptom occurrence between clinicians and children is essential in order to provide safe and effective care. Mobile technology provides a means to enhance the standard clinician-patient interview, particularly among children, who are well versed in the use of technology. To help children identify and voice their concerns in the health care setting, researchers created Sisom, an animated computer tool for children and young people with serious and chronic illnesses. The purposes of this study of 100 dyads of patients 7-12 years of age and their parents were to: compare participants' reports of symptom occurrence using Sisom to a standard symptom checklist and determine the time requirements, ease of use, and perceived usefulness of the Sisom tool by children with cancer and their parents. METHODS: Child and parent participants completed both Sisom and the Memorial Symptom Assessment Scale. Symptoms on the two tools were compared and 20 items were similar to allow for comparisons. RESULTS: Children reported a significantly higher number of these 20 symptoms using Sisom as compared to the MSAS (i.e., 6.8 versus 4.9 symptoms, p < 0.001). A similar pattern was noted for parental proxy reports (i.e., 8.7 versus 5.7 symptoms, p < 0.001). Sisom was completed in less than 30 min, with high ratings of ease of use and perceived usefulness from parent participants. CONCLUSIONS: Sisom provides a systematic and engaging method to elicit symptom reports from children for use in clinical care and research.

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).