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Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study.

ABSTRACT: BACKGROUND:Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users' experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users' experiences can inform the design of approaches toward increased motivation for digital self-management. OBJECTIVE:This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. METHODS:A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. RESULTS:Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. CONCLUSIONS:Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case-the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF.

SUBMITTER: Floch J

PROVIDER: S-EPMC7381063 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study.

Floch Jacqueline J Vilarinho Thomas T Zettl Annabel A Ibanez-Sanchez Gema G Calvo-Lerma Joaquim J Stav Erlend E Haro Peter Halland PH Aalberg Asbjørn Lein AL Fides-Valero Alvaro A Bayo Montón José Luis JL

JMIR mHealth and uHealth 20200708 7

<h4>Background</h4>Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users' experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users' experiences can inform the design of approaches toward increased motivation for digital self-management.<h4>Objective</h4>This study aimed to evaluate the self-management of cystic fibrosis (CF ...[more]

PMID: 32673237

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Project description:BackgroundWearable devices permit the continuous, unobtrusive collection of data from children in their natural environments and can transform our understanding of child development. Although the use of wearable devices has begun to emerge in research involving children, few studies have considered families' experiences and perspectives of participating in research of this kind.ObjectiveThrough a mixed methods approach, we assessed parents' and children's experiences of using a new wearable device in the home environment. The wearable device was designed specifically for use with infants and young children, and it integrates audio, electrocardiogram, and motion sensors.MethodsIn study 1, semistructured phone interviews were conducted with 42 parents of children aged 1 month to 9.5 years who completed 2 day-long recordings using the device, which the children wore on a specially designed shirt. In study 2, a total of 110 parents of children aged 2 months to 5.5 years responded to a questionnaire assessing their experience of completing 3 day-long device recordings in the home. Guided by the Digital Health Checklist, we assessed parental responses from both studies in relation to the following three key domains: (1) access and usability, (2) privacy, and (3) risks and benefits.ResultsIn study 1, most parents viewed the device as easy to use and safe and remote visits as convenient. Parents' views on privacy related to the audio recordings were more varied. The use of machine learning algorithms (vs human annotators) in the analysis of the audio data, the ability to stop recordings at any time, and the view that the recordings reflected ordinary family life were some reasons cited by parents who expressed minimal, if any, privacy concerns. Varied risks and benefits were also reported, including perceived child comfort or discomfort, the need to adjust routines to accommodate the study, the understanding gained from the study procedures, and the parent's and child's enjoyment of study participation. In study 2, parents' ratings on 5 close-ended items yielded a similar pattern of findings. Compared with a "neutral" rating, parents were significantly more likely to agree that (1) device instructions were helpful and clear (t109=-45.98; P<.001), (2) they felt comfortable putting the device on their child (t109=-22.22; P<.001), and (3) they felt their child was safe while wearing the device (t109=-34.48; P<.001). They were also less likely to worry about the audio recordings gathered by the device (t108=6.14; P<.001), whereas parents' rating of the burden of the study procedures did not differ significantly from a "neutral" rating (t109=-0.16; P=.87).ConclusionsOn the basis of parents' feedback, several concrete changes can be implemented to improve this new wearable platform and, ultimately, parents' and children's experiences of using child wearable devices in the home setting.

Project description:BackgroundRemote care services and patient empowerment have boosted mobile health (mHealth). A study of user needs related to mHealth for pediatric cystic fibrosis (PCF) identified the set of preferred features mobile apps should support; however, the potential use of PCF apps and their suitability to fit into PCF clinical management remains unexplored.ObjectiveWe examine whether PCF holds potential for the implementation of mHealth care.MethodsThe study is based on a literature review and qualitative analysis of content and was conducted in two parts: (1) we reviewed scientific and gray literature to explore how European countries manage PCF and conducted a qualitative study of 6 PCF units and (2) we performed a systematic review of apps available in the myhealthapps.net repository searching for cystic fibrosis (CF) management and nutrition apps, which we analyzed for characteristics, business models, number of downloads, and usability.ResultsEuropean CF routine care guidelines are acknowledged in most European countries, and treatments are fully covered in almost all countries. The majority of teams in CF units are interdisciplinary. With respect to the systematic review of apps, we reviewed 12 apps for CF management and 9 for general nutrition management in the myhealthapps.net directory. All analyzed apps provided functionalities for recording aspects related to the disease and nutrition such as medication, meals, measurements, reminders, and educational material. None of the apps reviewed in this study supported pancreatic enzyme replacement therapy. CF apps proved to be less appealing and usable than nutrition apps (2.66 [SD 1.15] vs 4.01 [SD 0.90]; P<.001, z-value: -2.6). User needs detected in previous research are partially matched by current apps for CF management.ConclusionsThe health care context for PCF is a unique opportunity for the adoption of mHealth. Well-established clinical guidelines, heterogeneous clinical teams, and coverage by national health care systems provide a suitable scenario for the use of mHealth solutions. However, available apps for CF self-management do not cover essential aspects such as nutrition and education. To increase the adoption of mHealth for CF self-management, new apps should include these features.International registered report identifier (irrid)RR2-10.1136/bmjopen-2016-014931.

Project description:BACKGROUND:Patients with chronic arthritis (CA) ideally apply self-management behaviors between consultations. This enduring, tedious task of keeping track of disease-related parameters, adhering to medication schemes, and engaging in physical therapy may be supported by using a mobile health (mHealth) app. However, further research is needed to determine which self-management features are valued most by adult patients with CA patients. OBJECTIVE:The aim of this study was to determine the preference of features for an mHealth app to support self-management behavior in patients with CA. In addition, we aimed to explore the motives behind these ratings. METHODS:A mixed-methods approach was used to gather information from 31 adult patients (14 females), aged 23 to 71 years (mean 51 [SD 12.16]), with CA. Structured interviews were conducted to gather data pertaining to preferences of app features. Interviews were analyzed qualitatively, whereas ratings for each of the 28 features studied were analyzed quantitatively. RESULTS:In general, patients with CA favored the use of features pertaining to supporting active and direct disease management, (eg, medication intake and detecting and alarming of bad posture), helping them to keep a close watch on their disease status and inform their health care professional (eg, providing a means to log and report disease-related data) and receiving personalized information (eg, offering tailored information based on the patient's health data). Patients strongly disliked features that provide a means of social interaction or provide incentivization for disease-related actions (eg, being able to compare yourself with other patients, cooperating toward a common goal, and receiving encouragement from friends and/or family). Driving these evaluations is the finding that every patient with CA hurts in his/her own way, the way the disease unfolds over time and manifests itself in the patient and social environment is different for every patient, and patients with CA are well aware of this. CONCLUSIONS:We have offered an insight into how patients with CA favor mHealth features for self-management apps. The results of this research can inform the design and development of prospective self-management apps for patients with CA.

Project description:With the popularity of mobile phones, mobile apps have great potential for the management of diabetes, but the effectiveness of current diabetes apps for type 1 diabetes mellitus (T1DM) is poor. No study has explored the reasons for this deficiency from the users' perspective.The aims of this study were to explore the perspectives and needs of T1DM patients and diabetes experts concerning a diabetes app and to design a new T1DM management mobile app.A mixed-methods design combining quantitative surveys and qualitative interviews was used to explore users' needs and perspectives. Experts were surveyed at 2 diabetes conferences using paper questionnaires. T1DM patients were surveyed using Sojump (Changsha ran Xing InfoTech Ltd) on a network. We conducted semistructured, in-depth interviews with adult T1DM patients or parents of child patients who had ever used diabetes apps. The interviews were audio-recorded, transcribed, and coded for theme identification.The expert response rate was 63.5% (127/200). The respondents thought that the reasons for app invalidity were that patients did not continue using the app (76.4%, 97/127), little guidance was received from health care professionals (HCPs; 73.2%, 93/127), diabetes education knowledge was unsystematic (52.8%, 67/127), and the app functions were incomplete (44.1%, 56/127). A total of 245 T1DM patient questionnaires were collected, of which 21.2% (52/245) of the respondents had used diabetes apps. The reasons for their reluctance to use an app were limited time (39%, 20/52), complicated operations (25%, 13/52), uselessness (25%, 13/52), and cost (25%, 13/52). Both the experts and patients thought that the most important functions of the app were patient-doctor communication and the availability of a diabetes diary. Two themes that were useful for app design were identified from the interviews: (1) problems with patients' diabetes self-management and (2) problems with current apps. In addition, needs and suggestions for a diabetes app were obtained. Patient-doctor communication, diabetes diary, diabetes education, and peer support were all considered important by the patients, which informed the development of a prototype multifunctional app.Patient-doctor communication is the most important function of a diabetes app. Apps should be integrated with HCPs rather than stand-alone. We advocate that doctors follow up with their patients using a diabetes app. Our user-centered method explored comprehensively and deeply why the effectiveness of current diabetes apps for T1DM was poor and what T1DM patients needed for a diabetes app and provided meaningful guidance for app design.

Project description:BackgroundNovel approaches in mobile mental health (mHealth) apps that make use of Artificial Intelligence (AI), Ecological Momentary Assessments, and Ecological Momentary Interventions have the potential to support young people in the achievement of mental health and wellbeing goals. However, little is known on the perspectives of young people and mental health experts on this rapidly advancing technology. This study aims to investigate the subjective needs, attitudes, and preferences of key stakeholders towards an AI-informed mHealth app, including young people and experts on mHealth promotion and prevention in youth.MethodsWe used a convergent parallel mixed-method study design. Two semi-structured online focus groups (n = 8) and expert interviews (n = 5) to explore users and stakeholders perspectives were conducted. Furthermore a representative online survey was completed by young people (n = 666) to investigate attitudes, current use and preferences towards apps for mental health promotion and prevention.ResultsSurvey results show that more than two-thirds of young people have experience with mHealth apps, and 60% make regular use of 1-2 apps. A minority (17%) reported to feel negative about the application of AI in general, and 19% were negative about the embedding of AI in mHealth apps. This is in line with qualitative findings, where young people displayed rather positive attitudes towards AI and its integration into mHealth apps. Participants reported pragmatic attitudes towards data sharing and safety practices, implying openness to share data if it adds value for users and if the data request is not too intimate, however demanded transparency of data usage and control over personalization. Experts perceived AI-informed mHealth apps as a complementary solution to on-site delivered interventions in future health promotion among young people. Experts emphasized opportunities in regard with low-threshold access through the use of smartphones, and the chance to reach young people in risk situations.ConclusionsThe findings of this exploratory study highlight the importance of further participatory development of training components prior to implementation of a digital mHealth training in routine practice of mental health promotion and prevention. Our results may help to guide developments based on stakeholders' first recommendations for an AI-informed mHealth app.

Project description:BACKGROUND:Self-management strategies are effective in a number of medical conditions; however, implementation studies have demonstrated adoption into clinical practice can be problematic. The process of implementation was explored during a pilot randomised controlled trial evaluating postpartum blood pressure self-management in women with medicated hypertensive disorders of pregnancy. METHODS:A mixed methods study using semi-structured interviews with a qualitative and a scored (quantitative) component were undertaken as part of a pilot randomised controlled trial (SNAP-HT) in postnatal women with medicated gestational hypertension or pre-eclampsia. Women were randomised to usual care or blood pressure self-management. Self-management entailed daily home blood pressure monitoring and automated medication reduction via telemonitoring. Women from both groups optionally consented to participate in audio-recorded interviews at 4 weeks and 6 months postpartum. Interview questions were developed to explore the proposed benefits of self-management and the constructs of normalisation process theory. Participants provided a score (Likert scale 1-5) for each question and were encouraged to expand upon these answers through further discussion. The interviews were transcribed and analysed using the framework approach. RESULTS:Sixty-eight women, 34 from each randomised group, completed at least one audio-recorded interview. Several overarching themes emerged from analysis of 126 interview transcripts: control; convenience; confidence, communication and knowledge; concern; constraints; and components of the intervention. In the scored component of the analysis, both groups reported feeling more in control of their condition postpartum compared to during pregnancy, more so in those self-managing at both 4 weeks and 6 months: adjusted differences 0.6 (95% confidence interval [CI] 0.2 to 1.1) and 0.7 (95% CI 0.3 to 1.2) respectively. CONCLUSIONS:Interviews and quantitative data showed that self-management enhanced women's sense of control and improved their blood pressure-related anxiety. Prior to taking part, a few women anticipated that home monitoring might increase anxiety, but stated that it had the opposite effect. Self-management was perceived as more flexible and reactive and as enabling more targeted down-titration of medication. These data provide considerable support for blood pressure self-management postpartum and reinforce the effectiveness of the intervention used in this study. TRIAL REGISTRATION:ClinicalTrials.gov: NCT02333240. Prospectively registered on 7 January 2015.

Project description:BackgroundTo support the self-management of heart failure, a team of hospital clinicians, patients, and family caregivers have co-designed the consumer mobile health app, Care4myHeart.ObjectiveThis research aimed to determine patient experiences of using the app to self-manage heart failure.MethodsPatients with heart failure used the app for 14 days on their own smart device in a home setting, following which a mixed-methods evaluation was performed. Eight patients were recruited, of whom six completed the Mobile Application Rating Scale and attended an interview.ResultsThe overall app quality score was "acceptable" with 3.53 of 5 points, with the aesthetics (3.83/5) and information (3.78/5) subscales scoring the highest. The lowest mean score was in the app-specific subscale representing the perceived impact on health behavior change (2.53/5). Frequently used features were weight and fluid restriction tracking, with graphical representation of data particularly beneficial for improved self-awareness and ongoing learning. The use of technology for self-management will fundamentally differ from current practices and require a change in daily routines. However, app use was correlated with potential utility for daily management of illness with benefits of accurate recording and review of personal health data and as a communication tool for doctors to assist with care planning, as all medical information is available in one place. Technical considerations included participants' attitudes toward technology, functionality and data entry issues, and relatively minor suggested changes.ConclusionsThe findings from this usability study suggest that a significant barrier to adoption is the lack of integration of technology into everyday life in the context of already established disease self-management routines. Future studies should explore the barriers to adoption and sustainability of consumer mobile health interventions for chronic conditions, particularly whether introducing such apps is more beneficial at the commencement of a self-management regimen.

Project description:BACKGROUND:Mobile interventions hold promise as an intervention modality to engage children in improving diabetes self-management education, attitudes, and behaviors. OBJECTIVE:This pilot study aimed to explore the usability, acceptability, and feasibility of delivering a mobile diabetes educational tool to parent-child pairs in a clinical setting. METHODS:This mixed methods pilot study comprised two concurrent phases with differing study participants. Phase 1 used user testing interviews to collect qualitative data on the usability and acceptability of the tool. Phase 2 used a single-arm pre- and poststudy design to quantitatively evaluate the feasibility and preliminary efficacy of the intervention. Study participants (English-speaking families with youth aged 5-14 years with insulin-dependent diabetes) were recruited from an urban hospital in Massachusetts, United States. In phase 1, parent-child pairs were invited to complete the intervention together and participate in 90-min user testing interviews assessing the tool's usability and acceptability. Interview transcripts were analyzed using a directed content analysis approach. In phase 2, parent-child pairs were invited to complete the intervention together in the clinical setting. Measures included parental and child knowledge, attitudes, and behaviors related to diabetes management (self-report surveys) and child hemoglobin A1c levels (medical record extractions); data were collected at baseline and 1-month follow-up. Pre- and postoutcomes were compared using paired t tests and the Fisher exact test. RESULTS:A total of 11 parent-child pairs (N=22) participated in phase 1 of the study, and 10 parent-child pairs (N=20) participated in phase 2 of the study. Participants viewed the mobile educational tool as acceptable (high engagement and satisfaction with the layout, activities, and videos) and identified the areas of improvement for tool usability (duration, directions, and animation). CONCLUSIONS:The findings from this pilot study suggest that the mobile educational tool is an informative, engaging, and feasible way to deliver diabetes self-management education to parents and children in an urban hospital setting. Data will inform future iterations of this mobile diabetes educational intervention to improve usability and test intervention efficacy.

Project description:BackgroundBlack young adults suffer from psychological distress at either similar or greater rates than that of White Americans, yet they are seven times less likely to have access to or receive effective treatments. Fortunately, mobile-health (mHealth) technology may transform mental health services and address disparities in mental healthcare. The current study utilized focus groups of Black young adults to inform the development of culturally-adapted mHealth using quantitative and qualitative approaches.MethodsThe study utilized a mixed-methods approach, in that qualitative (i.e., mini focus groups, n=11) and quantitative methods (i.e., self-report surveys) were used to explore the research questions. Participants included African American young adults (n=38, Mage =21). Participants completed self-report questionnaires prior to focus group facilitation. Correlational analyses were used to answer the quantitative research questions, and thematic analysis was used to answer the qualitative research questions.ResultsThe qualitative findings highlighted that sociocultural experiences impact mental health and treatment seeking attitudes. Despite these findings, participants highlighted a variety of desired features and content that should be incorporated into future culturally-adapted mHealth interventions. Participants also highlighted both positive and negative aspects of current mHealth technologies for mental health. Finally, the study found that on average, participants had positive attitudes towards mental health, mental health treatments, and utilizing mHealth for mental health. Participants also had strong desires for culturally-adapted mHealth interventions. Bivariate correlations also revealed significant associations between vicarious online racial discrimination and mHealth attitudes, as well as racial identity and mHealth attitudes.ConclusionsIn summary, the current study highlights that there is an urgent need for mHealth technology for mental health symptoms for African American young adults and presents a variety of features, content, and design/development considerations for future researchers.

Dataset Information

Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study.

Publications

Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study.

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