Dataset Information

Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews.

ABSTRACT:

Background

Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies.

Objective

This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams.

Methods

Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis.

Results

We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into illness experiences, and (4) readiness to engage appears critical for clinic implementation.

Conclusions

A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.

SUBMITTER: Grande SW

PROVIDER: S-EPMC6406228 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews.

Grande Stuart W SW Longacre Meghan R MR Palmblad Karin K Montan Meera V MV Berquist Rikard P RP Hager Andreas A Kotzbauer Greg G

JMIR mHealth and uHealth 20190222 2

<h4>Background</h4>Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies.<h4>Objective</h4>This study aims to examine how an mH ...[more]

PMID: 30794202

Similar Datasets

Project description:OBJECTIVES:This study aimed to investigate Australian pharmacists' views about their role in physician-assisted suicide (PAS), their ethical and legal concerns and overall thoughts about PAS in pharmacy. DESIGN:Semistructured interviews of pharmacists incorporating a previously validated vignette and thematic analysis. SETTING:Australia (face to face or phone call). PARTICIPANTS:40 Australian Health Practitioner Regulation Agency registered pharmacists, majority women (65%) with varied experiences in community, hospital, industry, academia, government and other fields. RESULTS:Emergent themes from the interviews were: legal and logistical framework, ethical framework, training and guidance and healthcare budget. More than half the participants supported the role of pharmacists in the supply of medicines for PAS, while less than half were either against or unsure of the legislation of PAS in Australia. Shared concerns included transparency of prescribing practices and identification of authorised physicians involved in PAS, which were consistent with existing literature. Religious faith, emotion and professional autonomy were key indicators for the implementation of conscientious objection to the supply of medicines in PAS. Re-evaluation of current guidelines, pharmacist training and government reimbursement was also of significance from participants' perspectives. CONCLUSION:This study revealed current concerns of practising pharmacists in Australia, including previously undocumented perspectives on the pharmacoeconomic impact of and barriers relating to PAS. The need for training of all healthcare professionals involved, the provision of clear guidelines, including regulation around storage, administration and disposal of medicines dispensed for PAS and the updating of current therapeutic guidelines around end-of-life care were all issues delineated by this study. These findings highlighted the need for current and future policies to account for all stakeholders involved in PAS, not solely prescribers.

Project description:Rationale: Increasingly, patients are surviving acute respiratory failure (ARF), prompting the need to better understand standardized outcome measures commonly used during ARF follow-up studies. Objectives: Investigate standardized outcome measures (patient-reported physical and mental health measures, and cognitive testing) compared with findings from semistructured, qualitative interviews. Methods: As part of two ARF multicenter follow-up studies, standardized outcome measures were obtained, followed by qualitative evaluation via an in-depth, semistructured interview conducted and coded by two independent researchers. Qualitative interviews revealed the following post-ARF survivorship themes: physical impairment; anxiety, depression, and post-traumatic stress disorder symptoms; and cognitive impairment. Scores from standardized measures related to these themes were compared for ARF survivors reporting versus not reporting these themes in their qualitative interviews. Results: Of 59 invited ARF survivors, 48 (81%) completed both standardized outcome measures and qualitative interviews. Participants' median (interquartile range) age was 53 (43-64) years; 54% were female, and 88% were living independently before hospitalization. The two independent reviewers classifying the presence or absence of themes from the qualitative interviews had excellent agreement (??=?0.80). There were significantly worse scores on standardized outcome measures for survivors reporting (vs. not reporting) physical and mental health impairments in their qualitative interviews. However, standardized cognitive test scores did not differ between patients reporting versus not reporting cognitive impairments in their qualitative interviews. Conclusions: These findings support the use of recommended, commonly used standardized outcome measures for physical and mental health impairments in ARF survivorship research. However, caution is needed in interpreting self-reported cognitive function compared with standardized cognitive testing.

Project description:ObjectivesThis study aimed to examine how patients perceive shared decision-making regarding CT scan referral and use of the five Choosing Wisely questions with their general practitioner (GP).DesignThis is a qualitative exploratory study using semistructured interviews.SettingThis study was conducted in a large metropolitan public healthcare organisation in urban Australia.ParticipantsFollowing purposive sampling, 20 patients and 2 carers participated. Patient participants aged 18 years or older were eligible if they were attending the healthcare organisation for a CT scan and referred by their GP. Carers/family were eligible to participate when they were in the role of an unpaid carer and were aged 18 years or older. Participants were required to speak English sufficiently to provide informed consent. Participants with cognitive impairment were excluded.FindingsEighteen interviews were conducted with the patient only. Two interviews were conducted with the patient and the patient's carer. Fourteen participants were female. Five themes resulted from the thematic analysis: (1) needing to know, (2) questioning doctors is not necessary, (3) discussing scans is not required, (4) uncertainty about questioning and (5) valuing the Choosing Wisely questions. Participants reported that they presented to their GP with a health problem that they needed to understand and address. Participants accepted their GPs decision to prescribe a CT scan to identify the nature of their problem. They reported ambivalence about engaging in shared decision-making with their doctor, although many participants reported valuing the Choosing Wisely questions.ConclusionsShared decision-making is an important principle underpinning Choosing Wisely. Practice implementation requires understanding patients' motivations to engage in shared decision-making with a focus on attitudes, beliefs, knowledge and emotions. Systems-level support and education for healthcare practitioners in effective communication is important. However, this needs to emphasise communication with patients who have varying degrees of motivation to engage in shared decision-making and Choosing Wisely.

Project description:BackgroundLifelong learning is embedded in the culture of medicine, but there are limited tools currently available for many clinicians, including hospitalists, to help improve their own practice. Although there are requirements for continuing medical education, resources for learning new clinical guidelines, and developing fields aimed at facilitating peer-to-peer feedback, there is a gap in the availability of tools that enable clinicians to learn based on their own patients and clinical decisions.ObjectiveThe aim of this study was to explore the technologies or modifications to existing systems that could be used to benefit hospitalist physicians in pursuing self-assessment and improvement by understanding physicians' current practices and their reactions to proposed possibilities.MethodsSemistructured interviews were conducted in two separate stages with analysis performed after each stage. In the first stage, interviews (N=12) were conducted to understand the ways in which hospitalist physicians are currently gathering feedback and assessing their practice. A thematic analysis of these interviews informed the prototype used to elicit responses in the second stage.ResultsClinicians actively look for feedback that they can apply to their practice, with the majority of the feedback obtained through self-assessment. The following three themes surrounding this aspect were identified in the first round of semistructured interviews: collaboration, self-reliance, and uncertainty, each with three related subthemes. Using a wireframe, the second round of interviews led to identifying the features that are currently challenging to use or could be made available with technology.ConclusionsBased on each theme and subtheme, we provide targeted recommendations for use by relevant stakeholders such as institutions, clinicians, and technologists. Most hospitalist self-assessments occur on a rolling basis, specifically using data in electronic medical records as their primary source. Specific objective data points or subjective patient relationships lead clinicians to review their patient cases and to assess their own performance. However, current systems are not built for these analyses or for clinicians to perform self-assessment, making this a burdensome and incomplete process. Building a platform that focuses on providing and curating the information used for self-assessment could help physicians make more accurately informed changes to their own clinical practice and decision-making.

Project description:ObjectiveThis study aims to better understand the current practice of clinical guideline adaptation and identify challenges raised in this process, given that published adapted clinical guidelines are generally of low quality, poorly reported and not based on published frameworks.DesignA qualitative study based on semistructured interviews. We conducted a framework analysis for the adaptation process, and thematic analysis for participants' views and experiences about adaptation process.SettingNine guideline development organisations from seven countries.ParticipantsGuideline developers who have adapted clinical guidelines within the last 3 years. We identified potential participants through published adapted clinical guidelines, recommendations from experts, and a review of the Guideline International Network Conference attendees' list.ResultsWe conducted ten interviews and identified nine adaptation methodologies. The reasons for adapting clinical guidelines include developing de novo clinical guidelines, implementing source clinical guidelines, and harmonising and updating existing clinical guidelines. We identified the following core steps of the adaptation process (1) selection of scope and source guideline(s), (2) assessment of source materials (guidelines, recommendations and evidence level), (3) decision-making process and (4) external review and follow-up process. Challenges on the adaptation of clinical guidelines include limitations from source clinical guidelines (poor quality or reporting), limitations from adaptation settings (lacking resources or skills), adaptation process intensity and complexity, and implementation barriers. We also described how participants address the complexities and implementation issues of the adaptation process.ConclusionsAdaptation processes have been increasingly used to develop clinical guidelines, with the emergence of different purposes. The identification of core steps and assessment levels could help guideline adaptation developers streamline their processes. More methodological research is needed to develop rigorous international standards for adapting clinical guidelines.

Project description:BackgroundMental illness is a growing concern within many college campuses. Limited access to therapy resources, along with the fear of stigma, often prevents students from seeking help. Introducing supportive interventions, coping strategies, and mitigation programs might decrease the negative effects of mental illness among college students.ObjectiveMany college students find social support for a variety of needs through social media platforms. With the pervasive adoption of social media sites in college populations, in this study, we examine whether and how these platforms may help meet college students' mental health needs.MethodsWe first conducted a survey among 101 students, followed by semistructured interviews (n=11), of a large public university in the southeast region of the United States to understand whether, to what extent, and how students appropriate social media platforms to suit their struggle with mental health concerns. The interviews were intended to provide comprehensive information on students' attitudes and their perceived benefits and limitations of social media as platforms for mental health support.ResultsOur survey revealed that a large number of participating students (71/101, 70.3%) had recently experienced some form of stress, anxiety, or other mental health challenges related to college life. Half of them (52/101, 51.5%) also reported having appropriated some social media platforms for self-disclosure or help, indicating the pervasiveness of this practice. Through our interviews, we obtained deeper insights into these initial observations. We identified specific academic, personal, and social life stressors; motivations behind social media use for mental health needs; and specific platform affordances that helped or hindered this use.ConclusionsStudents recognized the benefits of social media in helping connect with peers on campus and promoting informal and candid disclosures. However, they argued against complete anonymity in platforms for mental health help and advocated the need for privacy and boundary regulation mechanisms in social media platforms supporting this use. Our findings bear implications for informing campus counseling efforts and in designing social media-based mental health support tools for college students.

Dataset Information

Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews.

Background

Objective

Methods

Results

Conclusions

Publications

Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure