The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis

Abstract Background The diagnostic odyssey for people with a rare disease is well known, but difficulties do not stop at diagnosis. Here we investigate the experience of people, or parents of children with a diagnosed mitochondrial respiratory chain disorder (MRCD) in the management of their disease. The work complements ongoing projects around implementation of consensus recommendations for management of people with MRCD. People with or caring for a child with a formally diagnosed MRCD were invited to take part in an hour-long focus group held via videoconference. Questions elicited experiences of receiving management advice or information specific to their MRCD in four areas drawn from the consensus recommendations: diet and supplements, exercise, access to social services, and mental health. Sessions were audio-recorded, transcribed and analysed using a combination of inductive and deductive coding. Results Focus groups were conducted with 20 participants from five Australian states in June–September 2020. Fourteen adults with a MRCD (three of whom also had a child with a MRCD), and six who cared for a child with a MRCD took part. The overarching finding was that of the need for ongoing negotiation to access the advice and service required to manage their condition. The nature of these negotiations varied across contexts but mostly related to joint decision-making, and more commonly, the need to advocate for their care with non-specialist services (e.g., dieticians, schools). The effort required for this self-advocacy was a prominent theme. While most participants reported receiving adequate advice around supplements, and to a lesser extent diet and exercise, the majority reported no formal advice around mental health or practical assistance accessing social services. Conclusion These focus groups have revealed several gaps in the system for people with a MRCD, interacting with care providers after diagnosis. Focus group participants had to negotiate with a range of different stakeholders in order to secure appropriate advice or services. Notable was the gap in appropriate generalist services (e.g., dieticians) with sufficient knowledge of MRCD to support people with their day-to-day challenges.

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Identifying and describing a model region to evaluate the impact of telemedicine

European Journal of Public Health ◽

10.1093/eurpub/ckz185.427 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

L Harst ◽

S Oswald ◽

P Timpel

Keyword(s):

Health Care ◽

Focus Group ◽

Focus Groups ◽

Health Care Providers ◽

Rural Areas ◽

Demographic Data ◽

Care Providers ◽

Age Related ◽

Model Region ◽

The Impact

Abstract Background Telemedicine solutions providing patient-centered care over distance need to be integrated into the regional setting. The acceptance by both providers and patients hat to be continuously evaluated using methods of participatory implementation research. In controlled trials, often taking place in laboratory settings, these methods cannot be applied. In the following, research in progress is presented. Methods Based on socio-demographic data, epidemiology prevalence of age-related chronic diseases and data on the value of health care provision in Saxony, Germany a model region was chosen. Then, a focus group (n = 6) was conducted to differentiate the results and analyze the health networks of patients. For this, network maps putting the individual in the middle and his/her sources of information and support in case of illness in concentric circles around it, were used. The focus group was audiotaped, transcribed and analyzed by two researchers using MaxQDA. Results With a mean age of 47.8 years (n = 17,431), high prevalence of diabetes (>15.85 %) and hypertension (>39.1%) and an expected shortage of primary physicians in 2030, the town of Kamenz is a mirror image of the current health care challenges in rural areas of Saxony. Participants of the focus groups also stated problems in finding a primary physician or a dentist. Compensatory behavior, such as traveling large distances, relying on self-researched online diagnoses and immediately going to the emergency room for medical support was described. According to the network maps, primary sources of support in case of illness are partners and relatives, yet there is little connection between those and health care providers, as well as between different medical specialists. Conclusions The results will lead to potential use cases of telemedicine to be included into a standardized questionnaire for the assessment of telemedicine readiness in the model region. Key messages Telemedicine implementation in a rural area can be studied using a participatory approach. Focus groups and network maps are useful qualitative methods for participatory research and can inform the design of quantitative measurements.

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Defining user needs for an electronic tool to improve chemotherapy-related toxicity management.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.7_suppl.157 ◽

2016 ◽

Vol 34 (7_suppl) ◽

pp. 157-157 ◽

Cited By ~ 2

Author(s):

Rebecca M. Prince ◽

Laura Parente ◽

Anthony Soung Yee ◽

Melanie Powis ◽

Katherine Enright ◽

...

Keyword(s):

Focus Groups ◽

Field Study ◽

Current System ◽

Primary Care Providers ◽

Management Tool ◽

Self Management ◽

User Needs ◽

Care Providers ◽

Electronic Tool ◽

Management Advice

157 Background: Cancer drugs are associated with toxicities which can negatively impact patients’ (pts) quality of life, outcomes and increase acute care use (ACU). There is increasing interest in leveraging technology to solve clinical problems in healthcare. We hypothesized that an electronic tool (toxicity module) targeting management of chemotherapy toxicities could decrease ACU by facilitating more effective symptom management. Methods: Participatory design methodology consisting of end user needs assessment through ethnographic field study (shadowing and in-depth interviews) and focus groups was used to inform design of an interactive prototype toxicity module. Oncology pts and their caregivers, and health care providers (HCPs) including oncologists, oncology nurses and primary care providers were included in all stages of development. Contemporaneous notes were taken during ethnography while focus groups were also audio recorded. Thematic analysis through ideation sessions and time-of-day exercises allowed identification of overarching issues. Results: Eight pts and 8 HCPs participated in the ethnographic field study. Two focus groups, one with 7 pts, one with 4 HCPs were held. Most themes were common to both pts and HCPs; gaps and barriers in the current system, need for decision aids, improved HCP communication and options in care delivery, and access to credible information delivered in a timely, secure manner and integrated into existing systems. Additionally, pts further identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious and wanting to be more empowered; HCPs identified accountability as an issue. These themes informed development of a prototype for a web-based toxicity management tool, which has served the purpose of defining user needs for symptom tracking, self-management advice, and timely communication with an oncology provider. Iterative evaluation over 2 rounds of usability testing is currently underway. Conclusions: An electronic tool that integrates just-in-time self-management advice and oncology provider support into routine care may address some of the gaps identified in the current system for managing chemotherapy toxicity.

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Virtual Reality Cognitive Therapy in Inpatient Psychiatric Wards: Protocol for a Qualitative Investigation of Staff and Patient Views Across Multiple National Health Service Sites

JMIR Research Protocols ◽

10.2196/20300 ◽

2020 ◽

Vol 9 (8) ◽

pp. e20300

Author(s):

Poppy Brown ◽

Felicity Waite ◽

Sinéad Lambe ◽

Laina Rosebrock ◽

Daniel Freeman

Keyword(s):

Mental Health ◽

Virtual Reality ◽

National Health Service ◽

Focus Group ◽

Health Service ◽

Focus Groups ◽

Cognitive Therapy ◽

National Health ◽

Psychiatric Hospitals ◽

Implementation Framework

Background Patients in psychiatric wards typically have very limited access to individual psychological therapy. Inpatients often have significant time available, and an important transition back to everyday life to prepare for—but historically, there have been few trained therapists available on wards for the delivery of evidence-based therapy. Automated virtual reality (VR) therapy may be one route to increase the provision of powerful psychological treatments in psychiatric hospitals. The gameChange automated VR cognitive therapy is targeted at helping patients overcome anxious avoidance and re-engage in everyday situations (such as walking down the street, taking a bus, or going to a shop). This treatment target may fit well for many patients preparing for discharge. However, little is known about how VR therapy may be viewed in this setting. Objective The objectives of the study are to explore psychiatric hospital staff and patients’ initial expectations of VR therapy, to gather patient and staff views of an automated VR cognitive therapy (gameChange) after briefly experiencing it, and to identify potential differences across National Health Service (NHS) mental health trusts for implementation. Guided by an implementation framework, the knowledge gained from this study will be used to assess the feasibility of VR treatment adoption into psychiatric hospitals. Methods Focus groups will be conducted with NHS staff and patients in acute psychiatric wards at 5 NHS mental health trusts across England. Staff and patients will be interviewed in separate groups. Individual interviews will also be conducted when preferred by a participant. Within each of the 5 trusts, 1 to 2 wards will be visited. A total of 8-15 staff and patients per ward will be recruited, with a minimum total of 50 staff and patients recruited across all sites. Focus group questions have been derived from the nonadoption, abandonment, and challenges to the scale-up, spread, and sustainability (NASSS) framework. Focus groups will discuss expectations of VR therapy before participants are given the opportunity to briefly try the gameChange VR therapy. Questions will then focus on opinions about the therapy and investigate feasibility of adoption, with particular consideration given to site specific issues. A thematic analysis will be conducted. Results As of May 15, 2020, 1 patient focus group has been conducted. Conclusions The study will provide unique insight from patients and staff into the potential for implementing automated VR therapy in psychiatric wards. Perspectives will be captured both on the use of immersive technology hardware and therapy-specific issues in such settings. International Registered Report Identifier (IRRID) DERR1-10.2196/20300

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Design of a Mindfulness Virtual Community: A focus-group analysis

Health Informatics Journal ◽

10.1177/1460458219884840 ◽

2019 ◽

Vol 26 (3) ◽

pp. 1560-1576 ◽

Cited By ~ 5

Author(s):

Christo El Morr ◽

Catherine Maule ◽

Iqra Ashfaq ◽

Paul Ritvo ◽

Farah Ahmad

Keyword(s):

Mental Health ◽

Focus Group ◽

University Students ◽

Focus Groups ◽

Group Analysis ◽

Virtual Community ◽

Cyber Bullying ◽

Mental Illnesses ◽

User Centered Design ◽

Design Features

Mental illnesses are on the rise on campuses worldwide. There is a need for a scalable and economically sound innovation to address these mental health challenges. The aim of this study was to explore university students’ needs and concerns in relation to an online mental health virtual community. Eight focus groups ( N = 72, 55.6% female) were conducted with university students aged 18–47 (mean = 23.38, SD = 5.82) years. Participants were asked about their views in relation to online mental health platform. Three major themes and subthemes emerged: (1) perceived concerns: potential loss of personal encounter and relationships, fear of cyber bullying, engagement challenge, and privacy and distraction; (2) perceived advantages: anonymity and privacy, convenience and flexibility, filling a gap, and togetherness; and (3) desired features: user-centered design, practical trustworthy support, and online moderation. The analysis informed design features for a mindfulness virtual community.

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Primary care and mental health providers’ perceptions of implementation of pharmacogenetics testing for depression prescribing

BMC Psychiatry ◽

10.1186/s12888-020-02919-z ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Bonnie M. Vest ◽

Laura O. Wray ◽

Laura A. Brady ◽

Michael E. Thase ◽

Gregory P. Beehler ◽

...

Keyword(s):

Mental Health ◽

Primary Care ◽

Focus Groups ◽

Implementation Science ◽

Primary Care Providers ◽

Relative Advantage ◽

Genetic Profile ◽

Mental Health Providers ◽

Health Providers ◽

Care Providers

Abstract Background Pharmacogenetic testing (PGx) has the potential to improve the quality of psychiatric prescribing by considering patients’ genetic profile. However, there is limited scientific evidence supporting its efficacy or guiding its implementation. The Precision Medicine in Mental Health (PRIME) Care study is a pragmatic randomized controlled trial evaluating the effectiveness of a specific commercially-available pharmacogenetic (PGx) test to inform antidepressant prescribing at 22 sites across the U.S. Simultaneous implementation science methods using the Consolidated Framework for Implementation Research (CFIR) are integrated throughout the trial to identify contextual factors likely to be important in future implementation of PGx. The goal of this study was to understand providers’ perceptions of PGx for antidepressant prescribing and implications for future implementation. Methods Qualitative focus groups (n = 10) were conducted at the beginning of the trial with Primary Care and Mental Health providers (n = 31) from six PRIME Care sites. Focus groups were audio-recorded and transcribed and data were analyzed using rapid analytic procedures organized by CFIR domains. Results Analysis revealed themes in the CFIR Intervention Characteristics domain constructs of Evidence, Relative Advantage, Adaptability, Trialability, Complexity, and Design that are important for understanding providers’ perceptions of PGx testing. Results indicate: 1) providers had limited experience and knowledge of PGx testing and its evidence base, particularly for psychiatric medications; 2) providers were hopeful that PGx could increase their precision in depression prescribing and improve patient engagement, but were uncertain about how results would influence treatment; 3) providers were concerned about potential misinterpretation of PGx results and how to incorporate testing into their workflow; 4) primary care providers were less familiar and comfortable with application of PGx testing to antidepressant prescribing than psychiatric providers. Conclusions Provider perceptions may serve as facilitators or barriers to implementation of PGx for psychiatric prescribing. Incorporating implementation science into the conduct of the RCT adds value by uncovering factors to be addressed in preparing for future implementation, should the practice prove effective. Trial registration ClinicalTrials.gov ID: NCT03170362; Registered 31 May 2017

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The Impact of Culture, Identity and Intergenerational Connections on Indigenous Youth Mental Health: Qualitative Findings from a Longitudinal Digital Health Community Trial

10.21203/rs.3.rs-956256/v1 ◽

2021 ◽

Author(s):

Susannah Walker ◽

Prasanna Kannan ◽

Jasmin Bhawra ◽

Heather Foulds ◽

Tarun Reddy Katapally

Keyword(s):

Mental Health ◽

Focus Group ◽

Focus Groups ◽

Citizen Science ◽

Culturally Responsive ◽

Indigenous Communities ◽

Youth Mental Health ◽

Active Living ◽

Indigenous Youth ◽

The Impact

Abstract Background: Indigenous youth in settler nations are susceptible to poor mental health due to complex inter-generational systemic inequities. The purpose of this study is to assess the impact of a culturally-responsive, land-based, active living initiative on the mental health of Indigenous youth. Methods: This study is part of Smart Indigenous Youth (SIY), a mixed-methods 5-year longitudinal digital citizen science initiative. SIY embeds culturally-responsive, landbased active living programs into the curricula of high schools in rural Indigenous communities in the western Canadian province of Saskatchewan. In year-1 (Winter 2019), 76 Indigenous youth citizen scientists (13-18 years) from 2 schools participated in the study. At the beginning of the term, each school initiated separate 4-month landbased active living programs specific to their culture, community, geography, and language (Cree and Saulteaux). Before and after the term, focus groups were conducted with the 2 Youth Citizen Scientist Councils, which includes students from both participating schools. This study includes data from focus groups of one participating school, with 11 youth citizen scientists (5 boys, 6 girls). Focus group data were transcribed and analyzed by two independent reviewers using Nvivo to identify themes and subthemes. Both reviewers discussed their thematic analysis to come to a consensus about final findings. Results: Baseline focus group analyses revealed themes demonstrating the importance of Indigenous culture, identity, history, and language. Youth emphasized the impact of loss of language and culture, the importance of being a helper, and the necessity of intergenerational knowledge transfer. Follow-up focus group analyses indicated that cultural school programming led to students expressing positive mental health benefits, increased interest in ceremonies, increased participation in physical activity, and greater knowledge of culture, identity, and ceremonial protocol. Conclusions: Land-based active living can play a critical role in improving Indigenous youth mental health. This study highlights the importance of linking active living with culture and the potential of leveraging citizen-owned ubiquitous tools in implementing interventions in rural communities. Digital citizen science shows promise for supporting Indigenous youth mental health initiatives.

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Perceptions and Attitudes Toward a Mobile Phone App for Mental Health for College Students: Qualitative Focus Group Study (Preprint)

10.2196/preprints.18347 ◽

2020 ◽

Author(s):

Bree E Holtz ◽

Alexis M McCarroll ◽

Katharine M Mitchell

Keyword(s):

Mental Health ◽

College Students ◽

Focus Group ◽

Focus Groups ◽

Mobile Phone ◽

Technology Acceptance ◽

Mobile App ◽

Perceived Usefulness ◽

Future Research ◽

Perceptions And Attitudes

BACKGROUND Many college students who have mental health issues do not receive professional care for various reasons. Students who do not receive help often have both short- and long-term adverse health outcomes. Mobile apps for mental health services such as MySSP, a service provided to college students through their university, may help eliminate barriers to seeking mental health care and result in more positive outcomes for college students. OBJECTIVE This qualitative study aims to better understand college students’ perceptions and attitudes toward the adoption and use of a mobile phone app for mental health, MySSP, using the technology acceptance model (TAM). METHODS A series of nine focus groups were conducted with college students (N=30) between February and May 2019 at a large, public Midwestern university. The moderator’s guide was based on the TAM, and focus group sessions primarily focused on the use and knowledge of apps for mental health, specifically, MySSP. The focus group transcriptions were hand-coded to develop a set of themes that encompassed students’ perceptions and attitudes toward MySSP. RESULTS The analysis of the focus groups suggested the following themes: (1) existing awareness of the app, (2) perceived usefulness, (3) perceived ease of use, (4) attitudes toward apps for mental health and MySSP, and (5) social influence. CONCLUSIONS The results of this study provide deeper insights into the perceptions of a mobile app for mental health among college students. Future research should explore the specific contexts in which an app for mental health will be most effective for college students.

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Digital Health Systems in Maternal Mental Health: A Focus Group Assessment of Patient Needs and Views (Preprint)

10.2196/preprints.20421 ◽

2020 ◽

Author(s):

Alexandra Zingg ◽

Laura Carter ◽

Deevakar Rogith ◽

Amy Franklin ◽

Sudhakar Selvaraj ◽

...

Keyword(s):

Mental Health ◽

Focus Group ◽

Digital Technology ◽

Postnatal Care ◽

Maternal Mental Health ◽

Healthcare Management ◽

Digital Tools ◽

Easy Access ◽

Care Providers ◽

Depressive Episodes

BACKGROUND Peripartum depression has an incidence rate of approximately 11% among pregnant women and new mothers in the U.S, yet many cases go undiagnosed and untreated due to psychosocial and logistical barriers. The interdisciplinary nature of PPD management presents a challenging scenario for communication and coordination between care providers and patients. Digital technologies offer many opportunities to improve mental healthcare management for women seeking pre- and-postnatal care. They provide a discrete, practical medium that is well-suited for the sensitive nature of mental health. However, current digital interventions in this domain provide suboptimal support and their responsiveness to end user needs is quite limited. OBJECTIVE Our objective is to map the terrain of information needs of women seeking pre-and-postnatal care, specifically for the management of their mental health. Ultimately, we will apply the derived insights to inform our development efforts of a novel digital solution to be used in an academic clinical setting. METHODS This qualitative study consists of semi-structured focus group interviews with a total of nine patients receiving care at an academic Obstetrics and Gynecology clinic. Discussion questions covered topics such as smartphone use and pregnancy apps. A total of two sessions were conducted and audio recorded. Data from the recordings were analyzed through thematic analysis. Overarching themes and views from the sessions were annotated. A survey was also administered to assess participants’ information seeking behavior and use of popular applications. RESULTS Access to smartphones and data plans was not an issue for participants. All used at least one pregnancy app, and three used additional health apps such as pedometers. Easy access to informational and human resources such as evidenced-based pregnancy information, their healthcare providers, and their peers was common across participants. The sense of community offered in discussion boards was also important to participants. Lack of postpartum support and limited personalization of user experience in current digital tools were identified as gaps and barriers for management of PPD and other mental health disorders. Digital technology features recommended by participants were: 1) a journaling feature, 2) online library of keywords linking to credible information, 3) a responsive bi-directional communication pathway to interact with their clinical team, and 4) personalized support for second pregnancy, diabetes, and prior depressive episodes. CONCLUSIONS Users prefer digital technology systems that go beyond a generic approach. They also want these systems to be adaptable to their needs at the moment, whether it is consulting with their provider or simply seeking peer support. Future technologies aimed at maternal mental health should focus on the individual needs of patients, while at the same time offering them common digital tools such as online communities and easy access to reliable information. CLINICALTRIAL N/A

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A participatory mobile application (app) development project with mental health service users and clinicians

Health Education Journal ◽

10.1177/0017896918773790 ◽

2018 ◽

Vol 77 (7) ◽

pp. 815-827 ◽

Cited By ~ 4

Author(s):

Gabrielle T McClelland ◽

Martin Fitzgerald

Keyword(s):

Mental Health ◽

Mental Health Service ◽

Focus Group ◽

Health Service ◽

Focus Groups ◽

Mobile App ◽

Evidence Based ◽

Service Users ◽

Personal Support ◽

App Development

Objective: The aim of this study was to establish the utility of a bespoke mobile app for mental health service users and clinicians. Design: Qualitative design using four focus groups. Methods: Work was conducted in three stages. The first stage involved a focus group with mental health service users and eight clinicians from a mental health early intervention service to discuss the utility of a bespoke mobile app. Visual, verbal and written prompts were used to demonstrate a mobile app and to prompt discussion. The results of the focus groups were used to create a ‘visual walk through, non-interactive mock up’ mobile app which was used to aid discussion with the same service users and clinicians in stage 2 focus groups. Stage 3 involved development of a mobile app prototype based on focus group feedback. Results: Key ideas emerging from the focus groups were adopted in the design of the app prototype. These were as follows: the use of colour to convey mood; simple mood tracking using familiar trigger icons; a calendar integrated with the service user’s care plan; a help button linked to personal support; an avatar to personalise the app; and the inclusion of evidence-based information. Conclusion: Digital health technology is an extremely important asset with scope to improve people’s lives when combined with behaviour change techniques. Co-design with service users, clinicians and digital technologists is critical to product design and adoption. The use of quality standard criteria and evidence-based content in app development and evaluation is essential.

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Exploring First-Person Perspectives in Designing a Role-Playing VR Simulation for Bullying Prevention: A Focus Group Study

Frontiers in Virtual Reality ◽

10.3389/frvir.2021.672003 ◽

2021 ◽

Vol 2 ◽

Author(s):

Oyewole Oyekoya ◽

Jan Urbanski ◽

Yaroslava Shynkar ◽

Arifa Baksh ◽

Margaret Etsaghara

Keyword(s):

Mental Health ◽

Virtual Reality ◽

Focus Group ◽

Focus Groups ◽

Children And Adolescents ◽

Reward System ◽

Role Playing ◽

Bullying Prevention ◽

Focus Group Study ◽

Being Bullied

Bullying is a complex and abusive form of violence that has potentially serious social and mental health consequences for children and adolescents. With reference to the Olweus Bullying Circle, this project involves the development of a simulation that will allow students to view themselves in different roles played in bullying situations using a virtual reality setting. Interventions need to explore the perspective of the student who bullies and the student being bullied, as well as the bystander in order to model desirable intervention behavior. The expectation is that through role-playing, the students will explore different perspectives and learn how to respond to bullying situations. Two focus groups were conducted to allow experts to contribute to the design of the bullying prevention simulation and gather suggestions for improvements. Findings from the focus group studies suggest that to create effective bullying prevention, Virtual Reality simulations should consider focusing on role-playing, customization of the characters, environments, scenarios and a scoring/reward system.

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